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Identification of Activities Critical to Examine the Need for Personal Attendant Care for Individuals with Spinal Cord Injury


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IDENTIFICATION OF ACTIVITIES CRI TICAL TO EXAMINE THE NEED FOR PERSONAL ATTENDANT CARE FOR INDIVIDUALS WITH SPINAL CORD INJURY By JAMIE L. POMERANZ A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2005

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Copyright 2005 by Jamie L. Pomeranz

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iii ACKNOWLEDGMENTS I would like to thank the Veterans He alth Administration’s Rehabilitation Outcomes Research Center for funding this study. In particular, I thank Dr. Maude Rittman not only for assisting me in obtaini ng this funding, but also for facilitating the development of my research career. Add itionally, I thank Dr. Pam Duncan for providing me with the much-needed guidance and leader ship throughout my program. Of course I cannot even put into words the eternal gratitu de I have for my committee: I thank Dr. Linda Shaw for always keeping her door open and taking the time to answer all my questions no matter how busy she was. She has been an amazing mentor, colleague, and friend. I am beyond grateful to Dr. Craig Velo zo for teaching me what it takes to be a successful rehabilitation scientist and leadi ng me down that modern measurement path. He is a true model of what it takes to be an outstandi ng individual, researcher and educator. I thank Dr. Horace Sawyer for hi s endless support and guidance as I pursued research and training in Life Care Planning. I thank Dr. A nne Seraphine for all of her support and for being the best statistics prof essor I have ever had. I also thank the Foundation for Life Care Planning Research for funding support and Dr. Paul Deutsch for endorsing my research and allowing me to lear n all aspects of Life Care Planning from the best in the business. I thank all the Life Care Planning experts who took time out of their busy schedules to provide me with benc hmark data related to Personal Attendant Care. I thank Carrie Lindblad and Dr. Andr ea Behrman for assisting me in recruiting veterans to participate in this study. I thank all the veterans for th eir willingness to share

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iv their personal stories for the purpose of this study. I would like to thank my parents, Ilene and Peter, for instilling in me the importance of education and for providing me with unconditional love and support throughout my life. Thanks go to my brother Eric who never lets his developmental disability ge t in the way of being the happiest and most independent individual I know. Thanks go to my other brother, Adam, for always being that someone whom I could look up to and who taught me to always look ahead and never look down. I would like to thank my twin sister Julie whose endless support has and will continue to contribute to all my achievements. And of course I thank my wife, Anni. She is my world and I will never be ab le to truly express my gratitude for always sticking by me no matter how stressful things got She is the true reason I am getting my Ph.D. I also have to say thank you to my daughter Sydney who’s smiling face was my inspiration to finish my Ph.D. Finally, I thank my newborn daughter, Andie for coming into this world just in time to give me that final push to meet my Ph.D. deadlines.

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v TABLE OF CONTENTS page ACKNOWLEDGMENTS.................................................................................................iii ABSTRACT....................................................................................................................... ..x CHAPTER 1 INTRODUCTION........................................................................................................1 Background...................................................................................................................1 Experts in Recommending PAC Services....................................................................5 Necessity for a Standardized Instrument for Determining the Need for PAC.............6 Method for Understanding Comprehensive PAC Needs............................................10 Goal of the Research...................................................................................................12 Research Question 1............................................................................................12 Research Question 2............................................................................................12 2 LITERATURE REVIEW...........................................................................................13 Current State of Personal Assistance..........................................................................13 Legislation and Policy Affec ting Provision PAC Services........................................14 ADL Assessments.......................................................................................................21 Functional Independence Measure (FIM)..................................................................22 Limitations of the FIM................................................................................................26 Unmet Need................................................................................................................30 Consumer Directed PAC............................................................................................33 Cash and Counseling..................................................................................................34 Consumer Management of PAC.................................................................................36 Personal Assistance and a Model of Disablement......................................................38 Role of the Life Care Planner.....................................................................................42 LCP Knowledge and Competencies–Framework of the ICF Model..........................43 Summary and Rationale for a Co mprehensive PAC Instrument................................45 3 METHODOLOGY.....................................................................................................49 Research Question 1...................................................................................................49 Subjects....................................................................................................................... 49 Sampling Procedure.............................................................................................50 Delphi Procedure.................................................................................................51 Delphi round 1..............................................................................................52

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vi Delphi round 2..............................................................................................53 Delphi round 3..............................................................................................55 Research Question 2...................................................................................................55 Rationale for Interviewing Veterans with SCI....................................................55 Subjects................................................................................................................56 Procedure.............................................................................................................56 Data Analysis.......................................................................................................57 Coding.................................................................................................................58 Researcher Bias...................................................................................................59 Personal Bias Statement......................................................................................60 4 RESULTS...................................................................................................................61 Introduction.................................................................................................................61 Delphi Study...............................................................................................................61 Alpha Testing Round 1........................................................................................61 Panel Demographics............................................................................................66 Delphi Round 1....................................................................................................68 Questions Not Included In Subsequent Rounds..................................................73 Delphi Round 2....................................................................................................75 Delphi Round 3....................................................................................................76 Interviews with Veterans with SCI.............................................................................78 Participant Demographics...................................................................................78 Specific Activities Coded....................................................................................79 Emerging PAC Themes.......................................................................................80 Effect of mental state....................................................................................80 Independence................................................................................................82 PAC services in place...................................................................................83 Scheduling....................................................................................................84 PAC during hospital stays............................................................................85 Trustworthiness............................................................................................85 Spousal care..................................................................................................86 5 DISCUSSION.............................................................................................................88 Introduction.................................................................................................................88 Overview of Significant Findings...............................................................................88 Delphi Study........................................................................................................88 Results and the ICF model...........................................................................89 Items to be excluded.....................................................................................91 Qualitative Interviews.........................................................................................92 Mental health................................................................................................93 Independence................................................................................................94 PAC services in place prior to discharge.....................................................94 Scheduling....................................................................................................95 Trustworthiness............................................................................................95 Hospital setting.............................................................................................96

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vii Spousal care..................................................................................................97 Limitation of this Study..............................................................................................97 Delphi Study........................................................................................................97 Qualitative Interviews.........................................................................................98 Implication for Clinical Practice and Policy.............................................................101 Clinical Practice.................................................................................................101 Public Policy......................................................................................................104 Further Research and Development of the Findings of This Study..........................107 Conclusion................................................................................................................109 APPENDIX A DELPHI ROUND 1..................................................................................................111 B INITIAL EMAIL TO LIFE CARE PLANNING EXPERTS...................................121 C DELPHI ROUND 1 FRIE NDLY REMINDER EMAIL..........................................123 D ROUND 2 EMAIL TO LIFE CARE PLANNING EXPERTS................................124 E DELPHI ROUND 2..................................................................................................125 F DELPHI ROUND 2 FRIE NDLY REMINDER EMAIL..........................................146 G DELPHI ROUND 3..................................................................................................147 H DELPHI ROUND 3 EMAIL TO LI FE CARE PLANNING EXPERTS.................168 I DELPHI ROUND 3 FRIE NDLY REMINDER EMAIL..........................................169 J INTERVIEW GUIDE...............................................................................................170 K CONSENT FORM FOR VETERAN PARTICPANTS...........................................173 REFERENCES................................................................................................................178 BIOGRAPHICAL SKETCH...........................................................................................187

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viii LIST OF TABLES Table page 1 PAC Component of a LCP......................................................................................44 2 Comments and Actions from Alpha Testing of Round 1........................................65 3 Panel Demographics................................................................................................67 4 Panel Credentials.....................................................................................................67 5 Delphi Study Results................................................................................................68 6 Questions Not Included In Subsequent Rounds.......................................................74 7 Items with a Median below 3...................................................................................77 8 Participant Demographics........................................................................................78 9 PAC Activities Reported From Veterans.................................................................79

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ix LIST OF FIGURES Figure page 1 Postulated PAC Measure Comparison With The FIM.............................................11 2 Comparison of Functional Status Tools...................................................................28 3 ICF Model................................................................................................................40

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x Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy IDENTIFICATION OF ACTIVITIES CRI TICAL TO EXAMINE THE NEED FOR PERSONAL ATTENDANT CARE FOR INDIVIDUALS WITH SPINAL CORD INJURY By Jamie Pomeranz May 2005 Chair: Linda Shaw Major Department: Rehabilitation Science The purpose of this study was to determine the necessary items and constructs to be included in a measure of personal attendant ca re (PAC) for individuals with spinal cord injuries (SCI). Currently, there are be tween 219,000 and 279,000 individuals with SCI in the United States. Approximately half of thos e individuals require some type of personal assistance with daily care. Attendant care can include personal assistance, domestic services, community services, home nursing, home maintenance, childcare services, educational support and respite care. The Functional Independence Measure (FIM) has most often been selected as the instrument of choice to predict the total PAC needs of individuals with SCI. While the FIM has been shown to be effective in predicting activities of daily living (ADL) of individuals with neurological conditions, rehabilitation professionals tend to use this assessment to pr edict the entire range of attendant care for individuals with SCI. This research was intended to identify a full range of activities that should be included in a comprehensive assessment of PAC needs. Using the Delphi

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xi method, 25 life care planners, experienced in determining PAC services identified specific activities to be considered when assessing the need for PAC. Additionally, qualitative interviews were conducted with veterans with SCI to understand their perspective regarding the act ivities that should be considered when making PAC recommendations. The study resulted in 191 activiti es to be considered by professionals when recommending PAC services. These re sults covered a wide range of activities relating to ADL’s, home/yard maintenance, employment, education, and hobbies/leisure. Implications for future development of co mprehensive measures of PAC needs were discussed as well as the impact of this resear ch on public policy and clinical practice.

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1 CHAPTER 1 INTRODUCTION Background Currently, there are between 219,000 and 279,000 individuals with spinal cord injury (SCI) in the United Stat es (National Spinal Cord Inju ry Statistical Center, 2003). Approximately half of those individuals requ ire some type of pe rsonal assistance with daily care (Blackwell, 2001). Personal atte ndant care (PAC) services can be one of the most common and costly aspects of daily liv ing for individuals with SCI (Weitzenkamp, Whiteneck, & Lammertse, 2002). Attendant care is the assistance received by people with physical disabilities for undertaking the full ra nge of everyday tasks that ablebodied people normally do for themselves It enables an individual to live independently and to exercise basi c rights about lifestyle choice. (Physical Disability Council of NSW, 2004) PAC services, also referred to as pers onal assistance, are defined by the World Institute of Disability as assistance, under maximum feasible user control, with tasks aimed at maintaining well-being, personal appe arance, comfort, safe ty, and interactions within the community and society (Kenne dy, 1997). PAC services are provided for domestic activities, community activ ities, home nursing, home maintenance, housecleaning, gardening, childca re activities, educationa l and vocational support and respite care (Motor Ac cident Authority, 2002). For many individuals with SCI, absen ce of assistance with such day-to day activities can lead to health care problems th at are every bit as seri ous as health problems that result from inadequate medical services. More specifically, lack of PAC services can

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2 affect the musculoskeletal, circulatory, respir atory, and skin systems. Such problems can be extremely difficult and costly to re solve and can result in greater levels of disability and even greater n eed for health and support servic es (Dautel & Frieden, 1999). Furthermore, individuals with SCI experien ce a wide array of physiological and healthrelated changes associated with the aging process. Increasing health and function problems related to aging translate into a greater demand for PAC (Robinson-Whelen & Rintala, 2003). Individuals who provide pe rsonal assistance to indivi duals with SCI are often referred to as personal care attendants (PCAs) Such individuals pr ovide assistance with activities of daily living (eat ing, grooming toileting, etc.), tr ansfers, safety precautions, household cleaning and maintenance, driving to and from appointments, running errands, minor home repair and yard maintenance, leis ure activities and employ ment assistance. PCA’s may be skilled or unskilled work ers, who might be unlicensed, licensed, registered nurses, nursing assi stants, nurse’s aides, home hea lth aides, or an individual with no formal training. The level of care provi ded is often a reflecti on of an individual’s needs and/or available resources. For exampl e, an individual with ventilator dependent tetraplegia will require 24-hour awake care, which requires assistance from a Licensed Professional Nurse (LPN) or a Registered Nu rse (RN). Conversely, an individual who has lower-level paraplegia may be self-suffici ent and require less skilled assistance in housekeeping activities such as c ooking and cleaning (Weed, 2004). Depending on the skill level of the attendant care provider, a signi ficant cost can be associated with attendant care services. Sp ecifically, attendant care costs can comprise up to 44% of the total recurri ng rehabilitation costs for i ndividuals with SCI (Harvey,

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3 Wilson, Greene, Berkowitz, & Stripling, 1992). In fact, Hall et al. (1999) found that individuals with high tetraplegia used more than 135 hours of paid assistance weekly. This amount of assistance, if provided by someone receiving minimum wage would amount to over $40,000 per year. This minimum salary would most likely be associated with PCA’s employed by a Home Health Agency. The majority of persons with disabilities in the United States currently receive paid personal assistance through home care agencies that contra ct with Medicaid offices (Doty, Kasper, & Litvak, 1996). Agency-selec ted care includes PCA’s who are provided by home health type agencies or comm unity agencies (Mitchell & Kemp, 1999). Funding for PAC services is sometimes ma de available through the extension of Medicaid Home and Community-Based Se rvices (HCBS)(Kitchner, Ng, & Harrington, 2003). Such HCBS programs were developed as a direct result of the Supreme Court’s ruling in Olmstead vs. L.C. and E.W. (Kitchner, Willmott, & Harrington, 2004). The Olmstead ruling resulted in an executive order mandating formal plans for ensuring community-based alternatives to institutions fo r all people with disabilities. The decision demands that whenever medically feasible and preferred by the re cipient, appropriate care must be delivered to the individual in a non-institutional setting (Hagglund, Clark, Mokelke, & Stout, 2004). Although the Olmstead Act facilitated th e development of HCBS on a national level, each state has much latitude in determ ining the type of services offered, who can provide such services, and the conditions under which services ar e provided (Dautel & Frieden, 1999). Specifically, states have the option of using combinations of two Medicaid funded programs, the HCBS waiver and the Medicaid Personal Care Services

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4 (PCS) program, to provide personal assistance either directly, or through a variety of contractual arrangemen ts (LeBlanc, Tonner, & Harrington, 2001). According to LeBlanc and associates (2001), there are a number of other government programs that support personal car e services in the United States. These programs include Social Security, Older Americans Act funds, state general funds, Department of Veterans Affair s, and Ticket to Work Program s. Despite the existence of these programs, Medicaid home health rema ins the most significant government program offering personal assistance in the Un ited States (LeBlanc et al., 2001). In addition to government programs where the PCA is typically arranged and funded by a governmental agency, individuals with SCI also obtain PCA’s either through consumer-selected care or through family members provided care (Mitchell & Kemp, 1999). Consumer-selected care consists of PCA’s who are intervie wed, hired, trained, and supervised by individuals with SCI. Fam ily PCA’s are typically family, friends, or neighbors who are not interviewed prior to be ing hired. According to LaPlante and associates (2004), over 85% of all hours of personal assistance with ADL’s and IADL’s are provided by family and friends. Wh ile government programs may pay for the services of these PCA’s, they are also funded privately or, especially in the case of family members, they may not receive any compensa tion for their resources. In any case, all three avenues for personal assistance increa se the chances that an individual with a disability will be able to live in the community. The reintegration of individuals from in stitutions to home settings follows the philosophy of the independent living model of personal assistance. This philosophy of health care was developed by and for worki ng-age adults with disabilities as an

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5 alternative to the medical model of health care. The model endorse s the full involvement of the individual with the di sability in the selection, ma nagement, and training of a personal care attendant, with the final respons ibility of care belonging to the person with the disability. The philosophy involves th e belief that reliance on services of a professional health care provider in an institution may unintentionally reduce an individual with disabilities to the status of patients whose inputs are secondary to those of professionals (Mitchell & Kemp, 1999). Even though individuals with disabilities can have the responsibility to select, manage, a nd train their own personal care attendants, they must still often rely on professionals to accurately assess th eir need for personal assistance. Precise assessments of the n eed for personal assistance are essential for effective planning of disability support services (Kennedy, 2001). Experts in Recommending PAC Services One group of professionals who are often involved in the planning of disability support services, and thus make decisions in regards to PAC servic es, are Certified life care planners. The process of life care pla nning (LCP) involves the assessment of the total disability-related needs of an individual projected across the lifespan. Life care planning is defined as a dyna mic document based upon published standards of practice, comprehensive assessments, data analysis, a nd research. The LCP provides an organized concise map for current and future needs with associated costs for individuals who have experienced catastrophic inju ry or have chronic health care needs (NARPPS, 1998). Topics that are covered under an LCP ofte n include projected evaluations, projected therapeutic modalities, diagnos tic testing/education assessment, wheelchair needs, wheelchair accessories and ma intenance, aids for indepe ndent function, orthotics and prosthetics, home furnishings and accessories, drug and supply needs,

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6 home/personal/facility attendant care, future medical care-ro utine, transportation, health and strength maintenance, ar chitectural renovations, poten tial complications, future medical care/surgical intervention, orthopedic equipment needs, and vocational/educational needs (MediPro Seminars, 2004). LCP’s are frequently used in personal inju ry and other types of litigation and must be defensible in courts of law. As such, to prevent overestimation and underestimation of PAC needs, life care planners must rely on objective and accurate measures of rehabilitation needs and outcomes associat ed with therapeutic interventions. Overestimating attendant care needs will resu lt in inaccurate, unjustifiable, and more expensive rehabilitation plan s that are unfair to all pa rties involved (Weed, 2004). Underestimating attendant car e needs can result in indivi duals receiving inadequate services to maintain themselves throughout thei r lifetimes and likely lead to a higher rate of complications and hospita lization, even possibly reducing life expectancy (Weed, 2004). Necessity for a Standardized Instrume nt for Determining the Need for PAC The need for a standardized instrument is critical for measuring the relationship between functional status and personal as sistance (Samsa, Hoenig, & Branch, 2001). Many agencies, rehabilitation centers, and cen ters for independent living currently use functional status measures that assess activ ities with daily living (ADL) to establish recommendations for all aspects of PAC. Such assessments include the Functional Independence Measure (FIM) (Granger & Hamilton, 1986), the Minimum Data Set (MDS) (Health Care Financing Administrati on, 1998), and the Bart hel Index (Mahoney & Barthel, 1965). Although thes e functional status measures are valuable tools used by rehabilitation professionals, they were not created for measuring all components of PAC

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7 specifically for individuals with SCI. Furtherm ore an extensive review of the literature demonstrates that a scientific instrument sp ecifically designed for determining the need for all areas of PAC by individuals with SCI does not exist. In addition to the above functional st atus measures, PAC recommendations for individuals with SCI are ofte n based on clinical practice gu idelines. Specifically, life care planners often make PAC recommenda tions based on guidelines published by the Paralyzed Veterans of America (Mediproseminars, 2004). These guidelines, sponsored by the Consortium for Spinal Cord Medicine list hours of personal care and homemaking assistance that may be appropriate to each le vel of injury. These guidelines were based on the consensus of clinical experts, data fr om the FIM, available literature on functional outcomes, and data compiled from Uniform Data Systems (UDS) and the National Spinal Cord Injury Statistical Cent er (NSCISC) (Consortium for Sp inal Cord Medicine, 1999). The hours recommended were determined repres entative of skilled, unskilled, paid and unpaid assistance required for individua ls who were one-year post-SCI. These guidelines have been used by life care planners and are cited quite frequently in the life care planning literature. However, there are many limitations to the guidelines. First of all, the guidelines do not take in to consideration the effects of aging on individuals with spinal cord injuries (Deutsch, 2003). We ed (2004) discusses evidence that individuals with spinal cord injuri es tend to experience some of the changes commonly associated with aging earlier. W eed goes on to state that an individual, who has had a spinal cord injury for 20-25 year s and has been using a manual wheelchair, will have more difficulty with upper extremity pain. Additionally, the individual may have more difficulty with transfers and self care needs and require a highe r level of attendant

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8 care. The guidelines also fail to break down the attendant care hours by the specific types of activities with which indivi duals with SCI require assistan ce. Furthermore, the above guidelines are based on a person with moto r-complete SCI and do not reflect needs associated with incomplete injuries, changes in assistance that may be required over time, nor do they take into account other medica l conditions, complications, age, obesity, cognitive abilities, psychosocial, and envir onmental factors (Blackwell, 2001). Although the above model serves as a general guide fo r attendant care and level of spinal cord injury, it fails in providing the specific and precise determinates for each component of PAC. The limitations in the guidelines can be be tter understood by examining the FIM. The FIM, which was a primary functional stat us measure used in developing the above clinical guidelines, is the most widely used disability measure in rehabilitation medicine (Consortium for Spinal Cord Medicine, 1999). The FIM instrument describes the type and amount of human assistance required by a person when performing basic life activities. The items on the FIM describe two domains: motor and cognitive (Stineman et al., 2001). The motor do main includes 13 items, which are described as physical abilities. These items in clude: eating, grooming, bath ing, upper body dressing, lower body dressing, toileting, bladder management, bowel management, transfers, locomotion, and stair climbing (Linacre, Heinemann, Wr ight, Granger, & Hamilton, 1994). The cognitive domain includes five items cons isting of comprehension, expression, social interaction, problem solving and memory. The motor items are mainly self-care items or ADL’s.

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9 Jette and colleagues (2003) examined the it em hierarchy of four functional status measures including the FIM, used in post acu te care. Such a hierarchy allows the researcher to examine items listed in a dist inct order of difficulty for a particular population (Velozo & Peterson, 2001). Jett e and colleagues (2003) compared the hierarchical structure of the functional measur es and determined that there were inherent measurement limitations to the instruments fo r use in post-acute care. The limitations included lack of range of content, breadth of coverage, and measurement precision. This researcher compared the hierarchi cal structure of the FIM to a postulated hierarchical arrangement of items within pos tulated constructs often considered by life care planners in making PAC recommendations (Figure 1). These postulated constructs were created based on discussions with profe ssional Life care planne rs, individuals with disabilities, as well as the current PAC and LCP literature. The hierarchical structure as seen in Figure 1 is based on difficulty level. For example as demonstrated on the FIM, eating requires less overall functional ability than bathing Furthermore, bathing requires less overall functional ability than stair climbing Additionally, if an individual can climb stairs independently, than there is a hi gh probability that he/she can most likely be independent in performing items such as grooming, bladder management, and bowel management Figure 1 demonstrates that although the FI M is a valuable tool in assessing selfcare need, it was not created for measur ing other components of PAC such as homemaking, home/yard maintenance, and voca tion/educational/leisur e activities. These activities are considered instrumental activit ies of daily living (IADL ’s) and also include the use of a telephone, transportation, f ood or clothes shopping, meal preparation,

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10 housework, medication use, and management of money (Kennedy, 2001). According to Kennedy (2001), an estimated 3.2 million adults in the United States have one or more unmet or undermet needs for personal assi stance, with most reporting deficits in assistance with IADL’s. By listing the items under each construct in hi erarchical order, one can see that the postulated constructs are likely to measure functional ability beyond what is measured by the FIM. For example, an individual who is independent in higher level ADL item listed on the FIM such as Dress LE (lower extremity dressing) may be identified as only needing PAC services for locomotion and stair climbing though he/she may be unable to take out the garbage, mop the floor, or mow the lawn independently. In addition, according to the FIM, the lowest ability level associated with PAC is eating, when it is possible that an individual may need PAC with activities associated with lower functional ability such as using the reading and waking up in the morning The FIM, by design is most precise and relevant for post acute inpa tients whose function is at the lower end of the continuum (Jette et al., 2003). The above examples suggest that a more comprehensive understanding of an individual’ s abilities is needed to more accurately determine the PAC needs of individuals with SCI. Method for Understanding Comprehensive PAC Needs One empirical method to develop a co mprehensive understanding of PAC beyond what is measured by the FIM involves the implementation of the Delphi Method. The Delphi Method is frequently used to dete rmine consensus among experts on a given issue and consists of a series of repeated qu estionnaires in a group of individuals whose opinions are of interest (Herdman et al ., 2002). For this study, life care planners represented individuals whose opinions were of interest based on the requirements of

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11 FIM Housekeeping Home/Yard Maintenance Vocational/School/Leisure Stair Climbing Locomotion Dress LE Toilet Transfer Toileting Bathing Bowel Mgmt Bladder Mgmt Bed-Chair Trfs Dress UE Grooming Eating Figure 1. Postulated PAC Meas ure Comparison With The FIM Driving to/from appointments Grocery Shopping Taking out the garbage Washing car Cleaning windows Mopping the floor Cleaning dishes Vacuuming Doing laundry Cooking Taking clothes out of closet Cleaning windows Getting the mail Getting the newspaper Sweeping floor Making the bed Getting food from refrigerator Taking medication Dusting Using a computer Managing money Using the telephone Turning on television Waking up in the morning Trimming trees Moving furniture Trimming hedges Edging Fixing leaks Changing A/C filters Mowing the lawn Assembling large items Hanging fixtures Changing light bulbs Planting Simple plumbing tasks Spreading fertilizer Picking up leaves Watering Grass Assembling small items Hanging pictures Using a screwdriver Hammering Nails Sweeping Patio Going on vacation Playing sports Swimming Work transportation Shopping at the mall Eating at a restaurant Using computer technology Presentations Taking notes Taking tests Going to the park Writing Using a calculator Typing Going to the movies Going out with friends Carrying books/supplies Playing board games Reading Watching television Listening to music More Ability F U N C T I O N A L A B I L I T Y Less Ability FIM scale estimates cited from Jette, Haley, and Pengsheng, 2003

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12 their profession to often formulate PAC recommendations. Additionally, the Delphi method provides a means for extrapolating the opinions of such experts without the need to organize the professionals into one specific environment. In other words, the opinions could be obtained from experts dispersed th roughout the country. This method appeared to be the most appropriate for mee ting the goals of this researcher. Goal of the Research The primary goal of the present disserta tion was to conduct qualitative research, which will lead to the development of a measure for predicting the need for PAC services. Research Question 1 What are the critical items necessary to examine the need for PAC services for individuals with SCI from the pers pective of LCP professionals? Research Question 2 What are the critical items necessary to examine the need for PAC services from the perspective of veterans with SCI?

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13 CHAPTER 2 LITERATURE REVIEW Current State of Personal Assistance In 1997, out of an estimated 33 million peopl e with severe disabilities, 10 to 20 million required personal assistance (Ha gglund, Clark, Mokelke, & Stout, 2004b; Allen & Mor, 1997). PAC services provided to a dults with disabilities amounts to 21.5 billion hours of help per year with an economi c value at around $200 billion as of 1996 (LaPlante, Harrington, & Kang, 2002). The need for PAC services for people with di sabilities appears to be on the rise. In fact, home health care, which includes PAC se rvices (75% of all home care needs), has been increasing at an annua l rate of 20% to 25% sin ce the 1980’s (Mitchell & Kemp, 1999). One reason for this rapid increase is du e to the recent advances in medicine and technology (Robinson-Whelen & Rintala, 2003). Such innovations are contributing to longer life expectances for indivi duals with SCI. In fact, in the 1940’s individuals with traumatic high tetraplegia rarely survived. Now, due to the establishment of trauma centers and model systems of care, if an indivi dual with high tetraplegia survives the first year, even when ventilator-assisted, that individual has a 60% chance to survive an additional 15 years or more (Hall et al ., 1999). According to Robinson-Whelen and colleagues (2003), increases in life expectancies lead to in creasing care resulting in high demand for personal assistance. Unfortunately, as the demand for persona l assistance increases the likelihood of those needs being unmet is increas ing as a result of l ack of public funding. This is due, at

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14 least in part, to the fact that states are currently suffering fr om loss of tax revenue and as a result, state legislatures are targeting Me dicaid programs in an attempt to make up ongoing budget shortfalls (Hagglund et al., 2004 ). Such cuts in public assistance contradict modern legislation effecting PAC. Legislation and Policy Affect ing Provision PAC Services Legislative decisions have played a major ro le in the provision of PAC services to individuals with disabilities. One landmark case that facili tated the increase in such services was known as The Olmstead Decision. Olmstead v. L.C. and E.W. reached the Supreme Court when the Georgia Department of Human Resources appealed a decision by the 11th Circuit that it had violated the Am ericans with Disabilities Act (ADA)’s “integration mandate.” This infringement occurred when two females with mental disabilities at a state psychiatric facility we re segregated long after professionals had recommended their transfer to community car e (The Center for An Accessible Society, 1999). The Supreme Court decided that states woul d be violating Title II of the Americans with Disabilities Act (ADA) of 1990 if they pr ovide care to people w ith disabilities in an institutional setting when th ey could be appropriately se rved in a home or communitybased setting. Specifically, Title II applies to public servi ces furnished by governmental agencies and provides in part that No qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public ent ity, or be subjected to discrimination by any such entity. (Allen, 2001; ADA, 1990) The ADA defines a public entity as in cluding a state or local government, a department, agency, special purpos e district, or other instrument ality of a state, states, or

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15 local government (ADA, 1990). In the Olmst ead decision, the argument was made that public entities are required to provide services in the “most integrated setting appropriate to the needs of qualified indivi duals with disabilities” (All en, 2001). In many situations the most integrated setting includes an individual’s home environment or community based setting. In the Olmstead case, physicians at the stat e hospital had determined that services in a community-based setting were appropriate fo r the plaintiffs, and even though appropriate settings for services are determined on a cas e-by-case basis, states must continue to provide a range of services fo r people with different type s of disabilitie s (Allen, 2001). With the passage of Olmstead and with the ADA continuing to play a key role in the lives of individuals with disabilities, the establishment of a national system for the provision of PAC services remains a high prio rity for many disabil ity groups (Kennedy, 1997). Current agenda relating to the mode rn development of personal assistance programs in the US can be linked to the pa ssage of Titles XIX and XX of the Social Security Act (Litvak, 1991; Kennedy, 1997). This legislation facilita ted the creation of Medicaid Home and Community Based Se rvice (HCBS) Waivers and the Medicaid Personal Care Services (PCS) program The HCBS waiver program received congressional authorization in 1981 and offers federal matched funding to the states to expand HCBS and accelerate movement aw ay from long-term-care (LTC) services provided from institutions. The program allows the Department of Health and Human Services to “waive” certain Medicaid statutor y requirements so that states can receive federal funds to expand HCBS and reduce ex isting institutional care. States can implement this program by targeting HCBS towards specific geographical areas,

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16 populations, and conditions. Als o, the states can provide services not otherwise covered by the Medicaid program such as respite car e, homemaker services, personal care, and adult day care. In addition to the HCBS program, funding for attendant care can come from the Medicaid Personal Care Services (PCS) Program. This optiona l benefit allows states to have considerable discretion in defining PC S but the programs typically involve hands-on assistance with ADL’s to non-in stitutional residents of all ages with disabilities and chronic conditions. The services do not incl ude domestic services such as housekeeping activities. PCS services can be provided in the home, outside the home, or a combination of both. The states cannot however, reimburse legally responsible relatives (typically parents of minor children with disabilities and spous al caregivers). In 2001, 28 states offered a PCS benefit, however, they varied in the amount and scope of the services provided (Kitchner et al., 2003). These Medicaid policies and services were established with the passage of Section 2176 of the Omnibus Budget Reconciliation Act (OBRA) (P.L. 97-35) of 1981. OBRA allowed states more flexibility in defining th e "medically needy" and permitted states to vary Medicaid services by group. Regulations implementing OBRA permitted states to determine eligibility of individuals who were medically needy by varying financial requirements used for each medically needy group (Centers for Medicaid and Medicare Services, 2005). OBRA legislation lead to th e creation of Secti on 1915c of the Social Security Act, which authorized states to exercise the option of providing home and community-based alternatives to institutional care (LeBlanc, Tonner, & Harrington, 2001). According to

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17 Kennedy (1997), such legislation allowed more progressive state governments to experiment with alternatives to institutional placement for people with disabilities. The main goal for such programs was to d ecrease nursing home expenditures by allowing states to redirect federal nursing home funds to HCBS waiv ers. Program expenditures were contingent on the declin e in nursing home admissions. The success of such current Medicaid progr ams may be in question since research on the provision of long-term services a nd supports under the Medicaid program has revealed a significant funding bias toward in stitutional care. Only about 27 percent of long term care funds expended under the Medi caid program, and only about 9 percent of all funds expended under that program, pay for services and supports in home and community-based settings. Also, only 27 stat es have adopted the benefit option of providing personal care services under the Me dicaid program. In the case of Medicaid beneficiaries who need long term care, the only long-term car e service currently guaranteed by Federal law in every state is nursing home care. A lthough every state has chosen to provide certain services unde r home and community-based waivers, these services are unevenly available within and acr oss states, and reach a small percentage of eligible individuals. In fiscal year 2000, only 3 States spent 50 percent or more of their Medicaid long terms care funds under the Me dicaid program on home and communitybased care (Harkin & Spector, 2003). Furthermore, the abili ty of states to limit the number of waiver “slots” avai lable in order to control progr am costs has resulted in long waiting lists across states fo r HCBS services. For example, in 2002, waiting lists for HCBS waivers in eight selected states ( GA, IA, NC, NM, LA, MI, TX, and WA) totaled 155,884 with 74,244 in Texas alone (Kitchner et al., 2003).

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18 Even though a lack of success of state Medicaid programs makes a strong case for a federal program, efforts to create an enti tlement of PAC services at a national level have been unsuccessful (Glazier, 2001). In 1997, then Speaker of the House Newt Gingrich introduced the Medicaid Community Attendant Services Act (MiCASA) as H.R. 2020. MiCASA would have amended Title XIX of the Social Security Act and created a new Medicaid se rvice called “Qualified Community-Based Attendant Services.” Such a service would have allowe d the choice by any indi vidual eligible for Nursing Facility Services (NF) or Intermedia te Care Facility Services for the Mentally Retarded (ICF-MR) to use those dollars for “Qualified Community-Based Attendant Services.” The Federal Government would ha ve allocated $2 billion dollars over six years to help states transition from institu tional to community-based services. This $2 billion dollars was to be in addition to th e Medicaid dollars the state would spend on people eligible for nursing homes and ICFMR’s. Specifically, the program provides qualified community-based atte ndant services that are ba sed on an assessment of functional need; provided in a home or community-based setting, including school, workplace, recreation or religi ous facility; include various delivery options including vouchers, direct cash payments, fiscal agen ts and agency provi ders; are selected, managed and controlled by the consumer of the services; include voluntary training on how to select, manage and dismiss attendants; and are provided according to a service plan agreed to by the person receiving services (Nationa l Council on Independent Living, 2005). Unfortunately, even though the bill had cons iderable bipartisan support, it died a quick death (Glazier, 2001). There was a lot of discussion about MiCASA attracting

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19 people who are eligible for institutional se rvices but who would never go into an institution. The assumption is that they would ju mp at the chance to use MiCASA. The government called this the “woodwork” effect because they believe people would “come out of the woodwork”, costing more money (National Council on Independent Living, 2005). Furthermore, legislators expressed conc ern that the bill could cost the federal government $10 to $20 billion per year that woul d create an upheaval in service systems leading to the pitting of c onstituencies against each other for resources (Agosta, 1998). The above legislative programs coincide d with the disabili ty rights movement. The disability rights movement involved a fight for an alternative approach to long-term care and sought to meet the specific needs of people with disabilities and their desires to live and participate actively in their communities (Dautel & Frieden, 1999). The disability rights movement lead to new programs and services as alternatives to institutionalization of people w ith disabilities with the goal of improving their integration in society. Societal integration includes liv ing in the community, working in mainstream jobs, receiving education in regular classrooms along with non-disabled students, attending cultural and social events, mainta ining a network of friends, and engaging in other leisure activities (Dautel & Frieden, 1999; Kaye & Longmore, 1998). The most recent legislation spawned by th e disability rights movement includes a revision of MiCASA. The updated version of the previously unsuccessful bill was entitled the Medicaid Community Attendant Services and Supports Act (MiCASSA). Senators Tom Harkin and Arlan Spector filed the bill in the 106th Congress in November 1999 (Glazier, 2001). Major differences be tween MiCASA and MiCASSA include the following: mandate consumer choice of serv ice delivery; states are to be bound by a

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20 “maintenance of effort” requirement that pr events cutbacks in ot her service areas; inclusion of aging, persons with mental re tardation, and persons with chronic mental illness; supports for persons with cognitive and sensory impairments, who may be independent in basic self care (Glazier, 2001). MiCASSA would lead to the provision of community attendant services and supports in clude assisting with activities such as eating, toileting, grooming, dressing, bath ing, transferring, meal planning and preparation, managing finances, shopping, household chores, phoning, participating in the community, and health related functions like taking pills, bowel and bladder care, ventilator care, tube feeding, etc. Services would be provide d at home, in school, at work and for leisure activities (ADAPT, 2004). Unfortunately, similar to MiCASA, the mo re current bill has been unsuccessful due to concerns over the financial impact th at such a program would have on the federal government. According to ADAPT (2004), it is feared that the “woodwork effect” as discussed earlier, would lead to people who ar e eligible for institutional services to jump at the chance to use MiCASSA even though they never intended to enter an institution in the first place. ADAPT (2004) asserts that the woodwork effect is blown way out of proportion. Specifically, there may be some increase in the number of people who use the services and supports at first, but the or ganization asserts that savings will be made on the less costly community based services and supports, as well as the decrease in the number of people going into institutions. In addition to the financial ramifications of MiCASSA, according to Glazier (2001), the f ear of overwhelming unmet need seems to have stalled action to date in Congress. Un met needs is defined as the number of times within the past month that an individual wa s unable to perform an ADL or IADL activity

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21 due to lack of assistance (H agglund et al., 2004b). Glazi er (2001) points out that the dimensions of PAC need have a very wide ra nge of interpretation. This is dependent on the definition of eligibility for PAC, whic h is usually set by the number of ADL’s for which consumers need assistance. Furthermore, estimates of the need for PAC also vary according to whether one includes persons with limitations in performing ADL’s, those who actually require another person’s assist ance with those ADL’s, or those who need standby assistance or supervision. ADL Assessments ADL impairment associated with indirect costs of personal assistance is sometimes used to guide health care policy (Cotter, Bu rgio, Stevens, Roth, & Gitlin, 2002). Since, ADL assessments were used to reliably predict nursing home admissions, policy makers have suggested that such assessments should be used to determine eligibility for PAC services (Kennedy, 1997). ADL assessments are used to measure an individual’s ability to independently perform e ssential daily living activit ies, e.g. bathing, dressing, transferring eating, and toileting (Allen et al ., 1997; LaPlante, Kaye, Kang, & Harrington, 2004). The amount of PAC services received loosely corresponds to the level of disability and the ability to perform ADL’s (Hagglund et al., 2004). According to Cotter and colleagues (2002), accurate assessment of ADL’s is vital for documenting functional ability and decline. The aut hors point out that clinicians rely on proxy ratings of ADL performance when making recommendations, ho wever, previous research has suggested that proxy reports of ADL performance may not accurately reflect the patient’s true abilities or accurately reflect what act ually occurs during an ADL interaction. Furthermore, a critical issue for advocates is whether the ADL criteria are too narrow. A constant framing of need for assistance in term s of the most rudimentary acts of survival

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22 may have the insidious effect of truncati ng the perceived range of activities needing assistance and, thereby limiting the utility of the program benefits for a substantial portion of the population technically e ligible for services (Kennedy, 1997). Kennedy (2001) examined the accuracy of ADL assessments as a tool for effective planning of disability support se rvices. The author points out that some researchers have used national estimates of need for ADL a ssistance to speculate on the eligibility of individuals for publicly funded PAC servic es. Kennedy acknowledges a problem with this methodology in that most of those who n eed disability assist ance already receive ADL assistance in some form. Furthermore, such individuals who are stable and have satisfactory support arrangements are unlikel y to seek out new publicly sponsored services, even if they are eligible to receive them. This may be the case if a family member is providing PAC services. Finally, the author stresses the need for a more comprehensive needs assessment for effective planning at the national level. Such an assessment should assess an individual be yond the level of inde pendence with ADL’s, describe the type and level of services curre ntly received, and identify the perceived gaps in such services. Functional Independence Measure (FIM) As discussed in Chapter 1, one of the mo st commonly used instruments to assess the ability to perform ADL’s is the FIM. A task force cosponsored by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation developed the FIM as an indi cator of disability measured in terms of required degree of assistance by another pers on (Hamilton, Deutsch, Russell, Fiedler, & Granger, 1999). The instrument, which was constructed to evaluate and monitor functional and cognitive status, was designed to be sensitive to change in the functional

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23 independence of an individual over the cour se of a comprehensive inpatient medical rehabilitation program (Hall, Bushnik, Laki sic-Kazazic, Wright, & Cantagallo, 2001). The FIM has been described as having two domains, a motor score domain (13 items) and a cognitive score domain (5 items) (Buchanan, Andres, Haley, Paddock, & Zaslavsky, 2003). This assessment tool requ ires that the individual administering the FIM be a trained clinician, (Samsa, Hoenig, & Branch, 2001). All items are rated on a 7point scale with level 1 indi cating total assistance and level 7 indicating complete independence (Hamilton et al., 1999). Item sc oring is considered complex since scoring rules differ for each of the 18 items (Bucha nan et al., 2003). For example, activities involving locomotion have an explicit distance requirement and the use of modified diets for swallowing can affect the scoring on th e eating item. Furthermore, scoring is influenced by safety and time required to comp lete an activity (Buchanan et al., 2003). Even though the FIM is considered a si ngle measure, Rasch analysis of the instrument has revealed that the FIM is indeed made up of two separate interval measures, a cognitive activity measure and motor activity measure (Hamilton et al., 1999). The Rasch model creates a linear meas ure, with items placed hierarchically and with fit statistics indicating how well different items describe the group of subjects and how well individual subjects f it the whole group (Grimby et al., 1996). With the division of the FIM instrument into two components, many health care professionals rely on the motor portion of the FIM to pr edict the need for PAC. Weitzenkamp and colleagues (2002) studied PAC need for individuals with SCI. Predictors of PAC included the FIM, length of hospital stay, days in a nursing home, neurological impairment level, work, livi ng alone, government funding, gender, ethnicity,

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24 age, and years post injury. The authors stud ied 2154 participants with SCI and compared data from the onset of injury to 1st, 5th, 10th, 20th, and 25-year post injury using the National Spinal Cord Injury Database. The re sults of the study dem onstrated that of the 11 predictors of PAC need, ADL function, as a measured by the motor portion of the FIM was the strongest predictor. Although function as measured by the FIM was shown to be the best predictor of PAC n eed, there were no other disa bility measures used for comparison. Furthermore, the findings are conf ounded by the fact that PAC, in this case, is defined in terms of ADL’s, which is c onsistent with the FIM. This definition contradicts more modern concepts of functi on and PAC that include measures of more complex activities, social participation, a nd health-related quality of life (Latham & Haley, 2003). Hamilton and colleagues (1999) examined the validity of the FIM in predicting paid personal assistance for i ndividuals with SCI as a means for relating disability costs to function. The study involved 109 participan ts with a wide range of spinal cord injuries. Home visits were conducted ove r a one-year period by registered nurses who were trained in administering the FIM. Th e nurses administered the FIM, followed by a disability cost inventory. Part icipants were also instructed to use a stopwatch in order to record the minutes of assistance required for personal care activities. These activities included eating, dressing, bath ing, grooming, bladder and blow er care, transfers, and locomotion. The authors referred to these activ ities as “basic activit ies of daily living.” The disability cost inventory included a pe rsonal assistance component, which was based on the average number of paid assistance mi nutes per day. Such care includes assistance with ADL’s provided by attendants, nurses and respite caregivers. The authors

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25 concluded that participants with low FI M scores (higher dependence) required proportionally more daily assistance than pa rticipants with high FIM scores (high independence). Furthermore, the authors repor ted that the FIM is a significant predictor of the amount of daily assi stance needed by persons with disabilities living in the community. The study specifically explored as sistance with ADL’s. The authors of the study noted several limitations, including pr oblems in transferability of quantitative findings involving the prediction of minutes of assistance to the larger population of people with SCI because of biases Such biases are due to th e fact that the participants represented a convenience sample of current a nd former patients. Also, as pointed out by the authors, a low percentage of women, nonwhi tes, married persons, and those living in institutions were represented. As such, transf erability of the result s of this study to the general population of individuals with SCI would be questiona ble. Finally, it should be noted that half of the participants in the study received no personal assistance with personal care activities. Saboe and colleagues (1997) examined the relationship between FIM scores and the need for personal assistance. This long itudinal study involved one hundred and sixty individuals with SCI. Two y ears post injury, participants were administered the FIM and assessed their current use of personal assistance for ADL’s. The assessment of use of personal assistance with ADL’s involved the c lient answering yes or no to one question regarding the need for personal assistance. The authors concluded that two years after SCI, 35% of the participants used personal care assistance. These individuals had significantly lower FIM scores than nonusers of personal care assistance. The authors reported a high amount of variability with this relationship. This was indicated by a large

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26 standard deviation associated with FIM scores As pointed out by th e authors, the study was limited by a lack of focus on FIM scores relative to actual am ounts of personal care assistance used. Furthermore, the only questio n asked to participants regarding personal assistance, was whether or not they received such a service. Responses to such a question could be misleading depending on the interpretation made by the participant. For example, an individual may be respondi ng to personal assistance in terms of one, two, or many levels of assistance associ ated with ADL’s, tran sportation, vocational activities, or leisure activities. As such, an individu al may respond that they do not receive assistance because they are thinking of assistance in terms of ADL’s when they receive assistance with vocational activities. Limitations of the FIM The FIM is derived from the Barthel Index (Mahoney & Barthel, 1965), and the predominant focus is on changes in f unctioning. Although the FIM is a reliable instrument and several studies have cited its validity as a valuable tool to assess functional independence with ADL ’s (Buchanan et al., 2003), the instrument was created for inpatient populations and does not include items that assess complex activities and social participation (Latham et al., 2003). As such, the instrument appears limited in addressing an individual’s comprehensive PA C needs. Additionally, the FIM is based on a very limited construct of disability. Many higher order as pects of productive functioning are unrelated to the self-car e tasks measured by the FIM (McAweeney, Forchheimer, & Tate, 1996). Specifica lly, these activities include IADL’s, vocational/education and transportation activitie s. Such aspects of productive functioning allow an individual to participate in the co mmunity. Ignoring higher order of productive functioning demonstrates a limitation in the brea dth of coverage associated with the FIM.

