• TABLE OF CONTENTS
HIDE
 Title Page
 Acknowledgement
 Table of Contents
 Abstract
 Introduction
 Review of the literature
 Methodology
 Results
 Discussion
 Appendix A: Clarifications on Vineland...
 Appendix B: Case studies
 Appendix C: Case study consent...
 Appendix D: Summary of analysis...
 Appendix E: Summary of analysis...
 Appendix F: Summary of analysis...
 Appendix G: Summary of analysis...
 Appendix H: Adaptive level and...
 Appendix I: Adaptive level and...
 References
 Biographical sketch














Title: Effects of placement in an intermediate care facility for the mentally retarded /
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 Material Information
Title: Effects of placement in an intermediate care facility for the mentally retarded /
Physical Description: vii, 154 leaves : ill. ; 28 cm.
Language: English
Creator: Bedinger, Susan Angenendt, 1948-
Publication Date: 1985
Copyright Date: 1985
 Subjects
Subject: People with mental disabilities -- Care -- United States   ( lcsh )
Foundations of Education thesis Ph. D
Dissertations, Academic -- Foundations of Education -- UF
Genre: bibliography   ( marcgt )
non-fiction   ( marcgt )
 Notes
Thesis: Thesis (Ph. D.)--University of Florida, 1985.
Bibliography: Bibliography: leaves 145-152.
General Note: Typescript.
General Note: Vita.
Statement of Responsibility: by Susan Angenendt Bedinger.
 Record Information
Bibliographic ID: UF00099476
Volume ID: VID00001
Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
Resource Identifier: alephbibnum - 000873479
notis - AEH0784
oclc - 014589029

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Table of Contents
    Title Page
        Page i
    Acknowledgement
        Page ii
    Table of Contents
        Page iii
        Page iv
        Page v
    Abstract
        Page vi
        Page vii
    Introduction
        Page 1
        Page 2
        Page 3
        Page 4
        Page 5
        Page 6
        Page 7
        Page 8
        Page 9
        Page 10
        Page 11
        Page 12
        Page 13
        Page 14
        Page 15
    Review of the literature
        Page 16
        Page 17
        Page 18
        Page 19
        Page 20
        Page 21
        Page 22
        Page 23
        Page 24
        Page 25
        Page 26
        Page 27
        Page 28
        Page 29
        Page 30
        Page 31
        Page 32
        Page 33
        Page 34
        Page 35
        Page 36
        Page 37
        Page 38
        Page 39
        Page 40
        Page 41
        Page 42
        Page 43
        Page 44
        Page 45
        Page 46
    Methodology
        Page 47
        Page 48
        Page 49
        Page 50
        Page 51
        Page 52
        Page 53
        Page 54
        Page 55
        Page 56
    Results
        Page 57
        Page 58
        Page 59
        Page 60
        Page 61
        Page 62
    Discussion
        Page 63
        Page 64
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        Page 71
        Page 72
        Page 73
        Page 74
        Page 75
        Page 76
        Page 77
    Appendix A: Clarifications on Vineland social maturity scale scorings
        Page 78
        Page 79
        Page 80
        Page 81
        Page 82
        Page 83
    Appendix B: Case studies
        Page 84
        Page 85
        Page 86
        Page 87
        Page 88
        Page 89
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        Page 132
        Page 133
        Page 134
        Page 135
        Page 136
    Appendix C: Case study consent form
        Page 137
        Page 138
    Appendix D: Summary of analysis of variance for moderately retarded subjects after three years in ICF/MR
        Page 139
    Appendix E: Summary of analysis of variance for severely retarded subjects after four years in ICF/MR
        Page 140
    Appendix F: Summary of analysis of variance for profoundly retarded subjects after four years in ICF/MR
        Page 141
    Appendix G: Summary of analysis of variance for profoundly handicapped ICF/MR subjects after four years in ICF/MR
        Page 142
    Appendix H: Adaptive level and its relationship to chronological age and level of retardation (IQ) for all control subjects and for subjects who lived in ICF/MR at least one year
        Page 143
    Appendix I: Adaptive level and its relationship to age at institutionalization, years lived in non-ICF/MR, and age at entry to ICF/MR for all ICF/MR subjects
        Page 144
    References
        Page 145
        Page 146
        Page 147
        Page 148
        Page 149
        Page 150
        Page 151
        Page 152
    Biographical sketch
        Page 153
        Page 154
        Page 155
        Page 156
        Page 157
Full Text










EFFECTS OF PLACEMENT IN AN INTERMEDIATE CARE
FACILITY FOR THE MENTALLY RETARDED





By


SUSAN ANGENENDT BEDINGER


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

1985














ACKNOWLEDGEMENTS


This work is the culmination of a great deal of effort that would

not have been possible without help and input from many sources, too

numerous to list specifically lest I unwittingly omit names.

My appreciation goes to my family and friends who have provided

support and encouragement throughout the writing process and, more

importantly, throughout the life process leading to this point.

My gratitude must be expressed to the academic instructors, con-

sultants, and colleagues who have contributed so importantly to my

professional growth. My committee members, especially Don Avila,

chairman, and Bob Jester, statistical consultant, have always been

available to listen or to suggest different ways of approaching the

problem.

Most importantly, acknowledgement is due the caregivers, families,

therapists, and administrative staff at Sunland who have joined forces

to provide loving and effective care for the residents. And I thank

the residents of Sunland for the innumerable times they have brightened

my days and helped remind me of my true priorities.

The patient assistance of Adele in typing this work is gratefully

acknowledged. My thanks also go to Ross and Ann for making their home

and computer available to me, even at the strangest of times.















TABLE OF CONTENTS


Page

ACKNOWLEDGEMENTS . . . . . . . . ... . ii

ABSTRACT. . . . . . . . . ... . . . . . vi

CHAPTER

I INTRODUCTION . . . . . . . . ... . . 1

Background of the Study. . . . . . . . ... 1
Statement of the Problem . . . . . . . . 3
Intermediate Care Facility for the Mentally
Retarded. . . . . . . . . ... ... 4
Sunland ICF/MR. . . . . . . . . . 5
Maladaptive Behaviors . . . . . . . . 7
Behavioral intervention. . . . . . . 8
Medical intervention . . . . . . . 9
Interdisciplinary Team. . . . . . . .. 11
Community Placement . . . . . . . .. 12
Purpose of the Study . . . . . . . ... .14
Expected Results .. . . . . . . .... ..... 14

II REVIEW OF THE LITERATURE . . . . . . . . 16

Definition and Diagnosis of Mental Retardation . . .. 16
History . . . . . . . . . . . 18
Demographic Data Collection . . . . . . 19
Normalization . . . . . . . . . 20
Institutionalization versus Deinstitutionalization. 22
Intermediate Care Facilities . . . . . . . 25
Community Placement versus Institutional Care. . . ... 26
Institution Size . . . . . . .. 28
Pre-Institutional History of Residents. . . .. 33
Length of Deinstitutionalization. . . . . ... 34
Institutional Factors. . . . . . . . 34
Staff-Client Ratio . . . . . . .. 35
Staff Behavior and Attitude . . . . ... 36
Summary . . . . . . . . . . . 38
Success of Community Placement . . . . . .... 39
Problems in Community Placements. ........ 40
Factors Involved in Successful Community Placement. 42
Environmental factors. . . . . . ... 43
Individual factors . . . . . .... .45











III METHODOLOGY. . . . . . . . . ... . ..

Subjects . . . . . . . . . . . . .
Instrumentation . . . . . . . . . .
Intelligence Tests . . . . . . . .
Adaptive Level . . . . . . . . .
Hypotheses . . . . . . . . . . . .
Procedure . . . . . . . . . . . .
Design and Analyses . . . . . . . . . .
Summary . . . . . . . . . . . .

IV RESULTS . . . . . . . . . . . .


Effects of ICF/MR Placement. .
Effects of Handicap Conditions .
Relationships Between Social Age
Variables . . . . .
Summary . . . . . .


Demographic

. . . . . .


V DISCUSSION . . . . . . . . . . . .


Effects of ICF/MR Placement . .
Initial Differences Between Groups .
Relationships Between Social Age and
Variables . . . . . .
Implications for ICF/MR . . .
Implications for Education . . .
Limitations of the Present Study .
Suggestions for Additional Research.
Conclusion . . . . . . .


APPENDIX


. . . . . .
. . . . . .
Demographic
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .


A CLARIFICATIONS ON VINELAND SOCIAL MATURITY SCALE
SCORINGS . . . . . . . . . . . . .

B CASE STUDIES . . . . . . . . . . . .

C CASE STUDY CONSENT FORM. . . . . . . . . .

D SUMMARY OF ANALYSIS OF VARIANCE FOR MODERATELY RETARDED
SUBJECTS AFTER THREE YEARS IN ICF/MR . . . . . .

E SUMMARY OF ANALYSIS OF VARIANCE FOR SEVERELY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . . .

F SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . ....


Page

47

47
48
48
50
53
54
55
56

57

57
61

61
62

63

63
67

68
69
72
73
74
76




78

84










G SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
HANDICAPPED ICF/MR SUBJECTS AFTER FOUR YEARS IN ICF/MR. . 142

H ADAPTIVE LEVEL AND ITS RELATIONSHIP TO CHRONOLOGICAL
AGE AND LEVEL OF RETARDATION (IQ) FOR ALL CONTROL
SUBJECTS AND FOR SUBJECTS WHO LIVED IN ICF/MR AT
LEAST ONE YEAR . . . . . . . . . 143

I ADAPTIVE LEVEL AND ITS RELATIONSHIP TO AGE AT INSTI-
TUTIONALIZATION, YEARS LIVED IN NON-ICF/MR, AND AGE
AT ENTRY TO ICF/MR FOR ALL ICF/MR SUBJECTS. . . . ... 144

REFERENCES . . . . . . . ... ... . . . 145

BIOGRAPHICAL SKETCH. . . . . . . . . ... . . 153










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


EFFECTS OF PLACEMENT IN AN INTERMEDIATE CARE
FACILITY FOR THE MENTALLY RETARDED

by

Susan Angenendt Bedinger

December, 1985

Chairman: Donald L. Avila
Major Department: Foundations of Education

The purpose of this study was to examine the effects of place-

ment in a federally funded Intermediate Care Facility for the Mentally

Retarded (ICF/MR) training program as opposed to placement in a more

traditional care unit at the same institution. Conflicting results

in the literature indicated a need for research on the effects of the

program.

The progress of 158 moderately, severely, and profoundly retarded

subjects living in a state institution was compared with that of 279

control subjects. Profoundly retarded ICF/MR subjects were further

divided by number of major physical handicaps.

Social Age, as measured by the Vineland Social Maturity Scale,

was found to increase significantly for all ICF/MR subjects but for

none of the non-ICF/MR conditions. Progress for moderately and

severely retarded non-ICF/MR subjects was not significant during the

year following an institutional reorganization which attempted to

provide equal services to both ICF/MR and non-ICF/MR units. Implica-

tions of the significant progress made by profoundly retarded control









subjects during this year were questionable. Age at institutionaliza-

tion, number of years lived in the institution before placement into

an ICF/MR unit, and length of time spent in ICF/MR were all found to

have no relation to progress.

Twelve case studies examined individual response to placement in

ICF/MR and some possible reasons for progress or lack thereof.

Subjects in the ICF/MR program made significant gains in Social

Age as opposed to those living in more traditional care units at the

same institution even after improvement of services in the traditional

units. No demographic or diagnostic characteristics were found to be

predictive of success in the ICF/MR program with the possible exception

of the presence of psychosis in addition to a diagnosis of mental

retardation.














CHAPTER I
INTRODUCTION



Mental retardation is an age-old tragedy and our reactions to

it and treatment (or lack thereof) have varied greatly throughout the

years. The birth of a retarded child has been viewed alternately as

a punishment from God and as a blessing, and response to the child has

ranged from total neglect and abuse to total acceptance and lack of

any demands or expectations. Current work has established the ability

of retarded persons to learn and develop and now concentrates on

finding the best methods for promoting developmental growth.


Background of the Study


More than six million people in the United States have some

degree of mental retardation. This population ranges from those

known as "six-hour retardates," mildly retarded persons who do poorly

in school but have adequate adaptive and social skills for daily

functioning (Anderson, 1981), to the most profoundly retarded and

handicapped individuals who are passive captives of their environment.

The more severely retarded persons are found mainly in institutional

settings (Eyman & Borthwick, 1980).

For many years, the profoundly retarded were thought to be un-

trainable and so received only minimal custodial attention (Stainback









& Stainback, 1983). Recent interest and legislation have focused on

the adaptive needs and potential of developmentally delayed persons (Turnbull

&Turnbull,1978). Enacting legislation and guaranteeing the rights of

the mentally retarded are only beginning steps, however, and effective

implementation strategies have yet to be definitively outlined. Several

directions are now being explored including intensive training,

improvement of living conditions,and deinstitutionalization of resi-

dents into the community (Gibson & Fields, 1983; Landesman-Dwyer, 1981).

These issues will be discussed in greater detail in Chapter II but the

point for now is that awareness of the historical dehumanization of

the mentally retarded has reached the public forum and options for

correcting past injustices are being explored.

Sunland Center in Gainesville, Florida,I is a state institution

for the mentally retarded. Originally established in 1922 as the

"Florida Farm Colony for Epileptic and Feeble-Minded," it is today an

attractive collection of brick cottages, support departments, and

hospital. The majority of cottages are unlocked so that residents

can go inside and out at will and those who are capable travel around

the campus by themselves when going to school, work, bank, or canteen.

Prevocational training departments in each unit prepare residents for

paid work positions in the institution's sheltered work shops.




There were initially six widely dispersed Sunland Centers located
throughout Florida. Two changed their names and two closed due to
physical plant inadequacies so that there are now only two "Sunland
Centers" in Florida. All references to Sunland in this study refer
to the institution located in Gainesville.









The majority of clients presently residing at Sunland fall into

the severe and profound levels of retardation since most moderately

and mildly retarded residents have been moved to community placements.

A significant number of the residents remaining in the institution have

some degree of visual, auditory, and/or motor deficit.



Statement of the Problem


Despite substantial individual differences within the mentally

retarded population, there has been a marked tendency in the literature

to consider limited numbers of variables when studying or devising

treatment plans. Frequently, the only designated independent variable

has been the subject's IQ level (Finn, 1983; Sandler & Thurman, 1981).

Response to training and environment has, however, been shown to be

dependent on other factors such as functioning level prior to treatment

(Kleinberg & Galligan, 1983; Landesman-Dwyer, 1981) and size of insti-

tution (Baroff, 1980). Further, the quality of attention given to

residents is influenced by staff perception of the resident's attrac-

tiveness and likability in addition to mental level (Dailey et al.,

1974). Few studies have measured intervention effects using an objec-

tive scale of adaptive development (Lemanowicz et al., 1980). Measures

such as decreased verbal dependency and imitativeness, and increased

behavioral variability as defined by motivation on a circular maze test(Balla,

Butterfield, &Zigler, 1974), are interesting but not readily general-

izable to treatment. Additionally, most studies have used a cross-

sectional rather than longitudinal design so that effects have not

been examined over time (Lemanowicz et al., 1980).








