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Exploring Issues During Special Needs Adoptions and the Applicability of Life Care Plans to Address Them.

Permanent Link: http://ufdc.ufl.edu/UFE0042815/00001

Material Information

Title: Exploring Issues During Special Needs Adoptions and the Applicability of Life Care Plans to Address Them.
Physical Description: 1 online resource (223 p.)
Language: english
Creator: BUCKLES,VICKY P
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2011

Subjects

Subjects / Keywords: ADOPT -- ADOPTIONS -- CHILDREN -- DISABILITY -- ECOLOGICAL -- LCP -- QUALITATIVE
Rehabilitation Science -- Dissertations, Academic -- UF
Genre: Rehabilitation Science thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Exploring Issues During Special Needs Adoptions and the Applicability of Life Care Plans to Address Them. The purpose of this study was to identify the barriers associated with the adoption process of children with special needs and the potential of life care planning to address these barriers. At the end of 2009, there were approximately 115,000 children in the United States' foster care system awaiting adoption. Of these children 60% were diagnosed with emotional, mental, or physical disabilities; conditions collectively referred to as special needs. Despite the disproportionate number of children with special needs, potential parents are more likely to adopt an able-bodied child. As a result, children with special needs tend to remain in foster care longer and experience a greater number of placements. Research has shown that the length and number of foster placements greatly impacts a child's emotional well-being. As such it is important for these children to find permanent placement that will provide them with stability. The primary method of permanent placement for children in foster care is adoption. Therefore, this study was designed to explore the issues present with special needs adoptions as well as methods of addressing them. Using qualitative focus groups, the researcher explored adoption case managers' experiences in placing children with special needs and their opinions on the use of life care plans to aid the adoption process. Additionally, qualitative interviews were conducted with parents with adopted children with special needs in order to gain an understanding from their experience. When examining the data from the adoption case managers a number of themes were identified. From the case mangers' perspective barriers in the process included lack of information/education as well as unrealistic expectations of potential parents. The results from the qualitative interviews revealed a number of themes including decision making characteristics, emotions regarding the adoption process, and challenges in adopting and raising a child with special needs. Both the adoption case managers and parents felt that a life care plan is a useful tool to address some of the issues identified in this study. Future research on the application of life care plans were discussed as well as the impact of the findings on clinical practice.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by VICKY P BUCKLES.
Thesis: Thesis (Ph.D.)--University of Florida, 2011.
Local: Adviser: Pomeranz, Jamie Lee.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2011-10-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2011
System ID: UFE0042815:00001

Permanent Link: http://ufdc.ufl.edu/UFE0042815/00001

Material Information

Title: Exploring Issues During Special Needs Adoptions and the Applicability of Life Care Plans to Address Them.
Physical Description: 1 online resource (223 p.)
Language: english
Creator: BUCKLES,VICKY P
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2011

Subjects

Subjects / Keywords: ADOPT -- ADOPTIONS -- CHILDREN -- DISABILITY -- ECOLOGICAL -- LCP -- QUALITATIVE
Rehabilitation Science -- Dissertations, Academic -- UF
Genre: Rehabilitation Science thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Exploring Issues During Special Needs Adoptions and the Applicability of Life Care Plans to Address Them. The purpose of this study was to identify the barriers associated with the adoption process of children with special needs and the potential of life care planning to address these barriers. At the end of 2009, there were approximately 115,000 children in the United States' foster care system awaiting adoption. Of these children 60% were diagnosed with emotional, mental, or physical disabilities; conditions collectively referred to as special needs. Despite the disproportionate number of children with special needs, potential parents are more likely to adopt an able-bodied child. As a result, children with special needs tend to remain in foster care longer and experience a greater number of placements. Research has shown that the length and number of foster placements greatly impacts a child's emotional well-being. As such it is important for these children to find permanent placement that will provide them with stability. The primary method of permanent placement for children in foster care is adoption. Therefore, this study was designed to explore the issues present with special needs adoptions as well as methods of addressing them. Using qualitative focus groups, the researcher explored adoption case managers' experiences in placing children with special needs and their opinions on the use of life care plans to aid the adoption process. Additionally, qualitative interviews were conducted with parents with adopted children with special needs in order to gain an understanding from their experience. When examining the data from the adoption case managers a number of themes were identified. From the case mangers' perspective barriers in the process included lack of information/education as well as unrealistic expectations of potential parents. The results from the qualitative interviews revealed a number of themes including decision making characteristics, emotions regarding the adoption process, and challenges in adopting and raising a child with special needs. Both the adoption case managers and parents felt that a life care plan is a useful tool to address some of the issues identified in this study. Future research on the application of life care plans were discussed as well as the impact of the findings on clinical practice.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by VICKY P BUCKLES.
Thesis: Thesis (Ph.D.)--University of Florida, 2011.
Local: Adviser: Pomeranz, Jamie Lee.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2011-10-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2011
System ID: UFE0042815:00001


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1 EXPLORINGISSUESDURINGSPECIALNEEDSADOPTIONSANDTHE APPLICABILITYOFLIFECAREPLANSTOADDRESSTHEM By VICKYP.BUCKLES ADISSERTATIONPRESENTEDTOTHEGRADUATESCHOOL OFTHEUNIVERSITYOFFLORIDAINPARTIALFULFILLMENT OFTHEREQUIREMENTSFORTHEDEGREEOF DOCTOROFPHILOSOPHY UNIVERSITYOFFLORIDA 2011

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2 2011VickyP.Buckles

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3 ACKNOWLEDGMENTS FirstIwouldliketoexpressmyeternalgratitudetomydissertationcommittee:I thankDr.JamiePomeranzformentoringthroughthisprocessandalwayspushingme forwardtolearnmoreandreachhigherstandards.Hehasbeenagreatmentor throughouttheprocess.IamtrulybeyondgratefultoDr.MaryEllenYoungforallofthe guidance,support,andencouragementshehasprovided.Dr.Youngtaughtmethe importanceofqualitativeresearchaswellasthevariousresearchmethods.She exudesauniquepassionforqualitativemethods,whichinspiresthestudentsaround her.Throughoutmydissertationprocessshehasbeenamentor,colleague,andfriend, whoIwillbeforevergratefulto.IthankDr.Fossforherendlesssupportandguidance throughouttheprocess.Shetrulyaddedavaluablevoicetomydissertationcommittee. IthankDr.SondraSmithforherguidanceandsupportthroughouttheprocess.Ihad thewonderfulabilityoflearningtherapeutictechniquesfromher,whichwillremainwith methroughoutmyprofessionalcareer.Iwouldliketotaketheopportunitytothankall oftheadoptiveparentsandcasemanagerswhoparticipatedinthisstudy.Without themtakingtimeouttheirschedulestosharetheirexperienceswithmetherewouldbe nostudyresultstoreport. AdditionallyIthankmyfamily,becausewithouttheirsupportandencouragement noneofthiswouldhavebeenpossible.Myparents,FayeandGary,instilledinmethe importanceofacademicmotivationfromaveryyoungwhichpushedmeforwardin decidingtopursuemyPhD.Iwillneverbeabletoexpressorrepaymyparentsforall theyhavedoneformethroughoutmylife.Thenthereismysisterandbrother,Amanda andFrank,whohaveneverletmedownandarealwaystherewithencouragingwords topushmeforwardandachievemore.