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27 Jette and associates (2003) examined the breadth of coverage among functional status tools used in post-acute care. The au thors explored an empi rical comparison of the FIM and three other functional outcome instrume nts with respect to content, breadth of coverage, and measurement prec ision. The authors analyzed da ta from a sample of 485 post acute care patients with a variety of disabilities including SCI. The goal of the authors was to assess items from existing func tional outcome tools us ed in post acute care so that they could be combined for analys is into one common scal e. The functional outcome tools used for data collection incl uded the FIM, the minimum data set (MDS) for skilled nursing and sub acute reha bilitation programs (Morris, Murphy, & Nonemaker, 1995); the Outcome and Assessment Information Set for Home Health Care (OASIS) (Shaughnessy, Crisler, & Schlenker, 1997), and the Short Form-36 (SF-36) for ambulatory care programs (Ware & Kosinski, 2001) A total of 58 activity items from all four instruments were administered to the pa rticipants. Items from the instruments were equated using the Rasch Model. This method was necessary to link the instruments to one common scale. Figure 2 shows the comp arison of the instrument on the same scale representative of f unctional ability. The authors point out that across all four instruments it can be seen that cognitive, communication, and bowel and bladder contin ence function items achieved the lowest functional ability estimates, which indicates th at those items were usually less difficult for persons in the sample to perform comp ared with other items contained in the instrument. The PF-10 derived from the SF-36, lists items with the highest item functional ability calibrations, compared with the other three instruments. For example, items listed on the PF-10 such as carrying groceries, moderate activity, and vigorous

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28 FIM PF-10 MDS OASIS Stair Climbing Locomotion Dress LE Toilet Transfer Toileting Bathing Bowel Mgmt Bladder Mgmt Bed-Chair Trfs Dress UE Grooming Memory Problem Solving Eating Comprehension Social Interaction Expression Figure 2. Comparison of Functional Status Tools (Adapted from Jette et al., 2003) Vigorous Activity Moderate Activity Carry Groceries Walk 1 mile Climb many flights Bend or Kneel Walk Blocks Climb 1 Flight Walk 1 Block Bathing or Dressing Walk of Unit Walk in Hall Walk Room Bathing Walk in Room Dressing Transfer Move Within Unity Toilet Use Bed Mobility Hygiene Bowel Continence Eating Bladder Continence Decision Making Memory Make Self Understood Understand Others Speech Clarity Shopping Laundry Housekeeping Bathing Locomotion Transportation Dress LE Grooming Fix Light Meals Oral Medications Dress UE Transfer Telephone Use Toileting Eating Urinary Incontinence Cognitive Function Oral Expression Bowel Incontinence More Ability F U N C T I O N A L A B I L I T Y Less Ability

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29 activities, require the most functional abil ity to perform and woul d be considered the most difficult items out of the four instruments. Jette and colleagues point out that of the four instrument s depicted in Figure 2, the FIM is the most widely used out come instrument in post acute care. As discussed earlier, the FIM has been documented in the literatur e as being a predicto r of the need for personal assistance. According to Figure 2, the FIM covers a very small portion of functional ability, which would make the in strument most precise and relevant for inpatients whose function is at the low e nd of the continuum. Although many individuals with SCI might fall under this category, ther e are many individuals with SCI at higher level of function that still require personal as sistance. Examples of such activities are listed in Figure 1 of Chapter 1. Upon examin ation of the items of the FIM as listed in Figure 2, one can see the possibi lity of ceiling effects and flooring effects. This is evident by the gaps on the FIM when compared with the other four instruments. For example, a ceiling effect is evident if one compares the PF-10 to the FIM. If an individual’s functional ab ility allows him/her to carry groceries as indicated in Figure 2, that level of function cannot be pinpointed by the FIM, si nce this level of function exceeds that required for stair climbing, which is the most difficult item on the FIM. A flooring effect is evident, if one compares the MDS to the FIM instrument. If an individual exhibits a maximum f unctional ability consistent with understanding others as indicated on the MDS, that same functional level cannot be accurately measured by the FIM, since expression is the lowest level of functional ability as measured by the FIM. As pointed out by the authors of this st udy, ceiling and floor effects severely reduce measurement precision and thus restrict the utility of the instruments.

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30 Observations in this particular study coin cide with previous research on the FIM that has highlighted ceiling and flooring e ffects as well as insensitivity to small differences in function (Berry et al., 2003). In fact, since, the FIM is a generic measure of functional status, there is a concern that the instrument is insensitive to changes in the functional status of people with SCI (Meyer s, Andresen, & Hagglund, 2000). One has to question the ability to recommend PAC for an individual with SCI based on the FIM instrument, if such an instrument is neith er comprehensive nor sensitive to complete functional ability. Unmet Need Limitations in the comprehensiveness of a ssessments like the FIM might contribute to higher frequencies of unmet need for PA C services. Unmet need is possibly the strongest indicator of the quali ty and adequacy of current PA C service delivery in the US (Hagglund et al., 2004). There are many studies that have examined unmet need for PAC services for individual s with disabilities. LaPlante and Associates (2004) conducted a study that examined the unmet need for personal assistance services for individuals with disabilities. The authors specifically focused on ADL’s and IADL’s and compared perceived unmet need with reduced hours of help received. As stated previously, ADL’s are comprised of activities such as bathing, dressing, transferring, toileting, and ea ting. IADL’s include tasks such as taking medications shopping for groceries, managi ng money, and doing heavy housework. Data analyzed for this study came from a National Health Interview Survey, a large nationally representative survey of households in the US. LaPlante and colleagues concluded that unmet need is prevalent among adults of a ll ages who have substantial needs for PAC services. In fact, about 29% of adults needing help in two or more of the five basic

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31 ADL’s need more help than they receive. The authors also determined that an association exists between perceived unmet need and reduced hours of asssitance, independent of level of disability, race, age, a nd income level. An important result of this study is that unmet need was not a measure of an individu al’s insatiable demands for more help (basically not real ly needing assistance and just wanting help). The authors also confirmed that unmet need is associated with higher rates of adverse consequences, including discomfort, going hungr y, losing weight, dehydration, in juries due to falls, and burns. Allen and colleagues (1997) examined th e prevalence and cons equences of unmet PAC need for individuals with disabilities. The authors investigated unmet need for assistance with ADL’s, IADL’s and transportati on in a randomly selected sample of 632 adults with disabilities. The results of the study indicated th at prevalence of unmet need for assistance with ADL’s ranged from 4.1% to 22.6% of the full sample. Unmet need for IADL’s was reported ranging from 15.9% to 34.6%. Participants under the age of 65 reported high amount of unmet need for tr ansportation activities. In addition to prevalence of unmet need, the authors noted consequences resulting from unmet need. Specifically, more than 25% of the respondent s had impairments in toileting and reported wetting or soiling themselves because they did not have help getting to the bathroom. Additionally, over 25% of the res pondents reported not being able to have a bath, falling due to lack of assistance with transferring, high stress due to lack of assistance with housework, and missing doctor’s appointments a nd recreation activitie s due to lack of assistance with transportation.

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32 Kennedy (2001) conducted a similar study by delineating the type and magnitude of disability assistance n eeds across the US population, focusing on factors associated with perceived gaps in assistance. The aut hor examined data estimates from the 1994 and 1995 Disability Follow-Back Surveys. Specifically Kennedy explored self-reported assistance deficits with ADL’s and IADL’s. The results of this study showed that an estimated 3.2 million adults with disabilities have at least one unmet assistance need, usually involving IADL’s. Approximately 970,000 adults with disabilities reported one or more assistance deficits with basi c ADL’s. As pointed out by Kennedy, this population is a logical target for expande d state or federal personal assistance programming. In order to determine whether the source of PAC services can have an effect on unmet need, Hagglund and colleagues (2004) co mpared consumer-directed and agency directed personal assistance services program s. The authors compared 61 individuals with physical disabilities who receive PAC through consumer-directed programs with 53 individuals with physical disabilities who received services through an agency-directed model. Participants in both the consume r-directed and agency-directed groups reported high levels of unmet needs in PAC services Specifically, 42% of participants who needed assistance with ADL’s had at least one unmet need in the last month, while 52% had at least one unmet IADL need in th e past month. There were no significant differences between the two groups in terms of prevalence of unme t need. The authors point out that more attention n eeds to be targeted towards t hose at risk of not receiving adequate PAC services and that doing s o, will increase the likelihood of increased

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33 community and vocational activities and lower the chances of consequences such as high hospitalization rates. Consumer Directed PAC Legislators responding to issues related to PAC must first deal with the most highly contested issue facing policy makers, the qual ity of consumer-directed services (Tilly, Wiener, & Cuellar, 2000). According to Ti lly and associates (2000), most government representatives as well as disa bility representatives consider beneficiaries with consumer direction to be much more sa tisfied with their PAC services The authors point out that such opinion conflicts with the notion by ho me-care agencies and union representatives that there is no difference between agency-d irected PAC services and consumer-directed PAC services. Interestingly, the literature demonstrates that most consumers with a disability are directing thei r own PAC and as a result are more satisfied with such services. This is clearly the case as family and friends of people with disabilities provide over 85% of all hours of assistance with ADL’s and IADL’s (LaPlante et al., 2002; LaPlante et al., 2004). Hagglund and colleagues (2004) compared c onsumer-directed and agency-directed personal assistance services. Specifically, th e authors examined consumer’s report of unmet needs, empowerment, satisfaction, safety and quality of life associated with PAC. The authors studied 61 individuals with physi cal disabilities who received PAC through a consumer-directed program and 53 individuals with physical disabi lities who received services through an agency-d irected model. Participan ts were interviewed and administered satisfaction questions derived from the Patient Satisfaction Questionnaire (PSQ-III) and the Group Health Association of America (GHAA) The participants also received safety questions from the national Home Care Survey and the quality of life

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34 questions from the SF-36. The authors conclude d that participants in consumer-directed PAC programs reported more empowerment and satisfaction with such services than agency-directed PAC programs. Safety, and unmet needs were the same for both models; however, enrollment in a consumer-directed program was a predictor of enhanced quality of life. Prince and associates (1995) found that a better quality of lif e associated with consumer-directed PAC may be due to lowe r medical problems, fewer hospitalizations, and better perception of health. The author s compared self-managed PAC versus agencyprovided PAC for individual with high-leve l tetraplegia. The study involved 71 participants who had sustained spinal cord lesions between C1 and C4 and were at least one-year post injury. The pa rticipants receive a comprehensive battery of assessments that examined perceived functioning, life sa tisfaction, fulfillment a nd participation in society, personal assistance satisfaction, locus of control over various aspects of their lives and their psychological self-reliance. The authors concluded the self-managed group had many more hours of paid attenda nt care, fewer medi cal problems, fewer hospitalizations, and a better perception of health than the agency-directed group. Furthermore, the self-managed group reported a greater satisfaction in having a choice of a caregiver, spent less money and used more hours of paid care. Finally, the authors concluded that financial burden borne both by the indi vidual and society and the emotional burden associated with families and friends were diminished by individuals managing their own PAC. Cash and Counseling In order to allow individuals with disabi lities to manage their own PAC services, a program was developed that offers consumer s with disabilities cash allowance in lieu of

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35 agency delivered services (Mahoney, Sim one, & Simon-Rusinowitz, 2000). The program is known as the Cash and Counseling Dem onstration and Evaluation, is funded by the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services. A three state Cash and Counseling Demonstration was implemented to compare the Cash and Counseling consumer-directed model with th e traditional agency-directed approach to delivering personal assistance services (Cas h and Counseling, 2005). This consumerdirect model gives consumers a flexible mont hly allowance to purch ase disability-related goods and services (including hiring relativ es as workers), pr ovides counseling and financial assistance to help them plan and ma nage their responsibili ties; and allows them to designate representatives to make decisi ons on their behalf (Foster, Bown, Phillips, Schore, & Lepidius, 2003). The Cash and Counseling approach provides consumers with the ability to direct and manage their own personal assistance services and address their own specific needs. Cash and Counseling intends to increase cons umer satisfaction, quality, and efficiency in the provision of personal assi stance services. The vision guid ing this expansion is the promise of "a nation where every state will allow and even promote a participant-directed individualized budget option for Medicaid-funde d personal assistance services." As of 2004, ten states were awarded three-year gr ants of up to $250,000 to implement the Cash and Counseling model and collect informati on to monitor the eff ectiveness of these programs. Due to the success of the Cash and Counseling Demonstration and Evaluation in Arkansas, Florida, and Ne w Jersey, interest from othe r states, a supportive political environment, and President George Bush’s New Freedom Initiative, The Robert Wood

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36 Johnson Foundation, the Office of the Assistan t Secretary for Planning and Evaluation, and Administration on Aging have authorized an expansion of the Cash and Counseling program that will provide grants and compre hensive technical assistance to additional states that are interested in replicating, and in some states expanding, on this Cash and Counseling model (Cash and Counseling, 2005). Consumer Management of PAC With government funds, some PAC progr ams give consumers, rather than homecare agencies, control over who provide s services and how the services are delivered (Tilly et al., 2000). Largely th rough the efforts of the independent living movement, consumers have been able to assume more control over the care-giving process by being able to recru it, hire, train, manage, and pay PCA’s (Prince et al., 1995). A survey carried out by the World Institute on Disability of federal/state and state-only financed programs for homecare found th at 75 programs used independent PAC providers. Of these programs, 80% allowed consumers to hire and fire their own PAC workers and half allowed consumers to train PAC workers (Doty & Kasper, 1994; Litvak & Kennedy, 1990). Managing PAC services by an individual with a newly sustained SCI can be quite an adjustment. Furthermor e, lacking the knowledge of one’s own PAC needs makes managing such services more di fficult, especially when one considers the amount of services that that individual wi ll need for the rest of his/her life. In order to utilize attendan t care services, people with disabilities must quickly develop an understanding of their PAC needs in order to organize and manage their PAC services. Understanding pers onal care needs can have lif e long implications and the impact of inadequate personal care assist ance on physical, emotiona l, and social well being can be tremendous (Lanig, Chase, Butt, Hulse, & Johnson, 1996).

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37 The knowledge of an individual’s personal car e needs is crucial in being able to hire and train individuals to provide PAC services. One of the most commonly cited problems regarding attendant services is c onsumers’ lack of tr aining and supervision skills (Ulicny, Adler, & Jones, 1990). Skills that are necessary to utilize a personal care attendant include sk ills in management, supervisi on, interviewing, hiring, training, organization, and assessment of personal care needs. The following quote describes the difficulty of transitioning to managing a personal care attendant: One of the biggest challenges is chan ging your mindset. You can’t look at a personal assistant as someone who is just helping you out. You really need to approach it as managing an employee or running your own small business. You’re not asking the pers on to do you a favor. You’re hiring them to provide an important service for you. (Weas, 2002) Such challenges are the reason that ma ny Independent Living Centers provide training to consumers in order for them to be able to assess thei r own personal attendant care needs. For example, Community Res ources for Independence offers a training manual for persons with disa bilities receiving at tendant care services (Community Resources for Independence, 2002). The manual offers a detailed personal needs inventory that can help consumers to define their range of specif ic needs for personal assistance. The self-assessment is a comp rehensive inventory that includes questions regarding ADL’s, IADL’s, School/Educati on, Social and Community Activities, Transportation, Personal Finances, Communicati on, Health, and Vacati on Activities. The manual allows an individual to be prepared to hire and train PCA’s to provide attendant care services. This type of assessment is an excellent example of a comprehensive instrument and should serve as a model for br eadth of its scope in the development of assessments of PAC for individuals with SCI. It seems clear that assessments that

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38 explore individuals’ needs beyond functional ab ility to perform ADL’s would be more successful in predicting PAC need. Personal Assistance and a Model of Disablement New rehabilitation models examine disabi lity by exploring many constructs in addition to functional status. According to Disler and colleagues (1993), a paradigmatic shift in outcome rehabilitation occurred w ith the introduction of the World Health Organizations (WHO)’s Internat ional Classification of Impa irments, Disabilities, and Handicaps (ICIDH). The authors po int out that the scope of this model was far broader at it attempts to introduce taxonomy of conseque nces of illness, and introduces standard terms of impairment, disability, and handicap. Substantial revisions to the ICIDH have lad to the most recently developed disa bility model known as the International Classification of Functioning (ICF) (A rthanat, Nochajski, & Stone, 2004). The theoretical framework of the ICF M odel demonstrates limitations of just examining and individual’s ability to be independent with ADL’s for determining all PAC needs. This model provides a unified a nd standard language and framework for the description of health and hea lth-related states. The ICF mo del is made up of two parts (Figure 3). The first part includes compone nts of functioning and disability. This component includes the body function compone nt, which fall under two classifications. One classification is for functions of body systems, which involves physiological or psychological functions. The other classifica tion is for body structures, which includes anatomic parts of the body such as organs, limbs, and their components (WHO, 2001). Activities and participation cover a comple te range of areas denoting aspects of functioning from both an individu al and societal perspective. Activities are defined as “an execution of a task or involvement in a life situation in a uniform environment.”

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39 Participation is described as “t he execution of a task or invol vement in a life situation in an individual’s current e nvironment” (WHO, 2001). The second part of the ICF model includes components of contextual factors, which are external features of physical, social, and world attitudes, which can have an impact on the individual’s performance in a given domain. These features are described as Environmental factors and can impact the func tioning and disability part of the model. Organization of these contextu al factors is based on sequenc e from the individual’s most immediate environment to the general environment. Personal Factors is also a component of contextual factors but they are not classifi ed in the ICF because of the large social and cultural variance associated with them. (WHO, 2001). A ll components within the two domains of the ICF contribute to a model of disablement. The disablement scheme of the ICF model involves central goals to delineate the major pathways from disease or active pathology to various types of functional consequences (Jette, 1994). The pathway descri bed by the ICF is bi-directional. This bidirectional approach contrasts previous models such as th e Nagi Model and the National Center for Medical Rehabi litation Research (NCMRR) model (See Figure 3). A case example can help to better under stand how the ICF model can serve as a guide for understanding an individual with SC I’s PAC needs. The following example is based on an individual with a diagnosis of comp lete C6 tetraplegia. According to the ICF model, the health condition or disease would be the spinal cord injury. The individual could have significant functional limitations, which may lead to requiring assistance with activities of daily living. The pa ralysis as a result of the leve l of spinal cord injury and

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40 physiological deficits would fall under bodily functions and structures while ADL’s would make up the activities component of the model. The individual’s participation Figure 3. ICF Model would include the ability to execute tasks in society such as leisure, home/yard maintenance, vocational, and educationa l activities. According to Hagglund and colleagues (2004) more research is critically needed in the area of participation to document increased participation with increase s in PAC services. Such evidence would help legislators respond, especi ally if it were to show econom ic advantages and benefits of increased participation in the community. Such participatory tasks may be limited due to other components of the model such as secondary health conditions, environmental factors, and personal factors. Secondary health conditions may be acute illnesses, re spiratory problems, or conditions associated with spinal cord injuries. Environmental factors may include lack of funding to support

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41 PAC. Lack of funding, leadi ng to lack of PAC, will most lik ely lead to deficits in the functional, activities, participat ion, and possibly health conditions arenas. Personal factors refer to the particular background of an individual’s life and living, and comprise features of the individual that are not part of a health condition or health states. These factors may include gender, race, age, other health conditions, fitness, lifestyle, habits, upbringing, coping styles, soci al background, education, pr ofession, past and current experience (past life events and concurrent ev ents), overall behavior pattern and character style, individual psychological assets and other characteristic s, all or any of which may play a role in disability at any level (WHO, 2001). The bi-directional pathway of the ICF m odel incorporates the medical and social model. The medical model views disability as a personal problem, directly caused by a disease, trauma, or other health condition, wh ich requires medical care. The social model views disability, not as an attribute of an i ndividual, but rather a complex collection of conditions, many of which created by the soci al environment. The social components (environmental, participation, activities) can impact or be impacted by the medical components (body structure, he alth condition) (WHO, 2001). The FIM appears to be ignoring many social components of the ICF Model, likely due to the fact that the FIM was created fo r assessing inpatient functional dependence. The ICF Model demonstrates how neglecting any component of an individual’s disability needs, can lead to not only deficits in overa ll PAC, but deficits in an individual’s quality of life and health. A comprehensive assessm ent of PAC need that incorporates all components of the ICF Model appears warranted.

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42 Role of the Life Care Planner Life care planners, as discussed in Chapte r 1, assess people with disabilities’ needs well beyond function. In order to make such an assessment, the life care planner must develop a consistent methodology for analyz ing the needs created by the onset of disability (Deutsch, 1995). Such a methodol ogy includes a comprehens ive review of all available medical, psychological, psychosocial, and rehabilitation-re lated information. In addition the life care planner reviews records for school-aged children and comprehensive work histories for adults. It is important that the life care planner be aware of all medical and rehabilitative as pects of the case and determine what other evaluations may be needed to identify the in dividual’s disability-related needs. The life care planner must consistently communicate with other rehabilitation professionals involved in the case (Medipro seminars, 2004). Such professionals may include: physical therapists, occupational therapists, speech therapists, physicians, nurses, psychologists, and any other profe ssionals involved. Prof essionals who often conduct life care plans include: catastrophic case managers, rehabilitation psychologists, rehabilitation counselors, or rehabilitation nurses (D eutsch & Kitchen, 1994). A major role of the life care planner is to utilize research and resources to substantiate recommendations. Life care pl anning recommendations must be datasupported, rather than based on simple opinions. Data shoul d be collected from many resources, getting information about the individual client as well as exploring relevant research studies which have been published, re lated to needs of sim ilar individuals with disabilities (MediPro Seminars, 2004). Table 1 is an example of an attendant care component of a life care plan, which includes specific types of personal attendant car e services, specific items for each service,

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43 frequency of services, and the annual cost for such services. As seen in Table 1, attendant care may include assistance in home health issues or medical issues, housekeeping, home maintenance and repair, and ya rd care and maintenance. The life care planner must conduct a through evaluation of an individual’s PAC needs before recommending such services. As seen in Table 1, recommendations may change as individual progresses through his/ her lifespan. For example, as seen in Table 1, this the frequency of an individual ‘s PAC increases af ter the age of 55. This is due to decrease in functional ability associated with the aging process. The life care planner must be able to make a comprehensive assessment of an indi vidual with a disabil ity needs so that the appropriate care is designated throughout his/her lifespan. LCP Knowledge and Competencies –Framework of the ICF Model The ICF appears to be an excellent m odel for life care planners in evaluating needs and services for individua ls with disabilities. Life care planners must have a thorough knowledge of the medical and social and environmental aspects of disability. As evident by the ICF model (Figure 2), me dical and social implications can greatly impact each other, thus affecting th e overall level of disability. Knowledge of the contextual factors as outli ned in the ICF model is critical for life care planners in making recommendations. Each individual is differe nt, in that he/she resides in his/her own environment. Life care planners must be attentive to certain barriers that often limit persons with specifi c disabilities to complete activities and participate in society. Barriers may exist at different levels a nd may vary depending on type of disability. The life care planner mu st be aware of resources, which may include technology that is available to minimize such barriers and rest rictions. As evident by the

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44 ICF model, such restrictions can affect health conditions and body systems thus reducing life expectancy. Table 1. PAC Component of a LCP Description/ Service: Rationale: Through Age: Cost: Frequency: Annual Cost: Beginning: 2002 Ending: Age 55 $9.41$10.68/ hr Avg 3 hrs/day 365 days/year (approx 21 hours/week) $10,304 $11,695/ year Home Health Aide/Personal Aide or Personal Care Attendant Provide assistance with transfers, safety precautions Beginning Age 55 Ending: Life Expectancy $19.00$23.00/ hr Avg 5 hrs/day 365 days/year (approx 35 hours/week) $34,675$41,975/ year Beginning: 2002 Ending Age 55 $7.99$8.65/hr Avg 3 hrs/day 365 days/year (approx 21 hours/week) $8,725$9,446 /year Housekeeper Provide assistance with household cleaning, maintenance, driving to and from appointments, errands Beginning Age 55 Ending: Life Expectancy $7.99$8.65/hr Avg 4 hrs/day 365 days/year (approx 28 hours/week) $11,633$12,594/ year Home Maintenance and Repair Replacement services for minor home repair and maintenance Beginning 2002 Ending: Life Expectancy $10.00$12.00/ hr Avg 5 hrs/month 50 weeks/year $600$720/year Yard Care and Maintenance Replacement services for yard care Beginning 2002 Ending: Life Expectancy $10.00$12.00/ hr Avg 8 hrs/month 9 months/year $720$864/year The life care planner must also be aw are of how the aging process and life experience of individuals with disabilities can affect activities and participation For example, individuals with SCI who utilize a manual wheelchair ( activity and participation) for most of their lives will often develop rotator cuff tribulations ( health condition) Such problems can trigger the need fo r that individual to require a motorized

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45 wheelchair. Such complications need to be projected in a life care plan so that the individual receives adeq uate services when the problems arise. Finally, life care planners are consistently required to educate themselves as to the research associated with catas trophic disabilities. As t echnology advances, and as new techniques are developed to treat various disa bilities, the needs of those individuals will change as well. Other areas include proj ected complications related to injury, the recommendations of assistive devices, the n eed for medications, the need for therapeutic modalities, and the need for PAC. Strong re search support can determine whether a life care plan is accepted and provide a means fo r educating all parties involved. For example, empirical studies that demonstrate th e potential for individuals with spinal cord injuries to develop pressure sores would support the recommendation for assistance with transfers if the individual is not capab le of transferring independently. Life care planners consider all componen ts of the ICF model. The bi-directional map of the components within the ICF model app ears to be similar to the approach that is taken by Life Care Planners when evaluating an individual with a disability. The ICF model demonstrates the dynamics behind disability, thus it is similar to the dynamics of a LCP. It would seem that the perspective of a professional life care planner, skilled in evaluating disability needs from all aspects of the ICF model, would be a valuable in assessing an individual with SCI’s PAC needs. Summary and Rationale for a Comprehensive PAC Instrument As indicated in this chapter, the need for PAC services is on the rise as individuals with disabilities are living l onger and healthier lives. In response to this increase, legislators and people with disabilities have made a strong effort to increase public funding for PAC services. Programs involving such funding have been functioning at the

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46 state level, although more recently, disability advocates have been pushing for a national system of PAC. The lack of success of a nati onal program is in part due to a high level of unmet PAC need and the concern that such l ack of current assistance will lead to an enormous financial burden on the federal gov ernment. Unfortuna tely, the financial burden to provide PAC assistance has falle n upon state Medicaid programs and such programs have been unsuccessful. Furthermore, the lack of met need has the potential of causing individuals to have many health relate d problems. It would appear that these health related consequences such as hos pitalizations, instituti onal care, and higher medications would have a major economic im pact on current government funded health care programs. Thus, reducing unmet need would ease the burde n of funding health related consequences. In addition, the fede ral government’s fear of the “wood work” effect as discussed earlier might be decrease d if legislators have an accurate and precise understanding of individuals with disabilities’ PAC needs. Such an instrument could be used to estimate the cost of providing such services. Having such information will allow legislatures to compare the co st of providing such services with the cost of paying of health related consequences associated w ith unmet need. In addition, such knowledge could be used by disability rights activist s when lobbying for national legislation to fund PAC. Currently, the only instrument being used to predict cost of PAC as demonstrated by the literature is the FIM. The FIM have been lauded for being able to predict PAC needs, however, there are many limitations of this instrument including inadequacy in breadth of coverage and lack of sensitivity to complete func tional ability. As discussed in this chapter, researchers, in order to pr edict the cost associated with PAC needs have

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47 relied on the FIM. Such studies have been limited due to the fact that FIM focuses on self-care tasks when there are many highe r order aspects of productive functioning associated with disability. In order to truly predict the cost of PAC services, one has to consider such services beyond the as sistance with self-care tasks. Agencies contracting with the government n eed to be able to rely on better cost predictors of PAC in order to be able to ut ilizing public funding to provide such services. In addition, a comprehensive assessment woul d allow agencies to have an enhanced understanding of the PAC services require d by individuals with SCI. Knowledge obtained by such an assessment will ensure th at appropriate assistance is provided to meet all the PAC needs of an individual with SCI resulting in less prevalence of unmet need. In addition to agency directed care, as indi cated in this chapter, it is evident that individuals with SCI are dire cting their own PAC services. As such, a comprehensive assessment of PAC needs will allow individuals with SCI to appropriately hire, train, and manage individuals to provide such serv ices. It would seem reasonable that a comprehensive understanding of one’s own PA C needs would have a positive impact on the success, type and amount of assistance r eceived. In order to obtain a comprehensive understanding of all th e activities associated with PAC, the development of such an assessment should incorporate the first-hand knowledge of individuals with SCI. In addition to integrating the perspective of individuals with SCI, the development of a complete PAC assessment should follow modern models of disablement. New models examine disability by exploring many co nstructs in addition to functional status. Models such as the ICF incorporate a synthesis of different perspectives of health from a

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48 biological, individual, and social perspective. Life care planners experienced in making PAC recommendations for individuals with SCI often make recommendations using methodologies that coincide with many aspect s of the ICF Model. As such, life care planners would be valuable in the developm ent of a comprehensive assessment of PAC need for individuals with SCI.

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49 CHAPTER 3 METHODOLOGY The aim of this study was to collaborate w ith life care planning experts as well as veterans with SCI, to understand the critical constructs and items, necessary to examine the need for PAC. To achieve these resear ch goals, two separate qualitative techniques were implemented and discussed below. Th e University of Florida Health Science Center Institutional Review Board (IRB-01) and the Veterans Administration (VA) Subcommittee for Investigations approved the present study prior to the enrollment of participants. Research Question 1 What are the critical constructs and items necessary to examine the need for PAC services for veterans with SCI from th e prospective of the professional? Subjects Certified life care planning experts (n= 100) were selected from a mailing list provided by the MediPro Seminars Life Care Planning Certifica tion Program. The experts selected had worked for at least thr ee years as a life care planner in order, to assure that they could make knowledgeab le recommendations for PAC. Based on a review of the literature and in order to obtai n diversity in opinion, the investigator set a goal of twenty-four experts to be participants in all three rounds. Participants were selected using a purposeful sampling stra tegy (Patton, 2002). As described by Patton, (2002), purposeful sampling is a concept that involves the selecti on of cases that are “information-rich and illuminative, that is they offer useful manifestations of the

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50 phenomenon of interest.” (p. 40). Since the j ob of a life care planning expert is extremely demanding, there was a concern of a possibility for a lower return rate of participant responses. Therefore, this researcher selected 100 participants from whom to solicit responses, in hopes of reaching the goal of obt aining responses from at least 24 experts. Sampling Procedure A web-based Delphi technique was used for the development of constructs and items to be included within a PAC measure. The Delphi technique is a method of soliciting and combining the opi nions of group experts. This technique originated from research at the RAND Corporation as a means for predicting the future policy developments (Brown, Cochran, & Dalkey, 1969). The method involves a rapid and efficient way to combine the knowledge and abilities of a diverse group of experts by quantifying variables that are e ither intangible or vague (Linde rman, 1981). The Delphi Technique is essentially a series of questi onnaires. The first questionnaire asks the participants to respond to a series of open-ended questions; the second round questionnaire consists of a series of clos ed-ended questions th at are built upon the responses to the first round of questioning. Successive ques tionnaires give participants feedback on the collective responses of th e group, providing the opportunity for subjects to modify their responses. The ultimate goal of this technique is to achieve an overall consensus or level of agreement for a sp ecific inquiry (Williams et al., 1994). The process builds on the qualitat ive responses of experts and measures the group’s responses quantitatively (McBride, Pate s, Ramadan, & McGowan, 2003). Key characteristics of the Delphi appro ach are: 1) anonymity of survey panel members, 2) anonymity of responses, 3) multiple iterations, 4) statistical analysis of panel response, and 5) controlled f eedback of responses to panel members. This approach

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51 prevents any one member of the panel from unduly influencing the responses of other panel members. Through the statistical su mmaries and minority reports, panel members communicate with each other in a limited, goalcentered manner. The systematic control lends an air of objectivity to the outcome, which provides a sh aring of responsibility that is reassuring and releases th e participants from group inhi bition (Linderman, 1981). This technique has been regularly us ed in medical and health serv ices research (Herdman et al., 2002) and is suitable for problems wher e there is insufficient or contradictory scientific evidence. The Delphi Study methodology offers a number of advantages to the study of PAC. First, the method allows for the development of expert opinion w ithout bias, which can readily occur, in comparable techniqu es such as committee meetings or group discussions. Such techniques can lead to pa nel members being intimidated or inhibited from expressing their views due to stronger individuals dominating the group. As such, the Delphi Method encourages honest opinion th at is free from peer group pressure. Additionally, panel members have the opportunity to have more time to think about the issues being discussed with the added capabi lity to retract, alter or add further views (Williams et al., 1994). Finally, the Delphi approach ensures the ability to collect data from a diverse panel in terms of geographi c location, experience, gender, and education. Delphi Procedure This investigator developed a list of ope n-ended questions based on review of the literature, standards of practi ce, and preliminary data from brainstorming with life care planning experts in regards to significant issues to explore in developing a PAC assessment for individuals with SCI. In a ddition, demographic quest ions were developed

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52 to assess diversity in terms of gender, age, education and training, occupation, and experience. The next step involved applying the firs t round of questioning onto a web-based format. The Quask Form Artist software program was used to develop online forms that would be easily accessible to the part icipants. This web form design program enables the user to collect a nd analyze data through a wide ra nge of export and statistical analysis functions (Quask, 2004). The rationa le for using a web-ba sed approach is to expedite the data collection process and allo w participants the convenience of completing online forms as opposed to having to mail re sponses. The software program provided a means for obtaining the data from participan ts immediately following the completion of the survey. Furthermore, the program provide d a means to easily track the response rate of participants. Once the initial round of questions was de veloped, the survey was alpha tested on four expert life care planners affiliated with the University of Florida. These participants were notified via email and were directed to the website location to participate in the survey. The participants were asked to respond with comments and suggestions for making the first round questionnaire more appropriate and comprehensible. This investigator incorporated the recommendations from the alpha testing into the initial round of questions to be sent to the 100 life care planning experts (Appendix A). Delphi round 1 All 100 experts were contacted via email and a requested to participate in the Delphi Study (Appendix B). As incentive fo r participation, the experts were informed that they would receive five continuing educat ion credits (CEU’s) towards their life care planning certification. This investigator obtained pre-approval to provide the CEU’s

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53 from the Commission on Health Care Certific ation. In addition, an endorsement letter from Paul Deutsch, a leading expert who i nnovated the concept of life care planning, was included with the initial email (Appendix B). The email directed the participants to the website to complete Round 1. The website was located on the College of Public Health and Health Professions secure server. Once the participant accessed the website, they were required to review a page containing a waiver of documentation of consent which explained their rights as a re search subject (Appendix A). If the respondent selected “yes”, they indicated they understood their righ ts as a research subj ect and were directed to the survey. If the responde nt select “no”, the web brow ser closed and the respondent did not see the questionnaire. At the end of the survey, the respondents were instructed to submit their responses along with their email address once the survey was completed. A friendly reminder email was sent to the e xperts two weeks following initial contact (Appendix C). Delphi round 2 Once the data was received, it was analyzed for content using NVivo Qualitative Software. NVivo is designed for researcher s who need to combine subtle coding with qualitative linking, shaping and modeling. The pr ogram works as a fine-detailed analyzer by integrating the processes of interpretation and focused que stioning. Rich text records are freely edited and coded and linked with multimedia. The software enables researchers to take qualitative inquiry beyond coding and re trieval, supporting fl uid interpretation and theory emergence (QSR International, 2002). The software facilitated the retrieval of rich text records from the Quask Web Software. Once the data was imported, this in vestigator coded all of the responses based on emerging themes to be included for th e second round questionnaire. Since the

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54 purpose of this study was to generate items and constructs to be included on a PAC measure, specific activities related to PAC se rvices were coded and used to develop the items for Round 2 of the Delphi Study. Round 2 of the Delphi Study consisted of closed questions in which participants were asked to rate the importance of each item when recommending PAC services in a LCP. E ach item was to be rated on a Likert Scale from 1 (strongly disagree) to 4 (strongly ag ree). Participants al so had the option of selecting “not sure” to an activity if they c ould not come up with an applicable rating. Following the same methodology for Round 1, an email (Appendix D) was sent to all the experts directing them to the website to complete Round 2 (Appendix E). At the end of the survey, participants had an opportun ity to respond with specific comments in regards to Round 2. Additionally, the res pondents were instructed to submit their responses along with their email address on ce the survey was completed. Similar to Round 1, a friendly reminder email was sent to the experts two weeks following initial contact (Appendix F). Once the Round 2 questionnaires were received, they were analyzed to determine the consensus among all of the experts. Cu rrently, there are no uni versally agreed upon standards for establishing consensus (F ink, Kosekcoff, Chassin, & Brook, 1984). However, Rowe & Wright (1999) reviewed em pirical studies looking at the effectiveness of the Delphi technique and indicated that typical Delphi stud ies involve consensus techniques that include the pr esentation of medians and inter quartile ranges. For each item from Round 2, interquartile ranges were calculated as measures of dispersion and median scores were calculated as measures of central tendency. The combination of these indices was used to determine the degree of im portance and consensus for each activity.