The present study examined six years of longitudinal data,

looked at several variables such as number of physical handicaps,

age at institutionalization, and time spent in traditional custodial

care before placement in an intensive training program, and made

specific treatment recommendations.



Intermediate Care Facility for the Mentally Retarded


A federally funded program, Intermediate Care Facility for the

Mentally Retarded (ICF/MR), has been implemented nationwide in order

to provide optimum living and training conditions for mentally retarded

persons. Funded under Title XIX of the Social Security Act (Medicaid),

ICF/MR units function under strict guidelines and accountability

standards. The program is designed to provide a stimulating training

environment for large numbers of institutionalized residents and to

prepare them for placement in the community. The ICF/MR program units

provide intensive and individualized training to residents in all areas

of need including self-care and daily living, academic, social, motor,

speech, and job-related skills, as well as any medical, occupational,

or physical therapy services. The following conditions are necessary

to qualify for ICF/MR placement:


any person who has reached his 18th birthday and has an IQ
of 49 or less or who has an IQ of 50-69 with an additional
disability such as blindness, deafness, etc. Any person
under 18 years of age with an IQ of 59 or less or who has
an IQ of 60-69 with an additional disability. These persons
must have an income no greater than $505.00 per month and
total assets no greater than $1,500. (State of Florida
pamphlet ICF/MR? Department of Dealth and Rehabilitative
Services [no date or publication number given])









Sunland ICF/MR


Twenty-eight of the fifty cottages at Sunland Center are licensed

ICF/MR residences. The first unit (Facility I) of 120 residents re-

ceived its ICF/MR license in 1977 and new units were added as funds

became available to meet physical plant renovation requirements.

Facility II came on line in 1979; Facility III in 1980; Facility IV

in 1981; and one-half of Facility V in 1982. There are no plans at

present for further expansion of the program at Sunland.

The ICF/MR program is supported by federal (56%) and state (44%)

funds. The maximum payment per client per month is $1,064.00, depending

on the particular needs of the client. Guidelines and accountability

are strict. For example, each client must have a minimum of eighty

square feet of living area if in a private room, or sixty square feet

if living in a room of two to four persons. Families are encouraged

to visit at any time and a resident is permitted to spend up to thirty

nights at home per year. Medical care is provided, and each client

must have a medical, pharmaceutical, and dietary review every sixty

days. A direct care staff to client ratio of one to two is required

for ambulatory and one to one for non-ambulatory residents. Addi-

tionally, a cottage manager and training staff are assigned to each

cottage. Clients may not have more than three consecutive hours of

unstructured time any time of the day, any day of the week. Standards

are monitored through biannual surveys conducted by the Office of

Licensure and Certification (OLC) and Medicaid, as well as by an

in-house Quality Assurance Team in addition to monthly facility self-

monitoring.








Each Sunland unit of 120 clients is supported by a profes-

sional staff of two psychologists, social workers, speech therapists,

occupational therapists, vocational trainers, and one dietician. All

clients are evaluated yearly and their progress over the past year

assessed. Training goals for each client's coming year are developed

at his or her annual habilitation plan meeting. Progress in all train-

ing programs is reviewed at least quarterly and often monthly by an

Interdisciplinary Team (IDT) which consists of cottage staff, all

therapists who provide services to each client, and the social worker,

nurse, and program coordinator (Qualified Mental Retardation Profes-

sional--QMRP).

Prior to November 1982 Sunland non-ICF/MR cottages had a high

staff-client ratio and provided traditional custodial care. Two or

three direct care staff each shift performed all housekeeping and

caretaking activities for one cottage of twenty to thirty residents,

and one or two training aides were supervised by a behavioral program

specialist working out of a central programming department. In

November of 1982 the Center underwent a unitization process during

which all therapy departments were dissolved and placed under the

authority of the head administrator in each unit. All facilities were

assigned the same number of direct care, training, and therapy staff

except that non-ICF/MR cottages received no housekeepers. All

facilities were then charged with meeting ICF/MR standards so that

all clients at Sunland would receive identical training and care

whether they lived in ICF/MR or in non-ICF/MR units.









In practice, however, this attractive goal has not been met and

there remains a training/care differential between the two kinds of

living units. Non-ICF/MR cottages remain more crowded than their

ICF/MR counterparts and ICF/MR staff vacancies at times take priority

because licensing and federal funding are jeopardized if full services

are not consistently provided to ICF/MR residents. The absence of

housekeeping staff in non-ICF/MR requires that custodial (direct care)

staff perform housekeeping chores and considerably lessens the amount

of time they can devote to training clients, work routinely performed

by the direct care staff in ICF/MR. The assignment of permanent nursing

staff to ICF/MR cottages enables clients to receive training in

health-care needs such as proper handwashing and water fountain skills

for hepatitis carriers, disinfection of bathing mats for those with

foot fungus difficulties, adequate hydration for those taking medica-

tions, and first aid programs. Unitization narrowed the services gap

between the two halves of Sunland but has not negated it despite

vigorous efforts to standardize the entire Center.



Maladaptive Behaviors


Many clients at Sunland exhibit a wide range of inappropriate

behaviors ranging from mild, annoying behaviors to life-threatening

self-abuse and aggression. Control of client behaviors is accomplished

through a combination of behavioral intervention and administration of

psychotropic (mind-affecting) medications.








Behavioral intervention

Behavioral intervention is the primary approach at Sunland when

attempting to bring problematic behaviors under control. Procedures

must adhere to strict guidelines developed by the Florida Department of

Health and Rehabilitative Services (HRS). Any procedure which intrudes

into client rights must be approved and monitored by a state-certified

(Level III) committee. Any approved aversive (unpleasant) procedure

must be paired with a heavy reinforcement schedule (pleasant con-

sequences for appropriate behavior). Unpleasant physical interventions

such as spanking or electric shock are never permitted.

Behavioral techniques commonly employed at Sunland include

1. Positive Reinforcement: Response-contingent presentation of a

stimulus which maintains or increases the frequency of the response;

2. Differential Reinforcement: Reinforcement for a response under

one stimulus condition but not under other stimulus conditions, e.g.,

a specific behavior is encouraged in one situation but the same

behavior emitted in an inappropriate situation is not reinforced;

3. Social Disapproval: Response-contingent use of certain statements

and facial expressions which results in a decrease in the inappro-

priate behavior (verbal abuse and humiliation are not permitted);

4. Time-Out:

a. Exclusion Time-Out I: The prompt and temporary removal of a

client from an activity contingent upon the occurrence of specified

inappropriate behaviors;

b. Exclusion Time-Out II: The prompt and temporary removal of a

client from an activity and placement behind a screen or other









visual obstruction after exhibition of specified inappropriate

behaviors;

c. Seclusion Time-Out: Temporary confinement in a room contingent

upon the occurrence of a specified maladaptive behavior; the

opportunity to acquire or contact reinforcing stimuli is suspended.

5. Response Cost: Removal, postponement, or omission of the presenta-

tion of a reinforcer after a targeted maladaptive behavior has

occurred;

6. Extinction: The discontinuation of identified reinforcing con-

sequences results in a decrease in the rate, force, duration, or other

characteristics of the targeted maladaptive behavior.

Once an intervention strategy is developed and approval obtained

from the Level III committee, all staff involved in its implementation

are trained and appropriate documentation set up. Results are

regularly monitored and changes in the program made as the targeted

behavior either responds to the intervention or fails to show

improvement.



Medical intervention

As stated earlier, behavioral intervention is the treatment of

choice when dealing with clients who exhibit problematic behaviors.

At times, though, inadequate response to consequences or the severity

of a target behavior warrants prescription of psychotropic (mind-

affecting) medications in addition to programming. Medications

commonly prescribed at Sunland include antipsychotics (also called

neuroleptics and major tranquilizers) such as Thorazine, Mellaril,








Prolixin, Stelazine, Navane, Haldol; minor tranquilizers such as

Librium; the anti-manic medication Lithium Carbonate; and anti-

depressants such as Elavil, Sinequan, Xanax, and Tofranil (DeGennaro

et al., 1981; Harris, 1981a,b,c,d).

Major tranquilizers are used to treat serious symptoms such as

agitation and rage, overreaction to sensory stimuli, combativeness and

hostility, hallucinations, delusions, and paranoia. They are admin-

istered orally at Sunland, and residues remain in the fatty tissues

for two to three months after discontinuation.

Possible side effects of the major tranquilizers include sedation,

dizziness, diminished sex drive, difficulty ejaculating, weight gain,

a lowered seizure threshold with concurrent increased risk of seizure

activity, and anticholinergic effects such as nasal congestion, dry

mouth, blurred near vision, constipation, and urinary retention. These

side effects often dissipate within days or weeks of starting the

medication. Of more concern is tardive dyskinesia, a neurological

condition which may occur after long-term use of antipsychotic medica-

tions. This often irreversible condition is manifested by tremors and

tongue thrusting. The disorder is usually masked by the drug and is

therefore often not discovered until the medication has been discon-

tinued.

Minor tranquilizers such as Librium are typically used to help a

client adjust to a particularly stressful situation and are prescribed

on a short-term basis. Lithium Carbonate has a calming effect on some

agitated or hyperactive clients. Antidepressants are used to treat

long-term symptoms of depression.








Clients receiving antipsychotic medications are reviewed regularly

by the physician, psychiatrist, and psychologist, and attempts are

constantly made to reduce or discontinue dosages. As of May 1984, 29%

of the client population at Sunland (257 of 886 residents) received

psychotropic medications: 187 were prescribed one drug; sixty-seven received

two kinds of drugs; and three clients received three separate medica-

tions (Bates, 1984). Less than one year later (Bates, 1985), the

usage of major psychotropic medications had decreased to 21.4% of the

total population of 860 clients and the use of minor agents, especially

Xanax, had increased. Interestingly, fewer ICF/MR clients required

psychotropics in 1985 than did residents of non-ICF/MR cottages. This

finding agrees with the results of a nursing study conducted at Sunland

(Steadham, 1983) which found that minor psychotropic agents are more

often prescribed for ICF/MR clients and that the major psychotropics

are more often prescribed for non-ICF/MR residents. Steadham also

found that injuries sustained by clients in ICF/MR require significantly

less medical intervention (are less serious) than those which occur in

non-ICF/MR units. She suggests that differences may be due to the

greater amount of programming and living space provided by ICF/MR.


Interdisciplinary Team

Decisions about client treatment are made by unit Interdisciplinary

Teams (IDT) composed of a chairperson (QMRP), psychologist, social

worker, nurse, cottage manager and staff, and therapists. These teams

meet yearly to formulate each client's Habilitation Plan (Hab Plan),









which is an evaluation of the client's progress during the preceding

year and establishment of formal training goals for the coming year.

This same team then meets monthly to discuss each client's progress

toward all of the goals established in the Hab Plan. At these meetings

the different therapists and trainers are able to share any concerns

they may have about the client's performance and health, and suggest

changes in programming so that ICF/MR guidelines requiring client

progress are met.



Community Placement


At the time of each client's Hab Plan the IDT must justify con-

tinued placement of that client in ICF/MR and must also project his or

her best probable placement in three to five years. Many of the clients

in the ICF/MR program are felt to benefit from their current living

arrangement and so their recommended placement remains ICF/MR. Some

clients progress to the point where community living is indicated and

so Sunland ICF/MR placement is recommended for them only until an

appropriate community setting becomes available. In reality, however,

clients frequently remain at Sunland for several years after being

recommended for community placement because of the shortage of outside

living arrangements.

Several placement options are available in Florida for mentally

retarded persons:

1. Community ICF/MR: Operates under the same training guidelines

and accountability standards as Sunland ICF/MR but is restricted

to sixty clients and provides a noninstitutional atmosphere;








2. Group Home: Serves four to sixteen clients in a family type situa-

tion and allows maximum integration into normal neighborhood activities.

Provides some specialized care and/or training based on needs of

residents and classification of the home;

3. Foster Home: Serves one to three clients and provides supportive

family atmosphere and specialized care and/or training based on needs

of residents and classification of the home.

The above types of placement are alternatives to the traditional

institutional placement for the mentally retarded and ideally provide

a less restrictive environment. Their strengths and weaknesses will be

discussed in the next chapter. Community ICF/MR facilities operate

under the same standards as Sunland ICF/MR but often provide contracted

therapy services rather than maintaining full-time professional staff.

Group and foster homes do not fall under ICF/MR guidelines and offer

more traditional custodial services. Residents of these homes often

spend much of their day at a sheltered work shop.

The ICF/MR program imposes firm structure and expectations on its

residents. Individualized treatment plans developed for all clients

help them achieve the highest level of adaptive and intellectual func-

tioning of which they are capable. The ICF/MR program has upgraded the

traditional institutional model which has focused only on residents'

basic health and care. Current practice at Sunland attempts to provide

care commensurate with ICF/MR standards in both its licensed and

unlicensed units. Emphasis is placed on training and eventual move-

ment of residents into less restrictive community placements.








Purpose of the Study


The purpose of this study was to investigate whether persons

living in a state institution for the mentally retarded show greater

adaptive development when living in a federally funded ICF/MR training

program than in traditional care units at the same center.

A great deal of effort and expense are required to run an ICF/MR

facility and maintain accountability, and the little research that has

been done on the effectiveness of the ICF/MR program has shown con-

flicting results. Both positive (Bedinger & Miles, 1982; Ellison,

1983; Witt, 1981) and negative findings (Bible & Sneed, 1976; Repp &

Barton, 1980) have been reported. The negative findings suggested

weaknesses in program implementation rather than flaws in the actual

program design. Relatively few studies have examined resident growth

by adaptive level and those that have did not look at repeated measures

across time (Lemanowicz et al., 1980).

The present study attempted to systematically explore the effects

of the ICF/MR program at Sunland by looking at large numbers of sub-

jects, several variables, and repeated measurements over several years.

Subjective observation and impressions of the ICF/MR program have

suggested that the quality of residents' lives has indeed improved,

but continued investment of effort and expense requires systematic

study and empirical evidence.


Expected Results


Subjects living in Sunland ICF/MR training units should exhibit

greater adaptive level gains as measured by an instrument of









developmental growth (the Vineland Social Maturity Scale) than resi-

dents of more traditional living units. Among profoundly retarded

clients, those with fewer major physical handicaps can be expected to

show higher gain scores than those with two or more handicaps. Non-

ICF/MR subjects should show more progress during the year following

unitization than during the period prior to it due to improved staffing

and programming services. Among ICF/MR clients, a relationship can be

expected between adaptive growth and age at institutionalization, years

lived in the traditional institutional atmosphere, and years spent in

the ICF/MR program.

The review of the literature which follows will examine the

history of treatment of the mentally retarded. Current intervention

strategies and probable factors which influence their effectiveness

will be discussed.














CHAPTER II
REVIEW OF THE LITERATURE



A great deal of research has been conducted on the etiology and

treatment of mental retardation. Chapter II examines the literature

related to this study beginning with a review of the historical treat-

ment of the mentally retarded. The effects of variables such as

institution size, resident's pre-institutional history, length of

institutionalization, staff-client ratio, and staff behavior are

examined. Finally, the trend toward moving the retarded into the

community is discussed as well as several factors which may influence

the success of such placements.