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4 Furthermore,Iwouldliketoacknowledgethesupportandencouragementinwhich IhavefeltfrommyfellowemployeesatPutnamBehavioralHealthcare.Their understandingandabilitytobeflexiblethroughoutthisprocessisgreatlyappreciated. Finally,IwouldalsoliketotaketheopportunitytothanktheFoundationforLifeCare PlanningaswellasDr.PaulDeutschforsupportingmyresearchandprovidingmewith anexampleofalifecareplan.

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5 TABLEOFCONTENTS page ACKNOWLEDGMENTS..................................................................................................3 LISTOFTABLES............................................................................................................9 LISTOFFIGURES........................................................................................................10 ABSTRACT...................................................................................................................11 CHAPTER 1BACKGROUND......................................................................................................13 Introduction.............................................................................................................13 Publicvs.PrivateAdoptionAgencies.....................................................................13 FosterCaresRoleintheAdoptionProcess...........................................................14 AdoptionCaseManagers.......................................................................................16 CaseManagersRolewithPotentialParents..........................................................16 AdoptionCaseManagersRolewiththeChild.........................................................19 TrainingMethodsforAdoptionCaseManagers......................................................21 BarrierswithintheAdoptionSystem.......................................................................22 ProvisionofHealthcareforAdoptedChildrenwithDisabilities................................24 LifeCarePlanning..................................................................................................24 ResearchMethods..................................................................................................25 GoaloftheResearch..............................................................................................26 Question#1......................................................................................................26 Question#2......................................................................................................26 2LITERATUREREVIEW..........................................................................................29 IssuesofSpecialneedsAdoptions.........................................................................29 LegislationandtheAdoptionProcess.....................................................................31 FederalLegislation.................................................................................................33 HealthCoverageforAdoptedChildren...................................................................36 ImpactofLongTermFosterCarePlacement.........................................................38 EcologicalPerspectiveofAdoption.........................................................................42 IssueswithintheAdoptionSystem.........................................................................49 LifeCarePlanning..................................................................................................53 RoleofaLifeCarePlanner.....................................................................................55 ProcessofLifeCarePlanning................................................................................56 UniqueConsiderationstotheLifeCarePlanningProcess.....................................61 PreliminaryResearch..............................................................................................62

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6 3METHODOLOGY...................................................................................................69 ResearchGoals......................................................................................................69 ResearchQuestion1..............................................................................................70 Rationale..........................................................................................................70 Methods............................................................................................................70 InquiryParadigm..............................................................................................71 SamplingTechnique.........................................................................................71 RecruitmentMethods.......................................................................................72 Participants.......................................................................................................72 Procedures.......................................................................................................73 DataAnalysis...................................................................................................74 Constantcomparativemethodandcoding.................................................75 Researchbias............................................................................................76 ResearchQuestion2..............................................................................................78 Rationale..........................................................................................................78 InquiryParadigm..............................................................................................78 SamplingTechnique.........................................................................................79 RecruitmentMethods.......................................................................................79 Participants.......................................................................................................80 Procedures.......................................................................................................81 DataAnalysis...................................................................................................83 ContentAnalysisandCoding...........................................................................84 PersonalBiasStatement........................................................................................85 4PARTICIPANTCASESUMMARIES.......................................................................87 Overview.................................................................................................................87 ParticipantDemographics.......................................................................................87 TheInterviewParticipants.......................................................................................88 InterviewP1......................................................................................................88 InterviewP2......................................................................................................91 InterviewP3......................................................................................................93 InterviewP4......................................................................................................96 InterviewP5......................................................................................................98 InterviewP6......................................................................................................99 InterviewP7....................................................................................................101 InterviewP8....................................................................................................103 InterviewP9....................................................................................................105 ComparisonofParticipants...................................................................................106 Similarities......................................................................................................106 Differences.....................................................................................................109 5INTERPRETATIONOFINDIVIDUALINTERVIEWS............................................111 ResearchOverview..............................................................................................111 EcologicalPerspectiveoftheAdoptionExperience..............................................111

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7 Microsystem...................................................................................................111 Mesosystem...................................................................................................113 Exosystem......................................................................................................115 Macrosystem..................................................................................................118 Microsystem:PersonalConstruct...................................................................119 Decisionmaking.......................................................................................119 Emotions..................................................................................................123 Mesosystem:InteractionalConstruct.............................................................126 Perceptions..............................................................................................126 Process....................................................................................................128 Exosystem:SystemConstruct........................................................................131 Fostercare...............................................................................................131 Adoptionsystem......................................................................................133 Macrosystem:SocialConstruct......................................................................134 Socialpressures......................................................................................134 EmergingThemesRegardingLifeCarePlans......................................................136 Applicability....................................................................................................136 Knowledge......................................................................................................137 Recommendations.........................................................................................139 6FOCUSGROUPRESULTS..................................................................................142 FocusGroupDemographics.................................................................................142 OverviewofSignificantFindingsfromFocusGroup.............................................143 Perceptions:Barriers......................................................................................145 Perceptions:parentswhoadoptchildrenwithspecialneeds...................150 Perception:needs....................................................................................152 Overviewofadoption:typesofplacements.............................................153 Overviewofadoption:preparationforadoption.......................................155 Lifecareplans................................................................................................156 Lifecareplans:applicability.....................................................................156 Lifecareplan:recommendations.............................................................157 7DISCUSSION.......................................................................................................159 ChapterPreface....................................................................................................159 OverviewofSignificantFindings...........................................................................159 QualitativeInterviews.....................................................................................159 Microsystem:PersonalConstruct...................................................................160 DecisionMaking.......................................................................................160 Perceptions..............................................................................................165 Process....................................................................................................166 Exosystem:SystemConstruct........................................................................167 FosterCareSystem.................................................................................167 AdoptionSystem......................................................................................169 Macrosystem:SocialConstruct......................................................................170 Socialviews.............................................................................................170