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55 Medians rather than means were used in re porting back to the re spondents in order to diminish the effects of outliers (Currier, 2001) The median and interquartile range of responses for each of the items were calculated using SPSS software (SPSS Inc., 2001). Delphi round 3 Once the consensus data was calculated, these results were sent along with a third questionnaire to the experts (Appendix G). The experts we re presented with the same activities listed in Round 1 along with their pr evious responses and consensus data. The participants were then asked to review thei r previous responses along with the consensus data and reconsider or revise their answer. Following the same methodology for Rounds 1 and 2, an email (Appendix H) was sent to all the experts direc ting them to the website to co mplete Round 3. At the end of the survey, the respondents again had the opport unity to provide comments in regards to the Round 3 and were instructed to submit thei r responses along with their email address once the survey is completed. Similar to pr evious rounds, a friendly reminder email was sent to the experts two weeks followi ng initial contact (Appendix I). Research Question 2 What are the critical constructs and items necessary to examine the need for PAC services from the prospectiv e of veterans with SCI? Rationale for Interviewing Veterans with SCI The rationale for interviewing veterans w ith SCI is that they are the individuals experiencing the disability first hand, and it can be argued that no one better understands the challenges they face. Additionally, not involving the population for which the PAC assessment is to be utilized would appear to be a limitation in the development of such an instrument.

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56 Subjects A convenience sample comprised of eight veterans with SCI, from the Malcolm Randall Veterans Administration Medical Center in Gainesville, FL was used for this study. Participants were selected using a purposeful sampling strategy (Patton, 2002) as discussed earlier. This technique was chosen since it involves selec ting a small sample of information-rich cases that yield insight s and in-depth understanding rather than empirical generalizations. Patton (2002) discusses an example: If the purpose of an evaluation is to increase effectiveness of a program in reaching lower-socioeconomic groups, one may learn a great deal more by studying in depth, a small number of car efully selected poor families than by gathering standardized information from a large statistically representative sample of the whole program p.230. This researcher met with his committee members and determined that 8 veterans with variable levels of SCI would be adequate enough to yield an in-depth understanding of PAC. Procedure The purposeful sampling strategy follows an a pproach used in qualitative research. Over the past ten years, qualitative met hods have become more commonplace in health services research (Mays & Pope, 2000). The goal of qualitative research is the development of concepts which help researchers understand social phenomena in natural (rather than experimental) settings, givi ng due emphasis to the meanings, experiences, and views of all participants under study (Pope & Mays, 1995). This investigator selected qualitati ve interviews as a method for fully understanding the impact of PAC on individual s with SCI. Qualitative interviewing is a flexible and powerful tool, which can assist the researcher in obtaining diverse opinions of research participants (Britt en, 1995). In order to facilitate this qualitative approach,

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57 the standardized open-ended interview a pproach as described by Patton (2002) was implemented. This type of interview consiste d of a set of questions carefully worded and arranged with the intention of taking each respondent through the same sequence and asking each respondent the same questions with essentially the same words. The technique involved the use of an interview guide (Appendix J) in order to ensure that the same basic lines of inquiry were pursued with each person. The advantage of an interview guide is that it makes certain that the interviewer has carefully decided how best to use the limited time available in an interview situa tion (Patton, 2002). Additionally the approach guara ntees that the respondents an swered the same questions, thus increasing comparability of responses. These semi-structured interviews allow for a divergence between the interviewer and interviewee in order to pursue an idea in more detail (Britten, 1995). Add itionally, this approach al so facilitated collection, organization, and analysis of the data (Patton, 2002). All eight interviews were recorded usi ng a digital voice reco rder. Before the interview took place, all part icipants were required to sign a consent form, which acknowledged their rights as research subjects At the completion of each interview, this researcher digitally transferred the intervie w onto a CD-ROM. The CD-ROM was sent to a transcriber, who provided the researcher with an electronic tr anscription of the interview in rich text format. All eight inte rviews averaged around 45 minutes in length. Data Analysis Data analysis was conducting using NVivo Qualitative Software. As discussed earlier, NVivo is intended for researchers who need to combine subtle coding with qualitative linking, shaping and modeling. NVivo provides the researcher with a means for handling qualitative data records and information about them, for browsing and

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58 enriching text, coding it visually or at cat egories, and annotating and gaining access to data records accurately and sw iftly (QSR International, 2002) In order to answer the current research question, this researcher browsed and code d the data based on specific constructs and items to be incl uded within an instrument th at assess PAC for individuals with SCI. Additionally, the qualitative data was further scrutinized to obtain a full understanding of the PAC needs for individu als with SCI. Such information will facilitate further development of the currently created PAC assessment, which will included determining if the items generated by this study are truly representative of the needs of individuals with SCI. Coding In order to extrapolate the information discussed above, coding techniques were implemented. Coding in NVivo involves the creation of nodes based on the qualitative documentation. Using coding techniques, this researcher converting the qualitative data into a crudely quantifiable form as to answer the research question. This method led to the coding of items to be included in a PAC a ssessment. Once all the data was coded, the nodes were then analyzed. The analysis is aimed at constituting proof for a given proposition, in this case the contribution of items towards a PAC assessment (Glaser & Strauss 1967). This researcher utilized the Constant Comparative Method to analyze the qualitative data. According to Glaser & Stra uss (1967), this approach combines specific coding procedures with theory development. The author points out that this method can lead to an attainment of complex theory that corresponds closely with the data since constant comparisons force the analyst to consider much “diversity” in the data. According to these authors “diversity” refers to the comparison of each incident with

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59 other incidents in terms of si milarities and differences. Making such comparisons helps the researcher overcome bias si nce concepts can be compared amongst all the participants (Corbin & Strauss, 1990). Researcher Bias There is a concern with qualitative res earch relating to the extent to which predispositions or biases of the evaluator ma y affect data analysis and interpretations (Patton, 2002). Often data from and about hum ans inevitably represent some degree of perspective rather than absolute truth (Pa tton, 2002). To overcome this concern, this researcher made every effort to maintain “r eflexivity”. According to Malterud (2001), “reflexivity” refers to an at titude of attending systematica lly to the context of knowledge construction especially to the effect of the researcher at every step of the research process. The author states that once reflex ivity is maintained, personal issues can be valuable sources for releva nt and specific research. This researcher took many steps to atte nd systematically to the context of knowledge construction at every stage of the research process, thus limiting researcher bias. The first step of meeting this goal wa s to take applicable coursework in qualitative methods from professors experienced in conducting qualitative research. Through this coursework, this researcher developed the interview guide (appendix J) used for data collection. The next step involved getting tr ained by a professional qu alitative researcher in the utilization of statistical software fo r analyzing qualitative data. This step was crucial for not only providing an understandi ng of how to use software program, but for facilitating the understanding of coding t echniques commonly used in qualitative research. The training professional was al so available for cons ultation throughout the research process. Next, this researcher frequently consulted with my committee

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60 chairperson in regards to them es emerging from the data. This step allowed for continual validation of my research findings. Finally, this researcher con tinuously recognizes his personal bias that can influenc e this qualitative process. A personal bias statement is discussed below. Personal Bias Statement I have been involved with people with di sabilities my entire life and career. Growing up with a brother with a developmenta l disability has definitely influenced my desire to ensure that people with disabilitie s receive services necessary to live productive lives as independently as possible. As a rehabilitation counselor, my work involves assisting individuals in with disabilities in returning to work, obtaining public funding, and adjusting to personal issues relative to their disabilities. Th rough my education and career, I have been very familiar with barri ers affecting people with disabilities from participating in society as well as current a nd past disability legi slation and policy. I believe that personal assistance is an importa nt service that can allow individuals with disabilities to participate in society. A dditionally, I support legi slation that ensures individuals with disabilities r eceive funding support for attendan t care services. As such, my personal bias may influence my interpre tation of the qualitative data supporting the receipt of more types of PA C for individuals with SCI.

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61 CHAPTER 4 RESULTS Introduction This chapter reports the results of two methodologies used to determine the necessary items to be included in a measure of PAC for individuals with SCI. The first section includes the results of the Delphi Study involving expert Life Care Planners and the second section is comprised of results of qualitative interviews with veterans with SCI. Delphi Study Alpha Testing Round 1 Once the questionnaire for Round 1 of the Delphi Study was completed and placed on the web server, four local expe rt Life Care Planners affili ated with the University of Florida were requested to review the surve y. A summary of the expert’s comments and actions taken by this researcher are incl uded in Table 2 and discussed below. The first comment regarded the level of SCI the experts should consider when preparing to respond to the questions. There wa s a concern that if i ndividuals were asked to consider someone whose injury was at t oo high of a level such as C-1, C-2 or C-3, experts would simply state that the indi vidual needs 24-hour PAC and not carefully consider the necessity of each individual servi ce. This level of lesi on is often associated with the need for total assistance in activ ities relating to ADL’s, domestic activities, transportation, respiration, and mobility (Cons ortium for Spinal Cord Medicine, 1999; Authority, 2002). In order to ensure that participants in the Delphi Study responded to

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62 the specific activities requiring PAC, particip ants were asked consid er individuals with level C-4 or below, complete or incomplete spinal cord injuries. The next comment referred to providing a clear definition of personal assistance and replacement services. Life care pl anning Experts are required to examine individual’s activities performed prior to thei r time of injury. This process makes certain that proposed recommendations include assistance with activ ities that were performed independently prior to the injury. Such recommendations are often referred as replacement services. Since replacement se rvices play a major role in the decision process of Life Care Planners when making PAC recommendations, the following definition of such services was provided: Personal Assistance is defined as services to assist with maintaining personal hygiene, general health serv ices, personal appearance, activities of daily living, general comfort in life environment, safety, and interactions with the community and society that are related to requirements imposed by the disability. Replacement Services are defined as essential services needed post ons et of disability that represent responsibilities and serv ices related to house hold activity, yard and property maintenance, and home/auto maintenance that were performed independently prior to the disability The next comment referred to informing th e experts of the number of questions they will be required to comp lete in order to finish Round 1 of the Delphi. The experts felt that having such knowledge would reduce the chance that participants would not complete the entire survey. As such, the in struction page included a statement regarding the number of questions to be completed a nd each question was titled with the question number along with the total number of questions (e.g. Question 1 of 11, 2 of 11, etc…). The subsequent comment involved the need to provide examples for each of the questions in order to guarantee that the expe rts have a clear unders tanding of how they

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63 are expected to respond. There was a concer n that the experts would not be specific when responding, which would inhibit the gene ration of items to be included on a PAC assessment. As such, questions regard ing housekeeping, activiti es of daily living, home/yard maintenance, transportation, wor k, education, and leisure activities included one or more examples. For example when part icipants were asked to list all specific housekeeping activities they consider when r ecommending services in a Life Care Plan, examples of washing dishes and vacuuming were included. One of the experts indicated he had a difficult time reading the questions due to the fact that a blue background w ith white fonts were used in creating web survey. In order to rectify the issue, all the background colo rs were changed to gray and white and the font colors were changed to black. Another issue that resu lted from the alpha test related to participants having to be repetitive in their responses. This resulte d in the experts respondi ng with text such as “see previous question.” This issue direc tly related to questio ns regarding how the experts determine the need for PAC services fo r all activities that they report. Most of the experts stated that very often re fer to the personal interview, physician recommendations, and therapist evaluations/rec ommendations for all types of PAC. As such, they were frustrated with having to keep repeating the same response for each questions relating to the topic of determining PAC need. The action taken to remedy this problem included providing one questi on, which stated the following:

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64 In determining the need for personal a ssistance or replacement services for all the activities you previous ly listed, most Life Care Planners refer to the personal interview, physician recommendations, and therapist evaluations/recommendations. Are ther e any additional sources you use to determine the need for personal assistance or replacement services for the following types of activities? The final comment referred to the use of a ssistive devices to make up for the need for PAC. Some of the experts indicated that they would not recommend PAC services if there was the availability of a ssistive devices. For example, an individual that may need personal assistance in transferring may be able to acquire a hoyer lift Such a device can allow an individual with a SCI to transfer i ndependently. As a result, the individual may not require personal assistance for transferring activities. This rese archer was concerned that not all individuals have accessibility to such devices and may still require personal assistance. To curtail professionals from limiting recommendations based on assistive devices, the following statement was included: We realize the importance of assis tive devices/technology in regards to personal assistance. However, when asked to specify activities that constitute ADL's or replacement services, please list possible activities without regard to the availability of assi stive devices/technology.

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65 Table 2. Comments and Actions fr om Alpha Testing of Round 1 Comment Action Taken Provide a specific level of Spinal Cord Injury as an example that would require an individual to require a significant amount of personal assistance Included a statement on the instruction page requesting information in regards to an individual with a C-4 and below incomplete or complete SCI. Provide a clear definition of personal assistance and replacement services. Personal Assistance and Replacement Services were clearly defined in the instruction page. Specify the number of questions so that the participant can monito r his/her progress. The instruction page included a statement informing the participants the number of questions they will be asked to respond to. Provide examples associated with the questions relating to generating items. Questions regarding housekeeping, activities of daily living, home/yard maintenance, transportation, work, education, and leisure activities included one or more examples. Change the font and background colors to make it easier to read for older Life Care Planners with visual limitations All colors were removed from the survey and only gray, black, and white colors were used. Condense questions regarding sources used to make PAC recommendations for each construct to reduce need to repeat responses throughout the survey All questions regarding sources used to make PAC recommendations were incorporated into one page with examples. Difficult to consider PAC without acknowledging the availab ility of Assistive Devices for replacement services and ADL’s. Participants were asked to specify activities that constitute ADL's or replacement services, without regard to the availability of assistive devices/technology.

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66 Panel Demographics Of the 100 expert Life Care Planners so licited for this study, 31 participated in Round 1. Participant ex perience ranged from 3 to 29 year s. Participant age ranged from 36 to 65 years. Additional information describing these participants is listed in Table 3. There was a higher representation of females (87.1%) than males (12.9%) in the sample. This gender proportion is consistent with the high proportion of females to males among Life Care Planners in general. Next, th ere were diverse resp onses to the question regarding the highest level of education atta ined. One (3.2%) participant indicated the highest degree as being a High School Dipl oma. Five (16.1%) indicated that the Bachelor’s degree was the highest degree earned Sixteen (51.6%) re ported their highest degree as a Master’s Degree. Two (6.5%) in dividuals held Doctoral degrees. One (3.2%) individual reported his/her hi ghest degree earned as a te chnical degree. Finally, six (19.4%) of the participants sel ected ‘other’ when choosing the highest educational degree earned. It should be noted that one of the individuals who responded with ‘other’, also indicated he/she had obtained a Bachelor’s degree. In addition to education, the participants provided a pletho ra of credentials, which ar e described in Table 4. As indicated in Table 4, there are many certifications associated with Professional Life Care Planners. It is often the case that Life Care Planners hold numerous certifications. This sample included 29 (93.6%) individuals w ho currently have the Certified life care planning (CLCP) credential. Al so, a large portion of the participants (84%) held at least one type of nursing credential. Nine (29%) of the participants reported being a Certified Rehabilitation Counselor (CRC), while 19 (61.3%) reported bei ng Certified Case Managers (CCM)’s.

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67 Table 3. Panel Demographics Factor Frequency Percentage Gender Males412.9 Females2787.1 Education Level Bachelor’s Degree 516.1 Master’s Degree1651.6 Doctoral Degree26.5 Technical13.2 High School13.2 Other*619.4 One individual responded to having a bach elor’s degree and a de gree designated as ‘other’ Table 4. Panel Credentials Credential Name Abbreviation Count Percentage % Certified Rehabilitation Counselor CRC 9 29 Certified Case Manager CCM 19 61.3 Certified Life Care Planner CLCP 29 93.6 Certified Rehabilitation Re gistered Nurse CRRN 7 22.6 Certified Disability Manage ment Specialist CDMS 9 29 Certified Vocational Evaluator CVE 1 3.2 Licensed Professional Counselor LPC 3 9.7 Registered Nurse RN 17 54.8 Speech Language Pathologist SLP 2 6.5 Occupational Therapist OT 1 3.2 Certified Legal Nurse Consultant CLNC 2 6.5 Other Credential Not Specified Other 13 41.2

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68 Delphi Round 1 Experts responded to Round 1 of the Delphi with 198 activities to consider when making PAC recommendations for individuals with SCI. Th e activities are listed in Table 5. These activities were based on res ponses from questions regarding PAC for ADL’s, housekeeping, home/yard maintenance, transportation, leisure activities and work/education. Table 5. Delphi Study Results Round 2 (N=25) Round 3 (N=25) Activity Med. IQR Med. IQR Med. Bowel/Bladder Mgmt. 4.00 4.00 4.00 4.00 4.00 4.00 0 Cooking 4.00 3.00-4.00 4.00 3.00 4.00 0 Communication Activities 4.00 3.00 4.00 4.00 3.00 4.00 0 Laundry 4.00 3.00-4.00 4.00 3.00 4.00 0 Dressing 4.00 4.00 4.00 4.00 4.00 4.00 0 Grooming 4.00 4.00 4.00 4.00 4.00 4.00 0 Drinking 4.00 4.00 4.00 4.00 4.00 4.00 0 Eating 4.00 4.00 4.00 4.00 4.00 4.00 0 Endurance Activities 4.00 3.00 4.00 4.00 3.00 4.00 0 Health Management 4.00 4.00 4.00 4.00 4.00 4.00 0 Hygiene 4.00 4.00 4.00 4.00 4.00 4.00 0 ADL’s 4.00 4.00 4.00 4.00 4.00 4.00 0 Judgment/Decision Making 4.00 3.00 4.00 4.00 3.00 4.00 0 Managing Medication 4.00 3.00 4.00 4.00 3.00 4.00 0 Mobility 4.00 4.00 4.00 4.00 4.00 4.00 0 Maintain environ. controls 4.00 3.00-4.00 4.00 3.00 4.00 0 Orthotics Management 4.00 3.00 4.00 4.00 3.00 4.00 0 Lifting activities 4.00 3.00-4.00 4.00 3.00 4.00 0 Safety 4.00 4.00 4.00 4.00 4.00 4.00 0 Self-Care 4.00 3.00 4.00 4.00 3.00 4.00 0 Adaptations setup 4.00 3.00-4.00 4.00 3.00 4.00 0 Stair Climbing 4.00 3.00 4.00 4.00 3.00 4.00 0 Teeth Brushing 4.00 3.50 4.00 4.00 4.00 4.00 0 Telephone Use 4.00 3.00 4.00 4.00 3.00 4.00 0 Toileting 4.00 4.00-4.00 4.00 4.004.00 0

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69 Table 5. (cont) Round 2 (N=25) Round 3 (N=25) Activity Med. IQR Med. IQR Med. Transferring 4.00 4.00 -4.00 4.00 4.00 4.00 0 Washing 4.00 4.00 -4.00 4.00 3.50 4.00 0 Fine motor movement 4.00 3.00 -4.00 4.00 3.00 4.00 0 Emergency egress 4.00 3.00 -4.00 4.00 3.50 4.00 0 Muscle strengthening 4.00 3.00 -4.00 4.00 3.00 4.00 0 Shopping 3.50 3.00 -4.00 4.00 3.00 4.00 +.50 Shopping (transport.) 4.00 3.00 -4.00 4.00 3.00 4.00 0 MD/Therapy appts. (transport.) 4.00 3.25 -4.00 4.00 3.00 4.00 0 Pharmacy (transport.) 4.00 3.00 -4.00 4.00 3.00 4.00 0 Professional activities (transport.) 4.00 3.00 -4.00 4.00 3.00 4.00 0 School (transport.) 4.00 3.00 -4.00 4.00 3.00 4.00 0 Clean up after meals 3.00 3.00 -3.50 3.00 3.00 3.00 0 Clean crown molding 3.00 2.00 -3.00 3.00 2.00 3.00 0 Clean dishes 3.00 3.00 -4.00 3.00 3.00 3.00 0 Clean drapes/curtains 3.00 2.00 -3.00 3.00 3.00 3.00 0 Clean closets 3.00 2.00 -3.00 3.00 3.00 3.00 0 Clear cobwebs 3.00 2.00 -3.00 3.00 3.00 3.00 0 Clean garage 2.50 2.00 -3.00 3.00 2.00 3.00 +.50 Dusting 3.00 3.00 -3.00 3.00 3.00 3.00 0 Clean roof gutters 3.00 2.00 -3.00 3.00 2.00 3.00 0 Cleaning light fixtures 3.00 2.00 -3.00 3.00 2.00 3.00 0 Grocery management 4.00 3.00 -4.00 3.00 3.00 4.00 -1.00 Handling paperwork 3.00 3.00 -4.00 3.00 3.00 3.00 0 Clean A/C vents 3.00 2.00 -3.00 3.00 2.50 3.00 0 Spring/Fall cleaning 3.00 3.00 -4.00 3.00 3.00 3.00 0 Ironing 3.00 2.25 -3.00 3.00 2.25 3.00 0 Computer Activities 3.00 3.00 3.00 3.00 3.00 4.00 0 Personal Business 3.00 3.00 3.00 3.00 3.00 3.00 0 Maintain storage area 3.00 2.00 -3.00 3.00 2.00 3.00 0 Maintain clothing 3.00 3.00 -4.00 3.00 3.00 4.00 0 Retrieve/Open/Read Mail 3.00 3.00 3.00 3.00 3.00 3.50 0 Maintain alarm system 3.00 3.00 -4.00 3.00 3.00 4.00 0 Making Beds 3.00 3.00 -4.00 3.00 3.00 4.00 0 Managing daily schedule 3.00 3.00 -4.00 3.00 3.00 4.00 0 Managing household finances 3.00 3.00 -4.00 3.00 3.00 4.00 0 Mopping floors 3.00 3.00 -4.00 3.00 3.00 3.00 0 Rearranging environment 3.00 2.00 -3.00 3.00 2.00 3.00 0 Open/Close windows 3.00 2.25 -4.00 3.00 2.00 3.00 0 Organizing Kitchen 3.00 2.00 -3.50 3.00 2.00 3.00 0 Pet-Care 3.00 2.00 -3.00 3.00 2.50 3.00 0 Furnace/AC Maintenance 3.00 2.00 -3.00 3.00 2.00 3.00 0 Sweeping with a broom 3.00 3.00 -4.00 3.00 3.00 3.00 0 Childcare 4.00 3.00 4.00 3.00 3.00 4.00 -1.00

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70 Table 5. (cont) Round 2 (N=25) Round 3 (N=25) Activity Med. IQR Med. IQR Med. Turning over mattress 3.00 2.00 -3.00 3.00 2.00 3.00 0 Using a dishwasher 3.00 3.00 -3.00 3.00 3.00 3.00 0 Vacuuming 3.00 3.00 -4.00 3.00 3.00 4.00 0 Washing walls 3.00 2.00 -3.00 3.00 2.00 3.00 0 Washing windows 3.00 2.00 -3.00 3.00 2.25 3.00 0 Taking out the garbage 3.00 3.00 -4.00 3.00 3.00 4.00 0 Garden management 3.00 2.00 -3.00 3.00 2.00 3.00 0 Filling gas tank 3.00 3.00 -3.00 3.00 3.00 3.00 0 Disposing of debris 3.00 2.00 -3.00 3.00 2.00 3.00 0 Lawn mowing 3.00 3.00 -3.00 3.00 3.00 3.00 0 Leaf blowing 3.00 2.00 -3.00 3.00 3.00 3.00 0 Changing light bulbs 3.00 3.00 -3.00 3.00 3.00 3.00 0 Outdoor repairs 3.00 2.00 -3.00 3.00 2.00 3.00 0 Snow management 3.00 3.00 -3.00 3.00 3.00 3.00 0 Restore power outages 3.00 2.00 -3.00 3.00 2.00 3.75 0 Using a string trimmer 3.00 2.00 -3.00 3.00 2.00 3.00 0 Raking 3.00 2.00 -3.00 3.00 2.00 3.00 0 Watering garden/grass 3.00 2.00 -3.00 3.00 2.00 3.00 0 Volunteer (transport.) 3.00 3.00 -4.00 3.00 3.00 3.75 0 Theater (transport.) 3.00 3.00 -3.00 3.00 3.00 3.00 0 Social outings (transport.) 3.00 3.00 -4.00 3.00 3.00 4.00 0 Carrying work/school supplies 3.00 3.00 -3.50 3.00 3.00 3.00 0 Test taking 3.00 2.75 -4.00 3.00 3.00 4.00 0 Taking a break at work/school 3.00 2.00 -3.00 3.00 3.00 3.00 0 Typing reports 3.00 2.75 -3.00 3.00 3.00 3.00 0 Tutoring 3.00 2.00 -3.00 3.00 3.00 3.00 0 Dictate reports/letters/notes/etc. 3.00 3.00 -3.25 3.00 3.00 3.00 0 Entering/Exit work/school 3.00 3.00 -4.00 3.00 3.00 4.00 0 Getting on/off elevators 3.00 3.00 -4.00 3.00 3.00 4.00 0 Escort at work/between classes 3.00 3.00 -4.00 3.00 3.00 4.00 0 Fax/Copy/Sort/File activities 3.00 3.00 -3.00 3.00 3.00 3.00 0 Work/School related lifting 3.00 3.00 -4.00 3.00 3.00 4.00 0 Job coaching 3.00 2.75 -4.00 3.00 3.00 4.00 0 Note taking 3.00 3.00 -4.00 3.00 3.00 4.00 0 Parking 3.00 3.00 -4.00 3.00 3.00 3.00 0 Using portable ramps 3.50 3.00 -4.00 3.00 3.00 4.00 -.50 Work/School preparation 3.00 3.00 -4.00 3.00 3.00 4.00 0 Computer/Tech assistance 3.00 3.00 -4.00 3.00 3.00 4.00 0 Transcribing 3.00 3.00 -3.00 3.00 3.00 3.00 0 Admin./Registration Issues 3.00 2.75 -4.00 3.00 3.00 3.75 0 Library usage 3.00 3.00 -4.00 3.00 3.00 3.50 0 Homework 3.00 3.00 -4.00 3.00 3.00 4.00 0 Manage work/school activities 3.00 3.00 -4.00 3.00 3.00 3.00 0

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71 Table 5. (cont) Round 2 (N=25) Round 3 (N=25) Activity Med. IQR Med. IQR Med. Organizing school projects 3.00 3.00 -3.00 3.00 3.00 3.00 0 Reading 3.00 3.00 -4.00 3.00 3.00 4.00 0 Setup school supplies 3.00 3.00 -3.25 3.00 3.00 3.00 0 Recording lectures 3.00 3.00 -3.75 3.00 3.00 3.00 0 Obtain work/school supplies 3.00 3.00 -3.75 3.00 3.00 3.00 0 Sport activities 3.00 3.00 -3.00 3.00 3.00 3.00 0 Adapted P.E. 3.00 3.00 -4.00 3.00 3.00 4.00 0 Therapeutic horseback 3.00 2.00 -3.00 3.00 2.00 3.00 0 Annual recreation camps 3.00 3.00 -3.75 3.00 3.00 3.00 0 Adapted skiing 3.00 2.00 -3.00 3.00 2.00 3.00 0 Adapted aquatics 3.00 3.00 -3.00 3.00 3.00 3.00 0 Camping 3.00 2.00 -3.00 3.00 2.00 3.00 Church/Comm. activities 3.00 3.00 -3.75 3.00 3.00 3.75 0 Wheelchair rec. programs 3.00 3.00 -3.75 3.00 3.00 4.00 0 Cycling activities 3.00 3.00 -3.00 3.00 3.00 3.00 0 Emotional well-being activities 3.50 3.00 -4.00 3.00 3.00 4.00 0 Exercise/Gym activities 3.00 3.00 -4.00 3.00 3.00 4.00 0 Fishing 3.00 2.00 -3.00 3.00 2.00 3.00 0 Hobbies 3.00 3.00 -4.00 3.00 3.00 3.75 0 Hunting 2.00 2.00 -3.00 3.00 2.00 3.00 +1.0 Internet Access/email 3.00 3.00 -4.00 3.00 3.00 4.00 0 Kayaking 2.00 2.00 -3.00 3.00 2.00 3.00 0 Watching movies 3.00 2.00 -3.00 3.00 2.00 3.00 0 Outward bound 3.00 2.00 -3.00 3.00 2.00 3.00 0 Pre-injury activities 3.00 3.00 -4.00 3.00 3.00 4.00 0 Spontaneous events (transport.) 3.00 3.00 -3.50 3.00 3.00 3.00 0 Clean baseboards 3.00 2.00 -3.00 3.00 3.00 3.00 0 Social recreation 3.00 3.00 -4.00 3.00 3.00 4.00 0 Volunteering 3.00 2.00 -3.00 3.00 3.00 3.00 0 Support groups 3.50 3.00 -4.00 3.00 3.00 4.00 -.50 Clean blinds 3.00 2.00 -3.00 3.00 3.00 3.00 0 Running errands 4.00 3.00 -4.00 3.00 3.00 4.00 0 Sporting Events (transport.) 3.00 3.00 -3.25 3.00 3.00 3.00 0 Recreation (transport.) 3.00 3.00 -4.00 3.00 3.00 4.00 0 Bank (transport.) 3.00 3.00 -4.00 3.00 3.00 4.00 0 Church/Comm. (transport.) 3.00 3.00 -4.00 3.00 3.00 4.00 0 Dry Cleaning (transport.) 3.00 3.00 -3.25 3.00 3.00 3.75 0 Driving children to school 3.00 3.00 -3.75 3.00 3.00 3.00 0 Video store (transport.) 3.00 2.00 -3.00 3.00 2.00 3.00 0 Clean cabinets 3.00 2.00 -3.00 3.00 3.00 3.00 0 Getting a haircut 3.00 3.00 -4.00 3.00 3.00 4.00 0 Social Cognition 3.00 3.00 3.00 3.00 3.00 4.00 0

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72 Table 5. (cont) Round 2 (N=25) Round 3 (N=25) Activity Med. IQR Med. IQR Med. Getting take out food 3.00 2.75 -3.00 3.00 3.00 3.00 0 Hardware store (transport.) 3.00 3.00 -3.00 3.00 3.00 3.00 0 Clean bathtubs 3.00 3.00 -3.75 3.00 3.00 3.00 0 Library (transport.) 3.00 2.75 -3.25 3.00 3.00 3.00 0 Movies (transport.) 3.00 2.75 -3.00 3.00 3.00 3.00 0 Pay bills (transport.) 3.00 3.00 -4.00 3.00 3.00 3.00 0 Clean refrigerator 3.00 3.00 -3.00 3.00 3.00 3.00 0 Post office (transport.) 3.00 3.00 -4.00 3.00 3.00 4.00 0 Clean oven 3.00 2.25 -3.00 3.00 3.00 3.00 0 Restaurants (transport.) 3.00 3.00 -3.00 3.00 3.00 3.00 0 RV-ing 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Check tire pressure 2.50 2.00 -3.00 2.50 2.00 3.00 0 Waxing furniture 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Using a screwdriver 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Seasonal fertilizer 2.00 2.00 -3.00 2.00 2.00 3.00 0 Climbing ladders 2.00 2.00 -3.00 2.00 2.00 3.00 0 Hammering 2.00 2.00 -3.00 2.00 2.00 3.00 0 Hanging pictures 2.00 2.00 -3.00 2.00 2.00 3.00 0 Home decorating 2.00 2.00 -3.00 2.00 2.00 3.00 0 Landscaping 2.00 2.00 -3.00 2.00 2.00 3.00 0 Washing car 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Baling hay 2.00 1.00 -2.00 2.00 2.00 2.00 0 Carpentry repairs 3.00 2.00 -3.00 2.00 2.00 3.00 -1.00 Bush hogging 2.00 1.00 -3.00 2.00 2.00 2.00 0 Dead-heading 2.00 1.00 -3.00 2.00 2.00 3.00 0 Edging 2.00 2.00 -3.00 2.00 2.00 3.00 0 Electrical work 2.00 1.75 -3.00 2.00 2.00 3.00 0 Cutting firewood 2.00 1.00 -3.00 2.00 2.00 3.00 0 Start fire in fireplace 2.00 1.00 -3.00 2.00 1.25 3.00 0 Fixing squeaky doors 2.00 2.00 -3.00 2.00 2.00 3.00 0 Woodworking 2.00 2.00 -3.00 2.00 2.00 2.50 0 Putting down mulch 2.00 1.50 -3.00 2.00 2.00 3.00 0 Changing oil 2.00 2.00 -3.00 2.00 2.00 3.00 0 Shrub maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Painting 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Plumbing 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Pool maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Spa maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Pruning 2.00 2.00 -3.00 2.00 2.00 3.00 0 Putting up fixtures 2.00 2.00 -3.00 2.00 2.00 3.00 0 Maintain sprinkler system 2.00 2.00 -3.00 2.00 2.00 3.00 0 Remodeling 2.00 2.00 -3.00 2.00 2.00 3.00 0 Roof repair 2.00 1.25 -3.00 2.00 2.00 3.00 0 Trim work 2.00 2.00 -3.00 2.00 2.00 3.00 0

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73 Questions Not Included In Subsequent Rounds Due to the concern regarding participant attrition, questions not related to specific activities to consider when recommending PA C were not included in subsequent rounds (round 2 and round 3). Responses to these are listed in Table 6 and discussed below: Categories used to organize PAC in a Life Care Plan : The experts re sponded to this question with a breakdown of how they desi gnate PAC recommendations in a LCP. The categories used to depict PAC often help the individual reviewi ng a LCP to understand the basis for the recommendations. Objective assessments to determine the need fo r Personal Assistance in a Life Care Plan: As evidenced by Table 5, Life Care Planners rely on numerous assessments to determine PAC. While some Life Care Planners rely on ADL assessments such as the FIM, other experts utilize the client interv iew in determining PAC need. Sources used to determine the need for personal assistance or replacement services : Sources used for determining PAC need were summarized for all act ivities including: ADL’s, home/yard maintenance, transportati on, work/education, and le isure activities. Clearly, Life Care Planners explore many s ources of information that will help them make recommendations for PAC. These sour ces range from collaborating with church and community members to reviewi ng neuropsychological evaluations. Associating need with the number of hours for each type of service : The purpose of this question was to identify methods by which Life Care Planners associate the need for PAC with the number of hours to perform the r ecommended services. As evidenced by Table 6., there does not appear to be an objectiv e method for associating time to perform a service with need for such as service. It appears that experts ar e utilizing qualitative

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74 techniques to answer this question. The ma in themes that emerged from this question included: client interviews, observa tion, and extensive consultations. Table 6 Questions Not Included In Subsequent Rounds Question Responses Under what categories do you organize the parts of your Life Care Plan that address types of personal assistance and replacement services? Home Care, Nursing Care, Personal Care Assistance, Aide Level Services, Aids for Independent Living, Assistive Living Care, Attendant Care Services, Facility Care, Household/Home Maintenance, Replacement Services. What objective assessments do you use to help you determine the need for Personal Assistance in a Life Care Plan? ADL assessments, Family/Caregiver interview, Assessments/Evaluations of the Treatment Team, CHART, Client Interview, Clinical Practice Guidelines, Discharge evaluation, FAM, FCE, FIM. Foundational functional repo rts, Home Assessment, Independent Medical Evaluation, LCP Training Material Sources you use to determine the need for personal assistance or replacement services. Church and community members, Client real-life situation, Family, Friends, Internet searches, Leisure check list, Leisure Evaluation, Medical Records, Medical literature, Nature of disease course, Research, School records, College Office of Disabilities, Educational Evaluation, Employment Literature, family, historical goals, IEP, Institutional/academic advisor/counselor, Observe classes, Parents education level, Personal observation, Neuropsychological evaluations, School Records/Academic performance, Services provided by school district, Spinal Cord Injury Resource Center, State and Federal regulations, Teacher’s recommendations, Therapists, Vocational Evaluation, Work History, Employer, Employment Research Guidelines, Historical needs, Job Coach AAA, Adult day programs, Community agency programs, Driving Evaluation, expert in field of van/auto modification, Realtors Association statistics

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75 Table 6. (cont) Question Responses How the experts associate need with the number of hours for each type of service? Client interview, Clinical outcomes guidelines, Collaboration with treatment professionals, Common sense, Configure hours towards needed service, Consider time to perform activities, Agency stipulation, Personal experience as a Life Care Planner, Consult with employers, Follow-up evaluations Friends, Known demands of the activity, Level of care required, Literature, Needs assessment, Peer consultation, physical capacities evaluation, Physician documentation, Professional training, research, Suggestions of care givers, Triangulation of observation, Allow the client to function as he did prior to injury, enough care to allow for some spontaneity and some ability to conform to other people's schedules. Delphi Round 2 For the second round of the Delphi, 25 of the original 31 participants responded with their level of agreement to whether each of the 198 items listed in Table 5 should be considered when making PAC recommendations for individuals with SCI. The median (Med) and interquartile ranges (IQR) were calc ulated for each item and reported in Table 5. The interquartile range is the distance between the first and third quartiles (middle 50%) of the responses in a di stribution. These results corre spond to the following Likert scale used to measure the agreement for each item: 1=strongly disagree, 2=disagree, 3=agree, and 4= strongly agree. There was an initial high level of cons ensus after the second round of the Delphi study. This was evident due to the fact that after Round 2, 173 of the items had an

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76 interquartile range of 1 or less. In other wo rds, 87 percent of the activities demonstrated a low variability in level of agreement of responses from the participants. Delphi Round 3 For the third round of the Delphi, 25 participants had th e opportunity to reconsider their level of agreement to whet her each of the 198 items listed in Table 5 should be considered when making PAC recomme ndations for individuals with SCI. The activities are listed in order of consensus rela ting to the strongest agreement (indicated by the number 4) with the activities, and endi ng with items representing a disagreement (indicated by 2) to whethe r the activities should be c onsidered when making PAC recommendations. As with the previous round, median and interquartile ranges were reported as well as the change (Med. ) in Round 2 and Round 3 medians. Overall, 15 items resulted in a change in median from Round 2 to Round 3. Of the 198 total items, 183 (92%) resulted in no median change from Round 2 to Round 3. The results of the Delphi revealed an even greater consensus had been achieved among an even larger number of items as compared to Round 2. Evidence of this increase in consensus was seen in the greater convergence of the in terquartile ranges. Specifically, Round 3 resulted in 196 items having an interquartile range of 1 or less. Therefore, the number of items having a low variability in level of agreement increased to 99 percent. Additionally, at the conclusi on of Round 3, there was a total of 34 items (17%) that resulted in a final Median score below 3 (agr ee). These items are listed in Table 7. Among these items, there were 3 activities (waxing furniture, carpentry repairs, and using a furniture) that had median values of 3 (agree) in Round 2. These items appear to

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77 be directly to home maintenance type activ ities. Further discussion regarding these activities is included in the next chapter. Table 7. Items with a Median below 3. Round 2 (N=25) Round 3 (N=25) Activity Med.IQR Med. IQR Med. Waxing furniture 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Using a screwdriver 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Check tire pressure 2.50 2.00 -3.00 2.50 2.00 3.00 0 RV-ing 3.00 2.00 -3.00 2.50 2.00 3.00 -.50 Carpentry repairs 3.00 2.00 -3.00 2.00 2.00 3.00 -1.00 Bush hogging 2.00 1.00 -3.00 2.00 2.00 2.00 0 Dead-heading 2.00 1.00 -3.00 2.00 2.00 3.00 0 Edging 2.00 2.00 -3.00 2.00 2.00 3.00 0 Electrical work 2.00 1.75 -3.00 2.00 2.00 3.00 0 Cutting firewood 2.00 1.00 -3.00 2.00 2.00 3.00 0 Fixing squeaky doors 2.00 2.00 -3.00 2.00 2.00 3.00 0 Climbing ladders 2.00 2.00 -3.00 2.00 2.00 3.00 0 Hammering 2.00 2.00 -3.00 2.00 2.00 3.00 0 Hanging pictures 2.00 2.00 -3.00 2.00 2.00 3.00 0 Home decorating 2.00 2.00 -3.00 2.00 2.00 3.00 0 Landscaping 2.00 2.00 -3.00 2.00 2.00 3.00 0 Putting down mulch 2.00 1.50 -3.00 2.00 2.00 3.00 0 Changing oil 2.00 2.00 -3.00 2.00 2.00 3.00 0 Painting 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Plumbing 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Pool maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Pruning 2.00 2.00 -3.00 2.00 2.00 3.00 0 Putting up fixtures 2.00 2.00 -3.00 2.00 2.00 3.00 0 Remodeling 2.00 2.00 -3.00 2.00 2.00 3.00 0 Roof repair 2.00 1.25 -3.00 2.00 2.00 3.00 0 Start fire in fireplace 2.00 1.00 -3.00 2.00 1.25 3.00 0 Seasonal fertilizer 2.00 2.00 -3.00 2.00 2.00 3.00 0 Shrub maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Spa maintenance 2.00 2.00 -3.00 2.00 2.00 3.00 0 Maintain auto sprinkler system 2.00 2.00 -3.00 2.00 2.00 3.00 0 Woodworking 2.00 2.00 -3.00 2.00 2.00 2.50 0 Trim work 2.00 2.00 -3.00 2.00 2.00 3.00 0 Washing car 2.50 2.00 -3.00 2.00 2.00 3.00 -.50 Baling hay 2.00 1.00 -2.00 2.00 2.00 2.00 0

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78 Interviews with Veterans with SCI Participant Demographics Eight interviews were conducted with ve terans who had sustained spinal cord injuries. Demographic information is describe d in Table 8. All eight interviews were male and the age of the participants ranged from 50 to 75 years. The participants reported having various levels of SCI with the lowest level being L-5 and the highest level at C-3/C-4. Only one of the eight vetera ns with SCI stated that they had a complete SCI. Years since the time of injury ranged from 2 to 38 years. Table 8. Participant Demographics Participant Gender AgeLevel of Injury Complete or Incomplete Years Since Injury V1 M 65 T-5/T-6 Complete 30 V2 M 50 C-6 Incomplete 3 V3 M 52 T-4 Incomplete 38 V4 M 58 C-4/C-5 Incomplete 2 V5 M 57 C-5/C-6 Incomplete 2 V6 M 75 L-5 Incomplete V7 M 55 C-3/C-4 Incomplete 2 V8 M 61 T-12/L-1/L-2/S-2 Incomplete 27 Denotes missing data

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79 Specific Activities Coded The first part of the qualitative analysis of the interviews involved coding the data to identify specific types of activities for wh ich the participants required PAC. The coding resulted in 63 activities that are listed in Table 9. All 63 activities are related to PAC for hygiene, household chores and maintena nce, and hobbies and leisure activities. The participants reported needing assistance with these activities currently or in the past. Table 9. PAC Activities Reported From Veterans Bowel care Electrical work Catheterization Grocery shopping Applying creams/salves/lotions* Mowing Grass Dental hygiene* Edging Dressing Washing house* Ears cleaned* Washing the car Administering eye drops* Heavy lifting Eating Pool maintenance Getting into the bath to shower* Tilling the yard* Combing/brushing hair* Planting* Nails trimmed* Sweeping floors Nose cleaned out* Vacuuming Caring for pressure wounds* Baking* Shaving* Taking out garbage Putting on support hose* Cutting tree limbs* Transfers Raking Washing Carpet cleaning* Wound dressing* Cleaning ceiling fans* Laundry High work* Transportation Range of motion exercises* Table tennis* Mechanical Activities Activities requiring reaching hi gh* Getting on/off a motorcycle* Carpentry Getting wheelchair onto the grass* Computer activities Going to Church Farming Activities* Bailing hay Gardening Feeding the dog Denotes activities that were different than those identified by the Delphi Participants

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80 Upon initial examination of th e activities reported by vetera ns with SCI, 27 out of 63 items were different than the activities re ported by the Delphi participants. These activities specifically related to self-care and home maintenance activities (Table 9). Emerging PAC Themes While participants considered their res ponses to questions relating to specific activities that they require PAC, other themes materialized that appeared to have had a major impact on there need for such services Specifically, the following topics emerged and are discussed below: effect of mental state, independence, PA C services in place, scheduling, PAC during hosp ital stays, trus tworthiness, and spousal care. Effect of mental state A few of the participants discussed the importance of understanding an individual with SCI’s mental status when assessing PAC. The veterans indica ted that individuals with SCI can be depressed immediately followi ng their injury and it inhibits them from figuring out what they want to do with their lives. As such, these inhibitions would make it difficult to understand one’s total PAC needs. In the following example, VM2 discusses the stress and acceptance of a spinal cord injury in relation to getting on with one’s life. The participant refers to Tampa, which is the location of a Veterans Health Administration Rehabilitation Faci lity for veterans with SCI. In Tampa I see a lot of people get caught up in the now. You know, they stay stressed out. Some of them never come out of it. You have to think about what is going to happen and ju st find things you like doing and try to stick to that until you co me out of that and stay there and then you enjoy yourselves. It doesn't happen if you don't change. You would be surprised how many people stay stuck in their own, but that didn't happen to me. When they say that, I know when you get sad, like that it is hard to get out of it. When I woke up fr om my injury…when I woke up here rather, I knew something bad had happene d. So I dealt with it from day one. I never came into denial.