Definition and Diagnosis of Mental Retardation


The ability to function in one's environment is dependent on both

intellectual and adaptive levels. This interaction is reflected in the

American Association of Mental Deficiency (AAMD) definition of mental

retardation: "Mental retardation refers to significantly subaverage

general intellectual functioning existing concurrently with deficits

in adaptive behavior, and manifested in the developmental period"

(Grossman, 1977, p. 5).

To be classified as mentally retarded, therefore, an individual

must score two or more standard deviations below the mean (in the









lower 2% of the entire population) on standardized intelligence tests,

exhibit adaptive behavior which "will fail to meet the standards of

personal independence and social responsibility expected of persons of

similar age and cultural background," and manifest the condition before

age nineteen (Anderson, 1981, p. 715).

While formulation of this definition ended much of the guesswork

previously involved in the diagnosis of retardation, classification

and labeling of an individual as mentally retarded remain a less than

perfect endeavor.

Classification of persons as mentally retarded, although not pre-

cise, does serve the purpose of permitting service delivery to a

defined population. There is a positive correlation between agreement

on the operationalized definition of a special education population and

the availability of services for that particular population (Sabatino,

1981). In other words, when there is general agreement on a need,

i.e., retardation, that need is more likely to be addressed.

Levels of retardation are defined as follows (Grossman, 1977):

1. Mild: This is a term used to describe the degree of mental retarda-

tion present when intelligence testing scores range 2-3 standard devia-

tions below the norm (52-67 on the Stanford-Binet and 55-69 on the

Wechsler scales); many educable retarded individuals function at this

level; such children usually can master basic academic skills while adults

at this level may maintain themselves independently or semi-independently

in the community; they are fixated at Piaget's concrete operations stage.

2. Moderate: IQ scores range 3-4 standard deviations below the norm

(36-51 on Stanford-Binet and 40-54 on Wechsler); many trainable








individuals function at this level; such persons usually can learn

self-help, communication, social and simple occupational skills but

only limited academic or vocational skills; they are fixated at Piaget's

pre-operational intuitive stage.

3. Severe: IQ scores range 4-5 standard deviations below the norm

(20-35 on Stanford-Binet and 25-39 on Wechsler); such persons require

continuing and close supervision but may perform self-help and simple

work tasks under supervision, sometimes called dependent retarded; they

are fixated at Piaget's (upper level) sensorimotor stage.

4. Profound: IQ scores range more than 5 standard deviations below

the norm (19 and below on Stanford-Binet and 24 and below on Wechsler);

such persons require continuing and close supervision but some may be

able to perform simple self-help tasks; profoundly retarded persons

often have other handicaps and require total life support systems for

maintenance; they are fixated at Piaget's (lower level) sensorimotor

stage.



History


Thirteenth century England distinguished between the classes of

"born fool" and "lunatic" (Anderson, 1981). In the nineteenth century,

these same two classes of retarded were known as "idiots" and

"imbeciles." Probably the first written definition of mental

retardation is credited to Esquirol in 1845:

idiocy . a condition in which the intellectual faculties
are never manifested, or have never been developed suffi-
ciently to enable the idiot to acquire such amount of
knowledge as persons of his own age and placed in similar
circumstances with himself are capable of receiving.
(Anderson, 1981, p. 716)









While an admirable attempt, this definition classified people as

retarded if they had any one of a wide range of handicaps including

epilepsy, emotional disturbances, and deafness.

The Idiots Act of 1886 (Anderson, 1981) discriminated between

institutionalized "idiots" and "imbeciles." Labels such as Idiot,

Imbecile, and Moron persisted into the 1960's. Value labels such as

these may have contributed to the poor care generally available as well

as being a product of the philosophy that allowed such abysmal care.

In the nineteenth century, Itard worked with the "wild boy of Aveyron"

and was able to improve his condition somewhat, in spite of the pre-

vailing wisdom that idiocy was an incurable and chronic disease. In

1905 Binet and Simon developed the first standardized method of con-

sistent classification so that educable retarded children could

receive special training. Community-based services came into existence

in the mid-1950's and John F. Kennedy established the President's

Committee on Mental Retardation in the early 1960's. Section 504 of

the Rehabilitation-Act of 1973 and P.L. 94-142, the Education of All

Handicapped Children Act of 1975, mandate a free and appropriate educa-

tion in the least restrictive program for all handicapped children

(Turnbull & Turnbull, 1978).



Demographic Data Collection


Numerous surveys have collected information on the incidence and

characteristics of the retarded population in this country. Methodology

has been varied and the data obtained have often been unreliable,

limiting the information base available for policy decisions.









The first demographic data gathered on the population of mentally

retarded persons in the United States were drawn from the census of

1850 (Lakin et al., 1982). Efforts centered on counting the number of

"idiotic" and "feeble-minded" persons, as well as other "defective,

dependent, and delinquent classes." Census methodology was poor at

best, but it did signal some interest on the part of the federal govern-

ment in an important segment of its population. Initial surveys

attempted to count persons in the community as well as in institutions

but the data obtained were so unreliable that surveys after 1902 were

restricted to institutions. From 1926 to 1932, authorization was

made for data collection on "inmates in penal institutions and of

institutions for the care of the mentally diseased and of feeble-minded

and epileptics." Various government agencies have been assigned the

task over the years and the labels have changed from "moron," "imbecile,"

and "idiot" to "mild," "moderate," and "severe-profound." Data col-

lection continues and the interest of the federal government in the

developmentally delayed population has waxed and waned depending on

the political bent of the administration in power and the state of

the national economy.



Normalization


Emphasis on deinstitutionalization and normalization as well as

an overall decrease in numbers of school age children has resulted

in greatly diminishing numbers of people living in institutions for

the mentally retarded (Lakin et al., 1982). Normalization philosophy









was first formally addressed in the 1959 Danish Mental Retardation

Act (MacEachron, 1983) which sought "to create an existence for the

mentally retarded as close to normal living conditions as possible"

(p. 2). The United States has adopted this approach and made it the

primary goal of the Joint Commission on Accreditation of Hospitals

(JCAH): "The facility shall accept and implement the principle of

normalization, defined as the use of means that are as culturally

normative as possible to elicit and maintain behavior that is as cul-

turally normative as possible, taking into account local and subcul-

tural differences" (p. 3). As MacEachron points out, the expectation

of the Americans was that normalized behavior would be a direct result

of placing mentally retarded persons into a normalized environment.

Exactly what constitutes a normalized environment has not been

determined, however, and Lakin et al. (1982) report that the number

of readmissions to public residential facilities has exceeded the

number of first admissions since 1978.

Care of the mentally retarded has become big business. The cost

of maintaining a public institution has risen dramatically since 1970.

According to Lakin et al. (1982), the mean "real cost" (cost converted

to 1967 dollars) of institutional care increased from approximately

$4,000 per resident per year in 1970 to over $10,000 in 1980. Reasons

for the increase include both overall improvements in the quality of

care given as well as the need for more intensive care by the

severely mentally, behaviorally, or medically handicapped individuals

still remaining in the institutions.





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Institutionalization versus Deinstitutionalization


To institutionalize or not to institutionalize? This is a timely

issue and an important one, one which involves hope, guilt, money, and

some very strong feelings: "A long time ago, someone once created a

now-famous motto for an institution for the mentally retarded,

'Happiness First, All Else Will Follow' . an accurate motto for

today might be, 'Business First, and What Else Is There?'" (Blatt,

1981, p. xiii).

The prevailing opinion until recently has been to recommend

institutionalization as soon as a child is diagnosed as retarded, often

on the first day after birth for those with easily recognizable symptoms

such as Down's Syndrome. The rationale has been that an abnormal child

living at home will have a detrimental effect on any siblings and quite

possibly destroy the family.

Additionally, it has been argued that a large, centralized insti-

tution can provide a greater variety and quality of services for the

residents than can a small home. Large institutions, however, too

often become mere "warehouses" for the unfortunate people living there.

Jordan (1985) cited Jerry Rivers' (Geraldo Rivera of ABC's popular news-

magazine show, "20/20") daring 1972 expose which graphically illustrated

this type of "care." He and his crew strapped on cameras and ran through

the wards at Willowbrook State School in New York (now known as the

Staten Island Developmental Center). The resulting film showed what was

truly a snakepit: "conditions more fitting for a concentration camp than

a hospital. Images of helpless children, ostensibly in New York's








benevolent care, but in fact completely neglected, wallowing in filth

and ravaged by one of any number of diseases" (Jordan, 1985, p. 70).

Speaking from personal experience, there is an unmistakable and un-

forgettable stench that one finds in such a ward, a combination of

drool, urine, and feces; and a sound of misery and total isolation.

Ward attendants in such places are often caring people but usually

underpaid, overworked, and therefore relatively powerless to effect

any changes in such an environment.

Duly shocked by such living conditions, public opinion swung to

the extreme in the 1960's (Baroff, 1980) and cried for "normalization,"

declaring that all institutions are terrible and inhumane places and

that the only good placement is in the community in a normalized

environment, where "mentally retarded persons should share the cul-

tural patterns and have the advantages offered to others" (Tjosvold &

Tjosvold, 1983, p. 28). The case of the Pennsylvania Association for

Retarded Children (PARC v. Commonwealth of Pennsylvania, 1971) estab-

lished the rights of mentally retarded children to equal educational

opportunity:

It is the Commonwealth's obligation to place each men-
tally retarded child in a free, public program of education
and training appropriate to the child's capacity . .
placement in a regular public school class is preferable
to placement in . any other type of program of educa-
tion and training. (Meyen, 1978, p. 89)

The battle between pro- and anti-institutionalization proponents

rages, a battle with client welfare, parental emotions, and cost as

the elements. The "Community and Family Living Amendments of 1983"

would "phase out, over a 10 year period, all residential facilities









for the mentally retarded (institutions and other ICF/MR nursing

homes) of 25 residents or more throughout . the United States.

Medicaid (Title 19) funding and residents would be transferred to

community facilities of 15 residents or less" (Sharp & Polson, 1984,

p. 1). This legislation was initiated in 1982 by the National Associa-

tion for Retarded Citizens' resolution that "all people regardless of

the severity of their disabilities, are entitled to community living"

(Sharp & Polson, 1984, p. 2). Such strong anti-institution senti-

ment is not uncommon, as the following piece by Blatt (1981) illustrates:

In the special world of institutions,
One learns the rules only by breaking them,
And is happy if he's not depressed,
With full control when not unhinged,
For he's alive just because he's not dead,
But dead while he lives. (p. 99)

Florida succeeded in reducing the population in its six state

retardation institutions by 47% from 1970 to 1981, with a resultant

census of 3,356 residents (AFSCME, 1984). Deinstitutionalization has

not succeeded as well as it might, however, and client distress, abuse,

and death have resulted. Some clients have been unwittingly moved to

residences of questionable quality. One nursing home chain is under

investigation in at least five states and allegedly has ties with

organized crime. Some homes have been closed because of abuse to

the residents, such as the Jesus Loves You Home for Boys (AFSCME, 1984).

Other residences have been established with the best of intentions but

staffed by people with little or no retardation experience and un-

equipped to address specialized health and behavioral needs. Community









placements are showing an improvement in quality as the state works

through these problems. It is clear, though, that a very real danger

exists when deinstitutionalization becomes a goal to be achieved at

all costs.


Intermediate Care Facilities


The ICF/MR program attempts to provide a healthy, growth-oriented

environment within the institutional setting. Witt (1981) studied

clients in an ICF/MR facility and found significant increases in

adaptive level scores approximately ten months after placement, especi-

ally in the areas of self-help, socialization (development of peer

interaction), and occupation (manipulation of objects and self-initia-

tion of play activities). Bedinger and Miles (1982) found similar

results in a pilot study which compared ICF/MR clients in two facili-

ties at Sunland with clients living in non-ICF/MR cottages at the same

institution. Ellison (1983) found significant gains but an erratic

pattern of growth when thirty-two profoundly retarded women were moved

from a custodial to an ICF/MR unit.

Bible and Sneed (1976) question the value of ICF/MR. They observed

training in a facility before and after a pre-announced accreditation

survey and found an average of only 29.9% and 32.5% of scheduled

training sessions actually conducted on two wards during non-survey

conditions. During the survey, however, 85.5% and 84.5% of training

sessions were run as scheduled. Bible and Sneed suggest that surveys

should be conducted randomly and not announced, and wonder whether









ICF/MR is a cost-effective program or merely a way of providing better

custodial care for clients. Similar findings were reported by Repp

and Barton (1980).

Conroy and Bradley (1981) found that "factors that appear to be

related to client development within the institution are the amount of

day program, the degree of individualized treatment (as opposed to

regimentation in groups) and the number of medications given daily

(the more medication, the less growth). Whether or not a cottage is

ICF/MR certified is not related to client development" (p. 3).

It is apparent that the ICF/MR program is subject to the same

caveat as deinstitutionalization: Better physical plant and budget

do not necessarily insure better resident care and training. As with

any approach to treating the mentally retarded, both positive and

negative results have been found. Conflicting findings and a paucity

of literature indicate a need for further review of the ICF/MR

program.


Community Placement versus Institutional Care


Results of research on the desirability of community placement

have often been contradictory and offer evidence to support both sides

of the issue. For instance, Balla et al. (1974) reviewed studies of

institutionalized children which found decrements in language and

ability to abstract, conceptualize emotional continue, discriminate or

form a learning set. Other studies reviewed by them, however, reported

increases in problem solving autonomy and IQ as well as a normal









developmental sequence of psychological growth, although at less than

one-half that which would be expected based on initial IQ scores.

The Pennhurst decision (Haldernan v. Pennhurst State School and

Hospital et al., 1978) declared that "mentally retarded persons residing

in Pennhurst, a state-operated facility in Spring City, Pennsylvania,

had a right to receive services in the least restrictive setting appro-

priate to their needs, and that these rights had been abridged by their

being institutionalized" (Crunk, 1982, p. 1). The Federal Court claimed

that clients institutionalized at Pennhurst had regressed. Follow-up of

thirty-one mainly severely and profoundly retarded Pennhurst clients

moved into the community after the court order suggested that their

independent functioning skills had shown considerable improvement al-

though causal factors could not be isolated (Conroy et al., 1980).

Conroy and Bradley (1981) summarized five-year longitudinal

follow-up data for clients still remaining at Pennhurst after the

deinstitutionalization order and for those who had been moved to the

community. Rather than regressing, institutionalized clients actually

gained a "very slight amount" in self-care skills.

What becomes evident is that the question of community versus

institutional placement is not a black and white issue as so many would

choose to believe. The assumption that institutions for the retarded

are homogeneous environments and that the needs of all mentally

retarded persons are the same is erroneous. Evidence, as well as

common sense, indicates that not every institution is the same, nor

is each community placement, nor each client or staff person.





-28-


Eyman and Borthwick (1980) found that residents of institutions

are generally more severely retarded and exhibit more problematic

behaviors than do residents in community placements. As a result of

selective admission and release policies, institutional populations

are skewed toward the lower level of functioning. To say that com-

munity placement is necessarily the best placement for all mentally

retarded persons is to make the assumption that such facilities are

equipped with the physical plant and staff to handle such a problematic

population. These assumptions have not been met, nor are many

community facilities willing to accept profoundly retarded clients

or those who have recurrent behavior problems.