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8 LifeCarePlans:Applicability..........................................................................171 LifeCarePlans:Recommendations...............................................................174 FocusGroups.................................................................................................174 Perceptions:Barriers......................................................................................175 Perceptions:Needs........................................................................................181 Perceptions:ThoseWhoAdoptSpecialNeedsChildren...............................183 OverviewofAdoption:TypesofAdoptions.....................................................185 OverviewofAdoption:PreparationforAdoption.............................................188 LifeCarePlan:Applicability............................................................................189 LifeCarePlans:Recommendations...............................................................193 LifeCarePlans:Concerns..............................................................................194 AssuringTrustworthiness......................................................................................195 Limitations.............................................................................................................196 StudyImplications.................................................................................................197 ClinicalPractice..............................................................................................197 Theory............................................................................................................200 Research........................................................................................................201 Conclusion............................................................................................................203 APPENDIX ADISCUSSIONGUIDEFORINDIVIDUALINTERVIEWS......................................204 BDISCUSSIONGUIDEFORFOCUSGROUPS.....................................................206 CSCRIPTFORINTRODUCINGLIFECAREPLANS..............................................208 DSAMPLELIFECAREPLAN.................................................................................209 LISTOFREFERENCES.............................................................................................215 BIOGRAPHICALSKETCH..........................................................................................223

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9 LISTOFTABLES Tablepage 2-1Tenetsoflifecareplanning................................................................................67 2-2Areasofthelifecareplan..................................................................................68 4-1Participantdemographics...................................................................................88 5-1Themesregardingthestepsintheadoptionprocess.......................................141 6-1Participantdemographicsforfocusgroup1.....................................................142 6-2Participantdemographicsforfocusgroup2.....................................................142

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10 LISTOFFIGURES Figurepage 1-1Fostercareprocess............................................................................................27 1-2Adoptionprocess................................................................................................28 5-1Ecologicalperspectiveoftheadoptionexperience...........................................112 6-1Organizationallayoutofcategories..................................................................144

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11 AbstractofDissertationPresentedtotheGraduateSchool oftheUniversityofFloridainPartialFulfillmentofthe RequirementsfortheDegreeofDoctorofPhilosophy EXPLORINGISSUESDURINGSPECIALNEEDSADOPTIONSANDTHE APPLICABILITYOFLIFECAREPLANSTOADDRESSTHEM By VickyPatriciaBuckles May2011 Chair:JamiePomeranz Major:RehabilitationScience Thepurposeofthisstudywastoidentifythebarriersassociatedwiththeadoption processofchildrenwithspecialneedsandthepotentialoflifecareplanningtoaddress thesebarriers.Attheendof2009,therewereapproximately115,000childreninthe UnitedStatesfostercaresystemawaitingadoption.Ofthesechildren60%were diagnosedwithemotional,mental,orphysicaldisabilities;conditionscollectively referredtoasspecialneeds.Despitethedisproportionatenumberofchildrenwith specialneeds,potentialparentsaremorelikelytoadoptanable-bodiedchild.Asa result,childrenwithspecialneedstendtoremaininfostercarelongerandexperiencea greaternumberofplacements.Researchhasshownthatthelengthandnumberof fosterplacementsgreatlyimpactsachildsemotionalwell-being.Assuchitisimportant forthesechildrentofindpermanentplacementthatwillprovidethemwithstability.The primarymethodofpermanentplacementforchildreninfostercareisadoption. Therefore,thisstudywasdesignedtoexploretheissuespresentwithspecialneeds adoptionsaswellasmethodsofaddressingthem.Usingqualitativefocusgroups,the researcherexploredadoptioncasemanagersexperiencesinplacingchildrenwith

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12 specialneedsandtheiropinionsontheuseoflifecareplanstoaidtheadoption process.Additionally,qualitativeinterviewswereconductedwithparentswithadopted childrenwithspecialneedsinordertogainanunderstandingfromtheirexperience. Whenexaminingthedatafromtheadoptioncasemanagersanumberofthemeswere identified.Fromthecasemangersperspectivebarriersintheprocessincludedlackof information/educationaswellasunrealisticexpectationsofpotentialparents.The resultsfromthequalitativeinterviewsrevealedanumberofthemesincludingdecision makingcharacteristics,emotionsregardingtheadoptionprocess,andchallengesin adoptingandraisingachildwithspecialneeds.Boththeadoptioncasemanagersand parentsfeltthatalifecareplanisausefultooltoaddresssomeoftheissuesidentified inthisstudy.Futureresearchontheapplicationoflifecareplanswerediscussedas wellastheimpactofthefindingsonclinicalpractice.

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13 CHAPTER1 BACKGROUND Introduction Attheendof2009,therewereapproximately115,000childrenintheUnited Statesfostercaresystemawaitingadoption(NationalDataAnalysisSystem,2009).Of thesechildren,60%havebeendiagnosedwithemotional,mental,orphysical disabilitiesconditionscollectivelyreferredtoasspecialneeds(Adamec&Miller,2007). Specifically,in2001ofthechildrenawaitingadoptioninFlorida96%hadspecialneeds (Adamec&Miller,2007).Despitethedisproportionatenumberofchildrenwithspecial needs,potentialparentsaremorelikelytoadoptachildwithoutaknowndisability (OfficeofProgramPolicyAnalysis&GovernmentalAccountability,2008). Thebasicconceptofadoptionhasbeenaroundformorethan4,000years,with thefirstrecordsappearinginBabylonianCodeofHammurabiin2285B.C.(Adamec& Miller,2007).Ofcourse,adoptionhasevolvedsincethattimeandcurrentlyis sanctionedasalegalprocesscarriedoutwithintheUnitedStatescourtsystems(Moe, 2007).Adoptionisthelegalprocessofterminatingthebirthparentsrightsand obligations,andthenbestowingtheserightsontotheadoptiveparents(Zamostny, OBrien,Baden,&Wiley,2003).Theadoptionprocessismanagedthroughavarietyof publicandprivateagenciesresponsibleformatchingthechildwithanadoptivefamily andthenhelpingthefamilycompletetheadoptionprocess(OfficeofProgramPolicy Analysis&GovernmentalAccountability,2008). Publicvs.PrivateAdoptionAgencies Potentialparentsuseanagencytoassistincompletingtheadoptionprocessand mustdecidebetweenprivateorpublicagencies.Privateadoptionagenciesare