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81 VM5 discusses the relationship between mental state and personal assistance. You know I am not going to tell you I am not down some times but in terms of the help that I received, assistance, family and friends and community, I guess, my needing to be more independent, it has worked well for me. Certainly I feel sorry fo r myself every once in a while, all of us do once in awhile, why me, why did this happen to me, I have more things I want to do. It is a challenge that I have faced and it has given me some new insight. The consensus among the participants seem s to be that an individual’s mental status relates to the struggle of not being able to be inde pendent and having to rely on others to provide services such as PAC. VM8 discusses his personal experiences with others with SCI and their str uggle with independence issues. The earlier and the sooner you can get a guy to depend on himself, and get into that, depending on himself, ra ther than depending on somebody else, the better. You don't want to push, to a breaking point but then again, you don't want to keep waiting on them…T hen the less that they dwell on oh, poor me…Why wasn't it somebody else or what did I do God? It keeps the mind off yourself…Focus on what they can do and what they can improve on rather than telling them, well, you can't do this and you can't do that. Because when I first went in they said, you are not going to walk, you will have no bowel and bladder control, fo rget your sex life. All that is bullshit. I told them they were full of it. Of course, that is me. That is the type of person that I am. I was six y ears in the Marine Corps. and I have been riding Harley Davidsons with a club for 50 years. I started building and riding Harleys when I was 13. My dad rode and my two uncles rode and I built my first one and I started building my first Harley when I was 13. But it was the way I was brought up. You don't depend on other people. You do your own thing but you do not be stubborn about it. There are things that I cannot do. Bu t, I always have access to someone that can do it for me. You can't get these guys to just sit around all day. I spent 13 months the first time in the hospital but when I started getting around, and these young kids would be th ere, oh, boo hoo this and that, I would follow them up in their beds b ecause they would get up and I would push all the buttons and make them get out of bed...I would fold the bed in on them and they would get mad at me But I would get them out of the bed. I would say, I want to show you something. I would take them down to the weight room… Get them started. If they pursue it they do. If they don't, hey, I gave it a shot. In some way it was rehab for me. Helping the other guys.

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82 Based on the personal reports the veterans with SCI often reported difficulty working through their emotional struggl e with adjusting to their injury. Independence The struggle for independence was a general theme among some of the participants. The veterans pa rticipating in this study expres sed the importance of staying as independent as possible but at the same time were aware of certain situations when an individual may need the help of ot hers. VM3 discusses this issue: When I got injured I was 30 something. I did not know I was going to need this much assistance. Then I was told about having a caregiver, even though I was strictly taught through re hab to be independent. I stay independent as much as I can possibly. But always look ahead at the fact that you are going to have some bad days and you need someone there. There is no being totall y independent. Get that out of your mind. You may feel that you are totally indepe ndent but you must have someone, a back up. Someone you can call on, a friend, or a neighbor, though you are independent, that you can call on and get help. Because rescue may not be fast enough. As pointed out by this participant, even though an individual may be independent in certain activities, there may situations when assistance is needed and it is it important to have such services available. A different viewpoint was reflected in th e statement of VM4. This participant seeks to avoid the need to rely on assistance altogether and uses independence as a means to get stronger: I don't like people helping me When I need them they won't be there. I just I don't probably there are a lot of things that could have helped me. They would have helped me but they would have made me weaker. That is how I feel about an assistive device I don't use any more than I have to. I don't like pills or pain pills. I don't do anything that I can possibly get by without. I think the less personal care if I can get by without it I do. I am fortunate. I have been blessed. I re member the time when I had to be catheterized and I had to have help run a bowel movement, helped out of bed. Helped be turned over but, I think that refusal and denial using assistant devices has help me get stronger. That is one of the reasons that I

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83 have gotten better…I don't believe ther e is nothing I can't do. I believe that if a ballet dancer can dance on he r toes and an ice skater can skate on ice, I can walk on size 11 shoes. That is my theory and I trying real hard to do it and I am getting to where I can do it a little better. I can get better and pretty soon I will be doing it normal. That is what I am counting on. PAC services in place The previous themes focused on mental he alth and the issue of independence. Another theme that emerged that can impact adjustment to a SCI and to a lack of independence involves ensuring that services are in plac e before an individual is discharged from acute care. VM5 discusses this issue: When I was getting ready to go out of rehab, there were things that needed to be done, in my home, to get rea dy for me to come home, like a ramp had to be built, the floor of the bathroom and those kind of things. It was not a great amount of need but things needed to be done. I had some assistance from the state spinal cord association. The girl did not follow through…. I think those kinds of things for people who have their needs to be more planned. It is a scary thing coming home and not being able to do things you could do before, having so mebody to wait on you. The biggest thing is the coordination efforts so there is not that much stress on the individual…The people I talked to in rehab, most of us were not prepared certainly for going through things like that. You know, no matter where you lived, your home was not ready fo r something like that. I live on a rock road. I live in the country. It would not be easy to move around. We have had those things built so I could get up and down. This participant struggled with the fact that his attendant care services were not in place when he was discharged from rehabilita tion. Having the stress of not having these services would appear to greatly impact the ab ility of an individual with SCI to adjust to his/her disability.

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84 Scheduling In addition to having PAC services in place following discharge from a rehabilitation hospital, scheduling of such se rvices should coincide with the needs of the individual utilizing such serv ices. The scheduling of PAC can impact the ability of individuals with SCI to be involved in other lif e activities such as employment. VM2 discusses the impact of PAC for bowel management on his vocational activities: Bowel care which takes liter ally a half a day…only way to do it is to just sit and get a suppository and wait for th e results. Then it comes out and you put it in the bag. They wait for a bout an hour for the suppository to come back out. If it doesn't co me out, it stays in, you know…explosions.. That is really embarrassing. That is why the guys that have it in the evening, they don't get caught like that…. I would rather it be after six. If you are doing it in the evening and you are being in the bed, it won't be disgusting in front of people… That way when voc rehab does find something for me to do, I can work fulltime instead of part time. This participant expressed c oncerns about the ability to schedule PAC for his bowel management. Unfortunately, the PCA comes in the morning, which means that he may have to wait a few hours for a bowel movement. If he doesn’t have a bowel movement, the participant is then concerned that that he could have an acci dent later on during the day. At this time the participant may be wo rking or taking part in activities outside his/her home. This can very embarrassing a nd becomes a barrier to participating in community activities. As pointed out by this participant, proper scheduling of such services, for example, in the evening would reduce the embarrassment since, he would be home if it occurred.

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85 PAC during hospital stays An important theme that transpired from the interviews was the issue of PAC during stays in the hospital. As pointed out in Chapter 2, there are many potential complications associated with SCI, which can result in an individual having to stay in a hospital for some duration. VM5 discusses a problem of transitioning from PAC in a rehab setting to PAC at the hospital: I know the hospital, I was at Shands two times…The hospital staff was good but when I got to rehab, it was diffe rent. Shands rehab was a totally different experience. Those people were there for you. They were there. At the hospital they need to make sure you are surviving and make sure you get acute care. But the time when I went back in the hospital, I have been so spoiled and taken so well ca red for at the rehab, if you know, you do need to have an aide if you have a button and you push it and somebody was there right. When I went back in the hospital, I pressed the button and it might be five minutes that I have to press it again. I understand that they were very bus y, but you know, one the things that when I need a urinal bottle I could not wait. Finally, when a nurse came in and said, can I help you, I said, it was too late. Now you have to clean the bed up. I got back to rehab and I said, I am so glad I am back here. You people took good care of me. They were Johnny on the spot. Trustworthiness Adjusting to the fact that an individual has to rely on another individual for personal assistance can be a difficult adjustment for a veteran with SCI. One theme that materialized relating to this issue was the effort to find someone trustworthy enough to provide such services. VM1 discussed an example: I think the biggest thing is trustwor thiness. Because people who are going to have this kind of care are going to have a live in and if they are not living in they are not going to help you much. If you have to pick up the phone to call them and get them and whether or not they are there. There are times when she is not there and goes off and does things on her own. But the majority of the time I can rely on her. Now, the trustworthiness, because she is living in your house, because right now I go off by myself when she is there.

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86 This same participant goes on further to disc uss trust in terms of being comfortable and adjusting to embarrassment associated with the opposite gender of the person providing PAC services: It is hard to find a man that would be an attendant caregiver for a guy. A woman would not mind doing it, but fo r the guy to get over the initial embarrassment to me that is probably th e hardest part… Well, both of us would to some extent. When she first came down to help me, we sat down and I had a long talk with her and I sa id, you know, this is not going to be an easy job. Most of the time I take care of myself and I don't need help but there will be a few times I will. I tried to explain stuff the best way that I could, then you are thinking now I left out the part that I am going to be naked…There is an embarrassing poi nt in there where you just got to get over that hill and everything is fine after that…If your were married or something it might be a different s ituation. You are requiring him from time to time to help you with pers onal hygiene, you know, and stuff like that. There is an embarrassing factor there to start with. Spousal care A final theme that emerged from the interviews related to the importance of having a spouse provide PAC a nd concerns with such care: VM6: You just have to make sure th e personal care attendant can handle taking care of you. My wife does it as long as she is able. That could change. Right now she is where she could do it. But, if not there are things that I would have to do. My wife had knee surgery and had blood clots. I could do a lot of it but I could not without sa y a van. For instance I could not drive it by myself somebod y would have to go with me… One time I was on a bicycle doing exercises with the hand thing and it works the leg too. I slipped off on the floor. My wife walked out of the room and when she came back she said, wh at are you doing on the floor? I just slipped off. How are we going to get you up? I had to scoot over to the couch with my wife lifting and helping me and she got me up on the couch. I got the chair back up. But there are times when we holler for the grandkids. One time the lights went off and I fell in the living room with the wheelchair and it is a drop down. In stead of being still until my wife got the candles, she go t on the phone and got the grandkids and they all came flying over. They put me b ack. We have good grandkids…we have a good family. Some people have family that is really bad.

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87 This participant expressed a concern that even though his spouse can handle his PAC, there might be a time when her health condition or inability to handle strenuous activities can impact the veteran. He also st ated the importance of having other family members available to provide PAC services as well. Another participant explains the financial strain associat ed with having a spouse as the caregiver, and including the caregi ver in the rehabilitation process: VM7: It is like I took care of the bills. I was the one that made the money. Her little bus driver job did not pay a whole lot, every two weeks and it threw us into a hole. She was d ealing with losing her job, to do this, my insurance, everything. It is just li ke, there is no help out there for the caregiver, none. Although they are expected to be here 24 hours a day she is a diabetic and she cannot go to a doct or because she lost her insurance. It was over a year and a half before she went and got her diabetes pills, because she had none. …When I was sent to Shands rehab they told my wife how to take care of me from head to toe, how to deal with my trach and she cleaned it out. She cha nged, she did everything down to the feeding tubes and she cleaned that, and she fed me…She did my bowel care and bladder catheter and everythi ng…. Let the caregive r be a part of the process. It is going to be hers so oner. She is part of it. She would be more relaxed if she were part of it when we were ready to go home. The next chapter will include a discussion regarding these themes and how they implicate future research related to PAC.

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88 CHAPTER 5 DISCUSSION Introduction This study involved acquiring and examining the activities necessary to consider when making PAC recommendations for individual s with SCI. This chapter is divided into four sections, which discu ss the findings presented in the previous chapter. The first section includes an overview of the significan t findings from both the Delphi Study and the Qualitative Interviews. The second s ection describes limitations of this study. The third section illustrates implications of the findings for practice and policy. The final section includes recommendations for further research and development of the findings of this study. Overview of Significant Findings Delphi Study Of the 100 experts, solicited for this project, 25 completed all three rounds of the Delphi study. The results of the st udy indicated that the Delphi technique was effective in generating a large item bank of activities that one should consider when making PAC recommendations for individual s with SCI. Furthermore, consensus techniques allowed this resear cher to determine that ther e was a strong agreement that professionals should consider at least 164 of the generated activities when recommending PAC for individuals with SCI. The approach to assessing the level of consensus included comparing the medians and the interquartile ra nges of all the items between the second and third round.

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89 The items generated by the experts were comprehensive and were comprised of activities related to self-care, home/yard ma intenance, transportation leisure, work, and education. Self-care activit ies such as dressing, groomi ng, bowel/bladder management, and eating were similar to items included in current ADL assessments such as the FIM (Granger & Hamilton, 1986), th e MDS (Health Care Financ ing Administration, 1998), and the Barthel Index (Mahoney & Barthel, 1965). Other items relating to home/yard maintenance, transportation, leisure, wo rk, and education corresponded to other constructs, not currently being assessed by other instruments used for predicating PAC. As such, the views of the life care planne r participants would appear to support the position that assessment for the provision of PAC services is a comprehensive process that should not be limited by relyi ng solely on an assessment of ADL’s. Results and the ICF model As pointed out in Chapter 2, recommendi ng PAC based solely on individual’s ability to be independent with ADL’s is incons istent with the ICF M odel of disablement. This model combines biological and social vi ews of disability. Specifically, The ICF model, describes disability in terms of health conditions, body function, activities and participation, and the environment The pathway described by the ICF is bi-directional and which means that each component of the model can impact another component of the model and vice versa (World Health Organization (WHO), 2001). The 164 activities from this study would fall under the activities and participation components of the ICF model. As discussed in Chapter 2, activities and participation cover a complete range of areas denoting asp ects of functioning from both an individual and societal perspective. Activities are defined as “an execution of a task or involvement in a life situation in a uniform environment.” Participation is described as “the execution

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90 of a task or involvement in a life situation in an individual’s current environment” (World Health Organization (WHO), 2001). The results of Delphi study demonstrated that of the 164 activities to be considered when recommending PAC services, only ei ght of the activities represented ADL activities. These activities included: bowel/bladder management, dressing, grooming, drinking, eating, hygiene, toileting, and tran sferring. Based on the ICF, ADL’s would make up a small portion the activities component of this modern model of disablement. A majority of the other activities resulting from the Delphi study represent the additional activities and participation components of the ICF model. These activities allow an individual with a disability to execute ta sks in society such as leisure, home/yard maintenance, vocational, and educational activities. As pointed out earlier, the ICF model is bi-directional and as such, deficits in certain components of the model can have ma jor consequences on other components. For example, if an individual does not receive assistance with acti vities that contribute to quality of life such as wo rk, leisure and e ducation, that individual could suffer detrimental health consequences. Such consequences include the possibility of depression, decline in physical function due to lack of activ ity, and fear and anxiety in regards to not being able to be a produc tive member of society. Furthermore, as discussed in Chapter 2, funding for PAC services is currently focused towards assistance with ADL’s (Kennedy, 1997). As such, the bi-directional pathway of the ICF model demonstrates how lack of funding to support PAC for additional activities resulting from this study and could lead to deficits in the functional, activitie s, participation, and possibly health conditions arenas.

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91 Items to be excluded The LCP participants not only reached consensus on the items that should be considered when recommending PAC for i ndividuals with SCI, but also reached considerable agreement in regards to what activities should not be considered when making such recommendations. Specifically, th ere was consensus that 34 items, most of which related to maintenance type activities should not be considered when making PAC recommendations. These included activit ies such as pool maintenance, painting, electrical work, landscaping, cutting firewood, r oof repair, and carpentry repairs. Further scrutiny of these items is necessary to determ ine why the LCP participants felt that these items should not be considered when recomm ending PAC services. One possible theory for the exclusion of the items could be the unequal distribution amongs t the experts. The percentage of females (87.1%) under study was much greater than the percentage of males (12.9%). There is a possibility that because these mainte nance items are more commonly performed by males, females might feel that the need for assistance in conducting these activities is not injury relate d and would therefore, exclude them from consideration in a Life Care Plan. Additionally, a majority of the life care planning participants were nurses (77.4%) and may be primarily trained to assess personal assistance with self-care ac tivities. Finally, maintena nce activities, although often referred to as replacement activ ities or activities that an individual may have performed independently prior to injury, are not performed independently by people without disabilities. As such, participants may ha ve decided that such maintenance activities should not necessitate the need for personal a ssistance because the individual would have hired someone to perform the activity whether or not they had a spinal cord injury. These

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92 possible theories demonstrate the subjectivity that can impact the te chniques utilized by Life Care Planners when ma king PAC recommendations. Such subjectivity was demonstrated by the expert’s responses to Round 1 questions relating to techniques employe d when making recommendations for PAC (Table 6). These included techniques for categorizing recommendations, current assessment tools, utilization of sources in making PAC recommenda tions, and strategies for applying frequency and duration of need in association with specific PAC services. It is apparent that LCP expert s as a group are not relying on any one method for making PAC recommendations. Rather, they are utiliz ing an eclectic approach that incorporates the recommendations of the LCP professional as well as the opinions of rehabilitation collaborators. Qualitative Interviews Qualitative interviews were conducted to obtain the perspective of veterans with SCI in regards to the necessary constructs and items to consider when making PAC recommendations. Utilizing the constant comparative method described by Corbin & Strauss (1990), the researcher coded a number of activities to which veterans with SCI currently require PAC. These 63 items were comprised of activities relating to personal hygiene, leisure and hobbies, and housekeeping/ home maintenance. There were 27 items that were different than the activities repor ted by experts in the Delphi study. These items appeared to be activiti es related to personal hygiene and maintenance activities. Additionally, the veterans were a little more specific in their descriptions of the activities with which they require assistance. For example, the experts listed general hygiene related activities while the veterans stated explicitly, specific groomi ng activities such as combing hair, applying lotions, and shaving.

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93 Even though many of the ac tivities described by the vete rans further validated the responses from the experts, the veterans appear ed to currently not have issues related to the amount of PAC received, however, their issues related to the quality of PAC services. As such, probing questions relating to assi stance revealed a number of themes that impacted the participants’ need for PAC. Th ese themes included issues of mental state, independence, PAC services in place prior to discharge, scheduling, trustworthiness, hospital setting, and spousal care, each of which are discussed below. Mental health According to the participants, the issue of decline in mental health due to awareness of physical limitations had a strong influence on the rehab ilitation process of these individuals with SCI immediately follo wing their injuries. This finding is consistent with previous research that suggests that individuals with SCI may immediately recognize the long-term consequen ces of their injuries when they discover the extent of their paraly sis (Lohne & Severinsson, 2004). In this study, veterans suggested that depressive symptoms might l ead to lack of motivation among individuals with SCI to focus on activities that can be pe rformed as opposed to ac tivities that cannot be performed. As such, individuals lack ing motivation to be independent due to depressive symptoms might appear more dependent then they really are. For example, if an individual does not have the motivation to explore his/her abilities to perform specific activities, then that individual may appear to require additional PAC services. These findings implicate further research into the eff ects of mental health on the need for PAC. If further research substantiates this theo ry then, a psychological screening tool to determine if there as an asso ciation between need for assistance and mental status should be administered prior to conducti ng an assessment of PAC need.

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94 Independence In addition to mental status, several vetera ns reported a strugg le with independence issues in view of functional li mitations associated with their SCI. As discussed earlier in this chapter, the veterans str uggled to describe activities wi th which they require personal assistance. A possible theory related to this struggle could be a cultural issue associated with male veterans. A majority of the ve terans under study appeared to portray strong will and conviction to be able to perform activities independently. In fact many of the veterans appeared to view assistance as a weakness. The question remains whether these views represent a culture associated with gender or culture associated with veterans. In any case, both views may represent a masc ulinity issue. In fact, according to the literature, cultural beliefs about male physic al strength becomes an issue as men with disabilities try to make cu ltural ideals of manhoo d fit with their physical limitations. Furthermore, men can get caught between the pressure exerted by a dominant masculinity, on the one hand, and the limitations and perceived weakness that come with that disability (Stansbury et al, 2003) Further research is warranted to ex plore cultural issues in relation to PAC. PAC services in place prior to discharge An interesting finding that emerged from this study was the importance that participants ascribe to establishing PAC servi ces prior to discharge from a rehabilitation facility. The veterans talked about the diffi culty of adapting to one ’s home environment after sustaining a SCI. Having PAC serv ices in place prior to entering the home environment could facilitate the adjustment of an individual with SCI by ensuring that activities can be performed ev en if certain environmental barriers still exist. For example, as one participant pointed out, many homes are not equipped to accommodate

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95 an individual with SCI, which can result in an increase in the need for personal assistance. These findings s uggest that when assessing the need for PAC, clinicians should determine not only what services are n eeded, but also when those services will be implemented and the impact of the accessibi lity of the individual’s home environment on such services. Scheduling The issue of scheduling PAC was identified to be an important theme associated with societal participation. One veteran discussed the st ruggle of revolving his daily activities around personal assistan ce with bowel care. In this case, PAC services were in place, however, the participant had a difficult time scheduling vocational activities due to the fact that he was required to adhere to the scheduling of the PAC provider. The veteran expressed a desire to be able to ma nage the scheduling of PAC according to his own daily needs. The challenges of managi ng a PCA have been cited frequently in the literature as an issue of major importance (Ulicny, Adler, & Jone s, 1990; Lanig, Chase, Butt, Hulse, & Johnson, 1996; Busta, 1992; Weas 2002). Consistent with the literature, the participants in this curre nt study felt that the process of recommending PAC services should coincide with education on how to manage such services. Managing a PCA requires the skills of interviewing; personal management, and task design and can affect the relationship between the clie nt and the PCA (Busta, 1992). Trustworthiness The productivity of the relationship betw een the PCA and individuals with SCI appears to be directly related to how well a client perceives the PCA as being trustworthy. The theme of trust appeared to be a primary concern among the veterans when discussing the issue of PAC. As noted in the last chapte r, veterans appear to have

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96 great difficulty in finding someone to whom th ey can entrust all of their PAC needs. One frequently voiced concern related to the f act that there are situations in which an individual with a SCI may have unanticip ated complications arise that requires immediate assistance. The veterans stated the importance of having confidence that assistance will be there when it is needed. Th is issue, like that of scheduling, appears to relate to managing PCA’s. As part of th e management process, careful screening of potential PCA’s is crucial to ensure that a tr ustworthy individual is hired. According to Lanig and associates (1996) for those indivi duals hiring privately or who have latitude with agency personnel options, careful scre ening of potential PCAs is an important component of the attendant ca re experience. Furthermore, spending more time on the hiring and training process can yield the pa yoff of a good caregiver who will continue working with the individual for an extended period of time (Lanig et al, 1996). Hospital setting According to the veterans, managing PAC becomes difficult during situations in which an individual has to tran sition to a hospital setting due to potential complications. Examples of potential compli cations commonly associated wi th SCI include: respiratory complications, pressure ulcer s, renal disease, long bone fractures, thromboembolic disease, and autonomic dysreflexia (M cKinley, Jackson, Cardenas, & DeVivo, 1999). Participants reported a lack of consistency between the care receive d at home compared with the care received during hospital stays. This can be a frequent and ongoing problem, especially in situations when an individual incurs frequent and/or multiple complications. Further inquiry should focu s on the transition and provision of PAC services from the home environment to the hospital.

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97 Spousal care The final theme related to PAC services di scussed by the veterans, included spousal care and the burden associated with providing such care. There was a consensus among married veterans that although there are benefi ts to having a spouse be a provider of PAC services, there are consequen ces as well. Such conse quences include the physical, emotional and financial strain on the spouse and the family. This issue is often referred to as “burden of care” and has been examined qu ite frequently in the literature (Post, Bloemen, & de Witte, 2005; Chan, 2000; Holicky & Charlifue, 1999; Weitzenkamp, Gerhart, Charlifue, Whiteneck, & Savic, 1997). Burden of care has b een associated with depression, stress, nervousness, sleeplessn ess, anger, and resentment among spousal caregivers of individuals with SCI (Weitzenkamp et al., 199 7). Furthermore, caregiver burden associated with spouses of individuals with SCI, may lead to low levels of satisfaction with their life situation and marital adjustme nt (Chan, 2000). Since a strong correlation exists between level of physical disability and caregiver burden, careful monitoring of spouses and family members providing PAC is warranted (Post et al., 2005). Limitation of this Study Delphi Study A main limitation of the Delphi study rela ted to the high proportion of females to males. Although the proportion was represen tative of Life Care Planners, a higher proportion of males might have brought additional insights to the study. As pointed out earlier in this chapter, subjectivity can im pact the techniques utilized by Life Care Planners when making PAC recommendations. As such, there is the possibility that gender can impact the subjective opinion of Li fe Care Planners. For example, males

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98 might have felt that certain maintenance that were considered not essential when making PAC recommendations, shoul d have been included. Another limitation involves the use of medians and interquartile ranges as a technique for representing c onsensus among the participants Even though utilizing medians and interquartile ranges is commonly used to describe levels of consensus in the Delphi literature, it is possible that the e xperts were unfamiliar with these measures of central tendency. This researcher did provide a detailed example to the participants on how to interpret this information; however, it is still possible that the information might have been confusing. One other limitation to the study of examin ing activities to consider when making PAC recommendations was limiting the expe rts to Life Care Planners. These professionals are primarily making recommenda tions for PAC for litigation or forensic purposes. As such, the opinions of such experts may not be representative of all professionals involved in reco mmending PAC services or in dividuals assessing their own PAC needs. Other professionals that might offer additiona l insight into the recommendations of PAC services include: Professionals working at Independent Living Centers, Social Workers, I ndividuals providing PAC services such as nurses aides/home health aides, or spouse/family members. Qualitative Interviews Similar to the Delphi Study, a limitation of the qualitative interviews appeared to be recruitment of a diverse sample. All of th e participants in this part of the study were males and therefore, the expe riences of females were not represented in study. In addition to females, non-veterans participan ts were not recruited for this study. As discussed previously in this chapter, there wa s a potential biase asso ciated with veterans

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99 responding to questions regardi ng this study. Such biases related to cultural beliefs associated with male veterans. As such, di versity in knowledge could have been obtained by studying the PAC needs of female non-veterans as well. Diversity of knowledge in terms of type of SCI was also a limitation of this study. Although there was a wide range of level of SCI among the participants, only one of the veterans had sustained a complete SCI. Individuals sustaining complete spinal cord injuries are likely to have a higher functi onal impairment. As such, individuals with complete spinal cord injuries may require assistance with additional activities not discussed by the current part icipants of this study. Another limitation associated with diversity of the sample related to the fact that all the participants were over th e age of 50. Many researchers have examined the issue of aging and its relation to SCI (Capoor & Stei n, 2005; McColl, Charlifue, Glass, Lawson & Savic, 2004; Weed, 2004; Scivoletto, Morg ant, Ditunno, Ditunno & Molinari, 2003; McColl & Rosenthall, 1995;). As discussed in chapter 1, aging can lead to increasing health and function problems which transl ate into a greater de mand for PAC (RobinsonWhelen & Rintala, 2003). It is possible th at younger individuals with SCI might have different needs for PAC. For example, acco rding to Scivoletto and colleagues (2003), younger individuals with SCI have more favor able outcomes than older individuals in regards to walking and bladder/bowel indepe ndence. As a result, individuals who are older might require PAC for activities asso ciated with walkin g and bladder/bowel management. As such, younger individuals with SCI might have different, if not less, PAC needs than older participants. Further study is necessary to obtain the PAC needs of

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100 young individuals with SCI to increase the reli ability of utilizing a PAC assessment on a younger population of individuals with SCI. In addition to demographic limitations, as discussed in Chapter 3, qualitative research methodologies inherently assume that predispositions or biases of the evaluator may affect data analysis and interpretations (Patton, 2002). As discussed in Chapter 3, this researcher efforts to overcome bias comm only associated with qualitative research. This included maintaining “ref lexivity” as described by Malte rud (2001), which refers to an attitude of attending systematically to the context of knowledge construction especially to the effect of th e researcher at every step of the research process. Once reflexivity is maintained, personal issues can be valuable sources for relevant and specific research (Maltrud, 2001). The steps taken to maintain ‘reflexivity ’ were discussed in Chapter 3 and are reiterated below: Studied applicable coursework in qualitative methods from professors experienced in conducting qualitative research. Developed an interview guide (appendi x J) used for data collection. Underwent training by a professional qualita tive researcher in the utilization of statistical software for an alyzing qualitative data. Consulted with committee chair in re gards to themes emerging from the data. Continuously recognized personal bias th at can influence this qualitative process. A personal bias statement was discussed in Chapter 3.

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101 Implication for Clinical Practice and Policy Clinical Practice The results of this study should prov ide much useful information to allow rehabilitation professionals to gain a co mprehensive knowledge of attendant care for individuals with SCI. Such knowledge can serve as a tool for professionals working with individuals with SCI. Specifically, the wide range of activities identified in this study should facilitate PAC in clinical practi ce. Areas that might be impacted by these activities include public funding, managing PA C, life care planning, discharge planning, and case management. In terms of applying for public assistance, professionals can assi st individuals in applying for public assistance for PAC by t horoughly exploring a comprehensive list of activities that often requir e personal assistance by indi viduals with SCI. Once professionals have a basis for the activities necessitating PAC, they can more accurately determine the costs associated with providi ng PAC services. As a result, individuals utilizing PAC services will be able to better manage their finances and be better prepared to apply for public assistance. In add ition, individuals privat ely funding their PAC services could use such knowledge to hire and manage PCA’s. Knowledge about the full range of se rvices required in PAC could be an invaluable aid in education and training of individuals requiring PCA management. In fact, such a large amount of activities identified from this study could serve as a checklist for people with disabilities. Further devel opment of such a check list in terms of a computer adaptive self-report could be very advantageous to a consumer not wanting to take a long time to complete a self-assessmen t of his/her PAC needs. With an individual being able to expeditiously determine his/he r own PAC needs, managing of services to

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102 meet those needs may become less of a burde n. The training and managing of PCA’s is often conducted in Independent Living Centers. Independent Living Centers are typically non-residential, private, non-profit, consume r-controlled, community-based organizations providing services and advocacy by and for indivi duals with all types of disabilities. The main goal of the centers is to assist individua ls with disabilities to achieve their maximum potential within the context of their familie s and communities. In addition, Independent Living Centers provide strong advocacy on a wi de range of national, state and local issues. They work to guarantee physical and programmatic access to housing, employment, transportation, communities, recrea tional facilities, and health and social services (ILUSA, 2005). All of the PAC activitie s resulting from this study clearly relate to all of these issues. Additionally, e ducating and training individuals to understand their PAC needs appears to be consistent with the goals of Independent Living Centers in ensuring that individuals with disabilities achieve their maximum potential in their immediate and social environment. Education is not limited to the recipient of PAC services. Prof essionals can utilize the activities from this study to train other clinicians in rega rds to areas to examine when dealing with PAC issues. Such an educati on can allow inexperienced professionals to develop a comprehensive understanding of the PAC needs for individuals with SCI. An example of a growing professi on that involves recommending PAC services includes the field of life care planning. Individual s who go through LCP training programs are exposed to many service requirements for peopl e with catastrophic di sabilities. Often Life Care Planners must collaborate with othe r professionals and uti lize valid research to support their recommendations. Studies such as this one can serve as not only a guide to

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103 understanding the PAC needs for individuals wi th SCI, but also as research to support many types of PAC recommendations. In addition to educational benefits, PAC activities identified in this study could serve as a useful tool for professionals involved in discharge planning. Discharge planning is a process used to determine a cl ient’s needs for a smooth transition from one level of care to another. This process is us ually performed by a so cial worker or other health care professional and in cludes transition from a hospita l to a nursing home or to home care (Centers for Medicaid and Medica re Services, 2004). Professionals involved in discharge planning could ut ilize the results of this study to more thoroughly and adequately explore the home car e needs of individuals leaving an in-patient setting. As such, the professional can ensure that appr opriate PAC services are in place once an individual enters his/her home environment. The responsibility of guarant eeing that appropriate PAC se rvices are in place also falls upon case managers. Case management involves the provision of services as a means for achieving client wellness and autonomy through advocacy, communication, education, identification of service res ources and service fa cilitation. The case management process involves identifying appr opriate providers and facilities throughout the continuum of services, while ensuring that available resources are being used in a timely and cost-effective manner in order to ob tain optimum value for both the client and reimbursement sources. (Case Management So ciety of America, 2005). As evidenced by this definition, case managers need to have a sound basis for identifying appropriate providers for a continuum of services a nd communicating about the needs for such services with clients. In order to better identify specific providers to provide PAC

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104 services, case managers can examine the differe nt types of activities that came out of this study. For example, separate PAC providers may be necessary for assistance with transportation activities and assistance with work related activities. In any case, case managers utilizing a comprehensive instru ment such as the one under study, could facilitate the efficient and successful out comes associated with PAC services. Public Policy As pointed out in Chapter 2, many disabi lity advocates have made efforts to influence legislators to pass a national agenda for PAC. Un fortunately, these efforts have failed due, at least in part, to the concern that such programs will lead to an enormous financial burden on the federal government. The basis for this worry appears to be due to the reports of overwhelming amount of un met needs associated with PAC. As such, there is a belief that the cost for meeting those needs would be enormous. Additionally, there is a concern that if a federally funded government program existed, individuals currently not receiving PAC services would s eek funding if it became available. There are many problems with focusing on the immediat e cost associated with the provision of such services to the exclusion of consumer right to assistance and to long-term cost effectiveness. Legislators seeking to lim it access to a full range of PCA services may not be examining the comprehensiveness of PAC services and how they facilitate the participation of people with disabilities in many types of activities. As discussed in Chapter 2, lawmakers are simply examining PAC in terms of assistance with ADL’s. Limiting government funding leads to problems with access to assistance with basic selfcare activities. Additionally, the results of this study demonstrate that even those receiving assistance for PAC may be receiv ing insufficient assistance with activities relating to home maintenance, education, work, leisure, and social participation. In fact,

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105 ADL’s only relate to 21 of the 194 activities resulting from this study. In other words, based on this study, legislators when maki ng decisions based on funding PAC services are only focusing on 10 percent of the total activities that peop le with SCI require PAC. Hopefully, the results of this study may in form the decisions of policy makers and encourage consideration of the need to fund the full range of services needed by individuals with SCI to partic ipate in everyday activities. In addition to recognizing the impact of limiting people with disa bilities’ ability to participate in everyday activities, the issue of cost has yet to be comprehensively examined. To date, no one has examined the true cost of the provi sion of all types of activities requiring PAC. In f act, as discussed in Chapter 2, a comprehensive instrument used to predict the cost of PAC does not exis t. Currently, the only instrument described in the literature as being used to predict cost of PAC is the FIM. The FIM does not examine the need for personal assistance beyond dependence with ADL’s. Again, as pointed out earlier, ADL’s only make up a small percentage of activities that necessitate PAC services. In order for policy makers to be able to truly u nderstand the financial implications of a comprehensive national age nda for the provision of PAC services, they must examine the cost of PAC services for all types of PAC services in addition to ADL’s. Lawmakers could then compare issues such as lack of funding for PAC services against the cost of funding potential compli cations likely to arise from the under funding of various types of PAC. As evidence d by this study, potential complications should now be examined beyond issues associated with lack of assist ance with self-care activities. Policy makers should examine th e consequences an individual may experience if he/she is unable to work, receive an e ducation, and participate in leisure activities.