Factors such as institution size, pre-institutional history of

clients, staff-client ratio, and staff attitudes affect resident

adjustment and development in any placement. These variables will

be examined to see how each relates to the question of optimal place-

ment for the developmentally delayed.



Institution Size


Are large institutions depersonalizing or do they provide a wider

range of services than are available in the community? The assumption

has been that only a small community residence can offer an acceptable

and humane quality of life. The courts have ruled that mentally re-

tarded persons have "the right to the least restrictive conditions

necessary" (Wyatt v. Stickney et al., 1972) and the right to live in

the "least restrictive setting appropriate to their needs, and that









these rights had been abridged by their being institutionalized" (W.A.

Crunk, communication about Broderick decision, February 9, 1982).

Yet as recently as 1975, Edgerton found that most of the "board

and care" facilities (group homes) he studied in California were "closed,

ghetto-like places" which lacked most services and where "the residents

. . are given to understand, in no uncertain terms, that they can

hope for nothing different in the future. . For most mentally re-

tarded people in this system . the little institutions where they

now reside appear to be no better than the large ones from which they

came, and some are manifestly worse" (pp. 130-131). As cited in Sandler

and Thurman (1981), Butler and Bjaanes described many of the community

facilities they studied as being "socially isolated total institutions

within the community" (p. 392). Smaller is not necessarily better and

in fact can be much worse (O'Connor, 1976).

A "collaboration" rather than "control" approach should "encourage

social support, mutual assistance, and coordination of efforts that

strengthen social skills and learning of most cognitive skills" for

residents (Tjosvold & Tjosvold, 1983, p. 36). Institutions, however,

stress obedience, conformity to routine, and a lack of conflict with

peers (Dentler & Mackler, 1961). Instead of fostering social and

emotional development, institutional social deprivation encourages

residents to be dependent and suspicious (Zigler, 1978), to deceive

and manipulate staff members (Braginsky & Braginsky, 1971), and to

feel helpless (DeVellis, 1977; Veit et al., 1976).

McCormick et al. (1975) studied institutions in this country as

well as in Scandinavia, a country which has a reputation for enlightened





-30-


care of the mentally retarded. They found, predictably, that large

facilities in both countries provide the most institution-oriented and

depersonalized placements but also that Scandinavian practices are

generally more resident-oriented, particularly in the severe units.

The authors offered the following explanations for the difference in

care between the two countries: 1) Scandinavia's policy of normaliza-

tion has attempted to provide a life for its retarded that approximates

cultural norms as closely as possible, including living environment,

social behavior, and freedom of choice; 2) child care is a valued

profession and requires a three-year child developmental training

program involving both class work and hands-on training; and 3) the

best client-staff ratios were found in the severe units. Overall,

though, care practices in both countries were determined by the size

of the institution and not significantly affected by cost per resident,

number of aides, or number of professionals per resident.

MacEachron (1983) found an increase in adaptive behavior one year

after residents had moved into new, normalized cottages at a state

institution. However, the institution was applying for federal fund-

ing and so the newer cottages also provided more programming and

training for the residents than did the control cottages. Whether the

more normalized environment would have been significant in the absence

of the programming requirements is doubtful.

Balla et al. (1974) found response to institutionalization to be

differentially affected by characteristics such as residents' preinsti-

tutional history, sex, diagnosis, and the particular institutional

environment. Out of five social skills variables examined,









responsiveness to social reinforcement was the only factor found to

be significant. Residents were more motivated for social reinforcement

(as measured by total time on task when performance was verbally praised

by the experimenter) in the institution that had subjectively been rated

by the authors as providing the most attention to the residents. They

question their own finding on the basis of previous research (Green &

Zigler, 1962; Stevenson & Fahel, 1961; Zigler, 1961, 1963; Zigler & Balla,

1972; Zigler et al., 1968) which suggests that a socially deprived

environment encourages heightened motivation for social reinforcement.

The authors conclude that their subjective opinion of which institution

provided the most attention to residents was incorrect since those

residents should not have demonstrated the most desire for social

contact. This interpretation is questionable. Research has shown

that social behavior can be reinforced or extinguished (Mayhew et al.,

1978). Behavior theory predicts that an institution which provides

attention to residents will have a high rate of reinforced attention-

seeking responses. However, despite the tenuous nature of their

decreased attention/social reinforcement hypothesis and a question-

nable definition of social motivation, Balla et al.'s conclusion that

smaller is not necessarily better when comparing institution size is

well supported.

Bedner (1974) found that smaller homes foster interpersonal rela-

tionships but Bell (1974) disagrees, stating that friendship between

residents is more likely to occur in larger, more diverse homes where

residents have a better chance of finding a friend who shares their

interests. Landesman-Dwyer et al. (1980) found that staff-resident









interactions did not vary with home size but that the most resident-

resident interactions occurred in medium-size homes of nine to seventeen

residents and the least in small homes of six to eight residents.

Residents of large homes (eighteen to twenty residents) were most likely

to have a "best friend." Effects of group home size were secondary to

variables such as geographic location of the home, heterogeneity of

the residents' backgrounds, and average resident age.

Rotegard et al. (1983) found smaller facilities (less than sixteen

residents) to be more homelike than larger settings, and residents in

homes of five to eight persons most encouraged to be autonomous and

active. It must be noted, however, that the larger facilities had

lower level, more handicapped residents and less satisfied staff mem-

bers. The authors follow a tautological line of reasoning when they

say that higher level, higher functioning clients are more autonomous

and active.

In his review of the literature, Baroff (1980) suggests that size

differences are only important when large, as when comparing a large

institution to a small group home. Within the type of placement (large

central institutions, large and small regional centers, and group

homes), actual size has not been shown to be significant. Seven out

of the eight studies reviewed by Baroff suggest that smaller settings

provide more advantages for residents. The eighth study found no

differences. Community settings may provide more individualized

experience and opportunities for residents, but Eyman et al. (1975)

found that institutional residents enrolled in training programs

showed significantly greater improvement than residents who received






-33-


standard institutional care or former residents who had moved to com-

munity homes that did not provide training.



Pre-Institutional History of Residents


In their 2.5 year longitudinal study of the effects of institu-

tionalization on retarded children, Balla et al. (1974) determined that

preinstitutional social deprivation can significantly affect later

development, as measured by IQ and social responsiveness. While no

overall IQ effects were noted, residents of two of the institutions

studied experienced significant changes in IQ after placement. The IQ

decrease of children who had experienced low degrees of preinstitu-

tional social deprivation suggests that the institutional setting is

less reinforcing in general to children who have had richer pre-

institutional experience. The authors suggest that these children

exhibit behaviors that compete with the motive to be correct during the

testing situation and therefore obtain lower IQ scores. IQ decreases

in children who experienced high amounts of social deprivation prior

to placement are attributed to their motivation to escape the testing

situation. The authors conclude that development after institutional-

ization is a function of both the particular placement as well as the

resident's pre-institutional history of deprivation. The subjectively

rated deprivation levels of the various institutions studied must be

taken into account when interpreting the authors' findings.

In their review of the literature Lemanowicz et al. (1980) found

that residents socially deprived before institutionalization experienced









increases in IQ and social responsiveness after placement. The rate of

growth did not remain steady but lessened as the length of time in the

institution increased. Individuals who have a prior history of

"emotional instability" or "past liability" can be expected to respond

poorly to change (Cohen et al., 1977).



Length of Deinstitutionalization


Clients placed in community homes exhibited more gains in their

adaptive level after one year in the community, especially in their

communication skills, than did controls who had remained in the

institution (Schroeder & Henes, 1978). Gains were most evident shortly

after placement and tended to stabilize with time. The authors question

whether the environment aided in the acquisition of new skills or merely

encouraged more use of already-existing skills, adding that "institu-

tional staff often remark at the amazing disappearance of the

'institutional shuffle' when residents leave campus" (p. 148). While

Macy (1977) found no clear trend between length of time in community

placement and level of independent functioning, his results did support

Coffman and Harris' (1980) contention of an initial "honeymoon"

period after movement to the community followed by an extended adjust-

ment period.


Institutional Factors


In addition to the environmental factors already discussed,

researchers have examined institutionalized residents' response









to the number of staff assigned to a ward, staff attitudes, and

behavior.



Staff-Client Ratio


One or two ward attendants admittedly have a difficult time caring

for a unit of fifteen to twenty clients. If the usual duties of house-

keeping and laundry are also their responsibilities, attendants' time

or motivation for positive interactions, not to mention training, is

limited. The logical solution then is to assign more people to the

ward. Unfortunately, or perhaps fortunately since more staff means

more expense, the solution is not all that easy.

In their 1975 study, McCormick et al. examined staff-client ratio

in terms of both number of aides and number of professionals per

resident and found neither ratio to be predictive of care practices.

The Scandinavian homes studied generally had twice as many clients per

staff member as did the American homes (U.S.: seven to twenty-four

clients supervised by one line-in couple; Scandinavia: fifteen to

fifty-seven clients supervised by one live-in couple) but provided the

same services. Merely increasing the number of staff does not insure

better care for residents. Scandinavian staff utilization practices,

normalization philosophy, and respect for and training of child care

personnel demand more scrutiny if optimal institutional care is to be

provided.

Harris et al. (1974) time sampled a ward at a state institution

and found that increasing the number of aides had no effect on the









amount of formal training and proportion of positive attention given

the residents. Neither have low staff-resident ratios been shown to

increase resident adaptive behavior levels (Grant & Moores, 1977).

Harris et al. did find that aide behavior was more nurturant and

pleasant when fewer residents were present and suggest that assigning

an aide to a specific group of clients would be more effective than

merely increasing numbers of staff.

Blindert (1975) counted an average of less than one staff-resident

interaction per 10 minutes when one employee was present on the ward.

An increased ratio of 2.4 staff to 7.6 residents still resulted in less

than one (0.58) teaching and learning and only 1.94 total staff-

resident interactions per client. Increasing the number of staff

resulted in more staff-staff discussions about extracurricular topics

rather than acceptable staff-resident interaction levels.



Staff Behavior and Attitude


What are staff doing while they are on duty? Less than 1% of their

time is spent in positive interactions with residents (Landesman-Dwyer

et al., 1980). Thormahlen's 1965 study (cited in Dailey et al., 1974)

found that aides spent 2% of their time training self-care skills and 36%

encouraging dependency behaviors. Aggressive and antisocial residents

receive a large proportion of staff attention (Grant & Moores, 1977) while

residents with higher levels of independence and adaptive behavior and lower

levels of maladaptive behavior receive a greater proportion of interactions

that "promote warmth or positive development." In order to encourage staff









interest in each resident, regardless of perceived client attractiveness

or problematic behaviors, Grant and Moores suggest reorganizing units

so that each staff member will be responsible for a definite group of

residents.

Blindert (1975) found "correct" attitudes in the staff he ob-

served, negated unfortunately by their focus on other staff rather

than on training and client-oriented interactions.

Mayhew et al. (1978) conducted an ABAB reversal study in which

attention was alternately given to and withheld from severe-profound

girls in a ward dayroom. Social behavior was found to be dependent on

the experimenter's behavior, suggesting that residents who exhibit

little social behavior may be under a permanent extinction schedule

instead of lacking social skills as has usually been thought. Obser-

vation of the ward six months after the study showed that staff con-

tinued to exhibit resident-directed social actions only about 10% of

the time. Seventy-five percent of their time was devoted to custodial

and housekeeping duties. Warren and Mondy (1971) observed that aides

failed to respond to appropriate resident behavior 75-80% of the time.

Veit et al. (1976) found that aides ignored 30% of all resident-

initiated interactions, and any interactions that did occur were

mainly neutral. Staff members designated and trained as behavior

modifiers spent no more time training than did regular aides (Gardner

& Giampa, 1971).

Dailey et al. (1974) found that aides spent 51.2% of their time

interacting with clients, but that this occupied only 4.2% of the

"average" resident's time and was mainly directed toward those









residents perceived as "attractive, likable and intellectually competent"

(p. 590). This finding agrees with Veit's (1973) that 24% of the resi-

dents received 57% of all attention and further supports the hypothesis

that most residents are on an inadvertent extinction schedule.

Environmental setting can influence staff attitudes (Tognoli et

al., 1978). Egocentric behaviors emitted in a ward dayroom (sitting

alone, watching TV) were rated as being more active by ward attendants

than by psychologists and therapists. Administrative personnel and

ward attendants showed no significant difference in their ratings of

dayroom versus playroom behaviors, the administrators having little

day-to-day contact and the attendants stationing themselves in an

office away from the residents. Tognoli et al. express concern that

differing perceptions of resident behavior may result in programs

not being run as designated since the programs are often written by

therapists but implemented by aides.



Summary


As the literature has shown, life in an institution can be

either positive or negative for the residents. Size alone is not

important; factors such as preinstitutional history and staff number

and characteristics influence resident development.

Conroy and Lemanowicz (1981) have suggested several ways to

encourage resident growth in institutions:

1. Increase day program hours away from the sleeping area;









2. Increase the individualized treatment of clients as opposed to

treatment "en masse" and rigid routines that everyone must follow;

3. Review and decrease medications wherever experienced physicians

deem it safe;

4. Beyond these steps, other actions (such as increasing staff ratio,

getting ICF/MR certification, or meeting the AC/MRDD standards for

programming) are likely to have relatively little effect.

Both research and emotion play a part in resolving the question

of whether or not community placement is preferable to institution-

alization. As the above review of the literature has shown, this is

a simplistic approach to a complex problem and has resulted in a rush

to deinstitutionalize with very tenuous research support. The concern

should instead be one of custodial versus therapeutic care (Kleinberg

& Galligan, 1983), and of the individual characteristics of each client

and potential community placement (Gibson & Fields, 1983). Factors such

as size of placement, number of staff, and budget seem to be foils if

not implemented in coordination with other community or physical plan

characteristics: It is what is happening inside the placement that

the literature says is critical.



Success of Community Placement


Movement of retarded persons from institutional settings into the

community is not a simple matter for the persons involved and, in

fact, can become very difficult for several reasons. Community place-

ments made between 1960 and 1965 had a failure rate of 52% compared with








only 40% failure for the period 1941-1965 (Gibson & Fields, 1983).

Examination of successful placements since 1929 reveals a negative

correlation between success rate and budget, staffing and presumed

quality of programs; i.e., success rates were highest during poor

resource and funding years (and when higher level, well-behaved resi-

dents were being placed). Gibson and Fields suggest that the current

decline in success rate is due to changes in institutional intake policy

and release mandates. Institutional admissions are presently restricted

mainly to the more handicapped individuals, and the pool of residents

who may be considered for community placement is composed of physically,

emotionally, and behaviorally problematic individuals who may have

already failed in the community or who have never been considered

appropriate for placement.



Problems in Community Placements


Group living and foster homes have the potential for providing a

truly homelike, normalized placement for mentally retarded persons.

The fact remains, though, that since 1978 the number of readmissions

to public residential facilities has exceeded the number of first

admissions (Lakin et al., 1982). In the present author's experience,

a disappointingly large number of clients have returned to Sunland

from community placement, often in emotional distress and on heavy

doses of emergency psychotropic medication (drugs which influence

affective, emotional, and behavioral states). For some clients, in

fact, this writer has found that the institution appears to be the








least restrictive environment or at least one in which they experience

less severe emotional stress.