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14 organizationslicensedthroughthestatetomanageadoptions(AdoptionFlorida,2007). Thetaxstatusoftheagencymaybeeitherfor-profitornot-for-profitandtheydonot receivefundingfromstateorfederaltaxmoney.Sincefederalandstatefundingisnot provided,privateadoptionagenciesoftenchargeafeeforadoptionservices(Moe, 1998).Furthermore,thelackoffundingallowsprivateagenciestomaketheirown requirementsforthebirthandadoptiveparents.Makingtheirownrequirements providestheagenciestheopportunitytorecruitpregnantwomenwhomaybe consideringadoption(Gilman,2001).Thereforethechildrenwhoareavailablethrough privateadoptionagenciesareoftenyounger,havelesstraumaticexperiences,and fewerspecialneeds(Moe,1998). Ontheotherhand,publicadoptionagenciesdoreceivestateandfederaltax moneytoprovideadoptionservices(Moe,1998).Therefore,thepublicagenciesdonot haveafeeforadoptionservices.Furthermore,publicadoptionagenciesreceiving monetarysupportmustfollowbothstateandfederaladoptionlaws,thusprohibitingthe recruitmentoffamilieswhoareconsideringplacingtheirchildrenupforadoption (Gilman,2001).Therefore,thechildrenwhoareavailableforadoptionthroughpublic agenciesareoftenfromthestatefostercaresystem(Moe,1998).Thismeansthatthe childrenhaveexperiencedtraumaticevents,areolder,andoftenhavespecialneeds (Moe,2005).Thepublicadoptionagencieswillbethefocusofthisdissertation,since childrenwithspecialneedsrepresenttheresearchpopulation. FosterCaresRoleintheAdoptionProcess Thefostercaresystemplaysalargeroleintheadoptionprocessbecauseit servesasashelterforchildrenwhoarebeingabusedorneglected.Furthermore, childrenoftenremaininfosterplacementuntilasuitableadoptivehomeisestablished.

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15 Determiningifachildisbeingabusedorneglectedisthefirststepindecidingiffoster placementisthebestoptionforthechild.Theprocessofidentifyingabuseoccurs whenanallegationismadetothestatesabusehotline.Theabusehotlineisacall centerwhichhandlesallabuseallegationsanddeterminesiftheywarrantinvestigation (Moe,2005).Onceanallegationismade,thechildwelfareinvestigatorswillexamine themeritsoftheabuse/neglectclaims.Ifabuseisnotconfirmedwithpositivefindings thechildremainsinthebirthparentscareandtheinvestigationisclosed.Ontheother hand,ifabuseallegationsareconfirmedthechildisremovedfromtheirbirthparents andplacedeitherwithavailablerelativesorinfostercare.Atthispointintheprocess thechildisinthecustodyofthestateandacaseplanforpermanencyisdeveloped. Theinitialgoalofthecaseplanisreunificationwiththechildsbirthparents,howeverif theyareunabletocompletethecaseplanapermanencystaffingisscheduled.The permanencystaffingdetermineswhattypeoflongtermplacementisinthebestinterest ofthechild,includingchangingthegoalofthecaseplantoadoption.Ifthepermanency staffingdeterminesthatadoptionistheappropriategoal,thefostercareworkersinitiate theprocessofterminatingbirthparentsrightsandtransferringthecasetoanadoption casemanager(OfficeofProgramPolicyAnalysis&GovernmentalAccountability, 2008).(Figure1-1). Currentlegislation,ChildSafety,Adoption,andFamilyEnhancement(ChildSAFE) Actof2004,establishesincentivesforstatesthatdeterminelongtermplacementfora childwithin12monthsofremovalfromtheirbirthparents.Duetothislegislation,the fostercaresystemsattemptstoestablishthepermanencygoalwithinayear,however thisdoesnotoftenoccur.Theineffectivenessofthecurrentlegislationincreasesthe

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16 numberoffosterplacementsandtimebeforeachildachievesasenseofbelonging. Theamountoftimeachildremainsinfostercarehasanegativeimpactonthe emotionalwell-beingofthechild(Powell,2003). AdoptionCaseManagers Individualswhomanagethecareofthechildandaidintheadoptionprocessare referredtoascasemanagers.Casemanagementissimplytheprocessoforganizing, facilitating,andmanaginganindividualssituation(Powell,2003).Thecase managementprocessincludesassessment,planning,facilitation,andadvocacyfor optionsandservicestomeetanindividualsneeds(CaseManagementSocietyof America).Assuch,casemanagementisbeneficialinanumberofarenasincluding adoptions.Specifically,adoptioncasemanagersadvocateandguidethechildand potentialfamilythroughadoptionprocess. Theprocesshasanumberofstepsinwhichthepotentialfamiliesmustgothrough inordertofinalizetheadoption.Thesestepsincludeanorientation,educationalcourse, homestudy,matching,placementsupervision,andfinalizationoftheadoption.The overalladoptionprocessisshowninFigure1-2andwillguidethediscussionoftherole adoptioncasemanagersperform.Theprocessoffinalizinganadoptionrequiresthe casemanagertofulfillanumberjobtasksforboththechildandpotentialparents. CaseManagersRolewithPotentialParents Potentialparentswhoareinterestedinadoptionmustfirstattendanorientation meeting.Theadoptioncasemanagersfacilitatemonthlyorientationmeetingsasa methodofrecruitingpotentialfamilies,educatingthepubliconadoption,andadvocating forthechildrenwhoareintheircare.Ifthepotentialparentsarestillinterestedin adopting,theywillhavetoattendaneightweeklongintensiveparentingclasscalled

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17 ModelApproachtoPartnershipinParenting(MAPP)(Adamec&Miller,2007).This courseprovidesthepotentialparentswithinformationontheadoptionprocess,aswell asanintensiveintroductiontoparentingskills.Adoptioncasemanagerswillhelpthe potentialparentsregisterforthiscourseanddocumentthecompletionofthetraining. Often,oneoftheagenciesadoptioncasemanagerswillconducttheparentingcourse aswell(OfficeofProgramPolicyAnalysis&GovernmentalAccountability,2008). Thenextstepintheprocessisforthepotentialparentstoconsenttoahome study,whichisrequiredbyFloridaStatelaw(Nolo,2005).Thegoalofahomestudyis toevaluatethepotentialparentsdesireandcommitmenttoadoption,assessthehome environment,andreasonsforconsideringadoption.Theassessmentisgenerally conductedbytheadoptionagencyscasemanagerandwillincludeinterviewswith familymembers,backgroundchecks,references,andanin-homeevaluationofliving conditions(OfficeofProgramPolicyAnalysis&GovernmentalAccountability,2008). Aftergatheringallofthenecessaryinformation,theadoptioncasemanagerpreparesa writtenreportthatsummarizesthestrengths,weaknesses,andoverallsuitabilityofthe parentsforadoption(Adamec&Miller,2007).Thehomestudywillhelpguidethe adoptioncasemanagerswhencompletingthematchingprocess. Afterthepotentialadoptiveparentshavecompletedparentingclassesandahome study,theadoptioncasemanagerwillattempttomatchthemwithachild.Matchingis theprocessofchoosingadoptiveparentswhoaresimilartothechild.Similarities includeappearance,interests,intelligence,personality,andthosewhowillmeetany additionalneedsofthechild.Theadoptioncasemanagersholdmatchstaffing approximatelyonceperweek.Duringthestaffing,allofthecasemanagersassessthe