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106 Additionally, policy makers might view PAC diffe rently since as is evident by the results of this study, PAC allows people with disabi lities to achieve in areas that our current society values the most such as social stat us, education, employment, and financial gain. Thus, limiting funding for PAC services woul d appear to lead to a limitation of individuals with disabilities to be productive members of society. Such policies are not consistent with landmark disability legislati on such as the Americans with Disabilities Act (ADA). This legislation was implemente d in order to promote individuals with disabilities to be able to be productive members of so ciety by decreasing barriers, supporting civil rights, and prom oting deinstituti onalization. In addition, the benefits of providing adequate PAC appear to outweigh the costs of institutional care. According to ADAPT (2004), currently, billions of dollars are spent on institutional care in the US, which is six ti mes as much money spent on community-based services such as PAC. Furthermore, even if no money were allocated from the federal budget, 25% of the current Medi caid institutional dollars coul d be redirected to fund a national PAC program (ADAPT, 2004) Disability advocates lobbying for a nati onal PAC program would benefit from a comprehensive PAC measurement tool. Having su ch an instrument will enable disability advocates to utilize empirically derived in formation to develop their agenda for a federally funded PAC program. Additionally, advocates for a national agenda for PAC can utilize this instrument to point out lim itations in current state funded programs. These include state Medicaid Programs that provide funding based on the need for assistance with ADL’s. As is evident by this study, individual s with SCI require assistance with many activities in addition to ADL’s. Disab ility advocates could utilize

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107 this study to indicate that individuals w ith SCI are not receivi ng public assistance for 90% of activities rela ting to PAC. Further Research and Development of the Findings of This Study This study resulted in a comprehensive ite m bank of activities to consider when recommending PAC services. Such an item bank will allow researchers, clinicians, and policy makers to have a thorough knowledge of al l activities relating to the need for PAC. As pointed out in Chapter 2, according to the literature, there is a large amount of unmet need for PAC associated with a majority of the activities re sulting from this study. As such, professionals should be ab le to refer to this item bank for use in future research on unmet PAC needs. Further exploration of the activities de veloped from this study is warranted in order to determine whether separate PAC cons tructs exist and items generated are truly representative of the PAC need s of individuals with SCI. Such an investigation will allow for the creation of an instrument to be used to assess the PAC needs of an individual with SCI. As evident by the re sults of this study, pr ofessionals making PAC recommendations are not relying on any obj ective means for predicting such care. Furthermore, these professionals are often u tilizing a variety of subjective methods for making PAC recommendations. As such a valid in strument could be useful to ensure that the PAC needs of individuals with SCI are precisely and accurately assessed. Additionally, such an instrument that has been validated and pr oven to be reliable by appropriate research techni ques could enhance the credib ility of PAC recommendations from professional such as profe ssional Life Care Planners. To accomplish this task, a paper and penc il instrument should be developed and administered to individuals with SCI, whic h will allow professionals to evaluate each

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108 activity in terms of their client’s necessity for PAC. Next, a factor analysis of the results from the administration should be performed to determine if all the activities make up a unidimensional construct or if the instrument is made up of multiple constructs. Rasch methodologies would then be employed to determine the hierarchy of the items within the instrument. Determining the hierarchy of such a large bank of items will provide a basis for the development of a Computer Adaptiv e Assessment. Computer adaptive testing could allow professionals to expeditiously and precisely determine the PAC needs for a specific individual. As discussed in earlie r chapters, every individual with a SCI is different in terms of age, level of injury, a nd lifestyle/cultural issu es. As such, PAC can vary amongst individuals with SCI. The next step in the instrument develo pment process should include a component that allows for determining dur ation of assistance with spec ific activities. One possible technique for determining duration would be to develop an assessment that would allow participants to describe the duration of assistance required to complete an activity. The assessment could then be administered to individuals currently receiving personal assistance and the results could be compared to the duration of pe rsonal attendant care currently received by that indi vidual. Being able to asso ciate duration of PAC with a specific activity will allow professionals to be able to more accurately predict the actual cost for personal assistance services. Unde rstanding the true cost associated with providing PAC services will assist policy makers in their decision making regarding funding such services. Additionally, people wi th disabilities will have an understanding of the financial impact of funding such servic es. Finally rehabilitation professionals such as Life Care Planners could be more accurate in their cost predictions associated with their PAC recommendations fo r people with disabilities.

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109 In addition to the instrument development, results of the qualitative interviews warrant further evaluation. The goal of the qua litative interviews was to generate items to be considered when making recommendati ons for PAC. During the interviews many themes emerged relating to the PAC needs of i ndividuals with SCI. Future research is warranted in order to explore those themes and how they impa ct PAC. Specifically, areas needing further research include the association of PAC serv ices with: mental health, burden of care, environmental barriers, and PCA management. Conclusion This study resulted in 194 activities for professionals to consider when recommending PAC services for individuals with SCI. These activities are the results of opinions of experts experienced in recomme nding PAC and veterans with SCI. While few of these activities are sp ecific to ADL’s, a large proporti on of the items relate to home/yard maintenance, employment, educatio n, and leisure. These non-ADL activities represent activities currently undermet by PAC services for individuals with SCI. Additionally, these activities specifically inte grate into modern models of disablement such as the ICF model. As such, the knowledge obtained by this study could impact public policy, clinicians, and rese archers dealing with the issue of PAC. Further research is needed in order to utilize the item ba nk resulting from this study to develop a comprehensive assessment for PAC. Recommendations for such development are described below. 1. Develop a paper and pencil instrument utilizing the activities resulting from this study. 2. Conduct cognitive interviews with in dividuals with SCI representing a variable sample based on gender, age, a nd level of injury in order to further

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110 validate the PAC activities for this p opulation. This proc ess would involve administering the instrument and si multaneously obtaining feedback from the participants in regards to the a ppropriateness of the activities for PAC 3. Conduct a principal components analysis to determine the unidimensionality of the constructs w ithin the instrument and the hierarchy of the items within each construct. 4. Develop a Computer Adaptive Test to allow professionals to precisely determine the PAC needs associated with individuals with SCI. 5. Examine methodologies for associati ng PCA needs with duration of care. 6. Research the relationship of mental health, burden of care, environmental barriers, and PCA management with PAC. 7. Research the potential complicatio ns along with associated costs of individuals with SCI not receiving public assistance with PAC.

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111 APPENDIX A DELPHI ROUND 1

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121 APPENDIX B INITIAL EMAIL TO LIFE CARE PLANNING EXPERTS Dear _______________: Your name was provided by MediPro Semina rs LLC (formally Intelicus Life Care Planning Certification Program). My name is Jamie Pomeranz and I am a doctoral candidate from the Department of Rehabilitation Science at the University of Florida. I am conducting a study that involves obtaining the opinions of expert Life Care Planners in regards to th e necessary constructs and items to be considered when recommending personal attendant care services. The purpose of this proposed study is to acquire benchmark data that can provide validity checks to Life Care Planners while assessing and addressing personal assistance and replacement services. There are no discomforts or risks to the expert by taking part in this study. Subjects will receive five CEU's towards their Life Care Planning Cer tification (CLCP) for completing the study. This Delphi study will consist of a three rounds of survey questions, which can be completed via the web. At the completion of all three rounds you will receive the five Continuing Education Credits towards your Life Care Planning Certifi cation. If we haven’t received your responses to the data, two weeks from the initial email befo re each round, we will email you once with a friendly reminder to complete the survey. Y ou may withdraw from the study at any time. If you agree to participate, please click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. http://www.hp.ufl.edu/~jpomeran/quasksurv ey/delphi_final_version_round_1.htm Please see the attached letter from Paul M. Deutsch Ph.D., providing his sup port for this study. Please contact Jamie Pomeranz, Ph.D(c), CRC at (352) 273-6566 with an y questions regarding this study.

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123 APPENDIX C DELPHI ROUND 1 FRIENDLY REMINDER EMAIL Dear _______________: Approximately two weeks ago, an email was sent to you in regards to taking part in our research project. This is a friendly reminder you still have the opportunity to advance our knowledge in this important aspect of Life Care Planning by participating in this study. My name is Jamie Pomeranz and I am a doctoral candidate from the Department of Rehabilitation Science at the University of Florida. I am conducting a study that involves obtaining the opinions of expert Life Care Planners in regards to th e necessary constructs and items to be considered when recommending personal attendant care services. The purpose of this proposed study is to acquire benchmark data that can provide validity checks to Life Care Planners while assessing and addressing personal assistance and replacement services. There are no discomforts or risks to the expert by taking part in this study. Subjects will receive five CEU's towards their Life Care Planning Cer tification (CLCP) for completing the study. This Delphi study will consist of a three rounds of survey questions, which can be completed via the web. At the completion of all three rounds you will receive the five Continuing Education Credits towards your Life Care Planning Certifi cation. If we haven’t received your responses to the data, two weeks from the initial email befo re each round, we will email you once with a friendly reminder to complete the survey. Y ou may withdraw from the study at any time. If you agree to participate, please click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. http://www.hp.ufl.edu/~jpomeran/quasksurv ey/delphi_final_version_round_1.htm If you elect not to participate, please reply to this email and put in the subject line “not interested.” Please contact Jamie Pomeranz, Ph.Dc, CRC at (352) 273-6566 with any questions regarding this study.

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124 APPENDIX D ROUND 2 EMAIL TO LIFE CARE PLANNING EXPERTS Dear _______________: Thank you for completing the first round of que stioning for our study entitled "Creating a Personal Attendant Care Measure for Individuals with SCI". We apologize for the delay in the devel opment of the second round survey, which was caused by the recent bombardment of hurricanes that hit Florida. The second round of questioning is now ready for your participati on. This round is considerably quicker and simpler to complete and should take you about 15-20 minutes to finish. This is the second of three rounds of questioning. Part icipants will receive 5 CEU's towards their Life Care Planning Certifica tion (CLCP) for completing al l three rounds of the study. A stated previously, there is no discomfort or risks to the expert by taking part in this study. The purpose of this proposed study is to acquire benchmark data that can provide validity checks to Life Care Planners wh ile assessing and addressing personal assistance and replacement services. To begin the second round of this study, pleas e click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. http://www.phhp.ufl.edu/~jpomeran/quask survey/delphi_r ound_2_version_4.htm Please contact Jamie Pomeranz, Ph.D(c), CRC at (352) 273-6566 with any questions regarding this study.

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125 APPENDIX E DELPHI ROUND 2

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146 APPENDIX F DELPHI ROUND 2 FRIENDLY REMINDER EMAIL Dear _______________: Approximately two weeks ago, an email was se nt to you in regards to the second round of questioning for the Delphi Study involving Li fe Care Planners. This is a friendly reminder you still have the opportunity to comp lete the second round survey and advance our knowledge in this important aspect of Li fe Care Planning by participating in this study. This round is considerably quicker and simpler to complete and should take you about 15-20 minutes to finish. This is the second of three ro unds of questioning. Participants will receive 5 CEU's towards th eir Life Care Planning Certification (CLCP) for completing all three rounds of the study. To begin the second round of this study, pleas e click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. http://www.phhp.ufl.edu/~jpomeran/quask survey/delphi_r ound_2_version_4.htm Please contact Jamie Pomeranz, Ph.D(c), CRC at (352) 273-6566 with any questions regarding this study.

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147 APPENDIX G DELPHI ROUND 3

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168 APPENDIX H DELPHI ROUND 3 EMAIL TO LI FE CARE PLANNING EXPERTS Dear Participant: Thank you for completing the first and s econd rounds of questioning for our study entitled "Creating a Personal Attendant Care Measure for Individuals with SCI". The third and final round of questioning is now ready for yo ur participation. As with Round 2, this round is considerably quick and simple to complete and should take you about 15-20 minutes to finish. This is the third and final r ound of questioning. Participants will receive 5 CE U's for their Life Care Planning Certification (CLCP) for completing all three rounds of the study. The goal of this round is to achieve consensu s regarding whether or not each item listed in the queationnaire should be considered when making recommendations for personal attendant care and replacement services in a Life Care Plan. You will now have the opportunity to review consensus data from a ll the participants' res ponses to each of the items listed in the second round. You will now be instructed to review the consensus data as well as your previous answeres and decide whether or not you would like to keep or change your response to each item. A stated previously, there are no discomforts or risks to the expert by taking part in this study. The purpose of this study is to acquire benchmark data that can provide validity checks to Life Care Planners while asse ssing and addressing pe rsonal assistance and replacement services. To begin the third round of this study, please click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. http://www.phhp.ufl.edu/~jpomeran/quasksurvey/lcp3_ Please contact Jamie Pomeranz, Ph.D(c), CRC at (352) 273-6566 with any questions regarding this study.

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169 APPENDIX I DELPHI ROUND 3 FRIENDLY REMINDER EMAIL Dear Participant: A little over a week ago, an email was sent to you in regards to the third and final round of questioning for the Delphi Study involving Li fe Care Planners. This is a friendly reminder you still have the opportunity to co mplete the third round survey and advance our knowledge in this important aspect of Life Care Planning by continuing to participate in this study. This round is considerably qui ck and simple to complete and should take you about 15-20 minutes to finish. This is the third and final round of questioning. Participants will receive 5 CEU's towards thei r Life Care Planning Certification (CLCP) for completing all three rounds of the study. The goal of this round is to achieve consensu s regarding whether or not each item listed in the questionnaire should be considered when making recommendations for personal attendant care and replacement services in a Life Care Plan. You will now have the opportunity to review consensus data from a ll the participants' responses to each of the items listed in the second round. You will now be instructed to review the consensus data as well as your previous answers and d ecide whether or not you would like to keep or change your response to each item. A stated previously, there are no discomforts or risks to the expert by taking part in this study. The purpose of this study is to acquire benchmark data that can provide validity checks to Life Care Planners while asse ssing and addressing pe rsonal assistance and replacement services. To begin the third round of this study, please click the link below or cut and paste the link into your browser. It is recommended that you use a later version of Internet Explorer or Netscape to view the survey. It may take a minute for the survey to load on slower connection speeds. http://www.phhp.ufl.edu/~jpomeran/quasksurvey Please contact Jamie Pomeranz, Ph.D(c), CRC at (352) 273-6566 with any questions regarding this study.

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170 APPENDIX J INTERVIEW GUIDE This interview is designed so that we can develop a means for determining personal attendant care needs. You have received a consent form to sign, which indicates your consent to this interview. This interview will be recorded. You will hear questions in regards to personal attenda nt care. This type of car e is defined as any personal assistance you need in order for you to comp lete tasks or activities on a daily basis. 1. What is your is your specific level of Spinal Cord Injury? 2. What is your age if less than 89? 3. How old were you when your injury occurred? 4. In regards to personal hygiene, for what activities currently or in the past have you needed a personal care attendant? 5. In regards to hobbies and leisure, for wh at activities currently or in the past have you needed a personal care attendant? 6. In regards to household chores, home ma intenance, and yard work, for what activities currently or in the past have you needed a personal care attendant? 7. In regards to work or education, for wh at activities currently or in the past have you needed a personal care attendant? 8. What person acts as your personal care at tendant (private hire, spouse, nurse, son, daughter, etc.)?

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171 9. How many hours in a typical day do you require a personal care attendant? 10. Are there any activities for which you don’ t receive assistance from a personal care attendant that you feel you do need assistance? 11. How did you obtain your personal care attendant? 12. Tell me about any situations, in which you might require, more personal attendant care? 13. Tell me about any situations that mi ght result in you requiring less personal attendant care? 14. How has your living environment affect ed your need for personal attendant care? 15. Where did you get the funding to su pport a personal care attendant? 16. How has the aging process affected y our need for a personal care attendant? 17. What do you feel should be considered when assessing an individual with a spinal cord injury’s need for personal attendant care. 18. Do you have assistive technology or assi stive devices that have replaced your need for personal attendant care? 19. What additional activities that requir e a personal care atte ndant, do you feel could be replaced by assistive devices? 20. Is there any issue we have not disc ussed that might impact your need for personal attendant care?

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172 Thank you for participating in this interview. The information you have provided will help us determine the specific personal attendant care needs for individuals with spinal cord injuries

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173 APPENDIX K CONSENT FORM FOR VETERAN PARTICPANTS IRB# __266-2004_____ Informed Consent to Pa rticipate in Research You are being asked to take part in a res earch study. This form provides you with information about the study. Th e Principal Investigator (the person in charge of this research) or a representative of the Principal Investigator will also de scribe this study to you and answer all of your questions. Your par ticipation is entirely voluntary. Before you decide whether or not to take part, read the information below and ask questions about anything you do not understand. If you choose not to participate in this study you will not be penalized or lose any benefits that you would otherwise be entitled to. 1. Name of Participant ("Study Subject") _____________________________________________________________________ 2. Title of Research Study Creating Personal Attendant Care Measure fo r Individuals with Spinal Cord Injury 3. Principal Investigator and Telephone Number(s) Jamie Pomeranz, Ph.Dc., CRC. jpomeran@hp.ufl.edu 352-273-6566

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174 4. Source of Funding or Other Material Support This study is funded by the Department of Veterans’ Affairs (VA) Pre-Doctoral Associated Health Rehabilitati on Research Fellowship Program. 5. What is the purpose of this research study? The purpose of this study is to develop an instrument to determine the broad range of personal attendant care (PAC) service s needed by individuals with SCI. By using such assessments, consumers, health care professionals, and policy makers will be better informed about the personal attendant care needs of indi viduals with spinal cord injuries 6. What will be done if you ta ke part in this research study? You will be asked questions about your disab ility and your ability to perform daily life activities. These questions will directly relate the need fo r personal assistance. This session will be audio taped and last for approximately 1 hour. 7. What are the possible discomforts and risks? There is a possibility that you may feel unc omfortable because the questions may be about challenges you face in performing your dail y activities. You may refuse to answer any question you do not want to answer a nd you may withdraw from the study at any time without consequences of any kind. If you wish to discuss the information above or any other discomforts you may experience, you may ask questions now or call the Principal Investigator listed on the front page of this form. Throughout the study, the re searcher will notify you of new information that may become available and might affect your decision to remain in the study. If you wish to discuss the information a bove or any discomforts you may experience, you may ask questions now or call the Principa l Investigator or contact person listed on the front page of this form. 8a. What are the possible benefits to you? You will not directly benefit from participation in this study. 8b. What are the possible benefits to others?

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175 By participating in this st udy, you will be helping to deve lop an assessment to better inform consumers, health care professiona ls, and policy makers about the personal attendant care needs of individua ls with spinal cord injuries 9. If you choose to take pa rt in this research study, will it cost you anything? No Costs for routine medical care procedures that are not being done only for the study will be charged to you or your insurance. These costs may not be charged if you are a veteran and you are being treated at the Nort h Florida/South Georgi a Veterans Health System (NF/SG VHS). 10. Will you receive compensation for ta king part in this research study? Yes. $50.00 11. What if you are injure d because of the study? If you experience an injury that is dire ctly caused by this study, only professional consultative care that you receive at the Univ ersity of Florida Health Science Center will be provided without charge. However, hospital expenses will have to be paid by you or your insurance provider. No other compensation is offered. You will not have to pay hospital expenses if you are being treated at the North Florida/South Georgia Veterans Health System (NF/SG VHS) and experience any physical injury during participation in a Veterans Health System-approved study. 12. What other options or trea tments are available if you do not want to be in this study? There are no other options or treatments availa ble to you. Participation in this study is entirely voluntary. You are free to refuse to be in the st udy, and your refusal will not influence current or future health care you receive at this institution. 13a. Can you withdraw from this research study? You are free to withdraw your consent and to st op participating in this research study at any time. If you do withdraw your consent, there will be no penalty, and you will not lose any benefits you are entitled to. If you decide to withdraw y our consent to participate in this research study for any

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176 reason, you should contact Jami e Pomeranz at (352) 273-6566 If you have any questions regarding your ri ghts as a research su bject, you may phone the Institutional Review Board (IR B) office at (352) 846-1494. 13b. If you withdraw, can information abou t you still be used and/or collected? No 13c. Can the Principal Investigator wit hdraw you from this research study? You may be withdrawn from the study w ithout your consent for the following reasons: If you do not meet the eligibility criteria. 14. How will your privacy and the confidentiality of yo ur research records be protected? Authorized persons from the Un iversity of Florida, the hospital or clinic (if any) involved in this research, and the Institutional Review Board have the legal right to review your research records and will protect the confidentiality of them to the extent permitted by law. Otherwise, your research records will not be released without your consent unless required by law or a court order. If the results of this research are publishe d or presented at scientific meetings, your identity will not be disclosed. 15. How will the researche r(s) benefit from your being in this study? In general, presenting research results helps the career of a scien tist. Therefore, the Principal Investigator may benefit if the results of this study are presented at scientific meetings or in scientific journals.

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177 16. Signatures As a representative of this study, I have ex plained to the participant the purpose, the procedures, the possible benefits, and the risks of this research study; the alternatives to being in the study; and how privacy will be protected: ____________________ ____________________ ____ __ Signature of Person Obtaining Consen t Date You have been informed about this study’s purpose, procedures, possible benefits, and risks; the alternatives to being in the st udy; and how your privacy will be protected. You have received a copy of this Form. Yo u have been given the opportunity to ask questions before you sign, and you have been told that you can ask other questions at any time. You voluntarily agree to participate in this study. By signing th is form, you are not waiving any of your legal rights. ____________________ ____________________ ___ ___ Signature of Person Consenting Date VA regulations require a witness for all of the signatures provided above. ____________________ ____________________ ___ ___ Signature of Witness Date

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178 REFERENCES Americans with Disabilities Act (ADA) (7-26-1990). Title II Public Services 42 USC 12131 American Disabled for Attendant Program s Today (ADAPT) (2004). MiCASSA A vision for attendant services and supports for the new millennium. Retrieved December 5, 2004 from http://www.adapt.org/ Agosta, J. (1998). Proposed Medicaid bill would promote self-determination. The Oregon Clarion. Received December 12, 2004 from http://www.ocdd.org/c9_5_98.htm Allen, K. G. (2001). Long-Term Care Implications of Supreme Court's Olmstead Decision Are Still Unfolding (Rep. No. GAO-01-1167T). United States General Accounting Office. Testimony Before the Special Committee on Aging, U.S. Senate. Allen, S. M. & Mor, V. (1997). The prev alence and consequences of unmet need. Contrasts between older and younge r adults with disability. Med.Care, 35, 11321148. Arthanat, S., Nochajski, S. M., & Stone, J. (2004). The internati onal classification of functioning, disability and h ealth and its application to cognitive disorders. Disabil.Rehabil., 26, 235-245. Berry, C. & Kennedy, P. (2003). A psychomet ric analysis of the Needs Assessment Checklist (NAC). Spinal Cord, 41, 490-501. Blackwell,T.L.Krause J.S.Winkler T.&.Stiens S.A (2001). Spinal Cord Injury Desk Reference New York: Demos Medical Publishing. Britten, N. (1995). Qualitative in terviews in medical research. BMJ, 311, 251-253. Brown, B., Cochran, S., & Dalkey, N. (1969). The Delphi Method II: Structure of Experiments Santa Monica, CA: Rand Corporation, RM-5957-PR. Buchanan, J. L., Andres, P. L., Haley, S. M., Paddock, S. M., & Zaslavsky, A. M. (2003). An assessment tool translation study. Health Care Financ.Rev., 24, 45-60. Busta J. (1992). The right skil ls to manage your own care. Accent on Living, Spring, 98102.

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187 BIOGRAPHICAL SKETCH Jamie L. Pomeranz, MHS, CRC is a doctoral candidate in the rehabilitation science doctoral program at the University of Flor ida College of Public Health and Health Professions (Gainesville, FL). Mr. Pomeranz received master ’s degrees in rehabilitation counseling and exercise and s ports science from the University of Florida in 1998 and 2000 respectively. Mr. Pomeranz also received a Bachelor of Scien ce degree in nutrition and fitness from Florida State University in 1995. Accomp lishments during Mr. Pomeranz’s doctoral student career include being a recipient of a 2003-2004 Department of Veterans Affairs (VA) Pr e-Doctoral Associated Hea lth Rehabilitation Research Fellowship, which allowed him to conduct his dissertation studies at the Rehabilitation Outcome Research Center (RORC) at the No rth Florida/South Geor gia Veterans Affairs Medical Center (Gainesville, FL); reci pient of the 2004 John Muthard Award for excellence in research from the University of Florida College of Public Health and Health Professions, Department of Rehabilitation Counseling; and recipient of grant funding from the Foundation for Life Care Planning Re search to fund his doc toral dissertation. Mr. Pomeranz has been working with indivi duals with disabilitie s for over 10 years in areas of physical rehabilitati on, case management and rese arch. While completing the requirements for his doctoral degree, Mr. Pomera nz worked as a research assistant for Dr. Craig Velozo in the Department of Occupationa l Therapy at the University of Florida. Additionally, throughout his doctoral training, Mr Pomeranz was selected to present at various conferences including the 20 04 ACRM-ASNR Joint Conference.


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IDENTIFICATION OF ACTIVITIES CRITICAL TO EXAMINE THE NEED FOR
PERSONAL ATTENDANT CARE FOR INDIVIDUALS WITH SPINAL CORD
INJURY















By

JAMIE L. POMERANZ


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


2005


































Copyright 2005

by

Jamie L. Pomeranz















ACKNOWLEDGMENTS

I would like to thank the Veterans Health Administration's Rehabilitation

Outcomes Research Center for funding this study. In particular, I thank Dr. Maude

Rittman not only for assisting me in obtaining this funding, but also for facilitating the

development of my research career. Additionally, I thank Dr. Pam Duncan for providing

me with the much-needed guidance and leadership throughout my program. Of course I

cannot even put into words the eternal gratitude I have for my committee: I thank Dr.

Linda Shaw for always keeping her door open and taking the time to answer all my

questions no matter how busy she was. She has been an amazing mentor, colleague, and

friend. I am beyond grateful to Dr. Craig Velozo for teaching me what it takes to be a

successful rehabilitation scientist and leading me down that modem measurement path.

He is a true model of what it takes to be an outstanding individual, researcher and

educator. I thank Dr. Horace Sawyer for his endless support and guidance as I pursued

research and training in Life Care Planning. I thank Dr. Anne Seraphine for all of her

support and for being the best statistics professor I have ever had. I also thank the

Foundation for Life Care Planning Research for funding support and Dr. Paul Deutsch for

endorsing my research and allowing me to learn all aspects of Life Care Planning from

the best in the business. I thank all the Life Care Planning experts who took time out of

their busy schedules to provide me with benchmark data related to Personal Attendant

Care. I thank Carrie Lindblad and Dr. Andrea Behrman for assisting me in recruiting

veterans to participate in this study. I thank all the veterans for their willingness to share









their personal stories for the purpose of this study. I would like to thank my parents,

Ilene and Peter, for instilling in me the importance of education and for providing me

with unconditional love and support throughout my life. Thanks go to my brother Eric

who never lets his developmental disability get in the way of being the happiest and most

independent individual I know. Thanks go to my other brother, Adam, for always being

that someone whom I could look up to and who taught me to always look ahead and

never look down. I would like to thank my twin sister Julie whose endless support has

and will continue to contribute to all my achievements. And of course I thank my wife,

Anni. She is my world and I will never be able to truly express my gratitude for always

sticking by me no matter how stressful things got. She is the true reason I am getting my

Ph.D. I also have to say thank you to my daughter Sydney who's smiling face was my

inspiration to finish my Ph.D. Finally, I thank my newborn daughter, Andie for coming

into this world just in time to give me that final push to meet my Ph.D. deadlines.















TABLE OF CONTENTS

page

A C K N O W L E D G M E N T S ................................................................................................. iii

A B ST R A C T ............... .................................................................................. ..... x

CHAPTER

1 IN TR OD U CTION ............................................... .. ......................... ..

B background .................. ...................... ...................... .. ........ ...............
Experts in Recom m ending PAC Services .......................... ...... ....................... ... 5
Necessity for a Standardized Instrument for Determining the Need for PAC .............6
Method for Understanding Comprehensive PAC Needs .......................... .........10
G o al of th e R research ............. ...... .. .. .. ...... .... .... ........................ .................... 12
R research Q question 1 ........................ .. .................................. .. ........... ..12
Research Question 2 ................................ .. ........... ..... ................ ....12

2 LITERATURE REVIEW ........................... ............................................... 13

Current State of Personal Assistance.............................. ........................13
Legislation and Policy Affecting Provision PAC Services .....................................14
ADL Assessm ents ............... ........ ........ ........ ............ .............. 21
Functional Independence M measure (FIM ) ...................................... ............... 22
Lim stations of the FIM .................. .............................. ...... .. .......... .... 26
U n m et N e e d .................................................................................................3 0
C onsum er D directed PA C ................................................. ............................... 33
C ash and C oun selling ......................................................... .. ...... .. ...... ............34
Consum er M anagem ent of PA C ......................................................... ................. .... 36
Personal Assistance and a Model of Disablement......................................................38
R ole of the L ife C are P lanner ............................................................. ..................42
LCP Knowledge and Competencies-Framework of the ICF Model..........................43
Summary and Rationale for a Comprehensive PAC Instrument.............................45

3 M E T H O D O L O G Y ............................................................................ ................... 49

Research Question 1 ..................................................... ............ 49
Subjects ............. ... ....................... ......................... ................. 49
Sam pling P rocedure............. ........................................................ .... .... ....... 50
D elphi Procedure .................................................... ... .. ............ 51
D elp h i rou n d 1 ..........................................................52


v









D elphi rou n d 2 ..........................................................53
D elphi round 3 .................................................................. .. ....... 55
R research Q question 2 ..................... ............................55
Rationale for Interviewing Veterans with SCI............................................ 55
Subjects ............... ......... ......................56
Procedure ...... ............... ................ ............... 56
D ata A n a ly sis ................................................................................................. 5 7
C o d in g ........................................................................................................... 5 8
R e se arch er B ia s ............................................................................................. 5 9
Personal B ias Statem ent .............................................. ............... 60

4 R E S U L T S .............................................................................6 1

Intro du action .................................................................................................... 6 1
Delphi Study ...................................................................61
Alpha Testing Round 1............................................... ............... 61
Panel D em graphics .............................................................................66
D elphi R found 1............................... ... ................. 68
Questions Not Included In Subsequent Rounds ..................................... 73
D elphi R ou n d 2 .............................................................7 5
Delphi Round 3........................... ............... 76
Interview s w ith V veterans w ith SCI.................................................... 78
Participant Demographics ................. .................................78
Specific Activities Coded ................................. ........................... .... 79
Em erging PAC Them es .............................................................. .............80
Effect of mental state .............................................. 80
Independence ...... .................. .......... ........82
PAC services in place............................ ...............83
Scheduling .............................. ........ .... ........84
PAC during hospital stays ..... ...................... ......... 85
T rustw orthiness ................................................ ............... 85
S p o u sa l c a re ............................................................................................ 8 6

5 D ISC U S SIO N ............................................................................... 88

Introduction .......................................................................................................88
Overview of Significant Findings............................................... 88
D elp h i Stu dy .................................................................................................. 8 8
R results and the IC F m odel ....................................................... 89
Item s to be excluded..............................................................91
Q u alitativ e Interv iew s ................................................................................... 92
M e n tal h e a lth .......................................................................................... 9 3
Independence ................................................................................. 94
PAC services in place prior to discharge ...................................... 94
Scheduling ................................................................. ..... ............ 95
T rustw orthiness ................................................ ............... 95
H hospital setting .................................................. 96









S p o u sa l c a re ............................................................................................ 9 7
L im station of this Stu dy .................................................................. ....... ............... 97
D e lp h i S tu d y ................................................................. ...............................9 7
Qualitative Interviews ..................... .................... ........ 98
Im plication for Clinical Practice and Policy ..........................................................101
C lin ic al P ra ctic e ........................................................................................... 10 1
Public Policy ................ ............................ ......... ...............104
Further Research and Development of the Findings of This Study.......................107
Conclusion ........................ ....................... .... 109

APPENDIX

A D E L P H I R O U N D 1 ................................................................. ........................... 11

B INITIAL EMAIL TO LIFE CARE PLANNING EXPERTS ...................................121

C DELPHI ROUND 1 FRIENDLY REMINDER EMAIL ............... .....................123

D ROUND 2 EMAIL TO LIFE CARE PLANNING EXPERTS ..............................124

E D E L P H I R O U N D 2 ....................................................................... ..................... 12 5

F DELPHI ROUND 2 FRIENDLY REMINDER EMAIL...................................146

G D E L P H I R O U N D 3 ....................................................................... ..................... 147

H DELPHI ROUND 3 EMAIL TO LIFE CARE PLANNING EXPERTS................68

I DELPHI ROUND 3 FRIENDLY REMINDER EMAIL ............... .....................169

J IN T E R V IE W G U ID E .................................................................... ..................... 170

K CONSENT FORM FOR VETERAN PARTICIPANTS .............. .............. 173

R E F E R E N C E S ........................................ ....................................................... .... 17 8

BIOGRAPHICAL SKETCH ............................................................. ............... 187
















LIST OF TABLES
Table p
1 PAC Component of a LCP ............................ ................ ............... 44

2 Comments and Actions from Alpha Testing of Round 1.............. ............... ...65

3 P anel D em ographics........ ................................................................ .... .... ..... 67

4 P anel C redentials.......... ............................................................... ...... .... ..... 67

5 D elphi Study Results ............. ...................... ......... ............ ............ .. 68

6 Questions Not Included In Subsequent Rounds........................ ...............74

7 Item s w ith a M edian below 3. ......................... ..................................................77

8 Participant D em graphics ............................................... ............................. 78

9 PAC Activities Reported From Veterans..... ............................................. ... ...........79















LIST OF FIGURES
Figure pge
1 Postulated PAC Measure Comparison With The FIM ....................................11

2 Comparison of Functional Status Tools .......... ..... .... ......................... ............. 28

3 IC F M odel ........................................................................... 4 0














Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

IDENTIFICATION OF ACTIVITIES CRITICAL TO EXAMINE THE NEED FOR
PERSONAL ATTENDANT CARE FOR INDIVIDUALS WITH SPINAL CORD
INJURY

By

Jamie Pomeranz

May 2005

Chair: Linda Shaw
Major Department: Rehabilitation Science

The purpose of this study was to determine the necessary items and constructs to be

included in a measure of personal attendant care (PAC) for individuals with spinal cord

injuries (SCI). Currently, there are between 219,000 and 279,000 individuals with SCI in

the United States. Approximately half of those individuals require some type of personal

assistance with daily care. Attendant care can include personal assistance, domestic

services, community services, home nursing, home maintenance, childcare services,

educational support and respite care. The Functional Independence Measure (FIM) has

most often been selected as the instrument of choice to predict the total PAC needs of

individuals with SCI. While the FIM has been shown to be effective in predicting

activities of daily living (ADL) of individuals with neurological conditions, rehabilitation

professionals tend to use this assessment to predict the entire range of attendant care for

individuals with SCI. This research was intended to identify a full range of activities

that should be included in a comprehensive assessment of PAC needs. Using the Delphi









method, 25 life care planners, experienced in determining PAC services identified

specific activities to be considered when assessing the need for PAC. Additionally,

qualitative interviews were conducted with veterans with SCI to understand their

perspective regarding the activities that should be considered when making PAC

recommendations. The study resulted in 191 activities to be considered by professionals

when recommending PAC services. These results covered a wide range of activities

relating to ADL's, home/yard maintenance, employment, education, and hobbies/leisure.

Implications for future development of comprehensive measures of PAC needs were

discussed as well as the impact of this research on public policy and clinical practice.














CHAPTER 1
INTRODUCTION

Background

Currently, there are between 219,000 and 279,000 individuals with spinal cord

injury (SCI) in the United States (National Spinal Cord Injury Statistical Center, 2003).

Approximately half of those individuals require some type of personal assistance with

daily care (Blackwell, 2001). Personal attendant care (PAC) services can be one of the

most common and costly aspects of daily living for individuals with SCI (Weitzenkamp,

Whiteneck, & Lammertse, 2002).

Attendant care is the assistance received by people with physical
disabilities for undertaking the full range of everyday tasks that able-
bodied people normally do for themselves. It enables an individual to live
independently and to exercise basic rights about lifestyle choice.
(Physical Disability Council of NSW, 2004)

PAC services, also referred to as personal assistance, are defined by the World

Institute of Disability as assistance, under maximum feasible user control, with tasks

aimed at maintaining well-being, personal appearance, comfort, safety, and interactions

within the community and society (Kennedy, 1997). PAC services are provided for

domestic activities, community activities, home nursing, home maintenance,

housecleaning, gardening, childcare activities, educational and vocational support and

respite care (Motor Accident Authority, 2002).

For many individuals with SCI, absence of assistance with such day-to day

activities can lead to health care problems that are every bit as serious as health problems

that result from inadequate medical services. More specifically, lack of PAC services can









affect the musculoskeletal, circulatory, respiratory, and skin systems. Such problems

can be extremely difficult and costly to resolve and can result in greater levels of

disability and even greater need for health and support services (Dautel & Frieden, 1999).

Furthermore, individuals with SCI experience a wide array of physiological and health-

related changes associated with the aging process. Increasing health and function

problems related to aging translate into a greater demand for PAC (Robinson-Whelen &

Rintala, 2003).

Individuals who provide personal assistance to individuals with SCI are often

referred to as personal care attendants (PCAs). Such individuals provide assistance with

activities of daily living (eating, grooming toileting, etc.), transfers, safety precautions,

household cleaning and maintenance, driving to and from appointments, running errands,

minor home repair and yard maintenance, leisure activities and employment assistance.

PCA's may be skilled or unskilled workers, who might be unlicensed, licensed,

registered nurses, nursing assistants, nurse's aides, home health aides, or an individual

with no formal training. The level of care provided is often a reflection of an individual's

needs and/or available resources. For example, an individual with ventilator dependent

tetraplegia will require 24-hour awake care, which requires assistance from a Licensed

Professional Nurse (LPN) or a Registered Nurse (RN). Conversely, an individual who has

lower-level paraplegia may be self-sufficient and require less skilled assistance in

housekeeping activities such as cooking and cleaning (Weed, 2004).

Depending on the skill level of the attendant care provider, a significant cost can be

associated with attendant care services. Specifically, attendant care costs can comprise

up to 44% of the total recurring rehabilitation costs for individuals with SCI (Harvey,









Wilson, Greene, Berkowitz, & Stripling, 1992). In fact, Hall et al. (1999) found that

individuals with high tetraplegia used more than 135 hours of paid assistance weekly.

This amount of assistance, if provided by someone receiving minimum wage would

amount to over $40,000 per year. This minimum salary would most likely be associated

with PCA's employed by a Home Health Agency.

The majority of persons with disabilities in the United States currently receive paid

personal assistance through home care agencies that contract with Medicaid offices

(Doty, Kasper, & Litvak, 1996). Agency-selected care includes PCA's who are provided

by home health type agencies or community agencies (Mitchell & Kemp, 1999).

Funding for PAC services is sometimes made available through the extension of

Medicaid Home and Community-Based Services (HCBS)(Kitchner, Ng, & Harrington,

2003). Such HCBS programs were developed as a direct result of the Supreme Court's

ruling in Olmstead vs. L.C. and E.W. (Kitchner, Willmott, & Harrington, 2004). The

Olmstead ruling resulted in an executive order mandating formal plans for ensuring

community-based alternatives to institutions for all people with disabilities. The decision

demands that whenever medically feasible and preferred by the recipient, appropriate

care must be delivered to the individual in a non-institutional setting (Hagglund, Clark,

Mokelke, & Stout, 2004).

Although the Olmstead Act facilitated the development of HCBS on a national

level, each state has much latitude in determining the type of services offered, who can

provide such services, and the conditions under which services are provided (Dautel &

Frieden, 1999). Specifically, states have the option of using combinations of two

Medicaid funded programs, the HCBS waiver and the Medicaid Personal Care Services









(PCS) program, to provide personal assistance either directly, or through a variety of

contractual arrangements (LeBlanc, Tonner, & Harrington, 2001).

According to LeBlanc and associates (2001), there are a number of other

government programs that support personal care services in the United States. These

programs include Social Security, Older Americans Act funds, state general funds,

Department of Veterans Affairs, and Ticket to Work Programs. Despite the existence of

these programs, Medicaid home health remains the most significant government program

offering personal assistance in the United States (LeBlanc et al., 2001).

In addition to government programs where the PCA is typically arranged and

funded by a governmental agency, individuals with SCI also obtain PCA's either through

consumer-selected care or through family members provided care (Mitchell & Kemp,

1999). Consumer-selected care consists of PCA's who are interviewed, hired, trained,

and supervised by individuals with SCI. Family PCA's are typically family, friends, or

neighbors who are not interviewed prior to being hired. According to LaPlante and

associates (2004), over 85% of all hours of personal assistance with ADL's and IADL's

are provided by family and friends. While government programs may pay for the

services of these PCA's, they are also funded privately or, especially in the case of family

members, they may not receive any compensation for their resources. In any case, all

three avenues for personal assistance increase the chances that an individual with a

disability will be able to live in the community.