Transition shock (transitional adjustment) should be expected when

a mentally retarded person experiences a major life change, especially

if the change is not voluntary or understood by the resident (Macy,

1983). Response to community placement, while an individual matter,

is additionally influenced by level of retardation (Cohen et al.,

1977). Higher functioning persons tend to become depressed and with-

drawn while lower functioning persons exhibit more behavior, both

appropriate and inappropriate.

Residents have a great deal of personal freedom at Sunland. Most

live in unlocked cottages, go outside at will to visit with others or

play, and have access to the Center bank and store. Movies and dances

are frequent, as are field trips into the community. In addition to a

degree of independence, Sunland also provides a great deal of structure

and behavioral control for the clients. Career staff have known many

of the residents since their placement at the Center many years ago.

Movement to a small community setting often requires a great deal

of adjustment for a retarded person who has been used to a very dif-

ferent type of lifestyle and who may accept change with difficulty.

Community placements are often physically attractive but may have

locked doors because of close proximity to a highway. Clients who try

to go outside as they have been used to doing at the institution have

been branded behavior problems. Unusual behaviors emitted while trying

to adapt to their new home have been labeled schizophrenic.









Motivated and empathic staff working in community placements often

lack the experience necessary to deal successfully with problematic

clients. The structure provided in the community is frequently loose,

the staff have no background knowledge of the particular client, and

inappropriate behaviors may quickly increase in frequency. Communica-

tion between community staff and Sunland has been poor in that often

the first indication Sunland staff have had of a problem is the return

of a client to the Center, frequently after the client had caused a

fairly serious disturbance in the community and required psychiatric

and/or crisis intervention.

The majority of clients who adjust successfully to the community

are very happy there (Sandler & Thurman, 1981) but more than half of

those who return to the institution express a definite preference for

institutional life. One client was happy to return because "the house

manager beat me up when I fed the dogs too much. I couldn't go any-

where. I had to stay in the house. Not allowed to open doors [sic]."

(p. 248). Obviously, one cannot say that community placement per se

is superior to life in an institution.


Factors Involved in Successful Community Placement


Many community placements provide excellent care for their resi-

dents but exactly what constitutes a successful environment has not

been determined. Sandler and Thurman (1981) found a lack of empirical

evidence in the literature and concluded that "philosophical/legal/poli-

tical mandates for community placement have continued to provide the

major impetus for the community placement movement" (p. 245).









Environmental factors

Staff expectations affect resident behavior. Placement in a com-

munity setting may permit use of social, domestic, and communication

skills that have been previously unneeded or unreinforced (Kleinberg &

Galligan, 1983). Campbell (1971), however, found that clients living

in a community placement showed no progress, probably because the staff

did not expect them to do things for themselves. Clients in an

enriched or training community environment show substantial gains as

compared with residents who remain in an institution which does not

provide any special programming or training (Tizard,

1964; Close, 1977). By the same token, clients in an institution who

receive special training are more likely to show progress and continue

to learn than are clients who are moved to a community setting but

receive no special training (Eyman et al., 1975).

Bjaanes and Butler (1974) studied several board and care facili-

ties (thirty to fifty residents) and home care facilities (four to six

residents) and found that the board and care facilities achieved more

closely the objectives of fostering normalization and developing

social competence. More social interactions and independent behavior

were encouraged in the board and care facilities. The authors suggest

that the staff-resident ratio of one to seventeen provided for much

less supervision and structure than did the home care facility ratio

of one to five and permitted more social interactions and independent

behavior to occur. The main finding of the study, however, was the

importance of the amount of community exposure afforded the residents.

Clients at the board and care facilities lived within walking distance









of movies, buses, parks, and a mall. They were basically free to go

where they wanted and were more likely to attempt to conceal their

retardation and history of institutionalization than were the clients

in the home care placements, which were located in suburban areas but

not within walking distance of any facilities or entertainment.

Hull and Thompson (1980) investigated further the question of

optimizing adaptive functioning in a community placement through

manipulation of the environment. In agreement with other research

discussed, the two most important environmental factors identified in

the study were the location of the residence (accessibility to and

from the residence and adequacy of transportation facilities) and the

promotion of socially integrated vocational, educational, recreational,

and social activities. Other important factors were the extent to

which the residents were helped to achieve culturally appropriate

appearance and behavior, and whether the residents were treated by the

staff with courtesy and respect. Interestingly, quality of physical

setting was slightly negatively related to adaptive functioning, i.e.,

residents in homes with somewhat poorer physical plant demonstrated

slightly greater Community Awareness (transportation, budgeting, shop-

ping, cooking, and leisure skills). The authors do not attempt to

explain this finding, but do suggest that merely improving the physical

appearance of a residence is not sufficient to insure successful

community placement. They point out that their findings are based

on cross-sectional research and that longitudinal studies are

necessary to further isolate the factors most important for successful

client adaptation to the community.





-45-


Individual factors

While environmental and staff characteristics are important in

helping an individual adjust to a new home, pre-move interventions

significantly reduce transition shock and thereby enhance the probability

of successful adjustment. In the present emphasis on decreasing

institutional census and moving residents to a (hopefully) more nor-

malized, humane environment, "lost is the realization that the new,

cleaner environment with its additional services, higher staffing

levels, greater individual space and more personal attention represent

dramatic changes that may be perceived as a threat and therefore create

stress" (Macy, 1983, p. 26).

The literature suggests some strategies for preparing institu-

tional residents for community placement: desensitization to the new

neighborhood culminating in visits to the new home, a process used

successfully with four mildly retarded schizophrenics (Dondey, 1982);

slowly increasing demands on new residents (Harris et al., 1981);

instruction for community staff in the institutional teaching methods

and daily schedules (Coffman & Harris, 1980); and involving residents

by having them construct photo albums of both the institution and

their new placement and peers (Williams, 1982).

The issue of institutional versus community placement is a mis-

leading attempt to find an easy answer to a complex problem. Research

studies have so far found answers that satisfy proponents of both

institutionalization as well as deinstitutionalization but there is

substantial evidence that a complex set of factors and interactions

is involved. To say that one setting is preferable to another is to








ignore the individual variables involved in each placement such as

physical plant, number of residents, staff-client ratio, staff

attitudes, availability of training and community resources, and client

individual differences.

The "answer" appears to lie in following a more individualized

approach that takes each person's level of functioning and personality

into account in addition to environmental variables. Ellis et al.

(1981) suggest training those clients who show improvement and working

toward an end goal of improving quality of life through the application

of realistic individualized goals for each individual rather than

enforcing "across-the-board, formal, ritualistic training."

Institutions work with large numbers of residents, a sizable

number of whom are non-communicative. Under such conditions, it is

sometimes too easy to forget that these clients are caring, feeling

individuals. Further research is necessary to determine exactly which

conditions are most likely to provide a dignified life for the

developmentally disabled. The present study will look at some of

those conditions.














CHAPTER III
METHODOLOGY



The underlying hypothesis of the present research was that

retarded persons living in a large state institution will show a

significant increase in adaptive skill level when placed in the struc-

tured training environment of an Intermediate Care Facility for the

Mentally Retarded (ICF/MR). Conversely, persons living in a more

traditional custodial setting at the same institution (non-ICF/MR)

will show little improved development over the same period of time.



Subjects


Subjects were selected from the population at Gainesville Sunland,

a state institution for the developmentally delayed. The 437 sub-

jects include all moderately retarded residents who had lived in an

ICF/MR cottage for three years and severely and profoundly retarded

residents who had lived in an ICF/MR cottage for at least four years

as of January 1, 1984 (see Table 3-1). Less data were available for

moderately retarded ICF/MR subjects because the facilities housing

them had been licensed for less time than the facilities housing the

severely and profoundly retarded ICF/MR subjects. All moderately,

severely, and profoundly retarded residents who had lived in non-ICF/MR

cottages for the corresponding period of time served as control subjects

and their 1979 Social Age (SA) scores were used to correspond with








ICF/MR entry scores. All research was conducted by means of record

review and subjects' names were held in confidentiality.

The 437 subjects comprised 50% of Sunland residents at the time

of data collection. Mildly retarded residents living in the institu-

tion were not included because their numbers were too few to provide

adequate statistical representation. Two ICF/MR cottages (N = 16) were

excluded from the study because the clients living in them are extremely

medically handicapped and not representative of the general population

at Sunland. They require twenty-four hour nursing care and, although

they receive ICF/MR programming services, many are essentially un-

responsive to stimuli.


Table 3-1

Composition of Subjects by Treatment and Level of Retardation


ICF/MR Non-ICF/MR


Moderate 7 (2%) 58 (13%)

Severe 10 (2%) 42 (10%)

Profound 141 (32%) 179 (41%)

Total 158 (36%) 279 (64%)



Instrumentation


Intelligence Tests


IQ tests are administered to Sunland clients every three to six

years depending on the client's age. IQ remains stable for most








residents except for unusual circumstances such as neurological

deterioration or sudden improvement in health or behavior. The IQ

obtained from each client's most recent intelligence test was used in

the present study. The following five intelligence scales are com-

monly used at Sunland:

Cattell Infant Intelligence Scale--A test administered to infants

and children aged three to thirty months, evaluates developmental

status;

Bayley Scales of Infant Intelligence--A developmental status test

similar to the Cattell for ages two to thirty months;

Stanford Binet--An age scale test that presents a series of tasks

designed for each of several age levels ranging from age two

years to superior adult. Emphasis is placed on verbal and com-

prehension skills, especially at the higher levels;

Leiter International Performance Scale--A non-verbal test which

measures ability to match colors, shapes, and concepts;

Peabody Picture Vocabulary Test--A test for ages 2.5 to eighteen

years which measures verbal and pointing skills.

The Wechsler Scales' emphasis on verbal skills makes them un-

suitable for administration to most clients at Sunland. A test which

has items most matched to the individual client's functioning level

and on which he or she can achieve at least a basal score is adminis-

tered. A ratio IQ is then calculated (IQ = CA/MA x 100) rather than

the standardized deviation IQ which has been normed to a particular

chronological age.









Adaptive Level


The Vineland Social Maturity Scale (VSMS) was developed by Doll in

1935 (Doll, 1964) to measure normal adaptive level but is now often

used with retarded populations as well. The VSMS is a 117 item, third-

party interview instrument designed to assess level of functioning in

self-help areas such as eating and dressing, self-direction (primarily

money management), occupation (use of time), communication, locomotation,

and socialization. Information is provided by someone other than the

person being assessed, usually a parent or caregiver. Doll, as cited in

Teagarden (1970), defined children's social maturity as "a progressive

capacity for looking after themselves and for participating in those

activities which lead toward ultimate independence of adults" (p. 575).

The instrument measures skills present from infancy to twenty-five years

and provides a Social Age (SA) and a Social Quotient (SQ). The follow-

ing scale is used at Sunland to assign a level of adaptive functioning:

Social Quotient Classification

69-83 Borderline

52-68 Mild

36-51 Moderate

20-35 Severe

1-19 Profound

The VSMS was developed to measure normal development but is widely

used in institutions for the retarded to provide the measure of adap-

tive level necessary for the two-part AAMD definition of retardation

given in Chapter I. Each client at Sunland is assessed yearly.








The VSMS has proven to be a useful tool but its reliability and

validity have been questioned because of the third-party nature of the

instrument. Items are scored based on the response of possibly biased

and untrained observers, usually cottage staff (Kinder, 1970; Rothney,

1970). Cruikshank (1970, p. 574), however, wrote favorably of the

instrument's ability to provide information on "the results of the

individual's maturational interaction with his social milieu." He

expressed concern about the necessity of relying on an informant but

was satisfied with Doll's insistence that the VSMS be administered

only by clinically trained examiners. This is the case at Sunland,

where administration of the VSMS is conducted solely by trained psycholo-

gists. Teagarden (1970) also found the scale to be a useful clinical

instrument.

Fromme (1974) found a positive correlation between the VSMS and

Stanford-Binet (r = .87) and suggested that the VSMS can be used to

estimate IQ for children above the age of fifty months. A correlation

of .52 between the VSMS and Wechsler Intelligence Scale for Children

(WISC) and the limited nature of Fromme's sample suggest only a very

limited use for the VSMS as an estimate of IQ. Both Teagarden (1970)

and Cruikshank (1970) say that IQ and SQ scores do not measure the

same construct and may differ for the same person. Some lower-IQ

individuals have advanced social skills, especially if raised in a

supportive and instructional environment, whereas the problematic

behaviors of some higher-IQ persons may cause their SQ to be lower than

one might expect.

Doll standardized the VSMS on a sample of 620 normal individuals

which consisted of ten subjects of each sex from birth to thirty years





-52-


(Furfey, 1970). Socioeconomic status was controlled by paternal occu-

pation and all subjects lived in Vineland, New Jersey. Doll showed

that SA continues to increase through adolescence and to the age of

twenty-five when it stabilizes. Doll obtained a test-retest reliability

of .92 for 125 subjects who were reexamined at intervals ranging from one day

to nine months. Bradway,as cited in Furfey (1970), found a test-retest

reliability of .94 for 144 mentally retarded individual retested at

"intervals sufficiently short to preclude growth or deterioration of

competence" (p. 257). Gardner and Giampa (1971) reported an interscorer

reliability of .78 based on reports of two attendants for fifteen

severely and profoundly retarded residents. They reported normally

distributed scores and adequate differentiation within the studied

population. The scores of a team of psychologists, nurse, and ward

attendants who rank-ordered the same residents by estimation based on

their experience with the subjects correlated .89 for the "brighter

residents" (divided according to overall competence), and .62 for the

"slower residents" with VSMS scores, demonstrating that the VSMS has cri-

terion validity for classification of severely and profoundly retarded

individuals.

At Sunland, the psychological staff has agreed upon the interpre-

tation of VSMS items and uses a standard list of modifications which

apply specifically to Sunland clients (e.g., a client who can move his

or her own wheelchair is considered to ambulate independently; see

Appendix A). Each year's VSMS score is compared with those of the

previous years and any discrepancies investigated further to verify

that they reflect true differences in adaptive level rather than

informant/interviewer differences. The scores are considered by the

psychological staff to be reliable and valid indicators of each client's









adaptive level of functioning and to accurately reflect adaptive growth

or lack thereof.

Based on the author's personal experience as a psychologist at

Sunland, the VSMS is an appropriate, reliable, and valid measure of

adaptive functioning when the interviewer is trained in the use of the

instrument and obtains accurate information from the informant. Al-

though the VSMS has received some criticism, it meets validity criteria

and is an appropriate instrument both in practice and for research.

Some subjectivity (error) certainly remains due to the third-party

interview format but is expected to be randomly distributed.



Hypotheses


Review of the literature and the author's experience suggested

the following hypotheses:

H1: ICF/MR subjects will have significantly higher VSMS
scores than non-ICF/MR subjects when grouped by level
of retardation: moderate, severe, and profound.

It is anticipated that ICF/MR clients will make annual gains in VSMS

scores while non-ICF/MR scores will remain stable.

H2: There will be significant differences on VSMS scores
of profoundly retarded ICF/MR subjects according to
their amount of physical handicap.