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18 incominghomestudiesandchoseachildtomatchwiththem(OfficeofProgramPolicy Analysis&GovernmentalAccountability,2008).Oncethefamilyismatchedwitha child,thecasemanagerwillcontactthefamilyandscheduleameeting.Duringthis meeting,thecasemanagerpresentsthepotentialparentswiththechildstudyandfile forthemtoreview.Allowingforreviewofthechildscharthelpstheparentsunderstand thebackgroundofthechildanddetermineiftheywanttoconsideradoption.After providingthepotentialparenttimetoreviewtheinformation,thecasemanageris availabletoansweranyquestions.Attheconclusionofthemeeting,theparentsdecide iftheywanttoproceedtosupervisedplacement(OfficeofProgramPolicyAnalysis& GovernmentalAccountability,2008). Whenthepotentialadoptivefamilyismatchedwithachild,placementsupervision begins.Theadoptioncasemanagerassiststhefamilyinpreparingforthechildaswell asaddressinganyadjustmentissues.Thefamilymustgothrough90daysof supervisiontoassurethatplacementisappropriateforthechild.Duringthistimethe adoptioncasemanagerhascontactwiththefamilythroughphoneupdatesaswellas weeklyvisits.Furthermore,theadoptioncasemanagerassiststhefamilyincompleting allnecessarypaperworkandfilinganadoptionpetitionwiththecircuitcourt.The adoptionpetitionincludesthenames,ageandaddressofadoptiveparents,the relationshipbetweentheadoptiveparentsandthechild,thelegalreasonthatthe birthparentsrightshavebeenterminated,thehomestudy,andastatementthat adoptionisinthebestinterestofthechild(Nolo,2005).Afterfilingtheadoption petition,thecourtsystemswillnotifyallnecessarypartiesandscheduleanadoption hearing.Theadoptionhearingisheldinfrontofcircuitcourtjudgewhoreviewsthe

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19 petitionandanysupportingdocumentation.Thejudgedeterminesiftheadoptionisin thebestinterestofthechild,andwillissueanorderfinalizationoftheadoption.The finaldecreeofadoptionlegalizesthenewparent-childrelationshipandlegallychanges thechildsname(Nolo,2005). AdoptionCaseManagersRolewiththeChild Theadoptioncasemanagerbecomesinvolvedinthechildscareduringthe permanencystaffing;refertoFigure1-2.Atthistime,thecasehasnotbeentransferred fromthefostercareworker;howevertheadoptioncasemanagerattendsthestaffingto obtainanunderstandingofthechild.Gaininganunderstandingofthechildandhisor herneedswillallowthecasemanagertostartpreparingthechildforadoption. Moreover,thismeetingprovidestheadoptioncasemanagerandfostercareworkerthe opportunitytocommunicatewitheachotherregardingthecase.Often,this collaborationhelpssmooththetransitionbetweenagencies(OfficeofProgramPolicy Analysis&GovernmentalAccountability,2008). Theadoptioncasemanagertrulytakesoverthechildscare(transferfromfoster careworkertoadoptioncasemanager)afterthejudgeagreestothegoalofadoption andterminatesthebiologicalparentsrights.Theadoptioncasemanagerisnow responsibleforallaspectsofcarefortheindividual.Assuch,itistheresponsibilityof thecasemanagertoschedulenecessaryhealthcareappointments,provide transportation,andrepresentthechildsinterestinfrontofthejudge.Theadoption casemanagerbasicallyactsasthechildsparentwhileheorsheareawaitingadoption, furthermorethecasemanagermaintainsaccuratefilesoneverythingthatoccurswhich willallowforthisinformationtobepassedontopotentialparents.Thefilesshould containacomprehensivehistoryofthechildincluding:availablebirthrecords,birth

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20 certificate,socialsecuritycard,allabusereports,immunizationrecords,birthparents informationetc.Ifanyofthisinformationismissing,thecasemanagerhastorequest theinformationfromthenecessarysourcestoplaceinthechart(OfficeofProgram PolicyAnalysis&GovernmentalAccountability,2008). Theprocessofrecruitingpotentialfamiliesforachildrequiresthatthecase managerpresentthechildtopotentialparents.Onewayforthecasemanagerto presentthechildisthroughtheuseofcurrentprofiles.Thechildsprofileisorganized andpresentedintwodifferentmethods.Thefirstmethodisachildstudy,whichisa writtennarrativecontainingrelevantinformationaboutthechildandincludesreasonfor removal,medicalbackground,familybackground,andthechildsinterests.Theother methodofprofilingthechildisasummaryoftheirbasicinformationthatispostedonthe statesadoptionwebsite.Thisallowspotentialparentstosearchandidentifychildren theymaybeinterestedinadopting.Theadoptioncasemanagerisresponsiblefor maintainingaccurateprofilesofthechild. Oncethechildismatchedwithafamily,theplacementphasebegins.Thecase managerhelpspreparethechildformeetinghisorhernewparents.Assuch,thecase managertakesonasupportiveroleduringtheprocessandsetsupnecessaryservices tohelpthechildadjusttotheirnewsurroundings.Moreover,thecasemanagertalks withthechildtoassureheorsheishappywithcurrentplacementbeforedecidingto finalizetheadoption.Thefinalresponsibilityofthecasemanageristoestablishpost adoptionsupports.Thecasemanagerarrangesforanyservicesthataredeemed necessaryatthecompletionoftheadoption,whichcouldincludecounseling,specialty