The reintegration of individuals from institutions to home settings follows the

philosophy of the independent living model of personal assistance. This philosophy of

health care was developed by and for working-age adults with disabilities as an









alternative to the medical model of health care. The model endorses the full involvement

of the individual with the disability in the selection, management, and training of a

personal care attendant, with the final responsibility of care belonging to the person with

the disability. The philosophy involves the belief that reliance on services of a

professional health care provider in an institution may unintentionally reduce an

individual with disabilities to the status of patients whose inputs are secondary to those of

professionals (Mitchell & Kemp, 1999). Even though individuals with disabilities can

have the responsibility to select, manage, and train their own personal care attendants,

they must still often rely on professionals to accurately assess their need for personal

assistance. Precise assessments of the need for personal assistance are essential for

effective planning of disability support services (Kennedy, 2001).

Experts in Recommending PAC Services

One group of professionals who are often involved in the planning of disability

support services, and thus make decisions in regards to PAC services, are Certified life

care planners. The process of life care planning (LCP) involves the assessment of the

total disability-related needs of an individual projected across the lifespan. Life care

planning is defined as a dynamic document based upon published standards of practice,

comprehensive assessments, data analysis, and research. The LCP provides an organized

concise map for current and future needs with associated costs for individuals who have

experienced catastrophic injury or have chronic health care needs (NARPPS, 1998).

Topics that are covered under an LCP often include projected evaluations, projected

therapeutic modalities, diagnostic testing/education assessment, wheelchair needs,

wheelchair accessories and maintenance, aids for independent function, orthotics and

prosthetics, home furnishings and accessories, drug and supply needs,









home/personal/facility attendant care, future medical care-routine, transportation, health

and strength maintenance, architectural renovations, potential complications, future

medical care/surgical intervention, orthopedic equipment needs, and

vocational/educational needs (MediPro Seminars, 2004).

LCP's are frequently used in personal injury and other types of litigation and must

be defensible in courts of law. As such, to prevent overestimation and underestimation of

PAC needs, life care planners must rely on objective and accurate measures of

rehabilitation needs and outcomes associated with therapeutic interventions.

Overestimating attendant care needs will result in inaccurate, unjustifiable, and more

expensive rehabilitation plans that are unfair to all parties involved (Weed, 2004).

Underestimating attendant care needs can result in individuals receiving inadequate

services to maintain themselves throughout their lifetimes and likely lead to a higher rate

of complications and hospitalization, even possibly reducing life expectancy (Weed,

2004).

Necessity for a Standardized Instrument for Determining the Need for PAC

The need for a standardized instrument is critical for measuring the relationship

between functional status and personal assistance (Samsa, Hoenig, & Branch, 2001).

Many agencies, rehabilitation centers, and centers for independent living currently use

functional status measures that assess activities with daily living (ADL) to establish

recommendations for all aspects of PAC. Such assessments include the Functional

Independence Measure (FIM) (Granger & Hamilton, 1986), the Minimum Data Set

(MDS) (Health Care Financing Administration, 1998), and the Barthel Index (Mahoney

& Barthel, 1965). Although these functional status measures are valuable tools used by

rehabilitation professionals, they were not created for measuring all components of PAC









specifically for individuals with SCI. Furthermore an extensive review of the literature

demonstrates that a scientific instrument specifically designed for determining the need

for all areas of PAC by individuals with SCI does not exist.

In addition to the above functional status measures, PAC recommendations for

individuals with SCI are often based on clinical practice guidelines. Specifically, life

care planners often make PAC recommendations based on guidelines published by the

Paralyzed Veterans of America (Mediproseminars, 2004). These guidelines, sponsored

by the Consortium for Spinal Cord Medicine, list hours of personal care and homemaking

assistance that may be appropriate to each level of injury. These guidelines were based

on the consensus of clinical experts, data from the FIM, available literature on functional

outcomes, and data compiled from Uniform Data Systems (UDS) and the National Spinal

Cord Injury Statistical Center (NSCISC) (Consortium for Spinal Cord Medicine, 1999).

The hours recommended were determined representative of skilled, unskilled, paid and

unpaid assistance required for individuals who were one-year post-SCI.

These guidelines have been used by life care planners and are cited quite frequently

in the life care planning literature. However, there are many limitations to the guidelines.

First of all, the guidelines do not take into consideration the effects of aging on

individuals with spinal cord injuries (Deutsch, 2003). Weed (2004) discusses evidence

that individuals with spinal cord injuries tend to experience some of the changes

commonly associated with aging earlier. Weed goes on to state that an individual, who

has had a spinal cord injury for 20-25 years and has been using a manual wheelchair, will

have more difficulty with upper extremity pain. Additionally, the individual may have

more difficulty with transfers and self care needs and require a higher level of attendant









care. The guidelines also fail to break down the attendant care hours by the specific types

of activities with which individuals with SCI require assistance. Furthermore, the above

guidelines are based on a person with motor-complete SCI and do not reflect needs

associated with incomplete injuries, changes in assistance that may be required over time,

nor do they take into account other medical conditions, complications, age, obesity,

cognitive abilities, psychosocial, and environmental factors (Blackwell, 2001). Although

the above model serves as a general guide for attendant care and level of spinal cord

injury, it fails in providing the specific and precise determinates for each component of

PAC.

The limitations in the guidelines can be better understood by examining the FIM.

The FIM, which was a primary functional status measure used in developing the above

clinical guidelines, is the most widely used disability measure in rehabilitation medicine

(Consortium for Spinal Cord Medicine, 1999). The FIM instrument describes the type

and amount of human assistance required by a person when performing basic life

activities. The items on the FIM describe two domains: motor and cognitive (Stineman

et al., 2001). The motor domain includes 13 items, which are described as physical

abilities. These items include: eating, grooming, bathing, upper body dressing, lower

body dressing, toileting, bladder management, bowel management, transfers, locomotion,

and stair climbing (Linacre, Heinemann, Wright, Granger, & Hamilton, 1994). The

cognitive domain includes five items consisting of comprehension, expression, social

interaction, problem solving and memory. The motor items are mainly self-care items or

ADL's.









Jette and colleagues (2003) examined the item hierarchy of four functional status

measures including the FIM, used in post acute care. Such a hierarchy allows the

researcher to examine items listed in a distinct order of difficulty for a particular

population (Velozo & Peterson, 2001). Jette and colleagues (2003) compared the

hierarchical structure of the functional measures and determined that there were inherent

measurement limitations to the instruments for use in post-acute care. The limitations

included lack of range of content, breadth of coverage, and measurement precision.

This researcher compared the hierarchical structure of the FIM to a postulated

hierarchical arrangement of items within postulated constructs often considered by life

care planners in making PAC recommendations (Figure 1). These postulated constructs

were created based on discussions with professional Life care planners, individuals with

disabilities, as well as the current PAC and LCP literature. The hierarchical structure as

seen in Figure 1 is based on difficulty level. For example as demonstrated on the FIM,

eating requires less overall functional ability than bathing. Furthermore, bathing requires

less overall functional ability than stair climbing. Additionally, if an individual can

climb stairs independently, than there is a high probability that he/she can most likely be

independent in performing items such as grooming, bladder management, and bowel

management.

Figure 1 demonstrates that although the FIM is a valuable tool in assessing self-

care need, it was not created for measuring other components of PAC such as

homemaking, home/yard maintenance, and vocation/educational/leisure activities. These

activities are considered instrumental activities of daily living (IADL's) and also include

the use of a telephone, transportation, food or clothes shopping, meal preparation,









housework, medication use, and management of money (Kennedy, 2001). According to

Kennedy (2001), an estimated 3.2 million adults in the United States have one or more

unmet or undermet needs for personal assistance, with most reporting deficits in

assistance with IADL's.

By listing the items under each construct in hierarchical order, one can see that the

postulated constructs are likely to measure functional ability beyond what is measured by

the FIM. For example, an individual who is independent in higher level ADL item listed

on the FIM such as Dress LE (lower extremity dressing) may be identified as only

needing PAC services for locomotion and stair climbing, though he/she may be unable to

take out the garbage, mop the floor, or mow the lawn independently. In addition,

according to the FIM, the lowest ability level associated with PAC is eating, when it is

possible that an individual may need PAC with activities associated with lower functional

ability such as using the, reading and waking up in the morning. The FIM, by design is

most precise and relevant for post acute inpatients whose function is at the lower end of

the continuum (Jette et al., 2003). The above examples suggest that a more

comprehensive understanding of an individual's abilities is needed to more accurately

determine the PAC needs of individuals with SCI.

Method for Understanding Comprehensive PAC Needs

One empirical method to develop a comprehensive understanding of PAC beyond

what is measured by the FIM involves the implementation of the Delphi Method. The

Delphi Method is frequently used to determine consensus among experts on a given issue

and consists of a series of repeated questionnaires in a group of individuals whose

opinions are of interest (Herdman et al., 2002). For this study, life care planners

represented individuals whose opinions were of interest based on the requirements of












Housekeeping


Home/Yard Maintenance Vocational/School/Leisure


More
Ability







F
U
N
C
T -
I
0-
N
A
L


A -
B
I
L
I
T
Y






Less-
Abilit


Driving to/from appointments

Grocery Shopping
Taking out the garbage


Washing car
Cleaning windows


Mopping the floor
Cleaning dishes
Vacuuming
Doing laundry
Cooking
_Taking clothes out of closet
Cleaning windows
Getting the mail

_ Getting the newspaper
Sweeping floor
Making the bed
Getting food from refrigerator
_ Taking medication
Dusting
Using a computer
Managing money
_ Using the telephone



- Turning on television
Waking up in the morning


- Trimming trees
Moving furniture
Trimming hedges
Edging
Fixing leaks
- Changing A/C filters
Mowing the lawn
Assembling large items
Hanging fixtures
- Changing light bulbs
Planting
Simple plumbing tasks
Spreading fertilizer
- Picking up leaves
Watering Grass

Assembling small


S items


Hanging pictures



Using a screwdriver

Hammering Nails
Sweeping Patio


Going on vacation


Playing sports
Swimming
Work transportation




-Shopping at the mall
Eating at a restaurant
Using computer
technology


Presentations
Taking notes
Taking tests
Going to the park
_ Writing

Using a calculator
Typing
_ Going to the movies

Going out with friends
Carrying books/supplies






Playing board games


Reading
Watching television
Listening to music


FIM scale estimates cited from Jette, Haley, and Pengsheng, 2003


Figure 1. Postulated PAC Measure Comparison With The FIM


FIM


Stair Climbing _


Locomotion

Dress LE
Toilet Transfer
Toileting
_Bathing
Bowel Mgmt
Bladder Mgmt
Bed-Chair Trfs
Dress UE
Grooming

Eating









their profession to often formulate PAC recommendations. Additionally, the Delphi

method provides a means for extrapolating the opinions of such experts without the need

to organize the professionals into one specific environment. In other words, the opinions

could be obtained from experts dispersed throughout the country. This method appeared

to be the most appropriate for meeting the goals of this researcher.

Goal of the Research

The primary goal of the present dissertation was to conduct qualitative research,

which will lead to the development of a measure for predicting the need for PAC

services.

Research Question 1

What are the critical items necessary to examine the need for PAC services for

individuals with SCI from the perspective of LCP professionals?

Research Question 2

What are the critical items necessary to examine the need for PAC services from

the perspective of veterans with SCI?














CHAPTER 2
LITERATURE REVIEW

Current State of Personal Assistance

In 1997, out of an estimated 33 million people with severe disabilities, 10 to 20

million required personal assistance (Hagglund, Clark, Mokelke, & Stout, 2004b; Allen

& Mor, 1997). PAC services provided to adults with disabilities amounts to 21.5 billion

hours of help per year with an economic value at around $200 billion as of 1996

(LaPlante, Harrington, & Kang, 2002).

The need for PAC services for people with disabilities appears to be on the rise. In

fact, home health care, which includes PAC services (75% of all home care needs), has

been increasing at an annual rate of 20% to 25% since the 1980's (Mitchell & Kemp,

1999). One reason for this rapid increase is due to the recent advances in medicine and

technology (Robinson-Whelen & Rintala, 2003). Such innovations are contributing to

longer life expectances for individuals with SCI. In fact, in the 1940's individuals with

traumatic high tetraplegia rarely survived. Now, due to the establishment of trauma

centers and model systems of care, if an individual with high tetraplegia survives the first

year, even when ventilator-assisted, that individual has a 60% chance to survive an

additional 15 years or more (Hall et al., 1999). According to Robinson-Whelen and

colleagues (2003), increases in life expectancies lead to increasing care resulting in high

demand for personal assistance.

Unfortunately, as the demand for personal assistance increases, the likelihood of

those needs being unmet is increasing as a result of lack of public funding. This is due, at









least in part, to the fact that states are currently suffering from loss of tax revenue and as

a result, state legislatures are targeting Medicaid programs in an attempt to make up

ongoing budget shortfalls (Hagglund et al., 2004). Such cuts in public assistance

contradict modern legislation effecting PAC.

Legislation and Policy Affecting Provision PAC Services

Legislative decisions have played a major role in the provision of PAC services to

individuals with disabilities. One landmark case that facilitated the increase in such

services was known as The Olmstead Decision. Olmstead v. L.C. and E.W. reached the

Supreme Court when the Georgia Department of Human Resources appealed a decision

by the 11th Circuit that it had violated the Americans with Disabilities Act (ADA)'s

"integration mandate." This infringement occurred when two females with mental

disabilities at a state psychiatric facility were segregated long after professionals had

recommended their transfer to community care (The Center for An Accessible Society,

1999).

The Supreme Court decided that states would be violating Title II of the Americans

with Disabilities Act (ADA) of 1990 if they provide care to people with disabilities in an

institutional setting when they could be appropriately served in a home or community-

based setting. Specifically, Title II applies to public services furnished by governmental

agencies and provides in part that

No qualified individual with a disability shall, by reason of such disability,
be excluded from participation in or be denied the benefits of the services,
programs, or activities of a public entity, or be subjected to discrimination
by any such entity. (Allen, 2001; ADA, 1990)

The ADA defines a public entity as including a state or local government, a

department, agency, special purpose district, or other instrumentality of a state, states, or









local government (ADA, 1990). In the Olmstead decision, the argument was made that

public entities are required to provide services in the "most integrated setting appropriate

to the needs of qualified individuals with disabilities" (Allen, 2001). In many situations

the most integrated setting includes an individual's home environment or community

based setting.

In the Olmstead case, physicians at the state hospital had determined that services in a

community-based setting were appropriate for the plaintiffs, and even though appropriate

settings for services are determined on a case-by-case basis, states must continue to

provide a range of services for people with different types of disabilities (Allen, 2001).

With the passage of Olmstead and with the ADA continuing to play a key role in

the lives of individuals with disabilities, the establishment of a national system for the

provision of PAC services remains a high priority for many disability groups (Kennedy,

1997). Current agenda relating to the modern development of personal assistance

programs in the US can be linked to the passage of Titles XIX and XX of the Social

Security Act (Litvak, 1991; Kennedy, 1997). This legislation facilitated the creation of

Medicaid Home and Community Based Service (HCBS) Waivers and the Medicaid

Personal Care Services (PCS) program. The HCBS waiver program received

congressional authorization in 1981 and offers federal matched funding to the states to

expand HCBS and accelerate movement away from long-term-care (LTC) services

provided from institutions. The program allows the Department of Health and Human

Services to "waive" certain Medicaid statutory requirements so that states can receive

federal funds to expand HCBS and reduce existing institutional care. States can

implement this program by targeting HCBS towards specific geographical areas,









populations, and conditions. Also, the states can provide services not otherwise covered

by the Medicaid program such as respite care, homemaker services, personal care, and

adult day care.

In addition to the HCBS program, funding for attendant care can come from the

Medicaid Personal Care Services (PCS) Program. This optional benefit allows states to

have considerable discretion in defining PCS but the programs typically involve hands-on

assistance with ADL's to non-institutional residents of all ages with disabilities and

chronic conditions. The services do not include domestic services such as housekeeping

activities. PCS services can be provided in the home, outside the home, or a combination

of both. The states cannot however, reimburse legally responsible relatives (typically

parents of minor children with disabilities and spousal caregivers). In 2001, 28 states

offered a PCS benefit, however, they varied in the amount and scope of the services

provided (Kitchner et al., 2003).

These Medicaid policies and services were established with the passage of Section

2176 of the Omnibus Budget Reconciliation Act (OBRA) (P.L. 97-35) of 1981. OBRA

allowed states more flexibility in defining the "medically needy" and permitted states to

vary Medicaid services by group. Regulations implementing OBRA permitted states to

determine eligibility of individuals who were medically needy by varying financial

requirements used for each medically needy group (Centers for Medicaid and Medicare

Services, 2005).

OBRA legislation lead to the creation of Section 1915c of the Social Security Act,

which authorized states to exercise the option of providing home and community-based

alternatives to institutional care (LeBlanc, Tonner, & Harrington, 2001). According to









Kennedy (1997), such legislation allowed more progressive state governments to

experiment with alternatives to institutional placement for people with disabilities. The

main goal for such programs was to decrease nursing home expenditures by allowing

states to redirect federal nursing home funds to HCBS waivers. Program expenditures

were contingent on the decline in nursing home admissions.

The success of such current Medicaid programs may be in question since research

on the provision of long-term services and supports under the Medicaid program has

revealed a significant funding bias toward institutional care. Only about 27 percent of

long term care funds expended under the Medicaid program, and only about 9 percent of

all funds expended under that program, pay for services and supports in home and

community-based settings. Also, only 27 states have adopted the benefit option of

providing personal care services under the Medicaid program. In the case of Medicaid

beneficiaries who need long term care, the only long-term care service currently

guaranteed by Federal law in every state is nursing home care. Although every state has

chosen to provide certain services under home and community-based waivers, these

services are unevenly available within and across states, and reach a small percentage of

eligible individuals. In fiscal year 2000, only 3 States spent 50 percent or more of their

Medicaid long terms care funds under the Medicaid program on home and community-

based care (Harkin & Spector, 2003). Furthermore, the ability of states to limit the

number of waiver "slots" available in order to control program costs has resulted in long

waiting lists across states for HCBS services. For example, in 2002, waiting lists for

HCBS waivers in eight selected states (GA, IA, NC, NM, LA, MI, TX, and WA) totaled

155,884 with 74,244 in Texas alone (Kitchner et al., 2003).









Even though a lack of success of state Medicaid programs makes a strong case for

a federal program, efforts to create an entitlement of PAC services at a national level

have been unsuccessful (Glazier, 2001). In 1997, then Speaker of the House Newt

Gingrich introduced the Medicaid Community Attendant Services Act (MiCASA) as

H.R. 2020. MiCASA would have amended Title XIX of the Social Security Act and

created a new Medicaid service called "Qualified Community-Based Attendant

Services." Such a service would have allowed the choice by any individual eligible for

Nursing Facility Services (NF) or Intermediate Care Facility Services for the Mentally

Retarded (ICF-MR) to use those dollars for "Qualified Community-Based Attendant

Services." The Federal Government would have allocated $2 billion dollars over six

years to help states transition from institutional to community-based services. This $2

billion dollars was to be in addition to the Medicaid dollars the state would spend on

people eligible for nursing homes and ICF-MR's. Specifically, the program provides

qualified community-based attendant services that are based on an assessment of

functional need; provided in a home or community-based setting, including school,

workplace, recreation or religious facility; include various delivery options including

vouchers, direct cash payments, fiscal agents and agency providers; are selected,

managed and controlled by the consumer of the services; include voluntary training on

how to select, manage and dismiss attendants; and are provided according to a service

plan agreed to by the person receiving services (National Council on Independent Living,

2005).

Unfortunately, even though the bill had considerable bipartisan support, it died a

quick death (Glazier, 2001). There was a lot of discussion about MiCASA attracting









people who are eligible for institutional services but who would never go into an

institution. The assumption is that they would jump at the chance to use MiCASA. The

government called this the "woodwork" effect because they believe people would "come

out of the woodwork", costing more money (National Council on Independent Living,

2005). Furthermore, legislators expressed concern that the bill could cost the federal

government $10 to $20 billion per year that would create an upheaval in service systems

leading to the pitting of constituencies against each other for resources (Agosta, 1998).

The above legislative programs coincided with the disability rights movement.

The disability rights movement involved a fight for an alternative approach to long-term

care and sought to meet the specific needs of people with disabilities and their desires to

live and participate actively in their communities (Dautel & Frieden, 1999). The

disability rights movement lead to new programs and services as alternatives to

institutionalization of people with disabilities with the goal of improving their integration

in society. Societal integration includes living in the community, working in mainstream

jobs, receiving education in regular classrooms along with non-disabled students,

attending cultural and social events, maintaining a network of friends, and engaging in

other leisure activities (Dautel & Frieden, 1999; Kaye & Longmore, 1998).

The most recent legislation spawned by the disability rights movement includes a

revision of MiCASA. The updated version of the previously unsuccessful bill was

entitled the Medicaid Community Attendant Services and Supports Act (MiCASSA).

Senators Tom Harkin and Arlan Spector filed the bill in the 106th Congress in November

1999 (Glazier, 2001). Major differences between MiCASA and MiCASSA include the

following: mandate consumer choice of service delivery; states are to be bound by a









"maintenance of effort" requirement that prevents cutbacks in other service areas;

inclusion of aging, persons with mental retardation, and persons with chronic mental

illness; supports for persons with cognitive and sensory impairments, who may be

independent in basic self care (Glazier, 2001). MiCASSA would lead to the provision of

community attendant services and supports include assisting with activities such as

eating, toileting, grooming, dressing, bathing, transferring, meal planning and

preparation, managing finances, shopping, household chores, phoning, participating in

the community, and health related functions like taking pills, bowel and bladder care,

ventilator care, tube feeding, etc. Services would be provided at home, in school, at work

and for leisure activities (ADAPT, 2004).

Unfortunately, similar to MiCASA, the more current bill has been unsuccessful

due to concerns over the financial impact that such a program would have on the federal

government. According to ADAPT (2004), it is feared that the "woodwork effect" as

discussed earlier, would lead to people who are eligible for institutional services to jump

at the chance to use MiCASSA even though they never intended to enter an institution in

the first place. ADAPT (2004) asserts that the woodwork effect is blown way out of

proportion. Specifically, there may be some increase in the number of people who use

the services and supports at first, but the organization asserts that savings will be made on

the less costly community based services and supports, as well as the decrease in the

number of people going into institutions. In addition to the financial ramifications of

MiCASSA, according to Glazier (2001), the fear of overwhelming unmet need seems to

have stalled action to date in Congress. Unmet needs is defined as the number of times

within the past month that an individual was unable to perform an ADL or IADL activity









due to lack of assistance (Hagglund et al., 2004b). Glazier (2001) points out that the

dimensions of PAC need have a very wide range of interpretation. This is dependent on

the definition of eligibility for PAC, which is usually set by the number of ADL's for

which consumers need assistance. Furthermore, estimates of the need for PAC also vary

according to whether one includes persons with limitations in performing ADL's, those

who actually require another person's assistance with those ADL's, or those who need

standby assistance or supervision.

ADL Assessments

ADL impairment associated with indirect costs of personal assistance is sometimes

used to guide health care policy (Cotter, Burgio, Stevens, Roth, & Gitlin, 2002). Since,

ADL assessments were used to reliably predict nursing home admissions, policy makers

have suggested that such assessments should be used to determine eligibility for PAC

services (Kennedy, 1997). ADL assessments are used to measure an individual's ability

to independently perform essential daily living activities, e.g. bathing, dressing,

transferring eating, and toileting (Allen et al., 1997; LaPlante, Kaye, Kang, & Harrington,

2004). The amount of PAC services received loosely corresponds to the level of

disability and the ability to perform ADL's (Hagglund et al., 2004). According to Cotter

and colleagues (2002), accurate assessment of ADL's is vital for documenting functional

ability and decline. The authors point out that clinicians rely on proxy ratings of ADL

performance when making recommendations, however, previous research has suggested

that proxy reports of ADL performance may not accurately reflect the patient's true

abilities or accurately reflect what actually occurs during an ADL interaction.

Furthermore, a critical issue for advocates is whether the ADL criteria are too narrow. A

constant framing of need for assistance in terms of the most rudimentary acts of survival









may have the insidious effect of truncating the perceived range of activities needing

assistance and, thereby limiting the utility of the program benefits for a substantial

portion of the population technically eligible for services (Kennedy, 1997).

Kennedy (2001) examined the accuracy of ADL assessments as a tool for effective

planning of disability support services. The author points out that some researchers have

used national estimates of need for ADL assistance to speculate on the eligibility of

individuals for publicly funded PAC services. Kennedy acknowledges a problem with

this methodology in that most of those who need disability assistance already receive

ADL assistance in some form. Furthermore, such individuals who are stable and have

satisfactory support arrangements are unlikely to seek out new publicly sponsored

services, even if they are eligible to receive them. This may be the case if a family

member is providing PAC services. Finally, the author stresses the need for a more

comprehensive needs assessment for effective planning at the national level. Such an

assessment should assess an individual beyond the level of independence with ADL's,

describe the type and level of services currently received, and identify the perceived gaps

in such services.

Functional Independence Measure (FIM)

As discussed in Chapter 1, one of the most commonly used instruments to assess

the ability to perform ADL's is the FIM. A task force cosponsored by the American

Congress of Rehabilitation Medicine and the American Academy of Physical Medicine

and Rehabilitation developed the FIM as an indicator of disability measured in terms of

required degree of assistance by another person (Hamilton, Deutsch, Russell, Fiedler, &

Granger, 1999). The instrument, which was constructed to evaluate and monitor

functional and cognitive status, was designed to be sensitive to change in the functional









independence of an individual over the course of a comprehensive inpatient medical

rehabilitation program (Hall, Bushnik, Lakisic-Kazazic, Wright, & Cantagallo, 2001).

The FIM has been described as having two domains, a motor score domain (13

items) and a cognitive score domain (5 items) (Buchanan, Andres, Haley, Paddock, &

Zaslavsky, 2003). This assessment tool requires that the individual administering the

FIM be a trained clinician, (Samsa, Hoenig, & Branch, 2001). All items are rated on a 7-

point scale with level 1 indicating total assistance and level 7 indicating complete

independence (Hamilton et al., 1999). Item scoring is considered complex since scoring

rules differ for each of the 18 items (Buchanan et al., 2003). For example, activities

involving locomotion have an explicit distance requirement and the use of modified diets

for swallowing can affect the scoring on the eating item. Furthermore, scoring is

influenced by safety and time required to complete an activity (Buchanan et al., 2003).

Even though the FIM is considered a single measure, Rasch analysis of the

instrument has revealed that the FIM is indeed made up of two separate interval

measures, a cognitive activity measure and motor activity measure (Hamilton et al.,

1999). The Rasch model creates a linear measure, with items placed hierarchically and

with fit statistics indicating how well different items describe the group of subjects and

how well individual subjects fit the whole group (Grimby et al., 1996). With the division

of the FIM instrument into two components, many health care professionals rely on the

motor portion of the FIM to predict the need for PAC.

Weitzenkamp and colleagues (2002) studied PAC need for individuals with SCI.

Predictors of PAC included the FIM, length of hospital stay, days in a nursing home,

neurological impairment level, work, living alone, government funding, gender, ethnicity,









age, and years post injury. The authors studied 2154 participants with SCI and compared

data from the onset of injury to 1st, 5th, 10th, 20th, and 25-year post injury using the

National Spinal Cord Injury Database. The results of the study demonstrated that of the

11 predictors of PAC need, ADL function, as a measured by the motor portion of the FIM

was the strongest predictor. Although function as measured by the FIM was shown to be

the best predictor of PAC need, there were no other disability measures used for

comparison. Furthermore, the findings are confounded by the fact that PAC, in this case,

is defined in terms of ADL's, which is consistent with the FIM. This definition

contradicts more modern concepts of function and PAC that include measures of more

complex activities, social participation, and health-related quality of life (Latham &

Haley, 2003).

Hamilton and colleagues (1999) examined the validity of the FIM in predicting

paid personal assistance for individuals with SCI as a means for relating disability costs

to function. The study involved 109 participants with a wide range of spinal cord

injuries. Home visits were conducted over a one-year period by registered nurses who

were trained in administering the FIM. The nurses administered the FIM, followed by a

disability cost inventory. Participants were also instructed to use a stopwatch in order to

record the minutes of assistance required for personal care activities. These activities

included eating, dressing, bathing, grooming, bladder and blower care, transfers, and

locomotion. The authors referred to these activities as "basic activities of daily living."

The disability cost inventory included a personal assistance component, which was based

on the average number of paid assistance minutes per day. Such care includes assistance

with ADL's provided by attendants, nurses, and respite caregivers. The authors









concluded that participants with low FIM scores (higher dependence) required

proportionally more daily assistance than participants with high FIM scores (high

independence). Furthermore, the authors reported that the FIM is a significant predictor

of the amount of daily assistance needed by persons with disabilities living in the

community. The study specifically explored assistance with ADL's. The authors of the

study noted several limitations, including problems in transferability of quantitative

findings involving the prediction of minutes of assistance to the larger population of

people with SCI because of biases. Such biases are due to the fact that the participants

represented a convenience sample of current and former patients. Also, as pointed out by

the authors, a low percentage of women, nonwhites, married persons, and those living in

institutions were represented. As such, transferability of the results of this study to the

general population of individuals with SCI would be questionable. Finally, it should be

noted that half of the participants in the study received no personal assistance with

personal care activities.

Saboe and colleagues (1997) examined the relationship between FIM scores and

the need for personal assistance. This longitudinal study involved one hundred and sixty

individuals with SCI. Two years post injury, participants were administered the FIM and

assessed their current use of personal assistance for ADL's. The assessment of use of

personal assistance with ADL's involved the client answering yes or no to one question

regarding the need for personal assistance. The authors concluded that two years after

SCI, 35% of the participants used personal care assistance. These individuals had

significantly lower FIM scores than nonusers of personal care assistance. The authors

reported a high amount of variability with this relationship. This was indicated by a large









standard deviation associated with FIM scores. As pointed out by the authors, the study

was limited by a lack of focus on FIM scores relative to actual amounts of personal care

assistance used. Furthermore, the only question asked to participants regarding personal

assistance, was whether or not they received such a service. Responses to such a

question could be misleading depending on the interpretation made by the participant.

For example, an individual may be responding to personal assistance in terms of one,

two, or many levels of assistance associated with ADL's, transportation, vocational

activities, or leisure activities. As such, an individual may respond that they do not

receive assistance because they are thinking of assistance in terms of ADL's when they

receive assistance with vocational activities.

Limitations of the FIM

The FIM is derived from the Barthel Index (Mahoney & Barthel, 1965), and the

predominant focus is on changes in functioning. Although the FIM is a reliable

instrument and several studies have cited its validity as a valuable tool to assess

functional independence with ADL's (Buchanan et al., 2003), the instrument was created

for inpatient populations and does not include items that assess complex activities and

social participation (Latham et al., 2003). As such, the instrument appears limited in

addressing an individual's comprehensive PAC needs. Additionally, the FIM is based on

a very limited construct of disability. Many higher order aspects of productive

functioning are unrelated to the self-care tasks measured by the FIM (McAweeney,

Forchheimer, & Tate, 1996). Specifically, these activities include IADL's,

vocational/education and transportation activities. Such aspects of productive functioning

allow an individual to participate in the community. Ignoring higher order of productive

functioning demonstrates a limitation in the breadth of coverage associated with the FIM.









Jette and associates (2003) examined the breadth of coverage among functional

status tools used in post-acute care. The authors explored an empirical comparison of the

FIM and three other functional outcome instruments with respect to content, breadth of

coverage, and measurement precision. The authors analyzed data from a sample of 485

post acute care patients with a variety of disabilities including SCI. The goal of the

authors was to assess items from existing functional outcome tools used in post acute care

so that they could be combined for analysis into one common scale. The functional

outcome tools used for data collection included the FIM, the minimum data set (MDS)

for skilled nursing and sub acute rehabilitation programs (Morris, Murphy, &

Nonemaker, 1995); the Outcome and Assessment Information Set for Home Health Care

(OASIS) (Shaughnessy, Crisler, & Schlenker, 1997), and the Short Form-36 (SF-36) for

ambulatory care programs (Ware & Kosinski, 2001). A total of 58 activity items from all

four instruments were administered to the participants. Items from the instruments were

equated using the Rasch Model. This method was necessary to link the instruments to

one common scale. Figure 2 shows the comparison of the instrument on the same scale

representative of functional ability.

The authors point out that across all four instruments it can be seen that cognitive,

communication, and bowel and bladder continence function items achieved the lowest

functional ability estimates, which indicates that those items were usually less difficult

for persons in the sample to perform compared with other items contained in the

instrument. The PF-10 derived from the SF-36, lists items with the highest item

functional ability calibrations, compared with the other three instruments. For example,

items listed on the PF-10 such as carrying groceries, moderate activity, and vigorous
















PF-10


More
Ability







F
U
N
C



0-
N
A
L


A -
B
I
L
I
T
Y






Less
Ability


MDS


Vigorous Activity


Moderate Activity


Carry Groceries
Walk 1 mile
Climb many flights
Bend or Kneel


I Walk Blocks


Climb 1 Flight
Walk 1 Block
Bathing or Dressing


OASIS


Walk of Unit

Walk in Hall



Walk Room Bathing

Walk in Room
Dressing
Transfer
Move Within Unity
Toilet Use
Bed Mobility
Hygiene
Bowel Continence
Eating
Bladder Continence
Decision Making

Memory

Make Self Understood

Understand Others


-- Speech Clarity


Shopping

Laundry




Housekeeping

Bathing
Locomotion
Transportation
- Dress LE
Grooming
Fix Light Meals
Oral Medications
- Dress UE
Transfer
Telephone Use
Toileting
- Eating
Urinary Incontinence
Cognitive Function
Oral Expression




Bowel Incontinence


Figure 2. Comparison of Functional Status Tools


(Adapted from Jette et al., 2003)


FIM


Stair Climbing


Locomotion

-Dress LE
Toilet Transfer
Toileting
Bathing
-Bowel Mgmt
Bladder Mgmt
Bed-Chair Trfs
Dress UE
Grooming
Memory
Problem Solving
Eating
Comprehension
Social Interactiol
Expression









activities, require the most functional ability to perform and would be considered the

most difficult items out of the four instruments.

Jette and colleagues point out that of the four instruments depicted in Figure 2, the

FIM is the most widely used outcome instrument in post acute care. As discussed earlier,

the FIM has been documented in the literature as being a predictor of the need for

personal assistance. According to Figure 2, the FIM covers a very small portion of

functional ability, which would make the instrument most precise and relevant for

inpatients whose function is at the low end of the continuum. Although many individuals

with SCI might fall under this category, there are many individuals with SCI at higher

level of function that still require personal assistance. Examples of such activities are

listed in Figure 1 of Chapter 1. Upon examination of the items of the FIM as listed in

Figure 2, one can see the possibility of ceiling effects and flooring effects. This is

evident by the gaps on the FIM when compared with the other four instruments. For

example, a ceiling effect is evident if one compares the PF-10 to the FIM. If an

individual's functional ability allows him/her to carry groceries, as indicated in Figure 2,

that level of function cannot be pinpointed by the FIM, since this level of function

exceeds that required for stair climbing, which is the most difficult item on the FIM. A

flooring effect is evident, if one compares the MDS to the FIM instrument. If an

individual exhibits a maximum functional ability consistent with understanding others as

indicated on the MDS, that same functional level cannot be accurately measured by the

FIM, since expression is the lowest level of functional ability as measured by the FIM.

As pointed out by the authors of this study, ceiling and floor effects severely reduce

measurement precision and thus restrict the utility of the instruments.









Observations in this particular study coincide with previous research on the FIM

that has highlighted ceiling and flooring effects as well as insensitivity to small

differences in function (Berry et al., 2003). In fact, since, the FIM is a generic measure

of functional status, there is a concern that the instrument is insensitive to changes in the

functional status of people with SCI (Meyers, Andresen, & Hagglund, 2000). One has to

question the ability to recommend PAC for an individual with SCI based on the FIM

instrument, if such an instrument is neither comprehensive nor sensitive to complete

functional ability.

Unmet Need

Limitations in the comprehensiveness of assessments like the FIM might contribute

to higher frequencies of unmet need for PAC services. Unmet need is possibly the

strongest indicator of the quality and adequacy of current PAC service delivery in the US

(Hagglund et al., 2004). There are many studies that have examined unmet need for PAC

services for individuals with disabilities.

LaPlante and Associates (2004) conducted a study that examined the unmet need

for personal assistance services for individuals with disabilities. The authors specifically

focused on ADL's and IADL's and compared perceived unmet need with reduced hours

of help received. As stated previously, ADL's are comprised of activities such as

bathing, dressing, transferring, toileting, and eating. IADL's include tasks such as taking

medications shopping for groceries, managing money, and doing heavy housework. Data

analyzed for this study came from a National Health Interview Survey, a large nationally

representative survey of households in the US. LaPlante and colleagues concluded that

unmet need is prevalent among adults of all ages who have substantial needs for PAC

services. In fact, about 29% of adults needing help in two or more of the five basic









ADL's need more help than they receive. The authors also determined that an

association exists between perceived unmet need and reduced hours of asssitance,

independent of level of disability, race, age, and income level. An important result of this

study is that unmet need was not a measure of an individual's insatiable demands for

more help (basically not really needing assistance and just wanting help). The authors

also confirmed that unmet need is associated with higher rates of adverse consequences,

including discomfort, going hungry, losing weight, dehydration, injuries due to falls, and

burns.

Allen and colleagues (1997) examined the prevalence and consequences of unmet

PAC need for individuals with disabilities. The authors investigated unmet need for

assistance with ADL's, IADL's and transportation in a randomly selected sample of 632

adults with disabilities. The results of the study indicated that prevalence of unmet need

for assistance with ADL's ranged from 4.1% to 22.6% of the full sample. Unmet need

for IADL's was reported ranging from 15.9% to 34.6%. Participants under the age of 65

reported high amount of unmet need for transportation activities. In addition to

prevalence of unmet need, the authors noted consequences resulting from unmet need.

Specifically, more than 25% of the respondents had impairments in toileting and reported

wetting or soiling themselves because they did not have help getting to the bathroom.

Additionally, over 25% of the respondents reported not being able to have a bath, falling

due to lack of assistance with transferring, high stress due to lack of assistance with

housework, and missing doctor's appointments and recreation activities due to lack of

assistance with transportation.









Kennedy (2001) conducted a similar study by delineating the type and magnitude

of disability assistance needs across the US population, focusing on factors associated

with perceived gaps in assistance. The author examined data estimates from the 1994 and

1995 Disability Follow-Back Surveys. Specifically Kennedy explored self-reported

assistance deficits with ADL's and IADL's. The results of this study showed that an

estimated 3.2 million adults with disabilities have at least one unmet assistance need,

usually involving IADL's. Approximately 970,000 adults with disabilities reported one

or more assistance deficits with basic ADL's. As pointed out by Kennedy, this

population is a logical target for expanded state or federal personal assistance

programming.

In order to determine whether the source of PAC services can have an effect on

unmet need, Hagglund and colleagues (2004) compared consumer-directed and agency

directed personal assistance services programs. The authors compared 61 individuals

with physical disabilities who receive PAC through consumer-directed programs with 53

individuals with physical disabilities who received services through an agency-directed

model. Participants in both the consumer-directed and agency-directed groups reported

high levels of unmet needs in PAC services. Specifically, 42% of participants who

needed assistance with ADL's had at least one unmet need in the last month, while 52%

had at least one unmet IADL need in the past month. There were no significant

differences between the two groups in terms of prevalence of unmet need. The authors

point out that more attention needs to be targeted towards those at risk of not receiving

adequate PAC services and that doing so, will increase the likelihood of increased









community and vocational activities and lower the chances of consequences such as high

hospitalization rates.

Consumer Directed PAC

Legislators responding to issues related to PAC must first deal with the most highly

contested issue facing policy makers, the quality of consumer-directed services (Tilly,

Wiener, & Cuellar, 2000). According to Tilly and associates (2000), most government

representatives as well as disability representatives consider beneficiaries with consumer

direction to be much more satisfied with their PAC services. The authors point out that

such opinion conflicts with the notion by home-care agencies and union representatives

that there is no difference between agency-directed PAC services and consumer-directed

PAC services. Interestingly, the literature demonstrates that most consumers with a

disability are directing their own PAC and as a result are more satisfied with such

services. This is clearly the case as family and friends of people with disabilities provide

over 85% of all hours of assistance with ADL's and IADL's (LaPlante et al., 2002;

LaPlante et al., 2004).

Hagglund and colleagues (2004) compared consumer-directed and agency-directed

personal assistance services. Specifically, the authors examined consumer's report of

unmet needs, empowerment, satisfaction, safety and quality of life associated with PAC.

The authors studied 61 individuals with physical disabilities who received PAC through a

consumer-directed program and 53 individuals with physical disabilities who received

services through an agency-directed model. Participants were interviewed and

administered satisfaction questions derived from the Patient Satisfaction Questionnaire

(PSQ-III) and the Group Health Association of America (GHAA). The participants also

received safety questions from the national Home Care Survey and the quality of life









questions from the SF-36. The authors concluded that participants in consumer-directed

PAC programs reported more empowerment and satisfaction with such services than

agency-directed PAC programs. Safety, and unmet needs were the same for both models;

however, enrollment in a consumer-directed program was a predictor of enhanced quality

of life.