The presence of major physical handicaps of deafness, blindness, and

non-ambulation is expected to make the acquisition of self-help and

daily living skills for the profoundly retarded even more difficult

than would be the case for a profoundly retarded person who has no

physical disabilities. Persons who are afflicted with two or more

major physical handicaps are expected to show the least progress.









H3: Amount of time subjects were institutionalized before
ICF/MR placement will be negatively related to VSMS
scores.

H4: Age at time of institutionalization will be positively
related to VSMS scores for ICF/MR subjects.

H5: Number of years spent in ICF/MR will be positively
related to VSMS scores.

Residents who have lived longer in the traditional, custodial atmosphere

of the institution before placement in an intensive training program

are expected to show less improvement than persons who have had greater

exposure to the stimulating and normalizing effects of a non-institu-

tional environment. Those who were institutionalized at an older age

will presumably have had more experience in the community which should

allow them to profit more from ICF/MR training. Progress should also

increase as the amount of time spent in the training program increases.



Procedure


Five training and five non-training cottages composed of moderately,

severely, and profoundly retarded residents (N = 178) at Gainesville

Sunland were examined in a pilot study (Bedinger & Miles, 1982) and

significant differences in rate of client adaptive development were

found. Clients living in ICF/MR cottages showed significant overall

improvement while those in non-ICF/MR cottages made little progress.

The present research expanded the pilot to include 437 Sunland

residents. Subjects were grouped by level of retardation, i.e.,

moderate, severe, and profound, since response to training may be

expected to vary among persons of different intellectual capacity.

Profoundly retarded subjects were further grouped by number of major








physical handicaps. Only ICF/MR subjects were represented in this

group due to movement of persons with major physical handicaps out of

non-ICF/MR units into licensed units. Thirty-four (24%) of the 138

profoundly retarded subjects had at least one major handicap and nine

(6%) had two or more.

Differences between groups were examined in order to evaluate the

effectiveness of the ICF/MR program as a whole. Since group data give

no information about a specific individual's response to training, case

studies were written for twelve subjects in Facility III in order to

examine individual differences (see Appendix B). Probable factors

implicated in client progress or lack of progress were suggested. The

ICF/MR Facility III was chosen for the case studies because the author

was personally familiar with the clients' histories since 1980. Sub-

jects were selected by sex and level of retardation so that each

category is represented by two subjects, i.e., two male moderately

retarded subjects, two male severely retarded subjects, and so on.

Selection included subjects who have progressed in the ICF/MR program

as well as some who have failed to show improvement.

Case study information was obtained through record review and

observation. Consent forms were signed by each client's parent/guardian

(see Appendix C).



Design and Analyses

In order to test the hypotheses a 2 x 3 factorial design was

used with an n of 158 for the ICF/MR subjects and 279 for the non-

ICF/MR subjects (N = 437).









A repeated measures design (ANOVA) was used to test differences

between means. Specific hypotheses were then tested using Fisher's

Least Significant Difference (LSD) with alpha at .05 for all tests.

Since the hypotheses of interest were directional and a priori, the

consequences of making a type I error would not be serious.

Correlations between Social Age and age at institutionalization,

length of time institutionalized,and number of years spent in ICF/MR

were calculated to determine whether any of these variables contribute

to the potential success of an ICF/MR placement.



Summary


Subjects living in Intermediate Care Facility for the Mentally

Retarded units at Sunland were expected to show greater improvement

in adaptive level than subjects living in non-ICF/MR units at the same

institution. Within each ICF/MR condition, subjects were grouped by

IQ and the profoundly retarded were further grouped by number of major

physical handicaps. Relationships between Social Age and length of

time institutionalized before ICF/MR placement, age at institution-

alization,and time spent in ICF/MR were studied. Twelve case studies

examined individual differences.

Chapter IV will present the results of the statistical analyses.













CHAPTER IV
RESULTS


Social Age scores obtained on the Vineland Social Maturity Scale

(VSMS) were analyzed over six years to determine whether mentally

retarded persons living in the Intermediate Care Facility for the

Mentally Retarded (ICF/MR) training program at Gainesville Sunland

made significantly more progress than did those living in traditional

care units at the same facility.



Effects of ICF/MR Placement

H1: ICF/MR subjects will have significantly higher VSMS
scores than non-ICF/MR subjects when grouped by level
of retardation: moderate, severe, and profound.

Results of the analyses support the hypotheses of significantly

higher VSMS scores for ICF/MR subjects at all levels of retardation.

Repeated measures effects and the ANOVA interaction for the moderately

retarded group were significant (F(4,252) = 7.19, p < .05 and F(4,252)

= 5.23, p < .05, respectively). Main effects were not significant

(see Appendix D). Further analysis revealed that only the ICF/MR

subjects made significant gains (Fisher's LSD (1,2) = 3.78, p < .05;

see Figure 4-1). The control subjects showed no significant improve-

ment either before or after unitization.

Severely retarded subjects showed significant effects for repeated

measures (F(5,250) = 7.62, p < .05) and interaction effects (F(5,250 =



















10 -----------------------

/

4--

ENITRY ICF/1'IR YEARl YEAR YEAR3
o ICF/MR NON-ICF/MR


Figure 4-1. Moderately retarded
subjects.


5' ~---- -E---


4- 43


ENTRY ICF/,' YEARl YEAR YEAR3 YEAR
o ICF/MR NON-ICF/MR


Figure 4-2. Severely retarded
subjects.









3.58, p < .05). Main effects were not significant (see Appendix E).

Only the ICF/MR subjects made progress during the four years following

ICF/MR placement (Fisher's LSD (1,4) = 3.49, p < .05). The control

subjects progressed significantly during the period between initial

VSMS score at Sunland and entry to ICF/MR (1979 score for control sub-

jects) (Fisher's LSD (1,36) = 3.58, p < .05) but they made no signifi-

cant progress during the following years, including the post-unitization

year.

All effects at the profoundly retarded level were significant (see

Appendix F): main effects (F(1,318) = 19.10, p < .05); repeated

measures (F(5,1590) = 45.31, p < .05); and the interaction of the two

(F(5,1590) = 16.14, p < .05). Progress for both the ICF/MR and control

subjects was significant during the period between their first VSMS

scores at Sunland and entry to ICF/MR (1979 score for control subjects;

Fisher's LSD (1,135) = 3.66, p < .05 and (1,173) = 6.39, p < .05,

respectively) but only the ICF/MR subjects made significant progress

during the four years following ICF/MR admission (Fisher's LSD (1,135)

= 8.97, p < .05; see Figure 4-3). Progress for the year following

unitization was significant for the control subjects (Fisher's LSD

(1,173) = 3.09, p < .05).

The gain in Social Age scores for moderately retarded ICF/MR sub-

jects was 1.74 (23%), for severely retarded subjects 1.19 (30%),and for

profoundly retarded subjects .49 (25%).






-60-


a ICF/MR


* NON-ICF/MF


Figure 4-3. Profoundly retarded
subjects.


SENTRI ICF/'M YEAR YEAR YEAR YEAR
o 0 HANDICAP 1 HANDICAP
x 2+ HANDICAPS


Figure 4-4. Profoundly retarded handi-
capped ICF/MR subjects.


_I -h----B
_-


0_-x


EcTR ICF/'ER YER2 YEfR3 YER4


EU(TRY I~CF/ri Y'EfIR YrEAR2 YE~R3 YEAR41


-e
-----
2- -





-61-


Effects of Handicap Conditions

H2: There will be significant differences on VSMS scores
of profoundly retarded ICF/MR subjects according to
their amount of physical handicap.

The hypothesis of differences in VSMS score based on number of

major physical handicaps was supported. Significant omnibus effects

(see Appendix G) were found (F(2,135 = 11.94, p < .05) as well as sig-

nificant repeated measures effects (F(5,675) = 22,02, p < .05). There

were no significant interaction effects. Subjects with no and with one

major handicap made significant progress during the four years after

their admission into ICF/MR (Fisher's LSD (1,89) = 9.5, p < .05 and

(1,28) = 6.28, p < .05, respectively; see Figure 4-4), but subjects

with two or more handicaps did not make significant progress. The only

group that made significant progress before their placement into

ICF/MR was the no handicap group (Fisher's LSD (1,89) = 5.16, p < .05).

After four years in ICF/MR, profoundly retarded subjects who had

no major handicaps showed a SA gain of .5 (23%); subjects with one

major handicap gained .55 (31%); and subjects with two or more major

physical handicaps gained .24 (25%), compared with the overall gain

of .49 (25%) for all profoundly retarded ICF/MR subjects.



Relationships Between Social Age and
Demographic Variables

H3: Amount of time subjects were institutionalized before
ICF/MR placement will be negatively related to VSMS
scores.

H4: Age at time of institutionalization will be positively
related to VSMS scores for ICF/MR subjects.









HS: Number of years spent in ICF/MR will be positively
related to VSMS scores.

Level of retardation was found to be related to SA, r = -.62,

accounting for approximately 36% of the variance (see Appendix H). The

negative nature of the correlation is due to the level of retardation

classification system, i.e., moderate retardation = level 3, severe

retardation = level 4, and profound retardation = level 5. The results

verify that less retarded persons exhibit a higher level of adaptive

skills than do those who function at a lower intellectual level. No

other correlations were significant (see Appendix I) and the hypotheses

for effects related to length of time institutionalized before ICF/MR

placement, age at institutionalization, and time spent in ICF/MR

were not supported.



Summary

Results of the analyses supported hypotheses for differences due

to ICF/MR placement and handicap conditions. The ICF/MR subjects con-

sistently made progress while non-ICF/MR subjects failed to do so, and

subjects with fewer major physical handicaps responded better than

those with more handicaps. Relationships between Social Age and the

demographic variables were not supported.

Chapter V will discuss the above results and their implications

for the ICF/MR program and for education.














CHAPTER V
DISCUSSION



The results of the present longitudinal study demonstrate that

the residents of the Intermediate Care Facility for the Mentally Re-

tarded (ICF/MR) training program at Sunland Center Gainesville have

made significant adaptive growth.



Effects of ICF/MR Placement


Subjects at all three levels of retardation studied, moderate,

severe, and profound, made significant progress while in the ICF/MR

program. Although moderately retarded subjects experienced no change

in Social Age (SA) after their first year in the program,progress

thereafter was dramatic, with an SA gain of 1.82 over the next two

years as compared to a gain of only .17 during the same time period

for the control subjects. The lack of progress noted for the initial

period following ICF/MR placement may be due to the fact that most of

the higher level clients at Sunland have been placed in the community

and many of those still in the institution remain there because of

problematic behaviors that make them poor candidates for successful

community living. The year following ICF/MR placement seems to have

been necessary to bring some of the maladaptive behaviors under enough

control to permit existing skills to manifest themselves and new skills









to be learned. This pattern was evident for three of the four

moderately retarded clients studied individually, EF, KL, and MN (see

Appendix B, Case Studies 3, 6, and 7). Severely retarded ICF/MR sub-

jects made significant progress every year after ICF/MR placement but

none before, attesting to the effectiveness of the training program.

Individual differences in ability and intelligence exist within

levels of retardation. A blind, deaf, and medically involved person

who is profoundly retarded is distinctly different than a profoundly

retarded person who has some speech, can feed and dress himself or

herself, and participates in social activities. Profoundly retarded

ICF/MR subjects were therefore grouped by number of major physical

handicaps and distinctly different results were found at each level of

handicap. Profoundly retarded subjects who exhibit no major physical

handicaps consistently function at a higher level than those with one

major handicap, who in turn function more fully than those with two or

more major handicaps, the only group not to make significant progress.

Three factors must be taken into consideration in interpreting

the lack of progress for ICF/MR subjects with two or more major

physical handicaps. First, no comparable control subjects were avail-

able for this group since all clients with major handicaps live in

ICF/MR. It is not possible to say, therefore, how this group would

have scored had they not been receiving the structure and training pro-

vided through the program. Secondly, is their non-significant gain of

.24 over five years (as opposed to .55 and .50 for profoundly retarded

with one and no handicaps, respectively) an indication that they have

not profited from the program, or is it instead important that they

have not regressed? In a population so severely handicapped, relative









stability may be the most realistic and desirable expectation. It must

be remembered, too, that group statistics combine data and that not

every handicapped individual failed to make significant progress.

Thirdly, the VSMS is not sensitive to small changes in skill level

since it only credits complete behaviors rather than individual com-

ponents. A multiply handicapped client may have learned some of the

different steps in a skill but not enough to warrant an increase in

Social Age.

With some exceptions, results for control subjects were not sig-

nificant. Adaptive growth for moderately retarded control subjects

remained stable across the entire period studied. Both severely and

profoundly retarded control subjects made progress during the period

between entry to Sunland and ICF/MR placement (1979 SA score for con-

trol subjects) but none afterward, raising the question of whether

they had reached their maximum growth or whether continued traditional

placement in fact inhibited growth. Only the profoundly retarded con-

trol subjects made significant progress during the 1982-1983 year

after the Center reorganization. Although their gain was statistically

significant, the large number of subjects (n = 179), the previous

downward trend (see Figure 4-3) and the gain of only .15 during this

year caution against attaching too much importance to this finding.

In theory, the reorganization that occurred at unitization should

have provided equal services to both ICF/MR and non-ICF/MR units. In

actuality, it appears that care remained unequal. At the time of

unitization in November, 1982, staffing in both ICF/MR and unlicensed

units was equalized except that no housekeepers were assigned to









non-ICF/MR. All cottages were then expected to provide identical

services for their residents. The lack of housekeepers has made

self-care and daily living skills training more difficult in non-ICF/MR

because the direct care staff assigned to these areas are responsible

for custodial duties as well as training. Additionally, unlicensed

facilities frequently have more staff vacancies and provide less regular

training services for their residents because of ICF/MR licensure

priorities. Even though increasing the number of staff does not

necessarily insure improved client services (Blindert, 1975; Grant

& Moores, 1977; Harris et al., 1974), there is a minimum staff

requirement below which the provision of training services is extremely

difficult.

Physical plant differences continue to exist between the two

halves of the Center as well. The ICF/MR cottages were all renovated

to meet licensure standards and are attractive living units with a

census cap and a degree of privacy for their residents. Non-ICF/MR

cottages retain the traditional large, open dormitory wing and day room.

They have no census restrictions and are frequently crowded. Since

non-ICF/MR facilities have more clients but the same number of staff

positions as ICF/MR facilities, they have a higher staff-client ratio.

Noisy, crowded conditions, a higher staff-client ratio, and fewer

structured training and leisure activities undoubtedly contributed

to the control subjects' lack of progress.

Despite restricted resources, there is an admirable staff attitude

on many unlicensed cottages. The pressure to meet ICF/MR standards

under less than ideal conditions has served as a motivator to many





-67-


staff who feel that the extra effort required to provide services

results in better overall quality of life for the residents. On the

other hand, many employees who do not believe in training for mentally

retarded persons have gravitated to non-ICF/MR facilities.



Initial Differences Between Groups


Initial VSMS scores at Sunland were higher for severely and pro-

foundly retarded control subjects than for comparable ICF/MR subjects.

There does not appear to have been any one formal and purposeful de-

cision to place lower-functioning clients into ICF/MR but non-random

placement did apparently occur due to logistical and other reasons.