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21 doctors,primarycarephysician,andreferralstosupportgroups.Atthispointthe adoptioncaseisclosedandremovedfromthecasemanagerscaseload. TrainingMethodsforAdoptionCaseManagers Adoptioncasemanagersguidethechildandpotentialfamilythroughtheadoption process.Theprocessofadoptioninvolvesanumberofstepsandpotentialobstacles thatthecasemanagermustunderstandandknowhowtoresolve.Therefore,theU.S. adoptionsystemsdesignedaspecifictrainingprogramthatapersonmustcomplete beforepracticingasanadoptioncasemanager.Thetrainingisintendedtoprovidethe casemanagerwithspecializedskillsinunderstandingadoptionprocess,preparing writtenreportsforthecourt,matchingfamilies,completingahomestudy,andhowto helpafamilythroughtheadoptionprocess.Thetrainingprogramconsistsoftasksthat thecasemanagerwillperformwithineachstageoftheadoptionprocess(preplacementissues,preparationofthechildforadoption,presentationofthechild, adoptionassistance,andplacement/postadoptionservices).Trainingineachareais achievedthroughacombinationofchartreviews,onthejobobservations,andafinal submissionofcompletedadoptionfileforreview.Thetrainingprocesscanlastuptosix monthsandduringthistimetheemployeeisconsideredonprobation.Successful completionofanadoptionfilewillallowthepersontostartpracticingasanadoption casemanagerwhileundersupervision(FloridaDepartmentofChildrenandFamilies, 2007). Thecurrenttrainingmethodofadoptioncasemanagersisveryintense.The traininghelpstheindividuallearnthenecessaryskillstoguidethefamilyandchild throughtheprocess,howevertherearestrengthsandweaknesseswiththecurrent trainingcurriculum.Thetrainingprograminvolvesmixedlearningmethodstoassure

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22 thecasemanagerobtainsacomprehensiveunderstandingoftheirrole.Theprogram alsorequirestheindividualtocompleteanactualadoptioncasefiletoassuretheyknow howtoapplytheknowledgethattheyhavelearned. Theweaknessesoftrainingapplydirectlytotheadoptionofchildrenwithspecial needs.Thestandardtrainingprogramdoesnotincludeacomponentonmanaging specialneedschildren(FloridaDepartmentofChildrenandFamilies,2007). Furthermore,thecasemanagerwillprobablynevercomeincontactwithachartor observeachildthathasspecialneedsuntiltheyobtainaregularcaseload(Moe,2005). Sincethereisnotacomponentcoveringchildrenwithspecialneeds,thecase managersremainunawareofthetypesofservicesandadditionalneedsnecessary. Thisleavesthecasemanagerinanunfamiliaranddifficultpositionwhenplanningthe adoptionprocess,recruiting,ormatchingforachildwithspecialneeds.Thisbecomes adisadvantageforthechildrenwhohavespecialneeds,becausetheymaynotbe placedinanenvironmentthataffordsthemthebestopportunityforpermanency. Consideringthehighestrateoffailedadoptionsiswithchildrenwhohavespecialneeds, improvementstothetrainingrequirementsarenecessarytoprovideadoptioncase managerswithamorecomprehensiveunderstandingregardingtheaspectofspecial needs(Adamec&Miller,2007). BarrierswithintheAdoptionSystem Adoptionisacomplexprocessandtheadoptioncasemanagersmustunderstand allaspectsinwhichpotentialparentsmustcomplete.Forthisreasonthelackof specializedtrainingregardingspecialneedsadoptioncreatesalargebarriertowards successfulplacementofchildrenwithspecialneeds.Moreover,researchhasrevealed anumberofissuesinrelationtotheadoptionprocess(Nolo,2005).FloridasOfficeof

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23 ProgramPolicyAnalysis&GovernmentalAccountability(OPPAGA)recentlypublished areviewofthestateschildwelfaresystem.ThisreportrevealedthatFlorida consistentlylaggedbehindnationalstandardsinthetotalnumberofsuccessful adoptions.Thereportdiscussedsomeofthemajorbarrierscontributingtothelackof adoptions.Thenumberonebarrieridentifiedbyadoptionagencieswaslocating familieswhoarewillingtoadoptchildrenwithspecialneeds.Theagenciesfeltthata numberofthechildrenintheircarehadeithermedicalorbehavioralissuesthat deterredpotentialparentsfromconsideringadoption.Anotherissuepreventing adoptionwasthatpotentialadoptiveparentfelttheywereunabletoobtainadequate informationregardingthechildsneedstofeelcomfortablewithbecomingresponsible forthechildscare(OfficeofProgramPolicyAnalysis&GovernmentalAccountability, 2008). Anotherissuetoconsiderwhenexaminingadoptionisthedissolutionrate. Dissolutionofadoptionoccurswhentheadoptiveparentsdecidetheadoptionisnot goingtoworkandthechildisreturnedtofostercare(Moe,2005).Theadoptionagency mustkeeprecordsonthenumberoffailedadoptionsandrevealingthatupto20%of specialneedsadoptionsresultindissolution.Thisiscomparedto3%dissolutionrate forallotheradoptions(Smith&Howard,1999).Asaresultofhighadoptiondissolution, researchstartedfocusingonthefactorsthatcontributetoaparentdecidingtodisrupt theadoption.Oneoftheprominentreasonsdocumentedbymorethantenresearch studiesisthenumberandseverityofthechildsneedsatthetimeofadoptive placement(Adamec&Miller,2007).Parentsoftenreportthatthechildhavingany emotional,cognitive,orphysicalproblemswastoodifficulttohandle(Mallon&Hess,

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24 2005).Anothermajorreasonfordissolutionexpressedbyadoptiveparentsisthelack ofinformationregardingtheextentofthechildscarepriortoadoption.Theparentsfelt thattheywerenotpreparedforwhatwasexpectedofthem,resultinginthedecisionto dissolvetheadoption(Mallon&Hess,2005). ProvisionofHealthcareforAdoptedChildrenwithDisabilities Financialsupportformeetingthedisabilityrelatedneedsofanadoptedchildis mostoftenprovidedbystateMedicaid.TheMedicaidprogramwasenactedin1965 underTitleXIXofthesocialsecurityactandisfundedthroughastateandfederal partnership.Accordingtothelegislation,theMedicaidplanisadministeredbyeach stateinaccordancetotheirindividualstateplans.ThegoaloftheMedicaidprogramis toimprovethehealthcoverageofthosewhootherwisemightnotbeabletoaffordtheir medicalcare,thereforeundertheMedicaidplanthestatereimbursesprovidersfor medicalservicesrenderedtoqualifiedindividuals.Eachrecipientmustmeetspecific eligibilityrequirementstobecoveredunderMedicaid,whicharedeterminedbyfederal andstatelegislation.TheeligibilitycriteriaandmoreonMedicaidwillbediscussedin Chapter2. LifeCarePlanning Onepotentialmethodofaddressingthebarrierswithinthestateadoptionsystem, includinglimitationintrainingandcasemanagersknowledgebase,isthroughtheuse oflifecareplans.Lifecareplansaredynamicdocumentsthatorganizeaconciseplan forthecurrentandfutureneedsofindividualswithdisabilities(Weed,2004).Theplans arecreatedforbothchildrenaswellasadultsandexaminethedisabilitythroughlife expectancy.Eachlifecareplanisbaseduponpublishedstandardsofpractice, comprehensiveassessments,dataanalysis,andresearch(NARPPS,2004).