Prince and associates (1995) found that a better quality of life associated with

consumer-directed PAC may be due to lower medical problems, fewer hospitalizations,

and better perception of health. The authors compared self-managed PAC versus agency-

provided PAC for individual with high-level tetraplegia. The study involved 71

participants who had sustained spinal cord lesions between Cl and C4 and were at least

one-year post injury. The participants receive a comprehensive battery of assessments

that examined perceived functioning, life satisfaction, fulfillment and participation in

society, personal assistance satisfaction, locus of control over various aspects of their

lives and their psychological self-reliance. The authors concluded the self-managed

group had many more hours of paid attendant care, fewer medical problems, fewer

hospitalizations, and a better perception of health than the agency-directed group.

Furthermore, the self-managed group reported a greater satisfaction in having a choice of

a caregiver, spent less money and used more hours of paid care. Finally, the authors

concluded that financial burden borne both by the individual and society and the

emotional burden associated with families and friends were diminished by individuals

managing their own PAC.

Cash and Counseling

In order to allow individuals with disabilities to manage their own PAC services,

a program was developed that offers consumers with disabilities cash allowance in lieu of









agency delivered services (Mahoney, Simone, & Simon-Rusinowitz, 2000). The program

is known as the Cash and Counseling Demonstration and Evaluation, is funded by the

Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning

and Evaluation at the U.S. Department of Health and Human Services. A three state

Cash and Counseling Demonstration was implemented to compare the Cash and

Counseling consumer-directed model with the traditional agency-directed approach to

delivering personal assistance services (Cash and Counseling, 2005). This consumer-

direct model gives consumers a flexible monthly allowance to purchase disability-related

goods and services (including hiring relatives as workers), provides counseling and

financial assistance to help them plan and manage their responsibilities; and allows them

to designate representatives to make decisions on their behalf (Foster, Bown, Phillips,

Schore, & Lepidius, 2003).

The Cash and Counseling approach provides consumers with the ability to direct

and manage their own personal assistance services and address their own specific needs.

Cash and Counseling intends to increase consumer satisfaction, quality, and efficiency in

the provision of personal assistance services. The vision guiding this expansion is the

promise of "a nation where every state will allow and even promote a participant-directed

individualized budget option for Medicaid-funded personal assistance services." As of

2004, ten states were awarded three-year grants of up to $250,000 to implement the Cash

and Counseling model and collect information to monitor the effectiveness of these

programs. Due to the success of the Cash and Counseling Demonstration and Evaluation

in Arkansas, Florida, and New Jersey, interest from other states, a supportive political

environment, and President George Bush's New Freedom Initiative, The Robert Wood









Johnson Foundation, the Office of the Assistant Secretary for Planning and Evaluation,

and Administration on Aging have authorized an expansion of the Cash and Counseling

program that will provide grants and comprehensive technical assistance to additional

states that are interested in replicating, and in some states expanding, on this Cash and

Counseling model (Cash and Counseling, 2005).

Consumer Management of PAC

With government funds, some PAC programs give consumers, rather than

homecare agencies, control over who provides services and how the services are

delivered (Tilly et al., 2000). Largely through the efforts of the independent living

movement, consumers have been able to assume more control over the care-giving

process by being able to recruit, hire, train, manage, and pay PCA's (Prince et al., 1995).

A survey carried out by the World Institute on Disability of federal/state and state-only

financed programs for homecare found that 75 programs used independent PAC

providers. Of these programs, 80% allowed consumers to hire and fire their own PAC

workers and half allowed consumers to train PAC workers (Doty & Kasper, 1994; Litvak

& Kennedy, 1990). Managing PAC services by an individual with a newly sustained SCI

can be quite an adjustment. Furthermore, lacking the knowledge of one's own PAC

needs makes managing such services more difficult, especially when one considers the

amount of services that that individual will need for the rest of his/her life.

In order to utilize attendant care services, people with disabilities must quickly

develop an understanding of their PAC needs in order to organize and manage their PAC

services. Understanding personal care needs can have life long implications and the

impact of inadequate personal care assistance on physical, emotional, and social well

being can be tremendous (Lanig, Chase, Butt, Hulse, & Johnson, 1996).









The knowledge of an individual's personal care needs is crucial in being able to

hire and train individuals to provide PAC services. One of the most commonly cited

problems regarding attendant services is consumers' lack of training and supervision

skills (Ulicny, Adler, & Jones, 1990). Skills that are necessary to utilize a personal care

attendant include skills in management, supervision, interviewing, hiring, training,

organization, and assessment of personal care needs. The following quote describes the

difficulty of transitioning to managing a personal care attendant:

One of the biggest challenges is changing your mindset. You can't look at
a personal assistant as someone who is just helping you out. You really
need to approach it as managing an employee or running your own small
business. You're not asking the person to do you a favor. You're hiring
them to provide an important service for you. (Weas, 2002)

Such challenges are the reason that many Independent Living Centers provide

training to consumers in order for them to be able to assess their own personal attendant

care needs. For example, Community Resources for Independence offers a training

manual for persons with disabilities receiving attendant care services (Community

Resources for Independence, 2002). The manual offers a detailed personal needs

inventory that can help consumers to define their range of specific needs for personal

assistance. The self-assessment is a comprehensive inventory that includes questions

regarding ADL's, IADL's, School/Education, Social and Community Activities,

Transportation, Personal Finances, Communication, Health, and Vacation Activities. The

manual allows an individual to be prepared to hire and train PCA's to provide attendant

care services. This type of assessment is an excellent example of a comprehensive

instrument and should serve as a model for breadth of its scope in the development of

assessments of PAC for individuals with SCI. It seems clear that assessments that









explore individuals' needs beyond functional ability to perform ADL's would be more

successful in predicting PAC need.

Personal Assistance and a Model of Disablement

New rehabilitation models examine disability by exploring many constructs in

addition to functional status. According to Disler and colleagues (1993), a paradigmatic

shift in outcome rehabilitation occurred with the introduction of the World Health

Organizations (WHO)'s International Classification of Impairments, Disabilities, and

Handicaps (ICIDH). The authors point out that the scope of this model was far broader at

it attempts to introduce taxonomy of consequences of illness, and introduces standard

terms of impairment, disability, and handicap. Substantial revisions to the ICIDH have

lad to the most recently developed disability model known as the International

Classification of Functioning (ICF) (Arthanat, Nochajski, & Stone, 2004).

The theoretical framework of the ICF Model demonstrates limitations of just

examining and individual's ability to be independent with ADL's for determining all

PAC needs. This model provides a unified and standard language and framework for the

description of health and health-related states. The ICF model is made up of two parts

(Figure 3). The first part includes components of functioning and disability. This

component includes the body function component, which fall under two classifications.

One classification is for functions of body systems, which involves physiological or

psychological functions. The other classification is for body structures, which includes

anatomic parts of the body such as organs, limbs, and their components (WHO, 2001).

Activities and participation cover a complete range of areas denoting aspects of

functioning from both an individual and societal perspective. Activities are defined as

"an execution of a task or involvement in a life situation in a uniform environment."









Participation is described as "the execution of a task or involvement in a life situation in

an individual's current environment" (WHO, 2001).

The second part of the ICF model includes components of contextual factors, which

are external features of physical, social, and world attitudes, which can have an impact on

the individual's performance in a given domain. These features are described as

Environmental factors and can impact the functioning and disability part of the model.

Organization of these contextual factors is based on sequence from the individual's most

immediate environment to the general environment. Personal Factors is also a component

of contextual factors but they are not classified in the ICF because of the large social and

cultural variance associated with them. (WHO, 2001). All components within the two

domains of the ICF contribute to a model of disablement.

The disablement scheme of the ICF model involves central goals to delineate the

major pathways from disease or active pathology to various types of functional

consequences (Jette, 1994). The pathway described by the ICF is bi-directional. This bi-

directional approach contrasts previous models such as the Nagi Model and the National

Center for Medical Rehabilitation Research (NCMRR) model (See Figure 3).

A case example can help to better understand how the ICF model can serve as a

guide for understanding an individual with SCI's PAC needs. The following example is

based on an individual with a diagnosis of complete C6 tetraplegia. According to the ICF

model, the health condition or disease would be the spinal cord injury. The individual

could have significant functional limitations, which may lead to requiring assistance with

activities of daily living. The paralysis as a result of the level of spinal cord injury and









physiological deficits would fall under bodily functions and structures, while ADL's

would make up the activities component of the model. The individual's participation


Health condition
(disorder or disease)





Body Functions and _0, Activities Participation
Structures






Environmental Personal
Factors Factors


Figure 3. ICF Model



would include the ability to execute tasks in society such as leisure, home/yard

maintenance, vocational, and educational activities. According to Hagglund and

colleagues (2004) more research is critically needed in the area of participation to

document increased participation with increases in PAC services. Such evidence would

help legislators respond, especially if it were to show economic advantages and benefits

of increased participation in the community.

Such participatory tasks may be limited due to other components of the model such

as secondary health conditions, environmental factors, and personal factors. Secondary

health conditions may be acute illnesses, respiratory problems, or conditions associated

with spinal cord injuries. Environmental factors may include lack of funding to support









PAC. Lack of funding, leading to lack of PAC, will most likely lead to deficits in the

functional, activities, participation, and possibly health conditions arenas. Personal

factors refer to the particular background of an individual's life and living, and comprise

features of the individual that are not part of a health condition or health states. These

factors may include gender, race, age, other health conditions, fitness, lifestyle, habits,

upbringing, coping styles, social background, education, profession, past and current

experience (past life events and concurrent events), overall behavior pattern and character

style, individual psychological assets and other characteristics, all or any of which may

play a role in disability at any level (WHO, 2001).

The bi-directional pathway of the ICF model incorporates the medical and social

model. The medical model views disability as a personal problem, directly caused by a

disease, trauma, or other health condition, which requires medical care. The social model

views disability, not as an attribute of an individual, but rather a complex collection of

conditions, many of which created by the social environment. The social components

(environmental, participation, activities) can impact or be impacted by the medical

components (body structure, health condition) (WHO, 2001).

The FIM appears to be ignoring many social components of the ICF Model, likely

due to the fact that the FIM was created for assessing inpatient functional dependence.

The ICF Model demonstrates how neglecting any component of an individual's disability

needs, can lead to not only deficits in overall PAC, but deficits in an individual's quality

of life and health. A comprehensive assessment of PAC need that incorporates all

components of the ICF Model appears warranted.









Role of the Life Care Planner

Life care planners, as discussed in Chapter 1, assess people with disabilities' needs

well beyond function. In order to make such an assessment, the life care planner must

develop a consistent methodology for analyzing the needs created by the onset of

disability (Deutsch, 1995). Such a methodology includes a comprehensive review of all

available medical, psychological, psychosocial, and rehabilitation-related information. In

addition the life care planner reviews records for school-aged children and

comprehensive work histories for adults. It is important that the life care planner be

aware of all medical and rehabilitative aspects of the case and determine what other

evaluations may be needed to identify the individual's disability-related needs.

The life care planner must consistently communicate with other rehabilitation

professionals involved in the case (Mediproseminars, 2004). Such professionals may

include: physical therapists, occupational therapists, speech therapists, physicians,

nurses, psychologists, and any other professionals involved. Professionals who often

conduct life care plans include: catastrophic case managers, rehabilitation psychologists,

rehabilitation counselors, or rehabilitation nurses (Deutsch & Kitchen, 1994).

A major role of the life care planner is to utilize research and resources to

substantiate recommendations. Life care planning recommendations must be data-

supported, rather than based on simple opinions. Data should be collected from many

resources, getting information about the individual client as well as exploring relevant

research studies which have been published, related to needs of similar individuals with

disabilities (MediPro Seminars, 2004).

Table 1 is an example of an attendant care component of a life care plan, which

includes specific types of personal attendant care services, specific items for each service,









frequency of services, and the annual cost for such services. As seen in Table 1,

attendant care may include assistance in home health issues or medical issues,

housekeeping, home maintenance and repair, and yard care and maintenance. The life

care planner must conduct a through evaluation of an individual's PAC needs before

recommending such services. As seen in Table 1, recommendations may change as

individual progresses through his/her lifespan. For example, as seen in Table 1, this the

frequency of an individual 's PAC increases after the age of 55. This is due to decrease

in functional ability associated with the aging process. The life care planner must be able

to make a comprehensive assessment of an individual with a disability needs so that the

appropriate care is designated throughout his/her lifespan.

LCP Knowledge and Competencies-Framework of the ICF Model

The ICF appears to be an excellent model for life care planners in evaluating

needs and services for individuals with disabilities. Life care planners must have a

thorough knowledge of the medical and social and environmental aspects of disability.

As evident by the ICF model (Figure 2), medical and social implications can greatly

impact each other, thus affecting the overall level of disability.

Knowledge of the contextual factors as outlined in the ICF model is critical for life

care planners in making recommendations. Each individual is different, in that he/she

resides in his/her own environment. Life care planners must be attentive to certain

barriers that often limit persons with specific disabilities to complete activities and

participate in society. Barriers may exist at different levels and may vary depending on

type of disability. The life care planner must be aware of resources, which may include

technology that is available to minimize such barriers and restrictions. As evident by the










ICF model, such restrictions can affect health conditions and body systems, thus reducing

life expectancy.

Table 1. PAC Component of a LCP


Description/ Rationale: Through Age: Cost: Frequency: Annual
Service: Cost:

Home Health Provide Beginning: $9.41- Avg 3 hrs/day 365 $10,304 -
Aide/Personal assistance with 2002 $10.68/ days/year (approx $11,695/
Aide or transfers, safety Ending: hr 21 hours/week) year
Personal Care precautions Age 55
Attendant
Beginning $19.00- Avg 5 hrs/day 365 $34,675-
Age 55 $23.00/ days/year (approx $41,975/
Ending: Life hr 35 hours/week) year
Expectancy

Housekeeper Provide Beginning: $7.99- Avg 3 hrs/day 365 $8,725-
assistance with 2002 $8.65/hr days/year (approx $9,446
household Ending 21 hours/week) /year
cleaning, Age 55
maintenance,
driving to and Beginning $7.99- Avg 4 hrs/day 365 $11,633-
from Age 55 $8.65/hr days/year (approx $12,594/
appointments, Ending: Life 28 hours/week) year
errands Expectancy

Home Replacement Beginning $10.00- Avg 5 hrs/month $600-
Maintenance services for 2002 $12.00/ 50 weeks/year $720/year
and Repair minor home Ending: Life hr
repair and Expectancy
maintenance

Yard Care and Replacement Beginning $10.00- Avg 8 hrs/month 9 $720-
Maintenance services for 2002 $12.00/ months/year $864/year
yard care Ending: Life hr
Expectancy



The life care planner must also be aware of how the aging process and life

experience of individuals with disabilities can affect activities and participation. For

example, individuals with SCI who utilize a manual wheelchair (activity and

participation) for most of their lives will often develop rotator cuff tribulations (health

condition). Such problems can trigger the need for that individual to require a motorized









wheelchair. Such complications need to be projected in a life care plan so that the

individual receives adequate services when the problems arise.

Finally, life care planners are consistently required to educate themselves as to the

research associated with catastrophic disabilities. As technology advances, and as new

techniques are developed to treat various disabilities, the needs of those individuals will

change as well. Other areas include projected complications related to injury, the

recommendations of assistive devices, the need for medications, the need for therapeutic

modalities, and the need for PAC. Strong research support can determine whether a life

care plan is accepted and provide a means for educating all parties involved. For

example, empirical studies that demonstrate the potential for individuals with spinal cord

injuries to develop pressure sores would support the recommendation for assistance with

transfers if the individual is not capable of transferring independently.

Life care planners consider all components of the ICF model. The bi-directional

map of the components within the ICF model appears to be similar to the approach that is

taken by Life Care Planners when evaluating an individual with a disability. The ICF

model demonstrates the dynamics behind disability, thus it is similar to the dynamics of a

LCP. It would seem that the perspective of a professional life care planner, skilled in

evaluating disability needs from all aspects of the ICF model, would be a valuable in

assessing an individual with SCI's PAC needs.

Summary and Rationale for a Comprehensive PAC Instrument

As indicated in this chapter, the need for PAC services is on the rise as individuals

with disabilities are living longer and healthier lives. In response to this increase,

legislators and people with disabilities have made a strong effort to increase public

funding for PAC services. Programs involving such funding have been functioning at the









state level, although more recently, disability advocates have been pushing for a national

system of PAC. The lack of success of a national program is in part due to a high level of

unmet PAC need and the concern that such lack of current assistance will lead to an

enormous financial burden on the federal government. Unfortunately, the financial

burden to provide PAC assistance has fallen upon state Medicaid programs and such

programs have been unsuccessful. Furthermore, the lack of met need has the potential of

causing individuals to have many health related problems. It would appear that these

health related consequences such as hospitalizations, institutional care, and higher

medications would have a major economic impact on current government funded health

care programs. Thus, reducing unmet need would ease the burden of funding health

related consequences. In addition, the federal government's fear of the "wood work"

effect as discussed earlier might be decreased if legislators have an accurate and precise

understanding of individuals with disabilities' PAC needs. Such an instrument could be

used to estimate the cost of providing such services. Having such information will allow

legislatures to compare the cost of providing such services with the cost of paying of

health related consequences associated with unmet need. In addition, such knowledge

could be used by disability rights activists when lobbying for national legislation to fund

PAC.

Currently, the only instrument being used to predict cost of PAC as demonstrated

by the literature is the FIM. The FIM have been lauded for being able to predict PAC

needs, however, there are many limitations of this instrument including inadequacy in

breadth of coverage and lack of sensitivity to complete functional ability. As discussed

in this chapter, researchers, in order to predict the cost associated with PAC needs have









relied on the FIM. Such studies have been limited due to the fact that FIM focuses on

self-care tasks when there are many higher order aspects of productive functioning

associated with disability. In order to truly predict the cost of PAC services, one has to

consider such services beyond the assistance with self-care tasks.

Agencies contracting with the government need to be able to rely on better cost

predictors of PAC in order to be able to utilizing public funding to provide such services.

In addition, a comprehensive assessment would allow agencies to have an enhanced

understanding of the PAC services required by individuals with SCI. Knowledge

obtained by such an assessment will ensure that appropriate assistance is provided to

meet all the PAC needs of an individual with SCI resulting in less prevalence of unmet

need.

In addition to agency directed care, as indicated in this chapter, it is evident that

individuals with SCI are directing their own PAC services. As such, a comprehensive

assessment of PAC needs will allow individuals with SCI to appropriately hire, train, and

manage individuals to provide such services. It would seem reasonable that a

comprehensive understanding of one's own PAC needs would have a positive impact on

the success, type and amount of assistance received. In order to obtain a comprehensive

understanding of all the activities associated with PAC, the development of such an

assessment should incorporate the first-hand knowledge of individuals with SCI.

In addition to integrating the perspective of individuals with SCI, the development

of a complete PAC assessment should follow modern models of disablement. New

models examine disability by exploring many constructs in addition to functional status.

Models such as the ICF incorporate a synthesis of different perspectives of health from a






48


biological, individual, and social perspective. Life care planners experienced in making

PAC recommendations for individuals with SCI often make recommendations using

methodologies that coincide with many aspects of the ICF Model. As such, life care

planners would be valuable in the development of a comprehensive assessment of PAC

need for individuals with SCI.














CHAPTER 3
METHODOLOGY

The aim of this study was to collaborate with life care planning experts as well as

veterans with SCI, to understand the critical constructs and items, necessary to examine

the need for PAC. To achieve these research goals, two separate qualitative techniques

were implemented and discussed below. The University of Florida Health Science

Center Institutional Review Board (IRB-01) and the Veterans Administration (VA)

Subcommittee for Investigations approved the present study prior to the enrollment of

participants.

Research Question 1

What are the critical constructs and items necessary to examine the need for PAC

services for veterans with SCI from the prospective of the professional?

Subjects

Certified life care planning experts (n=100) were selected from a mailing list

provided by the MediPro Seminars Life Care Planning Certification Program. The

experts selected had worked for at least three years as a life care planner in order, to

assure that they could make knowledgeable recommendations for PAC. Based on a

review of the literature and in order to obtain diversity in opinion, the investigator set a

goal of twenty-four experts to be participants in all three rounds. Participants were

selected using a purposeful sampling strategy (Patton, 2002). As described by Patton,

(2002), purposeful sampling is a concept that involves the selection of cases that are

"information-rich and illuminative, that is they offer useful manifestations of the









phenomenon of interest." (p. 40). Since the job of a life care planning expert is extremely

demanding, there was a concern of a possibility for a lower return rate of participant

responses. Therefore, this researcher selected 100 participants from whom to solicit

responses, in hopes of reaching the goal of obtaining responses from at least 24 experts.

Sampling Procedure

A web-based Delphi technique was used for the development of constructs and

items to be included within a PAC measure. The Delphi technique is a method of

soliciting and combining the opinions of group experts. This technique originated from

research at the RAND Corporation as a means for predicting the future policy

developments (Brown, Cochran, & Dalkey, 1969). The method involves a rapid and

efficient way to combine the knowledge and abilities of a diverse group of experts by

quantifying variables that are either intangible or vague (Linderman, 1981). The Delphi

Technique is essentially a series of questionnaires. The first questionnaire asks the

participants to respond to a series of open-ended questions; the second round

questionnaire consists of a series of closed-ended questions that are built upon the

responses to the first round of questioning. Successive questionnaires give participants

feedback on the collective responses of the group, providing the opportunity for subjects

to modify their responses. The ultimate goal of this technique is to achieve an overall

consensus or level of agreement for a specific inquiry (Williams et al., 1994). The

process builds on the qualitative responses of experts and measures the group's responses

quantitatively (McBride, Pates, Ramadan, & McGowan, 2003).

Key characteristics of the Delphi approach are: 1) anonymity of survey panel

members, 2) anonymity of responses, 3) multiple iterations, 4) statistical analysis of panel

response, and 5) controlled feedback of responses to panel members. This approach









prevents any one member of the panel from unduly influencing the responses of other

panel members. Through the statistical summaries and minority reports, panel members

communicate with each other in a limited, goal-centered manner. The systematic control

lends an air of objectivity to the outcome, which provides a sharing of responsibility that

is reassuring and releases the participants from group inhibition (Linderman, 1981). This

technique has been regularly used in medical and health services research (Herdman et

al., 2002) and is suitable for problems where there is insufficient or contradictory

scientific evidence.

The Delphi Study methodology offers a number of advantages to the study of PAC.

First, the method allows for the development of expert opinion without bias, which can

readily occur, in comparable techniques such as committee meetings or group

discussions. Such techniques can lead to panel members being intimidated or inhibited

from expressing their views due to stronger individuals dominating the group. As such,

the Delphi Method encourages honest opinion that is free from peer group pressure.

Additionally, panel members have the opportunity to have more time to think about the

issues being discussed with the added capability to retract, alter or add further views

(Williams et al., 1994). Finally, the Delphi approach ensures the ability to collect data

from a diverse panel in terms of geographic location, experience, gender, and education.

Delphi Procedure

This investigator developed a list of open-ended questions based on review of the

literature, standards of practice, and preliminary data from brainstorming with life care

planning experts in regards to significant issues to explore in developing a PAC

assessment for individuals with SCI. In addition, demographic questions were developed









to assess diversity in terms of gender, age, education and training, occupation, and

experience.

The next step involved applying the first round of questioning onto a web-based

format. The Quask Form Artist software program was used to develop online forms

that would be easily accessible to the participants. This web form design program

enables the user to collect and analyze data through a wide range of export and statistical

analysis functions (Quask, 2004). The rationale for using a web-based approach is to

expedite the data collection process and allow participants the convenience of completing

online forms as opposed to having to mail responses. The software program provided a

means for obtaining the data from participants immediately following the completion of

the survey. Furthermore, the program provided a means to easily track the response rate

of participants.

Once the initial round of questions was developed, the survey was alpha tested on

four expert life care planners affiliated with the University of Florida. These participants

were notified via email and were directed to the website location to participate in the

survey. The participants were asked to respond with comments and suggestions for

making the first round questionnaire more appropriate and comprehensible. This

investigator incorporated the recommendations from the alpha testing into the initial

round of questions to be sent to the 100 life care planning experts (Appendix A).

Delphi round 1

All 100 experts were contacted via email and a requested to participate in the

Delphi Study (Appendix B). As incentive for participation, the experts were informed

that they would receive five continuing education credits (CEU's) towards their life care

planning certification. This investigator obtained pre-approval to provide the CEU's









from the Commission on Health Care Certification. In addition, an endorsement letter

from Paul Deutsch, a leading expert who innovated the concept of life care planning, was

included with the initial email (Appendix B). The email directed the participants to the

website to complete Round 1. The website was located on the College of Public Health

and Health Professions secure server. Once the participant accessed the website, they

were required to review a page containing a waiver of documentation of consent which

explained their rights as a research subject (Appendix A). If the respondent selected

"yes", they indicated they understood their rights as a research subject and were directed

to the survey. If the respondent select "no", the web browser closed and the respondent

did not see the questionnaire. At the end of the survey, the respondents were instructed to

submit their responses along with their email address once the survey was completed. A

friendly reminder email was sent to the experts two weeks following initial contact

(Appendix C).

Delphi round 2

Once the data was received, it was analyzed for content using NVivo Qualitative

Software. NVivo is designed for researchers who need to combine subtle coding with

qualitative linking, shaping and modeling. The program works as a fine-detailed analyzer

by integrating the processes of interpretation and focused questioning. Rich text records

are freely edited and coded and linked with multimedia. The software enables researchers

to take qualitative inquiry beyond coding and retrieval, supporting fluid interpretation and

theory emergence (QSR International, 2002).

The software facilitated the retrieval of rich text records from the Quask Web

Software. Once the data was imported, this investigator coded all of the responses based

on emerging themes to be included for the second round questionnaire. Since the









purpose of this study was to generate items and constructs to be included on a PAC

measure, specific activities related to PAC services were coded and used to develop the

items for Round 2 of the Delphi Study. Round 2 of the Delphi Study consisted of closed

questions in which participants were asked to rate the importance of each item when

recommending PAC services in a LCP. Each item was to be rated on a Likert Scale

from 1 (strongly disagree) to 4 (strongly agree). Participants also had the option of

selecting "not sure" to an activity if they could not come up with an applicable rating.

Following the same methodology for Round 1, an email (Appendix D) was sent to

all the experts directing them to the website to complete Round 2 (Appendix E). At the

end of the survey, participants had an opportunity to respond with specific comments in

regards to Round 2. Additionally, the respondents were instructed to submit their

responses along with their email address once the survey was completed. Similar to

Round 1, a friendly reminder email was sent to the experts two weeks following initial

contact (Appendix F).

Once the Round 2 questionnaires were received, they were analyzed to determine

the consensus among all of the experts. Currently, there are no universally agreed upon

standards for establishing consensus (Fink, Kosekcoff, Chassin, & Brook, 1984).

However, Rowe & Wright (1999) reviewed empirical studies looking at the effectiveness

of the Delphi technique and indicated that typical Delphi studies involve consensus

techniques that include the presentation of medians and interquartile ranges. For each

item from Round 2, interquartile ranges were calculated as measures of dispersion and

median scores were calculated as measures of central tendency. The combination of these

indices was used to determine the degree of importance and consensus for each activity.









Medians rather than means were used in reporting back to the respondents in order to

diminish the effects of outliers (Currier, 2001). The median and interquartile range of

responses for each of the items were calculated using SPSS software (SPSS Inc., 2001).

Delphi round 3

Once the consensus data was calculated, these results were sent along with a third

questionnaire to the experts (Appendix G). The experts were presented with the same

activities listed in Round 1 along with their previous responses and consensus data. The

participants were then asked to review their previous responses along with the consensus

data and reconsider or revise their answer.

Following the same methodology for Rounds 1 and 2, an email (Appendix H) was

sent to all the experts directing them to the website to complete Round 3. At the end of

the survey, the respondents again had the opportunity to provide comments in regards to

the Round 3 and were instructed to submit their responses along with their email address

once the survey is completed. Similar to previous rounds, a friendly reminder email was

sent to the experts two weeks following initial contact (Appendix I).

Research Question 2

What are the critical constructs and items necessary to examine the need for PAC

services from the prospective of veterans with SCI?

Rationale for Interviewing Veterans with SCI

The rationale for interviewing veterans with SCI is that they are the individuals

experiencing the disability first hand, and it can be argued that no one better understands

the challenges they face. Additionally, not involving the population for which the PAC

assessment is to be utilized would appear to be a limitation in the development of such an

instrument.









Subjects

A convenience sample comprised of eight veterans with SCI, from the Malcolm

Randall Veterans Administration Medical Center in Gainesville, FL was used for this

study. Participants were selected using a purposeful sampling strategy (Patton, 2002) as

discussed earlier. This technique was chosen since it involves selecting a small sample of

information-rich cases that yield insights and in-depth understanding rather than

empirical generalizations. Patton (2002) discusses an example:

If the purpose of an evaluation is to increase effectiveness of a program in
reaching lower-socioeconomic groups, one may learn a great deal more by
studying in depth, a small number of carefully selected poor families than
by gathering standardized information from a large statistically
representative sample of the whole program p.230.

This researcher met with his committee members and determined that 8 veterans with

variable levels of SCI would be adequate enough to yield an in-depth understanding of

PAC.

Procedure

The purposeful sampling strategy follows an approach used in qualitative research.

Over the past ten years, qualitative methods have become more commonplace in health

services research (Mays & Pope, 2000). The goal of qualitative research is the

development of concepts which help researchers understand social phenomena in natural

(rather than experimental) settings, giving due emphasis to the meanings, experiences,

and views of all participants under study (Pope & Mays, 1995).

This investigator selected qualitative interviews as a method for fully

understanding the impact of PAC on individuals with SCI. Qualitative interviewing is a

flexible and powerful tool, which can assist the researcher in obtaining diverse opinions

of research participants (Britten, 1995). In order to facilitate this qualitative approach,









the standardized open-ended interview approach as described by Patton (2002) was

implemented. This type of interview consisted of a set of questions carefully worded and

arranged with the intention of taking each respondent through the same sequence and

asking each respondent the same questions with essentially the same words. The

technique involved the use of an interview guide (Appendix J) in order to ensure that the

same basic lines of inquiry were pursued with each person. The advantage of an

interview guide is that it makes certain that the interviewer has carefully decided how

best to use the limited time available in an interview situation (Patton, 2002).

Additionally the approach guarantees that the respondents answered the same questions,

thus increasing comparability of responses. These semi-structured interviews allow for

a divergence between the interviewer and interviewee in order to pursue an idea in more

detail (Britten, 1995). Additionally, this approach also facilitated collection,

organization, and analysis of the data (Patton, 2002).

All eight interviews were recorded using a digital voice recorder. Before the

interview took place, all participants were required to sign a consent form, which

acknowledged their rights as research subjects. At the completion of each interview, this

researcher digitally transferred the interview onto a CD-ROM. The CD-ROM was sent to

a transcriber, who provided the researcher with an electronic transcription of the

interview in rich text format. All eight interviews averaged around 45 minutes in length.

Data Analysis

Data analysis was conducting using NVivo Qualitative Software. As discussed

earlier, NVivo is intended for researchers who need to combine subtle coding with

qualitative linking, shaping and modeling. NVivo provides the researcher with a means

for handling qualitative data records and information about them, for browsing and









enriching text, coding it visually or at categories, and annotating and gaining access to

data records accurately and swiftly (QSR International, 2002). In order to answer the

current research question, this researcher browsed and coded the data based on specific

constructs and items to be included within an instrument that assess PAC for individuals

with SCI. Additionally, the qualitative data was further scrutinized to obtain a full

understanding of the PAC needs for individuals with SCI. Such information will

facilitate further development of the currently created PAC assessment, which will

included determining if the items generated by this study are truly representative of the

needs of individuals with SCI.

Coding

In order to extrapolate the information discussed above, coding techniques were

implemented. Coding in NVivo involves the creation of nodes based on the qualitative

documentation. Using coding techniques, this researcher converting the qualitative data

into a crudely quantifiable form as to answer the research question. This method led to

the coding of items to be included in a PAC assessment. Once all the data was coded, the

nodes were then analyzed. The analysis is aimed at constituting proof for a given

proposition, in this case the contribution of items towards a PAC assessment (Glaser &

Strauss 1967).

This researcher utilized the Constant Comparative Method to analyze the

qualitative data. According to Glaser & Strauss (1967), this approach combines specific

coding procedures with theory development. The author points out that this method can

lead to an attainment of complex theory that corresponds closely with the data since

constant comparisons force the analyst to consider much "diversity" in the data.

According to these authors "diversity" refers to the comparison of each incident with









other incidents in terms of similarities and differences. Making such comparisons helps

the researcher overcome bias since concepts can be compared amongst all the participants

(Corbin & Strauss, 1990).

Researcher Bias

There is a concern with qualitative research relating to the extent to which

predispositions or biases of the evaluator may affect data analysis and interpretations

(Patton, 2002). Often data from and about humans inevitably represent some degree of

perspective rather than absolute truth (Patton, 2002). To overcome this concern, this

researcher made every effort to maintain "reflexivity". According to Malterud (2001),

"reflexivity" refers to an attitude of attending systematically to the context of knowledge

construction especially to the effect of the researcher at every step of the research

process. The author states that once reflexivity is maintained, personal issues can be

valuable sources for relevant and specific research.

This researcher took many steps to attend systematically to the context of

knowledge construction at every stage of the research process, thus limiting researcher

bias. The first step of meeting this goal was to take applicable coursework in qualitative

methods from professors experienced in conducting qualitative research. Through this

coursework, this researcher developed the interview guide (appendix J) used for data

collection. The next step involved getting trained by a professional qualitative researcher

in the utilization of statistical software for analyzing qualitative data. This step was

crucial for not only providing an understanding of how to use software program, but for

facilitating the understanding of coding techniques commonly used in qualitative

research. The training professional was also available for consultation throughout the

research process. Next, this researcher frequently consulted with my committee









chairperson in regards to themes emerging from the data. This step allowed for continual

validation of my research findings. Finally, this researcher continuously recognizes his

personal bias that can influence this qualitative process. A personal bias statement is

discussed below.

Personal Bias Statement

I have been involved with people with disabilities my entire life and career.

Growing up with a brother with a developmental disability has definitely influenced my

desire to ensure that people with disabilities receive services necessary to live productive

lives as independently as possible. As a rehabilitation counselor, my work involves

assisting individuals in with disabilities in returning to work, obtaining public funding,

and adjusting to personal issues relative to their disabilities. Through my education and

career, I have been very familiar with barriers affecting people with disabilities from

participating in society as well as current and past disability legislation and policy. I

believe that personal assistance is an important service that can allow individuals with

disabilities to participate in society. Additionally, I support legislation that ensures

individuals with disabilities receive funding support for attendant care services. As such,

my personal bias may influence my interpretation of the qualitative data supporting the

receipt of more types of PAC for individuals with SCI.














CHAPTER 4
RESULTS

Introduction

This chapter reports the results of two methodologies used to determine the

necessary items to be included in a measure of PAC for individuals with SCI. The first

section includes the results of the Delphi Study involving expert Life Care Planners and

the second section is comprised of results of qualitative interviews with veterans with

SCI.

Delphi Study

Alpha Testing Round 1

Once the questionnaire for Round 1 of the Delphi Study was completed and placed

on the web server, four local expert Life Care Planners affiliated with the University of

Florida were requested to review the survey. A summary of the expert's comments and

actions taken by this researcher are included in Table 2 and discussed below.

The first comment regarded the level of SCI the experts should consider when

preparing to respond to the questions. There was a concern that if individuals were asked

to consider someone whose injury was at too high of a level such as C-l, C-2 or C-3,

experts would simply state that the individual needs 24-hour PAC and not carefully

consider the necessity of each individual service. This level of lesion is often associated

with the need for total assistance in activities relating to ADL's, domestic activities,

transportation, respiration, and mobility (Consortium for Spinal Cord Medicine, 1999;

Authority, 2002). In order to ensure that participants in the Delphi Study responded to









the specific activities requiring PAC, participants were asked consider individuals with

level C-4 or below, complete or incomplete spinal cord injuries.

The next comment referred to providing a clear definition of personal assistance

and replacement services. Life care planning Experts are required to examine

individual's activities performed prior to their time of injury. This process makes certain

that proposed recommendations include assistance with activities that were performed

independently prior to the injury. Such recommendations are often referred as

replacement services. Since replacement services play a major role in the decision

process of Life Care Planners when making PAC recommendations, the following

definition of such services was provided:

PersonalAssistance is defined as services to assist with maintaining
personal hygiene, general health services, personal appearance, activities
of daily living, general comfort in life environment, safety, and
interactions with the community and society that are related to
requirements imposed by the disability. Replacement Services are defined
as essential services needed post onset of disability that represent
responsibilities and services related to household activity, yard and
property maintenance, and home/auto maintenance that were performed
independently prior to the disability

The next comment referred to informing the experts of the number of questions

they will be required to complete in order to finish Round 1 of the Delphi. The experts

felt that having such knowledge would reduce the chance that participants would not

complete the entire survey. As such, the instruction page included a statement regarding

the number of questions to be completed and each question was titled with the question

number along with the total number of questions (e.g. Question 1 of 11, 2 of 11, etc...).

The subsequent comment involved the need to provide examples for each of the

questions in order to guarantee that the experts have a clear understanding of how they









are expected to respond. There was a concern that the experts would not be specific

when responding, which would inhibit the generation of items to be included on a PAC

assessment. As such, questions regarding housekeeping, activities of daily living,

home/yard maintenance, transportation, work, education, and leisure activities included

one or more examples. For example when participants were asked to list all specific

housekeeping activities they consider when recommending services in a Life Care Plan,

examples of washing dishes and vacuuming were included.

One of the experts indicated he had a difficult time reading the questions due to the

fact that a blue background with white fonts were used in creating web survey. In order

to rectify the issue, all the background colors were changed to gray and white and the

font colors were changed to black.

Another issue that resulted from the alpha test related to participants having to be

repetitive in their responses. This resulted in the experts responding with text such as

"see previous question." This issue directly related to questions regarding how the

experts determine the need for PAC services for all activities that they report. Most of

the experts stated that very often refer to the personal interview, physician

recommendations, and therapist evaluations/recommendations for all types of PAC. As

such, they were frustrated with having to keep repeating the same response for each

questions relating to the topic of determining PAC need. The action taken to remedy this

problem included providing one question, which stated the following:









In determining the need for personal assistance or replacement services for
all the activities you previously listed, most Life Care Planners refer to the
personal interview, physician recommendations, and therapist
evaluations/recommendations. Are there any additional sources you use to
determine the need for personal assistance or replacement services for the
following types of activities?

The final comment referred to the use of assistive devices to make up for the need

for PAC. Some of the experts indicated that they would not recommend PAC services if

there was the availability of assistive devices. For example, an individual that may need

personal assistance in transferring may be able to acquire a hoyer lift. Such a device can

allow an individual with a SCI to transfer independently. As a result, the individual may

not require personal assistance for transferring activities. This researcher was concerned

that not all individuals have accessibility to such devices and may still require personal

assistance. To curtail professionals from limiting recommendations based on assistive

devices, the following statement was included:

We realize the importance of assistive devices/technology in regards to
personal assistance. However, when asked to specify activities that
constitute ADL's or replacement services, please list possible activities
without regard to the availability of assistive devices/technology.










Table 2. Comments and Actions from Alpha Testing of Round 1



Comment Action Taken


Provide a specific level of Spinal Cord
Injury as an example that would require an
individual to require a significant amount
of personal assistance

Provide a clear definition of personal
assistance and replacement services.


Specify the number of questions so that the
participant can monitor his/her progress.



Provide examples associated with the
questions relating to generating items.




Change the font and background colors to
make it easier to read for older Life Care
Planners with visual limitations

Condense questions regarding sources used
to make PAC recommendations for each
construct to reduce need to repeat
responses throughout the survey

Difficult to consider PAC without
acknowledging the availability of Assistive
Devices for replacement services and
ADL's.


Included a statement on the instruction
page requesting information in regards to
an individual with a C-4 and below
incomplete or complete SCI.

Personal Assistance and Replacement
Services were clearly defined in the
instruction page.

The instruction page included a statement
informing the participants the number of
questions they will be asked to respond
to.

Questions regarding housekeeping,
activities of daily living, home/yard
maintenance, transportation, work,
education, and leisure activities included
one or more examples.

All colors were removed from the survey
and only gray, black, and white colors
were used.

All questions regarding sources used to
make PAC recommendations were
incorporated into one page with
examples.

Participants were asked to specify
activities that constitute ADL's or
replacement services, without regard to
the availability of assistive
devices/technology.









Panel Demographics

Of the 100 expert Life Care Planners solicited for this study, 31 participated in

Round 1. Participant experience ranged from 3 to 29 years. Participant age ranged from

36 to 65 years. Additional information describing these participants is listed in Table 3.

There was a higher representation of females (87.1%) than males (12.9%) in the sample.