The first facility to be licensed at Sunland was composed of profoundly

retarded residents who were felt to be the most neglected (J. Bartley,

personal communication, February 26, 1985), which skewed the data

toward the severe-profound level of functioning. Clients who are

functioning at a perceived adequate level are not usually referred

to ICF/MR. Those who are referred generally score at a lower level

because of handicaps or problematic behaviors which interfere with

functioning level. The fact that severely and profoundly retarded

ICF/MR clients initially had lower scores and made significant gains

over time, often surpassing the level of the control subjects, sup-

ports the strength of the program and its applicability to all types

of clients rather than only to well-behaved individuals who exhibit

a willingness to learn.

Very high level clients were not placed in ICF/MR because their

adaptive skills were already considered to be at a functional level









and their days were structured with vocational training assignments.

Scores for these clients did not influence the sample since the mildly

retarded were excluded from the study design.



Relationships Between Social Age and
Demographic Variables


Relationships between Social Age and demographic variables were

not found to be meaningful. Lemanowicz et al. (1980) found that growth

lessened as the number of years institutionalized increased but the

present study found no relationship between SA and number of years

spent at Sunland before placement into the ICF/MR program. Residents

who have lived in the institution for many years are as likely to

benefit from ICF/MR placement as those persons living at Sunland only

a few years. Lemanowicz et al.'s finding that socially deprived

persons' growth increases after institutionalization would suggest

that clients who spent more time in traditional care units at Sunland

before being moved to the ICF/MR program would show more progress than

clients who had not been as "socially deprived" prior to entering the

program. Balla et al. (1974), on the other hand, found that children

less deprived before institutionalization showed more development

after 2.5 years than did the more deprived children. Results of the

data and the case studies showed no relationship between the two

variables and support neither of the two studies mentioned. Eyman et

al. (1975) found that older, mildly retarded individuals made more

adaptive gains than did younger or more severely retarded residents

living in community homes. Chronological age of Sunland clients was









not found to be related to adaptive gain. More interestingly, age at

placement into ICF/MR was not significantly correlated with SA.



Implications for ICF/MR


The funding and licensing of an ICF/MR unit does not in itself

guarantee adequate service delivery to retarded residents (Bible &

Sneed, 1976; Conroy & Bradley, 1981; Repp & Conroy, 1980). This study

demonstrated that the ICF/MR program at Sunland Center is effective and

that ICF/MR residents consistently made progress and give every indica-

tion of continuing to do so. Studies which have found ICF/MR to be

ineffective have concentrated on the lack of resident training provided

during non-survey periods (Bible & Sneed, 1976; Repp & Barton, 1980).

Although state and federal surveys are unannounced as suggested by

Bible and Sneed, this fact alone is probably not enough to sustain the

intense level of activity necessary during the months between visits.

The in-house monitoring system at Sunland was established to insure

that services are provided as scheduled. Surveys by the in-house

Quality Assurance Team and monthly self-monitoring by facilities

appear to be responsible for much of the success of the program at

Sunland. The ICF/MR standards and accountability are taken very

seriously and every effort is made to operate at a consistently high

level of performance. There is a point, however, at which reliability

checks become so cumbersome that they may interfere with the actual

delivery of services they are supposed to insure, and care is needed

to avoid reaching this point. Overburdened and underappreciated staff

will "burn out" and both the program and clients will suffer.









Staff performance is of primary importance in insuring client

progress and compliance to licensure standards. Merely increasing the

number of staff assigned to a unit does not guarantee appropriate ser-

vices for the residents (Blindert, 1975; Grant & Moores, 1977; Harris

et al., 1974; McCormick et al., 1975), nor is the amount of actual

training provided to staff sufficient in itself (Gardner & Giampa,

1971). The value placed on staff efforts (McCormick et al., 1975) and

the assignment of specific clients to staff so that all residents re-

ceive individualized attention (Grant & Moores, 1977) are also impor-

tant. Studies of CD, IJ, KL, and KF (see Case Studies 2, 5, 6, and

8) illustrate the strong effects of individualized attention. Priority

must be placed on hiring well-motivated, intelligent staff and then

giving them the support and appreciation necessary for job fulfill-

ment.

The findings of this study do not support any selective policy

for resident selection. The range of intellectual, adaptive, and

physical functioning levels is so diverse in the developmentally de-

layed population that it would be extremely difficult to arrive at a

consensus of exactly who will or will not benefit from training. In

addition to basic variables such as intelligence and number of handi-

caps, intangible factors such as willingness to learn and responsive-

ness to structure and contingencies are important in determining a

person's appropriateness for placement in an intensive training pro-

gram. This type of information should be obtained from the resident's

Interdisciplinary Team, which is most familiar with each client's

response to a high-stimulation/demand environment.









It does appear, though, that the most unresponsive to training

are those residents like CJ (see Case Study 9) whose mental retardation

is complicated by psychosis. Persons in this category are frequently

unresponsive to their environment and respond inconsistently, if at

all, to reinforcers and contingencies. Additionally, the intense and

unpredictable nature of their behavior often poses a substantial threat

to the safety of both peers and staff. An intensive training facility

with tight control over the environment can be effective for some

persons whose thought processes are loosely grounded in reality, as

with AB, CD, MN, and RW (see Case Studies 1, 2, 7, and 10) but it can

also exacerbate the situation.

Intellectual or adaptive growth, while important, cannot be the

only criteria for success. Intangible factors also influence client

progress. Social progress will often signal concurrent growth in

formal programming areas and maladaptive behaviors often improve

without formal programming under such conditions, as was the case with

CD, IJ, and KL (see Appendix B, Case Studies 2, 5, and 6). Conversely,

improvement of problematic behaviors often permits training progress,

as happened with EF and GH (see Case Studies 3 and 4). Given the

complex nature of behavior, a holistic approach is necessary to address

each individual's strengths and weaknesses.

The lack of progress of the multiply handicapped profoundly

retarded subjects speaks to the question of "heroic efforts" and the

cost benefit of attempting to train multiply handicapped and un-

responsive persons in traditional areas such as self-care, motor and

basic academic skills (Bailey, 1981). Efforts (and funds) may be









better directed toward "stimulation programming" to prevent regression

rather than toward "teaching programming." Such an approach would

also free some trainers to concentrate on higher-level clients who

have been shown to benefit from such attention and who are not now

receiving the additional training.



Implications for Education


This study demonstrated that moderately, severely, and profoundly

retarded persons respond to an intensive training regimen which employs

basic principles of learning theory. Residents not participating in

the program maintained their level of adaptive functioning in the

absence of special training but showed little overall progress. The

success of non-punishment contingency management in decreasing inap-

propriate behaviors suggests that, with students of normal intelligence

who possess verbal and conceptual skills far advanced over those in

this study, similar behavioral intervention will be effective in lieu

of corporal punishment.

The ICF/MR program operates under strict guidelines which insure

delivery of similar services to all residents. This uniformity serves

a quality control function but can become stifling. As demonstrated

by the case studies, most students benefit from a somewhat individual-

ized instruction approach.

The actual number of available instructors/staff does not neces-

sarily affect learning unless the staff are properly trained and

motivated. Mandating a particular educational approach or adding

more teachers or aides to the classroom may be ineffective unless









measures exist to insure that instruction is being delivered correctly.

In conjunction with accountability and monitoring, care must be taken

to respect instructors' skills and allow them freedom to work.



Limitations of the Present Study


Control subjects were unavailable for the multiply handicapped

profoundly retarded condition since all residents who met these criteria

resided in ICF/MR units. The significance of their limited progresses

was thus difficult to assess but nonetheless suggests that they have

benefitted from the program. Control subjects were available for all

other groups.

The Vineland Scale of Social Maturity (VSMS) has been criticized

because of its nature as a third-party interview instrument. Although

the VSMS can be criticized for reliability, so can any other standardized

measure of adaptive or intellectual level which is used with a develop-

mentally delayed population. Effects of examiner familiarity, client

health, responsiveness, and problematic behaviors all influence test

results. The VSMS was felt to be an appropriate instrument for this

study because of its administration at Sunland by select and trained

examiners, the specific interpretive criteria which have been

developed for Sunland, and the relative consistency of client scores

from year to year. Although the use of the VSMS has been criticized,

it has also been supported and the interview nature of the instrument

is not seen as more than a very minor limitation.





-74-


Suggestions for Additional Research


A review of the literature discloses a paucity of research on

the effectiveness of the Intermediate Care Facility for the Mentally

Retarded program. Reported studies suggest that this expensive national

program has great potential but lacks consistent implementation. Pro-

and anti-deinstitutionalization proponents continue to search for the

one optimum placement for developmentally delayed individuals. This

author's opinion is that a combination of services and placement, both

institutional and community, will probably always be required due to

the extremely diverse population under consideration. The ICF/MR pro-

gram can play an important role in correctly placing these persons.

Even assuming that community placements were without fault, a

patently false hypothesis, 1,015 mentally retarded clients in Florida

alone were waiting for residential placement as of December, 1984, and

many will remain on the waiting list for three or four years before an

opening becomes available ("More Help Needed," 1984, p. 14-A). Additionally,

the Reagan administration has questioned the Pennhurst decision and

argued that "the mentally retarded have no federal right to training

that would develop their capacities to the fullest extent possible and

no right to community living arrangements" and that they are entitled

only to "freedom from unreasonable bodily restraints and to such

training as is required to reduce the need for bodily restraints and

promote physical safety" ("Administration Argues," 1984, p. 5-A).

Empirical evidence is necessary to support policy decisions by

those in positions of authority but current research is often









contradictory. Longitudinal data and objective measures of growth

can provide the necessary information. Several useful instruments

exist to measure environmental and individual characteristics objec-

tively including the Program Analysis of Service Systems (PASS), the

AAMD Adaptive Behavior Scale (ABS), and the 1984 revision of the VSMS.

Conroy (1979) has outlined theoretical dimensions of quality and

operational measures of quantity which may serve as useful research

guidelines. Criteria such as "wariness" are interesting but vague, do

not allow comparisons between studies and institutions, and do not

provide positive guidelines for future placement of and delivery of

services to residents. Personality and mental health characteristics

are important in predicting an individual client's response to training

strategies but must be objectively defined and replicable when used as

data bases for research.

The poor response of some mentally retarded psychotic residents

to ICF/MR placement indicates a need for research in this area. Effec-

tive placement for persons suffering from both mental retardation and

mental illness remains to be established. Is their behavior more

functional in an environment geared toward treating the mentally re-

tarded or the mentally ill? Effective strategies for working with

dually diagnosed persons who are essentially unresponsive to con-

tingencies are badly needed.

Social Age gain for non-ICF/MR Sunland clients during the year

following unitization was not significant. Further follow-up is

needed to determine whether the lack of growth under presumed improved

living and training conditions was temporary and possibly due to









initial adjustment factors, either client or staff, or if the inter-

vention will indeed be effective. If non-ICF/MR subjects' growth

begins to equal that of their ICF/MR counterparts, the argument may be

presented that the expense of ICF/MR is not necessary in order to pro-

vide a healthy environment. It must be remembered, however, that

non-ICF/MR units at Sunland operate under close to ICF/MR standards

and as such are more expensive than traditional custodial units.



Conclusion


Moderately, severely, and profoundly retarded individuals respond

well to intensive training and structure, progressing both in adaptive

skills and appropriate behaviors. The Intermediate Care Facility for

the Mentally Retarded program at Sunland Center, Gainesville, provides

an environment that is capable of producing such growth. Neither

traditional care practices nor improved care after unitization pro-

duced significant progress.

The ICF/MR program is intensive and expensive but is designed to

be an intermediate program step between institutional and community

placement rather than a permanent living arrangement. Instead of con-

tinuing the institutionalization-deinstitutionalization battle,

emphasis should be placed on locating the most appropriate placement

for each individual resident. Attention must be paid to diminishing

transition shock and improving client adjustment to the community (and

community adjustment to the client) so that community placements will

be successful and return to the institution unnecessary. In conjunction









with improved adjustment skills, an adequate number and quality of

community residences must be established so that ICF/MR clients who

have developed appropriate skills can be moved out of the institution.

Such development of resources will utilize the ICF/MR program according

to its goals, will depopulate the institution and reduce crowded

conditions on remaining cottages, and should lower the cost of running

the institution as the census is lowered and fewer support services are

required. In this way, those residents who have adequate functional

skills and behavior for community living will profit from a non-

institutional environment while those residents who continue to require

more intensive treatment for whatever reason, medical, functional, or

behavioral, will remain in the institution.

"Many of the problems that we're called in to treat are the re-

sult of living in pathogenic environments" (Risley, 1982, p. 3). Fac-

tors relevant to client development in an institution include the

amount of day programming, degree of individualized treatment, and

number of (psychotropic) medications prescribed (Conroy & Bradley,

1981). Given the results of the present study, it may be said that

the ICF/MR program at Sunland has greatly modified the traditional

institutional setting to provide a healthy environment and one which

meets Conroy and Bradley's criteria. The "snake pit" has been tamed.














APPENDIX A
CLARIFICATIONS ON VINELAND SOCIAL MATURITY
SCALE SCORING



Item Number Clarification

4 What behaviors are included in "reaches for familiar
Soc persons"?

If the client differentiates family from strangers and/or
reacts differently to different staff members, score +;
if not, score -. "Reacting" means initiating a response.

7 Does "occupies self unattended" include self-stimula-
Occ tion?

If the self-stimulation is not harmful, score +; if it
requires intervention, score +.

10 Which sounds are included in "imitates sounds"? Are self-
Comm stimulatory sounds, noises, and crying included?

Only sounds with speech-like inflections should be
scored +.

14 What behaviors indicate "demands personal attention"?
Soc
A primary criterion is that the client must initiate the
behavior. In the case of a severely handicapped client,
following staff member with eyes might be sufficient.

18 How is "walks about room unattended" scored for non-
Loc ambulatory clients?

It should be scored + for a client who is wheelchair
mobile; any level of mobility below this is scored -.

22 How liberally is "transfers objects" interpreted?
Occ
This cannot be hand-to-hand transfer of objects in a
manipulative manner only; the behavior must indicate
purposeful placement of an object. The placement of a
piece in the form board is scored +.









26 "Gives up baby carriage." How do we score this for a
SHG wheel chair client?

If the client is wheel chair mobile, score +; if he is
partially mobile, score +.

30 Is food on the floor an "edible substance"?
SHE
Score + if client does not eat trash, whether or not he
eats food off floor.

33 How do we score "unwraps candy" if client is never given
SHE wrapped candy?

If there is really no opportunity, score NO. If client
peels a banana or opens a bag of chips, score +.

34 "Talks in short sentences."
Comm
Speech must be meaningful and must combine at least two
words to be scored +; size of vocabulary is of less
importance.
If speech occurs only occasionally and/or only in response
to specific persons, score +.

35 "Asks to go to toilet."
SHG
This should be scored strictly according to the VSMS
manual.

36 Does "initiates own play activities" include watching and
Occ reacting to TV?
Does it include playing with string or non-toys?
Does it include self-stimulation?

Score + for both active watching of TV and playing with
non-toys.
Score for self-stimulation.

38 "Eats with fork."
SHE
This item will have to be scored NO for clients on many
cottages.