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25 Specifically,thelifecareplannermakesrecommendationsonthemedical, psychological,social,andenvironmentalneedsbasedonthepersonsfunctional abilitiesaswellaspublishedstandardsofcare(Weed,2004).Theplanexplainsthe frequency,duration,rationale,andcostofthenecessaryrecommendations. Organizationoftheplancanvarybetweenlifecareplanners,howevertheygenerally cover16basicareas:projectedevaluation,projectedtherapeuticmodalities,diagnostic test/education,wheelchairneeds,wheelchairaccessories,orthopedic/prosthetic,home furnishingsandaccessories,aidsforindependentfunctioning,medication,supply needs,homecare/facilitycare,projectedroutinemedicalcare,aggressivemedicalcare, transportationneeds,architecturalrenovations,leisureorrecreationalequipment (Deutsch&Sawyer,2002).Thelifecareplannerusesaconsistentmethodologywhen establishingrecommendationstoassurevalidandreliableplansthatwillmeetthe individualsneeds.Adiscussionofthespecificstepsindevelopingalifecareplanwill beincludedinChapter2. Lifecareplansarecurrentlyusedinpersonalinjuryandothertypesoflitigation casesinordertoeducatetheiraudiences(Weed,2004).Educationregardingthe accuratedisabilityrelatedneedsisoneoftheprimarygoalsofLCPs.Forthisreason LCPswouldbeanorganizedandconcisemethodforadoptioncasemanagersto communicatethedisabilityrelatedneedswhenattemptingtoplaceachildwithspecial needs. ResearchMethods Asstatedearlier,LCPsareacomprehensivetoolthatpredictsthedisabilityrelated needsthroughlifeexpectancy,andassuchitisdifficulttoobtainvaluableinformation regardingtheuseoflifecareplanswhenemployingshorttermquantitativeresearch.

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26 Theuseofeitherlongitudinalquantitativeorin-depthqualitativemethodswillprovide thebestinformation.ThisstudyaimsexploretheuseofLCPswithspecialneeds adoption,andthereforeusesanin-depthqualitativemethodswhichwillbediscussedin Chapter3. GoaloftheResearch Theprimarygoalofthisdissertationwastoconductaqualitativestudytoanalyze theuseofLifeCarePlanswithintheadoptionsystem.Thisresearchwillleadtothe developmentofaspecializedmodelofLifeCarePlanningforuseintheadoptionof childrenwithspecialneeds. Question#1 Whataretheperceptionsofadoptiveparentsofchildrenwithspecialneeds regardingtheuseoflifecareplansduringtheadoptionprocess? Question#2 Whatareadoptioncasemanagersperceptionsregardingtheuseoflifecareplans withaspecialneedsadoptions?

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27 Figure1-1.Fostercareprocess

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28 Figure1-2.Adoptionprocess

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29 CHAPTER2 LITERATUREREVIEW IssuesofSpecialneedsAdoptions In2007therewere8,000childrenintheFloridafostercaresystem(AFARCS, 2009).Thesechildrenremaininfostercareuntilasuitableadoptiveplacementis found,howeverformanychildrenthistakesyearsormayneveroccur(Moe,2005). Theaveragelengthofstayforchildrenawaitingadoptionisgreaterthantwoyears (AFARCS,2008).Theextendedlengthoftimeinfostercareisduetothefactthat fostercareadoptionsareconsistentlylowerthanadoptionsfromprivateorinternational agencies;furthermoredisabilitiesareoverrepresentedinfostercaresystemversusthe generalpopulation(AFARCS,2008;Moe,2005).Thecombinationofthesetwo characteristicsmeansthatchildrenoftenlingerinthefostercaresystemforan extendedperiodoftime. Peoplewhoconsideradoptionarelesslikelytobewillingtoadoptachildwhoisin thefostercaresystem(DaveThomasFoundation,2007).Thisisevidentwhen examiningthestatisticsregardingadoptionbecausein2001atotalof8,435children wereadoptedinthestateofFlorida(ChildWelfareGateway,2005).Ofthoseadoptions only17%or1,466werefromthepublicfostercaresystem(AFARCS,2005).These numbersareconsistentwithnationalstatisticswithonly39%ofalladoptionsoccurring fromfostercare(ChildWelfareGateway,2005). Researchonadoptionexplainssomeofthereasonsregardingthelowernumber ofadoptions.TheDaveThomasFoundation(2007)conductedasurveyregarding Americansopinionsonadoption.Atotalof1,166participantstookpartinthesurvey thatexploredtheperceptionspeopleheldregardingadoption.Specificallythestudy

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30 focusedonidentifyingthenumberofpeoplewhowereactivelyconsideringadoptionas wellasthechildrentheywouldbewillingtoadopt.Ofparticularinterestwerethe questionsthataddressedifthefamiliesconsideringadoptionfeltthatfostercarewasan option.Only30%ofrespondentsnotedthattheyhadconsideredadoptingachildfrom thefostercaresystem.AnotherstudyconductedbyMacomberandcolleagues(2005) showssimilarresultswithonly33%ofthefamiliesconsideringfostercareadoption. Thesecondissuepertainstothelargernumberofchildrenwithinthefostercare systemwhohavespecialneeds.Childrenwithspecialneedsaccountfor96%ofthe fostercarepopulationinthestateofFlorida.Thispresentsamajorbarrier,because potentialparentsarenotaswillingtoadoptchildrenwhohaveadditionalneeds.The surveyconductedbytheDaveThomasFoundation(2007)foundthatonly34%of respondentswouldconsideradoptingachildwhohadspecialneeds.Macomberand colleagues(2005)alsoconductedasurveyexaminingwomensinterestinadoptions. TheresearcherscollecteddatafromanationallyrepresentativesamplefortheNational SurveyofFamilyGrowth.Womenweresurveyedabouttheirwillingnesstoadopta childwhohadspecialneeds,andfoundthatonly31%ofthesamplewouldconsiderthis typeofadoption.Thestudyalsonotedthatthewillingnessdecreasedwiththeincrease numberofmental,emotional,orphysicalproblemsthechilddisplayed(Macomber,et al.,2005). AnotherstudycommissionedbytheDepartmentofHealth(2005)regardingthe barrierstoadoptionalsofoundsimilarinterestspertainingtospecialneedsadoptions. Theresearchersinterviewed200familiesinvariousstagesoftheadoptionprocessand foundthatthespecialneedsofachildwereamajordeterminingfactoronwhetherto