This gender proportion is consistent with the high proportion of females to males among

Life Care Planners in general. Next, there were diverse responses to the question

regarding the highest level of education attained. One (3.2%) participant indicated the

highest degree as being a High School Diploma. Five (16.1%) indicated that the

Bachelor's degree was the highest degree earned. Sixteen (51.6%) reported their highest

degree as a Master's Degree. Two (6.5%) individuals held Doctoral degrees. One (3.2%)

individual reported his/her highest degree earned as a technical degree. Finally, six

(19.4%) of the participants selected 'other' when choosing the highest educational degree

earned. It should be noted that one of the individuals who responded with 'other', also

indicated he/she had obtained a Bachelor's degree. In addition to education, the

participants provided a plethora of credentials, which are described in Table 4. As

indicated in Table 4, there are many certifications associated with Professional Life Care

Planners. It is often the case that Life Care Planners hold numerous certifications. This

sample included 29 (93.6%) individuals who currently have the Certified life care

planning (CLCP) credential. Also, a large portion of the participants (84%) held at least

one type of nursing credential. Nine (29%) of the participants reported being a Certified

Rehabilitation Counselor (CRC), while 19 (61.3%) reported being Certified Case

Managers (CCM)'s.









Table 3. Panel Demographics



Factor Frequency Percentage


Gender
Males 4 12.9
Females 27 87.1

Education Level
Bachelor's Degree 5 16.1
Master's Degree 16 51.6
Doctoral Degree 2 6.5
Technical 1 3.2
High School 1 3.2
Other *6 19.4

One individual responded to having a bachelor's degree and a degree designated as
'other'

Table 4. Panel Credentials



Percentage
Credential Name Abbreviation Count Percentage


Certified Rehabilitation Counselor CRC 9 29
Certified Case Manager CCM 19 61.3
Certified Life Care Planner CLCP 29 93.6
Certified Rehabilitation Registered Nurse CRRN 7 22.6
Certified Disability Management Specialist CDMS 9 29
Certified Vocational Evaluator CVE 1 3.2
Licensed Professional Counselor LPC 3 9.7
Registered Nurse RN 17 54.8
Speech Language Pathologist SLP 2 6.5
Occupational Therapist OT 1 3.2
Certified Legal Nurse Consultant CLNC 2 6.5
Other Credential Not Specified Other 13 41.2










Delphi Round 1

Experts responded to Round 1 of the Delphi with 198 activities to consider when

making PAC recommendations for individuals with SCI. The activities are listed in

Table 5. These activities were based on responses from questions regarding PAC for

ADL's, housekeeping, home/yard maintenance, transportation, leisure activities and

work/education.

Table 5. Delphi Study Results

Round 2 Round 3
(N=25) (N=25)
Med.
Activity Med. IQR Med. IQR Med


Bowel/Bladder Mgmt. 4.00 4.00 4.00 4.00 4.00 4.00 0
Cooking 4.00 3.00 4.00 4.00 3.00 4.00 0
Communication Activities 4.00 3.00 4.00 4.00 3.00 4.00 0
Laundry 4.00 3.00 4.00 4.00 3.00 4.00 0
Dressing 4.00 4.00 4.00 4.00 4.00 4.00 0
Grooming 4.00 4.00 4.00 4.00 4.00 4.00 0
Drinking 4.00 4.00 4.00 4.00 4.00 4.00 0
Eating 4.00 4.00 4.00 4.00 4.00 4.00 0
Endurance Activities 4.00 3.00 4.00 4.00 3.00 4.00 0
Health Management 4.00 4.00 4.00 4.00 4.00 4.00 0
Hygiene 4.00 4.00 4.00 4.00 4.00 4.00 0
ADL's 4.00 4.00 4.00 4.00 4.00 4.00 0
Judgment/Decision Making 4.00 3.00 4.00 4.00 3.00 4.00 0
Managing Medication 4.00 3.00 4.00 4.00 3.00 4.00 0
Mobility 4.00 4.00 4.00 4.00 4.00 4.00 0
Maintain environ, controls 4.00 3.00 4.00 4.00 3.00 4.00 0
Orthotics Management 4.00 3.00 4.00 4.00 3.00 4.00 0
Lifting activities 4.00 3.00 4.00 4.00 3.00 4.00 0
Safety 4.00 4.00 4.00 4.00 4.00 4.00 0
Self-Care 4.00 3.00 4.00 4.00 3.00 4.00 0
Adaptations setup 4.00 3.00 4.00 4.00 3.00 4.00 0
Stair Climbing 4.00 3.00 4.00 4.00 3.00 4.00 0
Teeth Brushing 4.00 3.50 4.00 4.00 4.00 4.00 0
Telephone Use 4.00 3.00 4.00 4.00 3.00 4.00 0
Toileting 4.00 4.00 4.00 4.00 4.00 4.00 0











Table 5. (cont)
Round 2 Round 3
(N=25) (N=25)
Med.
Activity Med. IQR Med. IQR A

Transferring 4.00 4.00 4.00 4.00 4.00 4.00 0
Washing 4.00 4.00 4.00 4.00 3.50 4.00 0
Fine motor movement 4.00 3.00 4.00 4.00 3.00 4.00 0
Emergency egress 4.00 3.00 4.00 4.00 3.50 4.00 0
Muscle strengthening 4.00 3.00 4.00 4.00 3.00 4.00 0
Shopping 3.50 3.00 4.00 4.00 3.00 4.00 +.50
Shopping (transport.) 4.00 3.00 4.00 4.00 3.00 4.00 0
MD/Therapy appts. (transport.) 4.00 3.25 4.00 4.00 3.00 4.00 0
Pharmacy (transport.) 4.00 3.00 4.00 4.00 3.00 4.00 0
Professional activities (transport.) 4.00 3.00 4.00 4.00 3.00 4.00 0
School (transport.) 4.00 3.00 4.00 4.00 3.00 4.00 0
Clean up after meals 3.00 3.00 3.50 3.00 3.00 3.00 0
Clean crown molding 3.00 2.00 3.00 3.00 2.00 3.00 0
Clean dishes 3.00 3.00 4.00 3.00 3.00 3.00 0
Clean drapes/curtains 3.00 2.00 3.00 3.00 3.00 3.00 0
Clean closets 3.00 2.00 3.00 3.00 3.00 3.00 0
Clear cobwebs 3.00 2.00 3.00 3.00 3.00 3.00 0
Clean garage 2.50 2.00 3.00 3.00 2.00 3.00 +.50
Dusting 3.00 3.00 3.00 3.00 3.00 3.00 0
Clean roof gutters 3.00 2.00 3.00 3.00 2.00 3.00 0
Cleaning light fixtures 3.00 2.00 3.00 3.00 2.00 3.00 0
Grocery management 4.00 3.00 4.00 3.00 3.00 4.00 -1.00
Handling paperwork 3.00 3.00 4.00 3.00 3.00 3.00 0
Clean A/C vents 3.00 2.00 3.00 3.00 2.50 3.00 0
Spring/Fall cleaning 3.00 3.00 4.00 3.00 3.00 3.00 0
Ironing 3.00 2.25 3.00 3.00 2.25 3.00 0
Computer Activities 3.00 3.00 3.00 3.00 3.00 4.00 0
Personal Business 3.00 3.00 3.00 3.00 3.00 3.00 0
Maintain storage area 3.00 2.00 3.00 3.00 2.00 3.00 0
Maintain clothing 3.00 3.00 4.00 3.00 3.00 4.00 0
Retrieve/Open/Read Mail 3.00 3.00 3.00 3.00 3.00 3.50 0
Maintain alarm system 3.00 3.00 4.00 3.00 3.00 4.00 0
Making Beds 3.00 3.00 4.00 3.00 3.00 4.00 0
Managing daily schedule 3.00 3.00 4.00 3.00 3.00 4.00 0
Managing household finances 3.00 3.00 4.00 3.00 3.00 4.00 0
Mopping floors 3.00 3.00 4.00 3.00 3.00 3.00 0
Rearranging environment 3.00 2.00 3.00 3.00 2.00 3.00 0
Open/Close windows 3.00 2.25 4.00 3.00 2.00 3.00 0
Organizing Kitchen 3.00 2.00 3.50 3.00 2.00 3.00 0
Pet-Care 3.00 2.00 3.00 3.00 2.50 3.00 0
Furnace/AC Maintenance 3.00 2.00 3.00 3.00 2.00 3.00 0
Sweeping with a broom 3.00 3.00 4.00 3.00 3.00 3.00 0
Childcare 4.00 3.00 4.00 3.00 3.00 4.00 -1.00










Table 5. (cont)
Round 2 Round 3
(N=25) (N=25)

Activity Med. IQR Med. IQR Med.
A


Turning over mattress
Using a dishwasher
Vacuuming
Washing walls
Washing windows
Taking out the garbage
Garden management
Filling gas tank
Disposing of debris
Lawn mowing
Leaf blowing
Changing light bulbs
Outdoor repairs
Snow management
Restore power outages
Using a string trimmer
Raking
Watering garden/grass
Volunteer (transport.)
Theater (transport.)
Social outings (transport.)
Carrying work/school supplies
Test taking
Taking a break at work/school
Typing reports
Tutoring
Dictate reports/letters/notes/etc.
Entering/Exit work/school
Getting on/off elevators
Escort at work/between classes
Fax/Copy/Sort/File activities
Work/School related lifting
Job coaching
Note taking
Parking
Using portable ramps
Work/School preparation
Computer/Tech assistance
Transcribing
Admin./Registration Issues
Library usage
Homework
Manage work/school activities


3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.00
3.50
3.00
3.00
3.00
3.00
3.00
3.00
3.00


2.00 3.00
3.00 3.00
3.00 4.00
2.00 3.00
2.00 3.00
3.00 4.00
2.00 3.00
3.00 3.00
2.00 3.00
3.00 3.00
2.00 3.00
3.00 3.00
2.00 3.00
3.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
3.00 4.00
3.00 3.00
3.00 4.00
3.00 3.50
2.75 4.00
2.00 3.00
2.75 3.00
2.00 3.00
3.00 3.25
3.00 4.00
3.00 4.00
3.00 4.00
3.00 3.00
3.00 4.00
2.75 4.00
3.00 4.00
3.00 4.00
3.00 4.00
3.00 4.00
3.00 4.00
3.00 3.00
2.75 4.00
3.00 4.00
3.00 4.00
3.00 4.00


3.00 2.00 3.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 2.25 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 2.00 3.75
3.00 2.00 3.00
3.00 2.00 3.00
3.00 2.00 3.00
3.00 3.00 3.75
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 3.75
3.00 3.00 3.50
3.00 3.00 4.00
3.00 3.00 3.00










Table 5. (cont)
Round 2 Round 3
(N=25) (N=25)

Med.
Activity Med. IQR Med. IQR A


Organizing school projects
Reading
Setup school supplies
Recording lectures
Obtain work/school supplies
Sport activities
Adapted P.E.
Therapeutic horseback
Annual recreation camps
Adapted skiing
Adapted aquatics
Camping
Church/Comm. activities
Wheelchair rec. programs
Cycling activities
Emotional well-being activities
Exercise/Gym activities
Fishing
Hobbies
Hunting
Internet Access/email
Kayaking
Watching movies
Outward bound
Pre-injury activities
Spontaneous events (transport.)
Clean baseboards
Social recreation
Volunteering
Support groups
Clean blinds
Running errands
Sporting Events (transport.)
Recreation (transport.)
Bank (transport.)
Church/Comm. (transport.)
Dry Cleaning (transport.)
Driving children to school
Video store (transport.)
Clean cabinets
Getting a haircut
Social Cognition


3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.25
3.00 3.00 3.75
3.00 3.00 3.75
3.00 3.00 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 3.00 3.75
3.00 2.00 3.00
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.75
3.00 3.00 3.75
3.00 3.00 3.00
3.50 3.00 4.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 3.00 4.00
2.00 2.00 3.00
3.00 3.00 4.00
2.00 2.00 3.00
3.00 2.00 3.00
3.00 2.00 3.00
3.00 3.00 4.00
3.00 3.00 3.50
3.00 2.00 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.50 3.00 4.00
3.00 2.00 3.00
4.00 3.00 4.00
3.00 3.00 3.25
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 3.25
3.00 3.00 3.75
3.00 2.00 3.00
3.00 2.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00


3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.75
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 3.00 3.75
3.00 2.00 3.00
3.00 3.00 4.00
3.00 2.00 3.00
3.00 2.00 3.00
3.00 2.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 4.00
3.00 3.00 3.75
3.00 3.00 3.00
3.00 2.00 3.00
3.00 3.00 3.00
3.00 3.00 4.00
3.00 3.00 4.00


0
0
0
0
0
0
0
0
0
0
0

0
0
0
0
0
0
0
+1.0
0
0
0
0
0
0
0
0
0
-.50
0
0
0
0
0
0
0
0
0
0
0
0







72


Table 5. (cont)
Round 2 Round 3
(N=25) (N=25)

Activity Med. IQR Med. IQR Med. A

Getting take out food 3.00 2.75 3.00 3.00 3.00 3.00 0
Hardware store (transport.) 3.00 3.00 3.00 3.00 3.00 3.00 0
Clean bathtubs 3.00 3.00 3.75 3.00 3.00 3.00 0
Library (transport.) 3.00 2.75 3.25 3.00 3.00 3.00 0
Movies (transport.) 3.00 2.75 3.00 3.00 3.00 3.00 0
Pay bills (transport.) 3.00 3.00 4.00 3.00 3.00 3.00 0
Clean refrigerator 3.00 3.00 3.00 3.00 3.00 3.00 0
Post office (transport.) 3.00 3.00 4.00 3.00 3.00 4.00 0
Clean oven 3.00 2.25 3.00 3.00 3.00 3.00 0
Restaurants (transport.) 3.00 3.00 3.00 3.00 3.00 3.00 0
RV-ing 3.00 2.00 3.00 2.50 2.00 3.00 -.50
Check tire pressure 2.50 2.00 3.00 2.50 2.00 3.00 0
Waxing furniture 3.00 2.00 3.00 2.50 2.00 3.00 -.50
Using a screwdriver 3.00 2.00 3.00 2.50 2.00 3.00 -.50
Seasonal fertilizer 2.00 2.00 3.00 2.00 2.00 3.00 0
Climbing ladders 2.00 2.00 3.00 2.00 2.00 3.00 0
Hammering 2.00 2.00 3.00 2.00 2.00 3.00 0
Hanging pictures 2.00 2.00 3.00 2.00 2.00 3.00 0
Home decorating 2.00 2.00 3.00 2.00 2.00 3.00 0
Landscaping 2.00 2.00 3.00 2.00 2.00 3.00 0
Washing car 2.50 2.00 3.00 2.00 2.00 3.00 -.50
Baling hay 2.00 1.00 2.00 2.00 2.00 2.00 0
Carpentry repairs 3.00 2.00 3.00 2.00 2.00 3.00 -1.00
Bush hogging 2.00 1.00 3.00 2.00 2.00 2.00 0
Dead-heading 2.00 1.00 3.00 2.00 2.00 3.00 0
Edging 2.00 2.00 3.00 2.00 2.00 3.00 0
Electrical work 2.00 1.75 3.00 2.00 2.00 3.00 0
Cutting firewood 2.00 1.00 3.00 2.00 2.00 3.00 0
Start fire in fireplace 2.00 1.00 3.00 2.00 1.25 3.00 0
Fixing squeaky doors 2.00 2.00 3.00 2.00 2.00 3.00 0
Woodworking 2.00 2.00 3.00 2.00 2.00 2.50 0
Putting down mulch 2.00 1.50 3.00 2.00 2.00 3.00 0
Changing oil 2.00 2.00 3.00 2.00 2.00 3.00 0
Shrub maintenance 2.00 2.00 3.00 2.00 2.00 3.00 0
Painting 2.50 2.00 3.00 2.00 2.00 3.00 -.50
Plumbing 2.50 2.00 3.00 2.00 2.00 3.00 -.50
Pool maintenance 2.00 2.00 3.00 2.00 2.00 3.00 0
Spa maintenance 2.00 2.00 3.00 2.00 2.00 3.00 0
Pruning 2.00 2.00 3.00 2.00 2.00 3.00 0
Putting up fixtures 2.00 2.00 3.00 2.00 2.00 3.00 0
Maintain sprinkler system 2.00 2.00 3.00 2.00 2.00 3.00 0
Remodeling 2.00 2.00 3.00 2.00 2.00 3.00 0
Roof repair 2.00 1.25 3.00 2.00 2.00 3.00 0
Trim work 2.00 2.00 3.00 2.00 2.00 3.00 0











Questions Not Included In Subsequent Rounds

Due to the concern regarding participant attrition, questions not related to specific

activities to consider when recommending PAC were not included in subsequent rounds

(round 2 and round 3). Responses to these are listed in Table 6 and discussed below:

Categories used to organize PAC in a Life Care Plan: The experts responded to this

question with a breakdown of how they designate PAC recommendations in a LCP. The

categories used to depict PAC often help the individual reviewing a LCP to understand

the basis for the recommendations.

Objective assessments to determine the need for Personal Assistance in a Life Care Plan:

As evidenced by Table 5, Life Care Planners rely on numerous assessments to determine

PAC. While some Life Care Planners rely on ADL assessments such as the FIM, other

experts utilize the client interview in determining PAC need.

Sources used to determine the need for personal assistance or replacement services:

Sources used for determining PAC need were summarized for all activities including:

ADL's, home/yard maintenance, transportation, work/education, and leisure activities.

Clearly, Life Care Planners explore many sources of information that will help them

make recommendations for PAC. These sources range from collaborating with church

and community members to reviewing neuropsychological evaluations.

Associating need with the number of hours for each type of service: The purpose of this

question was to identify methods by which Life Care Planners associate the need for PAC

with the number of hours to perform the recommended services. As evidenced by Table

6., there does not appear to be an objective method for associating time to perform a

service with need for such as service. It appears that experts are utilizing qualitative










techniques to answer this question. The main themes that emerged from this question

included: client interviews, observation, and extensive consultations.




Table 6. Questions Not Included In Subsequent Rounds


Question


Responses


Under what categories do you
organize the parts of your Life Care
Plan that address types of personal
assistance and replacement services?


What objective assessments do you
use to help you determine the need
for Personal Assistance in a Life
Care Plan?




Sources you use to determine the
need for personal assistance or
replacement services.


Home Care, Nursing Care, Personal Care Assistance,
Aide Level Services, Aids for Independent Living,
Assistive Living Care, Attendant Care Services,
Facility Care, Household/Home Maintenance,
Replacement Services.

ADL assessments, Family/Caregiver interview,
Assessments/Evaluations of the Treatment Team,
CHART, Client Interview, Clinical Practice
Guidelines, Discharge evaluation, FAM, FCE, FIM.
Foundational functional reports, Home Assessment,
Independent Medical Evaluation, LCP Training
Material

Church and community members, Client real-life
situation, Family, Friends, Internet searches, Leisure
check list, Leisure Evaluation, Medical Records,
Medical literature, Nature of disease course, Research,
School records, College Office of Disabilities,
Educational Evaluation, Employment Literature,
family, historical goals, IEP, Institutional/academic
advisor/counselor, Observe classes, Parents education
level, Personal observation, Neuropsychological
evaluations, School Records/Academic performance,
Services provided by school district, Spinal Cord Injury
Resource Center, State and Federal regulations,
Teacher's recommendations, Therapists, Vocational
Evaluation, Work History, Employer, Employment
Research Guidelines, Historical needs, Job Coach,
AAA, Adult day programs, Community agency
programs, Driving Evaluation, expert in field of
van/auto modification, Realtors Association statistics










Table 6. (cont)


How the experts associate need with
the number of hours for each type of
service?


Client interview, Clinical outcomes guidelines,
Collaboration with treatment professionals, Common
sense, Configure hours towards needed service,
Consider time to perform activities, Agency stipulation,
Personal experience as a Life Care Planner, Consult
with employers, Follow-up evaluations Friends,
Known demands of the activity, Level of care required,
Literature, Needs assessment, Peer consultation,
physical capacities evaluation, Physician
documentation, Professional training, research,
Suggestions of care givers, Triangulation of
observation, Allow the client to function as he did prior
to injury, enough care to allow for some spontaneity
and some ability to conform to other people's
schedules.


Delphi Round 2

For the second round of the Delphi, 25 of the original 31 participants responded

with their level of agreement to whether each of the 198 items listed in Table 5 should be

considered when making PAC recommendations for individuals with SCI. The median

(Med) and interquartile ranges (IQR) were calculated for each item and reported in Table

5. The interquartile range is the distance between the first and third quartiles (middle

50%) of the responses in a distribution. These results correspond to the following Likert

scale used to measure the agreement for each item: strongly disagree, 2=disagree,

3=agree, and 4= strongly agree.

There was an initial high level of consensus after the second round of the Delphi

study. This was evident due to the fact that after Round 2, 173 of the items had an


Question


Responses









interquartile range of 1 or less. In other words, 87 percent of the activities demonstrated

a low variability in level of agreement of responses from the participants.

Delphi Round 3

For the third round of the Delphi, 25 participants had the opportunity to

reconsider their level of agreement to whether each of the 198 items listed in Table 5

should be considered when making PAC recommendations for individuals with SCI. The

activities are listed in order of consensus relating to the strongest agreement (indicated by

the number 4) with the activities, and ending with items representing a disagreement

(indicated by 2) to whether the activities should be considered when making PAC

recommendations.

As with the previous round, median and interquartile ranges were reported as well

as the change (Med. A) in Round 2 and Round 3 medians. Overall, 15 items resulted in a

change in median from Round 2 to Round 3. Of the 198 total items, 183 (92%) resulted

in no median change from Round 2 to Round 3.

The results of the Delphi revealed an even greater consensus had been achieved

among an even larger number of items as compared to Round 2. Evidence of this

increase in consensus was seen in the greater convergence of the interquartile ranges.

Specifically, Round 3 resulted in 196 items having an interquartile range of 1 or less.

Therefore, the number of items having a low variability in level of agreement increased

to 99 percent.

Additionally, at the conclusion of Round 3, there was a total of 34 items (17%) that

resulted in a final Median score below 3 (agree). These items are listed in Table 7.

Among these items, there were 3 activities (waxing furniture, carpentry repairs, and

using a furniture) that had median values of 3 (agree) in Round 2. These items appear to










be directly to home maintenance type activities. Further discussion regarding these

activities is included in the next chapter.




Table 7. Items with a Median below 3.

Round 2 Round 3
(N=25) (N=25)

Activity Med. IQR Med. IQR Med. A


Waxing furniture
Using a screwdriver
Check tire pressure
RV-ing
Carpentry repairs
Bush hogging
Dead-heading
Edging
Electrical work
Cutting firewood
Fixing squeaky doors
Climbing ladders
Hammering
Hanging pictures
Home decorating
Landscaping
Putting down mulch
Changing oil
Painting
Plumbing
Pool maintenance
Pruning
Putting up fixtures
Remodeling
Roof repair
Start fire in fireplace
Seasonal fertilizer
Shrub maintenance
Spa maintenance
Maintain auto sprinkler system
Woodworking
Trim work
Washing car
Baling hay


3.00
3.00
2.50
3.00
3.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.50
2.50
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.50
2.00


2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
1.00 3.00
1.00 3.00
2.00 3.00
1.75 3.00
1.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
1.50 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
1.25 3.00
1.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
2.00 3.00
1.00 2.00


2.50
2.50
2.50
2.50
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00


2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00
1.25
2.00
2.00
2.00
2.00
2.00
2.00
2.00
2.00


- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 2.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 3.00
- 2.50
- 3.00
- 3.00
- 2.00


-.50
-.50
0
-.50
-1.00
0
0
0
0
0
0
0
0
0
0
0
0
0
-.50
-.50
0
0
0
0
0
0
0
0
0
0
0
0
-.50
0












Interviews with Veterans with SCI

Participant Demographics

Eight interviews were conducted with veterans who had sustained spinal cord

injuries. Demographic information is described in Table 8. All eight interviews were

male and the age of the participants ranged from 50 to 75 years. The participants

reported having various levels of SCI with the lowest level being L-5 and the highest

level at C-3/C-4. Only one of the eight veterans with SCI stated that they had a complete

SCI. Years since the time of injury ranged from 2 to 38 years.



Table 8. Participant Demographics


Participant Gender Age Level of Injury


Complete
or
Incomplete


V1 M
V2 M
V3 M
V4 M
V5 M
V6 M
V7 M
V8 M

* Denotes missing data


T-5/T-6
C-6
T-4
C-4/C-5
C-5/C-6
L-5
C-3/C-4
T-12/L-1/L-2/S-2


Years
Since
Injury


Complete
Incomplete
Incomplete
Incomplete
Incomplete
Incomplete
Incomplete
Incomplete









Specific Activities Coded

The first part of the qualitative analysis of the interviews involved coding the data

to identify specific types of activities for which the participants required PAC. The

coding resulted in 63 activities that are listed in Table 9. All 63 activities are related to

PAC for hygiene, household chores and maintenance, and hobbies and leisure activities.

The participants reported needing assistance with these activities currently or in the past.


Table 9. PAC Activities Reported From Veterans

Bowel care Electrical work
Catheterization Grocery shopping
Applying creams/salves/lotions* Mowing Grass
Dental hygiene* Edging
Dressing Washing house*
Ears cleaned* Washing the car
Administering eye drops* Heavy lifting
Eating Pool maintenance
Getting into the bath to shower* Tilling the yard*
Combing/brushing hair* Planting*
Nails trimmed* Sweeping floors
Nose cleaned out* Vacuuming
Caring for pressure wounds* Baking*
Shaving* Taking out garbage
Putting on support hose* Cutting tree limbs*
Transfers Raking
Washing Carpet cleaning*
Wound dressing* Cleaning ceiling fans*
Laundry High work*
Transportation Range of motion exercises*
Table tennis* Mechanical Activities
Activities requiring reaching high* Getting on/off a motorcycle*
Carpentry Getting wheelchair onto the grass*
Computer activities Going to Church
Farming Activities*
Bailing hay
Gardening
Feeding the dog

Denotes activities that were different than those identified by the Delphi
Participants









Upon initial examination of the activities reported by veterans with SCI, 27 out of 63

items were different than the activities reported by the Delphi participants. These

activities specifically related to self-care and home maintenance activities (Table 9).

Emerging PAC Themes

While participants considered their responses to questions relating to specific

activities that they require PAC, other themes materialized that appeared to have had a

major impact on there need for such services. Specifically, the following topics emerged

and are discussed below: effect of mental state, independence, PAC services in place,

scheduling, PAC during hospital stays, trustworthiness, and spousal care.

Effect of mental state

A few of the participants discussed the importance of understanding an individual

with SCI's mental status when assessing PAC. The veterans indicated that individuals

with SCI can be depressed immediately following their injury and it inhibits them from

figuring out what they want to do with their lives. As such, these inhibitions would make

it difficult to understand one's total PAC needs. In the following example, VM2

discusses the stress and acceptance of a spinal cord injury in relation to getting on with

one's life. The participant refers to Tampa, which is the location of a Veterans Health

Administration Rehabilitation Facility for veterans with SCI.

In Tampa I see a lot of people get caught up in the now. You know, they
stay stressed out. Some of them never come out of it. You have to think
about what is going to happen and just find things you like doing and try
to stick to that until you come out of that and stay there and then you enjoy
yourselves. It doesn't happen if you don't change. You would be
surprised how many people stay stuck in their own, but that didn't happen
to me. When they say that, I know when you get sad, like that, it is hard to
get out of it. When I woke up from my injury...when I woke up here
rather, I knew something bad had happened. So I dealt with it from day
one. I never came into denial.









VM5 discusses the relationship between mental state and personal assistance.

You know I am not going to tell you I am not down some times but in
terms of the help that I received, assistance, family and friends and
community, I guess, my needing to be more independent, it has worked
well for me. Certainly I feel sorry for myself every once in a while, all of
us do once in awhile, why me, why did this happen to me, I have more
things I want to do. It is a challenge that I have faced and it has given me
some new insight.

The consensus among the participants seems to be that an individual's mental

status relates to the struggle of not being able to be independent and having to rely on

others to provide services such as PAC. VM8 discusses his personal experiences with

others with SCI and their struggle with independence issues.

The earlier and the sooner you can get a guy to depend on himself, and get
into that, depending on himself, rather than depending on somebody else,
the better. You don't want to push, to a breaking point but then again, you
don't want to keep waiting on them... Then the less that they dwell on oh,
poor me...Why wasn't it somebody else or what did I do God? It keeps the
mind off yourself... Focus on what they can do and what they can improve
on rather than telling them, well, you can't do this and you can't do that.
Because when I first went in they said, you are not going to walk, you will
have no bowel and bladder control, forget your sex life. All that is
bullshit. I told them they were full of it. Of course, that is me. That is the
type of person that I am. I was six years in the Marine Corps. and I have
been riding Harley Davidsons with a club for 50 years. I started building
and riding Harleys when I was 13. My dad rode and my two uncles rode
and I built my first one and I started building my first Harley when I was
13. But it was the way I was brought up. You don't depend on other
people. You do your own thing but you do not be stubborn about it.
There are things that I cannot do. But, I always have access to someone
that can do it for me. You can't get these guys to just sit around all day. I
spent 13 months the first time in the hospital but when I started getting
around, and these young kids would be there, oh, boo hoo this and that, I
would follow them up in their beds because they would get up and I would
push all the buttons and make them get out of bed...I would fold the bed in
on them and they would get mad at me. But I would get them out of the
bed. I would say, I want to show you something. I would take them down
to the weight room... Get them started. If they pursue it they do. If they
don't, hey, I gave it a shot. In some way it was rehab for me. Helping the
other guys.









Based on the personal reports, the veterans with SCI often reported difficulty

working through their emotional struggle with adjusting to their injury.

Independence

The struggle for independence was a general theme among some of the

participants. The veterans participating in this study expressed the importance of staying

as independent as possible but at the same time, were aware of certain situations when an

individual may need the help of others. VM3 discusses this issue:

When I got injured I was 30 something. I did not know I was going to
need this much assistance. Then I was told about having a caregiver, even
though I was strictly taught through rehab to be independent. I stay
independent as much as I can possibly. But always look ahead at the fact
that you are going to have some bad days and you need someone there.
There is no being totally independent. Get that out of your mind. You
may feel that you are totally independent but you must have someone, a
back up. Someone you can call on, a friend, or a neighbor, though you are
independent, that you can call on and get help. Because rescue may not be
fast enough.

As pointed out by this participant, even though an individual may be independent

in certain activities, there may situations when assistance is needed and it is it important

to have such services available.

A different viewpoint was reflected in the statement of VM4. This participant

seeks to avoid the need to rely on assistance altogether and uses independence as a means

to get stronger:

I don't like people helping me. When I need them they won't be there. I
just I don't probably there are a lot of things that could have helped me.
They would have helped me but they would have made me weaker. That
is how I feel about an assistive device. I don't use any more than I have to.
I don't like pills or pain pills. I don't do anything that I can possibly get by
without. I think the less personal care if I can get by without it I do. I am
fortunate. I have been blessed. I remember the time when I had to be
catheterized and I had to have help run a bowel movement, helped out of
bed. Helped be turned over but, I think that refusal and denial using
assistant devices has help me get stronger. That is one of the reasons that I









have gotten better... I don't believe there is nothing I can't do. I believe
that if a ballet dancer can dance on her toes and an ice skater can skate on
ice, I can walk on size 11 shoes. That is my theory and I trying real hard
to do it and I am getting to where I can do it a little better. I can get better
and pretty soon I will be doing it normal. That is what I am counting on.

PAC services in place

The previous themes focused on mental health and the issue of independence.

Another theme that emerged that can impact adjustment to a SCI and to a lack of

independence involves ensuring that services are in place before an individual is

discharged from acute care. VM5 discusses this issue:

When I was getting ready to go out of rehab, there were things that needed
to be done, in my home, to get ready for me to come home, like a ramp
had to be built, the floor of the bathroom and those kind of things. It was
not a great amount of need but things needed to be done. I had some
assistance from the state spinal cord association. The girl did not follow
through.... I think those kinds of things for people who have their needs to
be more planned. It is a scary thing coming home and not being able to do
things you could do before, having somebody to wait on you. The biggest
thing is the coordination efforts so there is not that much stress on the
individual... The people I talked to in rehab, most of us were not prepared
certainly for going through things like that. You know, no matter where
you lived, your home was not ready for something like that. I live on a
rock road. I live in the country. It would not be easy to move around. We
have had those things built so I could get up and down.

This participant struggled with the fact that his attendant care services were not in

place when he was discharged from rehabilitation. Having the stress of not having these

services would appear to greatly impact the ability of an individual with SCI to adjust to


his/her disability.









Scheduling

In addition to having PAC services in place following discharge from a

rehabilitation hospital, scheduling of such services should coincide with the needs of the

individual utilizing such services. The scheduling of PAC can impact the ability of

individuals with SCI to be involved in other life activities such as employment. VM2

discusses the impact of PAC for bowel management on his vocational activities:

Bowel care which takes literally a half a day.. only way to do it is to just
sit and get a suppository and wait for the results. Then it comes out and
you put it in the bag. They wait for about an hour for the suppository to
come back out. If it doesn't come out, it stays in, you know...explosions..
That is really embarrassing. That is why the guys that have it in the
evening, they don't get caught like that.... I would rather it be after six. If
you are doing it in the evening and you are being in the bed, it won't be
disgusting in front of people... That way when voc rehab does find
something for me to do, I can work fulltime instead of part time.

This participant expressed concerns about the ability to schedule PAC for his bowel

management. Unfortunately, the PCA comes in the morning, which means that he may

have to wait a few hours for a bowel movement. If he doesn't have a bowel movement,

the participant is then concerned that that he could have an accident later on during the

day. At this time the participant may be working or taking part in activities outside

his/her home. This can very embarrassing and becomes a barrier to participating in

community activities. As pointed out by this participant, proper scheduling of such

services, for example, in the evening would reduce the embarrassment since, he would be

home if it occurred.









PAC during hospital stays

An important theme that transpired from the interviews was the issue of PAC

during stays in the hospital. As pointed out in Chapter 2, there are many potential

complications associated with SCI, which can result in an individual having to stay in a

hospital for some duration. VM5 discusses a problem oftransitioning from PAC in a

rehab setting to PAC at the hospital:

I know the hospital, I was at Shands two times... The hospital staff was
good but when I got to rehab, it was different. Shands rehab was a totally
different experience. Those people were there for you. They were there.
At the hospital they need to make sure you are surviving and make sure
you get acute care. But the time when I went back in the hospital, I have
been so spoiled and taken so well cared for at the rehab, if you know, you
do need to have an aide if you have a button and you push it and
somebody was there right. When I went back in the hospital, I pressed the
button and it might be five minutes that I have to press it again. I
understand that they were very busy, but you know, one the things that
when I need a urinal bottle I could not wait. Finally, when a nurse came in
and said, can I help you, I said, it was too late. Now you have to clean the
bed up. I got back to rehab and I said, I am so glad I am back here. You
people took good care of me. They were Johnny on the spot.

Trustworthiness

Adjusting to the fact that an individual has to rely on another individual for

personal assistance can be a difficult adjustment for a veteran with SCI. One theme that

materialized relating to this issue was the effort to find someone trustworthy enough to

provide such services. VM1 discussed an example:

I think the biggest thing is trustworthiness. Because people who are going
to have this kind of care are going to have a live in and if they are not
living in they are not going to help you much. If you have to pick up the
phone to call them and get them and whether or not they are there. There
are times when she is not there and goes off and does things on her own.
But the majority of the time I can rely on her. Now, the trustworthiness,
because she is living in your house, because right now I go off by myself
when she is there.











This same participant goes on further to discuss trust in terms of being comfortable and

adjusting to embarrassment associated with the opposite gender of the person providing

PAC services:

It is hard to find a man that would be an attendant caregiver for a guy. A
woman would not mind doing it, but for the guy to get over the initial
embarrassment to me that is probably the hardest part... Well, both of us
would to some extent. When she first came down to help me, we sat down
and I had a long talk with her and I said, you know, this is not going to be
an easy job. Most of the time I take care of myself and I don't need help
but there will be a few times I will. I tried to explain stuff the best way
that I could, then you are thinking now I left out the part that I am going to
be naked... There is an embarrassing point in there where you just got to
get over that hill and everything is fine after that...If your were married or
something it might be a different situation. You are requiring him from
time to time to help you with personal hygiene, you know, and stuff like
that. There is an embarrassing factor there to start with.

Spousal care

A final theme that emerged from the interviews related to the importance of

having a spouse provide PAC and concerns with such care:

VM6: You just have to make sure the personal care attendant can handle
taking care of you. My wife does it as long as she is able. That could
change. Right now she is where she could do it. But, if not there are
things that I would have to do. My wife had knee surgery and had blood
clots. I could do a lot of it but I could not without say a van. For instance I
could not drive it by myself somebody would have to go with me... One
time I was on a bicycle doing exercises with the hand thing and it works
the leg too. I slipped off on the floor. My wife walked out of the room
and when she came back she said, what are you doing on the floor? I just
slipped off. How are we going to get you up? I had to scoot over to the
couch with my wife lifting and helping me and she got me up on the
couch. I got the chair back up. But there are times when we holler for the
grandkids. One time the lights went off and I fell in the living room with
the wheelchair and it is a drop down. Instead of being still until my wife
got the candles, she got on the phone and got the grandkids and they all
came flying over. They put me back. We have good grandkids...we have
a good family. Some people have family that is really bad.









This participant expressed a concern that even though his spouse can handle his

PAC, there might be a time when her health condition or inability to handle strenuous

activities can impact the veteran. He also stated the importance of having other family

members available to provide PAC services as well.

Another participant explains the financial strain associated with having a spouse as

the caregiver, and including the caregiver in the rehabilitation process:

VM7: It is like I took care of the bills. I was the one that made the
money. Her little bus driver job did not pay a whole lot, every two weeks
and it threw us into a hole. She was dealing with losing her job, to do this,
my insurance, everything. It is just like, there is no help out there for the
caregiver, none. Although they are expected to be here 24 hours a day she
is a diabetic and she cannot go to a doctor because she lost her insurance.
It was over a year and a half before she went and got her diabetes pills,
because she had none. ...When I was sent to Shands rehab they told my
wife how to take care of me from head to toe, how to deal with my trach
and she cleaned it out. She changed, she did everything down to the
feeding tubes and she cleaned that, and she fed me... She did my bowel
care and bladder catheter and everything.... Let the caregiver be a part of
the process. It is going to be hers sooner. She is part of it. She would be
more relaxed if she were part of it when we were ready to go home.

The next chapter will include a discussion regarding these themes and how they implicate


future research related to PAC.














CHAPTER 5
DISCUSSION

Introduction

This study involved acquiring and examining the activities necessary to consider

when making PAC recommendations for individuals with SCI. This chapter is divided

into four sections, which discuss the findings presented in the previous chapter. The first

section includes an overview of the significant findings from both the Delphi Study and

the Qualitative Interviews. The second section describes limitations of this study. The

third section illustrates implications of the findings for practice and policy. The final

section includes recommendations for further research and development of the findings

of this study.

Overview of Significant Findings

Delphi Study

Of the 100 experts, solicited for this project, 25 completed all three rounds

of the Delphi study. The results of the study indicated that the Delphi technique was

effective in generating a large item bank of activities that one should consider when

making PAC recommendations for individuals with SCI. Furthermore, consensus

techniques allowed this researcher to determine that there was a strong agreement that

professionals should consider at least 164 of the generated activities when recommending

PAC for individuals with SCI. The approach to assessing the level of consensus included

comparing the medians and the interquartile ranges of all the items between the second

and third round.









The items generated by the experts were comprehensive and were comprised of

activities related to self-care, home/yard maintenance, transportation leisure, work, and

education. Self-care activities such as dressing, grooming, bowel/bladder management,

and eating were similar to items included in current ADL assessments such as the FIM

(Granger & Hamilton, 1986), the MDS (Health Care Financing Administration, 1998),

and the Barthel Index (Mahoney & Barthel, 1965). Other items relating to home/yard

maintenance, transportation, leisure, work, and education corresponded to other

constructs, not currently being assessed by other instruments used for predicating PAC.

As such, the views of the life care planner participants would appear to support the

position that assessment for the provision of PAC services is a comprehensive process

that should not be limited by relying solely on an assessment of ADL's.

Results and the ICF model

As pointed out in Chapter 2, recommending PAC based solely on individual's

ability to be independent with ADL's is inconsistent with the ICF Model of disablement.

This model combines biological and social views of disability. Specifically, The ICF

model, describes disability in terms of health conditions, body function, activities and

participation, and the environment. The pathway described by the ICF is bi-directional

and which means that each component of the model can impact another component of the

model and vice versa (World Health Organization (WHO), 2001).

The 164 activities from this study would fall under the activities and participation

components of the ICF model. As discussed in Chapter 2, activities and participation

cover a complete range of areas denoting aspects of functioning from both an individual

and societal perspective. Activities are defined as "an execution of a task or involvement

in a life situation in a uniform environment." Participation is described as "the execution