39 Does "gets drink unassisted" include use of water fountain?
SHE Would it include drinking from the commode?

Score unassisted use of water fountain +; score drinking
from commode -.









41 Many of these "simple hazards" do not occur in the Sunland
SHG environment. Would "hazards" include an angry client?

Group Reached no firm conclusions, but felt (1) this did
not include avoiding another client and (2) staying out of
the street is important, but not definitive.

43 How liberally do we score "cuts with scissors"?
Occ
If possible, we should give the client a trial with
scissors and/or get a fairly detailed report. On this
item use NO liberally.

45 Should client receive credit for "walks downstairs one
Loc step per tread" without assistance if he uses the stair
railing?

In scoring this item, do not count use of railing as
assistance.
If client is handicapped and can get downstairs alone in
any manner, allow I credit.

46 Must the client know and observe the rules of the game in
Soc order to receive credit for "plays cooperatively at
kindergarten level"?

This item does not include knowing and/or observing rules.
The item is scored + if the game is supervised by an adult.
The item is scored + if the client plays with one other
person in an organized manner.

49 "Performs for others."
Soc
To be scored +, the performance must be either carried out
by request and/or be clearly intended for the entertainment
of others.

50 "Washes hands unaided."
SHD
This item may be scored + if the client requires verbal
reminders and/or cues, but should be scored if he re-
quires physical assistance.
The item does not require that the client adjust the water
temperature.

51 "Cares for self at toilet."
SHG
If the client cares for himself completely in toileting
except for the use of tissue and tissue is not available,
score this item +.









52 "Washes face unassisted."

As in item 50, the item should be scored + if the client
requires verbal reminders and/or cues, but should be
scored if physical assistance is required.

53 "Goes about neighborhood unattended."
Loc
If the client goes to any off-cottage activity unattended,
this item is scored +; if he must be observed all the
way, score +.

54 "Dresses self except tying."
SHD
Client should receive no credit for this item if he dresses
with slip-on type clothing only; to receive credit, his
dressing skills must include fasteners.
NOTE: If item 47 is -, this item must be -.

56 "Plays competitive exercise games."
Soc
Examples of activities at Sunland which should be scored
+ are Special Olympics, kick ball games, and throwing a
basketball with other clients.

57 "Uses skates, sled, wagon."
Occ
If item 53 is scored + and the client rides a bicycle or
tricycle around campus, score this item +.

59 "Plays simple table games."
Soc
Activities scored + will include card games, table games,
and pool games.

60 "Is trusted with money."
Self-
Dir Score this item + if the client can be trusted to take
his own money or someone else's money and buy items at
the canteen.

61 "Goes to school unattended."
Loc
This item should be scored + if item 63 is + and the
client goes from one place on campus to another place on
campus three or more blocks distant unattended and
unwatched.
All clients acting as messengers around campus should
receive + score.









62 "Uses table knife for spreading."
SHE
If client does not have access to a knife and uses a spoon
for this purpose, score +.

64 "Bathes self assisted."
SHD
"Assistance" may be verbal cues, setting water tempera-
ture, shampooing.
To score + client must soap and rinse all body parts with
no physical assistance.

65 "Goes to bed unassisted."
SHD
In the Sunland environment, this is scored + if client gets
into his own night clothes without assistance and goes to
his own bed.

67 "Uses table knife for cutting."
SHE
This is to be scored + only if item 62 is +.

68 "Disavows literal Santa Calus."
Soc
If possible, ask the client if Santa Claus is a real per-
son and score accordingly.

69 "Participates in pre-adolescent play."
Soc
To score + on this item, the activity (1) must be client
initiated and/or be carried on without adult leadership,
(2) must involve purposeful activity, and (3) must involve
physical activity.

71 "Uses tools or utensils."
Occ
Occ The "tools" may include broom and mop.
The item is scored + only if the client habitually uses
more than one tool.
Client should not receive credit for Sheltered Workshop
activities if he does not use tools in other settings.

72 "Does routine household tasks."
Occ
This item is scored + even if the client requires some
verbal prompts.
If client performs one cottage chore only, allow I credit.






























APPENDIX B
CASE STUDIES













CASE STUDY #1


Demography


AB is a twenty-five year old black male who has been diagnosed

autistic. His mental retardation is related to premature delivery

and his IQ, as obtained on the Stanford-Binet Form LM, is 13 (Profound

level of functioning). He has no physical handicaps other than early

cataracts, which do not seem to interfere with his daily functioning.

He has lived at Sunland since the age of eight and was moved to his

present ICF/MR cottage at the age of twenty-one.

AB engages in high levels of self-stimulatory physical activity

and requires a high calorie diet just to maintain his weight. He is

a somewhat picky eater and eats in "patterns," e.g., will eat around

and around the edge of his mashed potatoes until they are consumed.

He ruminates after meals (regurgitates and re-eats his food) but the

duration of each incident is short and thus no dental, medical, or

dietary problems have resulted.

AB is very muscular and fit, undoubtedly due to frequent and

vigorous self-stimulatory rocking and bouncing. He is extremely well

coordinated and, when upset, will sometimes run "full speed" at a wall,

turn 1800 at the last moment and then hit the wall very solidly with

his back. Other autistic behaviors he exhibits include twirling a stick

in front of his eyes, smelling objects, and stretching the bottom









front of his t-shirt so that it will billow in the air as he moves it

up and down. AB has a short attention span when engaged in anything

except self-stimulatory behavior, and does not initiate contact with

others.


Behavior


AB engages in self-stimulation during most of his unscheduled

time but has also exhibited some more serious behaviors. He previously

urinated and masturbated outdoors but now performs these activities

in more appropriate locations. In February 1983 he began to masturbate

excessively (from 1 1/2 to 5 hours per night). This behavior continued

during the day as well and posed a threat to his well being since he

was sleeping very little. He was referred to psychiatric clinic and

Tofranil was prescribed. The intervention was successful and there

have been no further reports of the behavior occurring excessively.

AB once had frequent, sometimes daily, tantrums but his behavior

has shown great improvement since he and his cottage mates have been

able to eat in their own dining room rather than in the central dining

hall. The central dining hall is noisy and chaotic and AB often became

very agitated, jumped up and down, and bit himself. These behaviors

stopped once he was able to eat in a calmer atmosphere and no longer

had to wait in line to obtain his food. Presently he becomes upset

only about twice per month; some tantrums are attributable to displeasure

with events and others occur for no apparent reason.

Mellaril was prescribed in 1969 to help control AB's behavior

but was discontinued in 1982 when he was diagnosed autistic. The









consulting psychiatrist prescribed Haldol (1 mg twice daily) based on

work which claimed some success treating autistic symptoms using small

doses of Haldol. AB appears to have responded to this regimen and has

become slightly more responsive to staff, sometimes going into the

cottage manager's office to look at magazines. Personal contact remains

infrequent, however, and most interactions or training responses center

around food. He does respond better to staff interruption of his self-

stimulation and will now frequently sit in a chair rather than throwing

a tantrum when told to get up from the floor.


Programming


AB has shown fair response to training since his placement in

ICF/MR. He has learned to brush his teeth and his oral hygiene has

shown improvement. Academic goals of pointing to objects and maintaining

eye contact have been unsuccessful, and so he is now working on staying

on task for ten minutes. A goal to sign words has met with mixed

success. The most successful signs for AB have been "eat" and "drink,"

which he emits only to obtain edible reinforcers. He has consistently

met the goal to attend leisure time activities, has made progress in

using cutting, pasting and coloring skills in arts and crafts projects,

and has met the goal to play group ball games. AB has learned to use

appropriate utensils at mealtime, make his bed, blow his nose using

tissue, mop and sweep, and use the washing machine. He is also learning

to take action for self survival by independently exiting the building

during a fire drill when one or more of the exits are blocked.









Summary


AB has made good progress since his placement in ICF/MR. His

Social Age dropped from 4.0 in 1980 to 3.3 one year after ICF/MR

placement (see Figure 1) but increased to 5.3 three years later.

Programmatic goals have been refined and tailored to his needs and

he continues to show improvement in spite of autistic symptoms.

Although he remains very withdrawn and primarily engages in self-

stimulatory behavior, AB has become more sociable and his tantrums

have decreased to the point where they are no longer considered a

problem. He lives in a very active cottage and recently became upset

when some other clients were taken to a movie and he was left behind,

a positive sign since he is generally withdrawn and apparently

indifferent to his surroundings.

While the evidence is not conclusive, it does appear that the

1982 medication change from Mellaril to Haldol was of help in improving

AB's interpersonal skills and response to training. His VSMS scores

continue to show a steady increase and the interdisciplinary team has

recommended that he remain in his current Sunland ICF/MR cottage since

he continues to benefit from the placement.














CASE STUDY #2



Demography


CD is a thirty-one year old profoundly retarded white male who

has lived at Sunland since the age of seven and was transferred to

ICF/MR in 1980 at the age of twenty-seven. His mental retardation is

associated with autism (childhood schizophrenia), a "mental illness

. . characterized by severe withdrawal and inappropriate response to

external stimulation . and (often) serious impair(ment) in general

intellectual functioning" (Grossman, 1977, p. 124). According to

reports from CD's family, he developed normally until around age 4,

had a large vocabulary, sang numerous nursery rhymes, and attended

regular nursery school until his behavior became unacceptable and

finally necessitated institutionalization. His family has recounted

several possibly traumatic events that occurred during that time of

his life, including a fall on his head and witnessing several puppies

being unintentionally run over by his father and skinned alive. It

is not known what, if any, effect these events had on CD.

CD no longer spoke after his placement at Sunland. His family

feels that he was angry at them for leaving him; it is more probable

that the lack of stimulation at Sunland at that time simply allowed

him to regress. His family is supportive and visits him regularly.








His response to them varies; sometimes he knows them and at other times

he does not seem to.


Behavior


CD's behavior deteriorated after his placement at Sunland to the

point where he exhibited severe self-abusiveness and aggressiveness.

He has two very large "cauliflower" ears, permanently misshapen from

years of hitting himself. Remarkably, his hearing remains functionally

intact even though neither ear has enough of an opening to permit

examination or irrigation. Physical restraints were frequently required

in earlier years to prevent CD from injuring himself or others, and he

was able even then to bite others.

Restraints were no longer required by the time CD entered the

ICF/MR program but aggression and self-injurious behavior (SIB) remained

frequent. Additionally, he frequently wet his bed and urinated in

public areas. He chewed tobacco or dirty cigarette butts, drooled

tobacco juice and spit it on the floor and furniture. Public mastur-

bation was frequent. Not surprisingly, staff said they were ready to

pack his bags at a moment's notice.

A DRO behavior program was developed which used tobacco, food,

and praise as reinforcers. In addition to behavioral intervention,

CD continued to receive Mellaril and Lithium daily. In 1982, after

two years in an ICF/MR cottage, incidents of self-abuse (face slapping

and head banging) had decreased from an average of 20 per day to only

2 per day. Aggression occurred only once every three days, and was no

longer severe when it did occur.








CD had some dental work done and suffered a severe psychotic

reaction when the dentist gave him Catamine, a tranquilizer. He became

extremely self-abusive and aggressive, and masturbated almost con-

stantly, apparently with great discomfort. It became necessary to

dramatically increase the Mellaril until his behavior could be brought

under control once again. Control was reestablished and by 1983 SIB

had decreased to 3 episodes per week and aggression to one incident

per month. Tearing clothing and inappropriate undressing decreased

to zero, and he learned to masturbate in private. He continued to chew

on cigarette butts but spit them out when requested to do so, especially

at meal times. In 1984 CD's formal behavior program was discontinued

due to the great improvement in his behavior, which then averaged

eight minor incidents of self-abuse per month and only one incident

of aggression in five months.

CD remained basically nonverbal but once surprised a staff member

by clearly asking him something to the effect of "how're you doing

today" and then became silent again. Since his records indicate that

he had once spoken fluently, staff began to require him to ask for

things he wanted, which he did very reluctantly and in a muffled voice.

Attempts to take food from others at meals ceased after he was made

to leave the eating area and not return until he had apologized to the

victim. CD did this, crying tears, and did not snatch food again.

Object permanence appeared to develop as he watched staff members'

coffee during meetings even after they hid it from his view, whereas

previously he would walk away as though it no longer existed. He

also began to emit some spontaneous and clear phrases, often completely

out of context, such as "want some ice cream" and "Africa."








For most of his institutionalized life, CD has been a real "loner"

and concerned only with ensuring his own comfort. In 1982 he began to

respond to a staff member who played with him by chasing him around

the cottage. This was considered to be a positive behavior but increased

to the point where he began to run away from the cottage, searching

for discarded cigarette butts and apparently quite pleased with his

new found ability to control staff behavior by making them chase him.

He has progressed and presently is allowed to go outside by himself,

although staff must still watch him closely and escort him to any

destinations.

Since his ICF/MR placement in 1980, CD has progressed from an

antisocial, self-abusive, and aggressive individual to a happy and

often sociable young man. He retains the autistic symptoms which

impair his functioning, but he has made remarkable progress. To give

one example, his parents were able to take him out in the car with them

on their last visit, a previously impossible feat due to his extreme

behavior problems and lack of compliance.



Programming


CD has made such good progress behaviorally and in his training

programs that he is now able to attend some off-cottage activities.

He continues to be somewhat stubborn and noncompliant but much less

than previously and is clearly benefitting from his training. As a

result of staff efforts to make him name objects before receiving them,

his language receptiveness has progressed to the point where he is now








in formal speech therapy. He has been enrolled in the facility

prevocational program and is doing well, although he still requires

a cottage escort to stay on task. His behavior there is appropriate,

a great improvement from that of last year when he often urinated on

the floor and masturbated during sessions. Sessions address packaging,

assembling, and sorting skills but the formal goals are for on-task

behavior and, hopefully within the year, behavioral improvement so

that he will be able to remain at work without requiring a cottage

escort. In his cottage training, CD is learning to bathe himself

independently, care for his fingernails, make his bed, and identify

himself in a photo. He participates in regularly scheduled arts and

crafts sessions and activities.


Comments


CD is a client whose retardation is due to psychosis. He has made

good progress through a combination of formal programming and staff

attention and continues to develop. Many of CD's former skills appear

to remain intact but inaccessible, as evidenced by his occasional lucid

speech and his response to some complex commands. Mellaril and Lithium

continue to be necessary for his daily functioning but it is hoped that

they may be lowered or discontinued in the future.

A review of CD's VSMS scores at Sunland (see Figure 2) shows an

unexplained jump in 1976 from 2.1 to 5.4 years and then a steady decline

until 1981 when the scores began to rise again. Scores fell an average

of .6 from 1976 until his move to ICF/MF in 1980. His social age after





-93-


one year in ICF/MR fell again but only dropped .1 and then began the

rapid increase which as yet shows no indication of leveling off.

CD is responding well to training and it is not now known how far

he can, or will, advance. Previous attempts to transfer him to Marianna

Sunland to be nearer to his family have been abandoned since it is

felt that any change in his environment at present would be extremely

detrimental to his development. Programming is very important, but

just as important to his present growth are the cottage environment

and the staff's responses to him. CD has gone from being an unhappy,

self-abusive and aggressive individual to being the cottage "pet."




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