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31 adopt.Thestudyspecificallyexaminedthewillingnessofpotentialparentstoconsider achildwithphysicaldisabilities,medicallyfragile,sexualactingout,orhadmultiple disabilities.Theresultsshowedthatahighpercentageoffamilieswereunwillingto adoptchildrenwiththesetypesofdiagnosesincluding:44%forphysicaldisability,50% regardingmedicallyfragile,68%ifthechildissexualactingout,and78%ifthechild hadmultipledisabilities.Theresearchshowsthatpotentialparentsarelesslikelyto consideradoptingachildwithspecialneeds,andthereforenotaswillingtoconsider fostercareadoptions(U.S.DepartmentofHealth,2005). LegislationandtheAdoptionProcess Establishingafostercaresystemandpublicadoptionprocessistheresponsibility ofeachstate.Assuch,eachstatesindividuallegislationestablishestheframeworkfor thechildwelfaresystem.However,thestateslegislationmustcomplywithfederal guidelinesthusestablishingbothstateandfederalregulationsoftheadoptionprocess. SincethisdissertationfocusesonthestateofFlorida,thediscussionwillbeonFloridas legislationestablishingadoption. TheprocessoffostercareandadoptionwasbrieflydiscussedinChapterOneand ismandatedbythestatelegislation.Floridaslegislationregardingchildwelfareis underTitleVChapter39oftheJudicialBranch.Areasspecifictotheadoptionprocess include39.601,39.701,39.01(18),39.621,39.802,and39.806(FloridaStatutesand Constitution,2009).Theprocessthechildgoesthroughtobeavailableforadoptionwill guidethediscussionofFloridaslawsestablishingtheChildWelfaresystem. Thestateshelteringachildoccurswhenabuse/neglectisconfirmedbyan investigatorwiththeDepartmentofChildrenandFamilies.Oncethisoccursacase planisdevelopedfortheparentstofollowinorderforreunificationtooccur.The

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32 purposeofacaseplanistooutlinetheservices,treatment,andmodificationsthe parentsmustmeetinordertoassurethattheywillbeabletoprovideasafe environmentifthechildisreturned.FloridaStatute39.601establishesguidelinesfor thecaseplanwhichallowthefostercareworker,familyoforigin,andthecourtsknow thepermanencygoalaswellasthestepstocompletingit.AsstatedinChapter1,the initialpermanencygoalisgenerallyreunificationwiththefamilyoforigin,howevermay changetoadoptionifreunificationisnolongeranoption. Thebiologicalparentsmustagreetothecaseplanandtakethenecessarysteps toinitiatetherequiredservices.AccordingtoStatute39.701thefamilysprogresson completingthecaseplanobjectivestowardsthegoalsistobereviewedbythecircuit courtjudgeonaperiodicbasis.Thefirstjudicialreviewisheldsixmonthspostremoval withcontinuingreviewseverysixmonthsuntilachievingpermanency.Thejudicial reviewallowsthecourtstodeterminesuitabilityofthecaseplansgoaland accommodateforanychangesthatoccur. AllowingconcurrentplanningforpermanencyofachildisprovidedbyFlorida Statute39.01(18).Thismeansthatwhileestablishingacaseplanwithallreasonable effortstoreunifythechildwiththeparentisnecessary,thefostercareworkerwillalso considerestablishinganotherpermanencygoalincludingadoption.Oncereunification isdeterminedinappropriateforthechild,Statute39.621givesthecourtsthepowerto determinethemostappropriategoal.Commonlytheprimarypermanencyoption availabletothecourtisadoption. Ifthebiologicalparentsareunabletomeettheexpectationsofthecaseplanto provideasafeenvironmentforthechild,theChildWelfaresystemwillseektoterminate

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33 parentalrights.ThefinaltwoStatutesbothaddresstheterminationofbiological parentsrightsinordertoallowthechildtobeadopted.First,Statute39.802 establishestheguidelinesthestatemustfollowwhenterminatingparentalrights. Initiatingterminationofparentalrightsrequiresthatthedepartmentfileanoriginal petitionwiththeclerkofcourtswhowillscheduleanadvisoryhearing.Thepetition mustbeinwriting,explainthegroundsfortermination,andbesignedbythepetitioner orarepresentativeofthedepartment.Theadvisoryhearingwillfinalizethetermination oftheparentsrights.Statute39.806establishesthegroundsforterminatingparental rightsandincludes:voluntarysurrender,abandonment,whetherthechildisatriskfor continuedabuse,oriftheparentisincarceratedforasubstantialportionofthechilds life.TheStatutesdescribedabovearespecifictoFloridasChildWelfareSystem; howeverFloridalikeallotherstatesmustalsofollowtheFederalLegislationand guidelinesaswell. FederalLegislation Thegoaloffederallawsistoimprovethewelfareofchildrenandpromote permanency(Adamec&Miller,2007).Thefirstfederallawimpactingwelfareof childrenwastheChildAbusePreventionandTreatmentActof1974(CAPTA).Thislaw waspassedinresponsetotheincreasingfindingsfrommedicalreportsrevealingthata largenumberofchildrenwerebeingabusedorneglected.Thegoalofthelegislation wastoshedlightonchildabuseandencouragestatestoestablishfostercarepractices inresponse(Adamec&Miller,2007).AnumberofamendmentstotheCAPTA legislation(1978,1984,1988,1992,and1996)haveoccurredwiththemostrecent beingthereauthorizationoftheactoccurringthroughtheKeepingChildrenand FamiliesSafeAct.The1978amendmentisimportantbecauseitwasthefirst

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34 legislationtoaddresstheneedsforpermanencyofchildrenwithspecialneedsby establishingtheAdoptionOpportunitiesprogram(Moe,2005).The1984amendment establishedguidelinesforfostercareworkerstosearchforadoptiveplacementevenfor childrenwithdisabilitiesorterminalconditions(Adamec&Miller,2007).Finally,the 1988amendmentsoughttoexpandtheAdoptionOpportunitiesProgramtoincludepost adoptionsupportservicesforfamilieswhoadoptedchildrenwithspecialneeds.This legislationanditsamendmentswerethefirsttoexaminetheuniqueissuesfacedby childrenwithspecialneedsandrecognizetheimportanceofpermanency(Gilman, 2001). In2003CAPTAwasreauthorizedundertheKeepingChildrenandFamiliesSafe Actof2003(KCFSA,2003).Thispieceoflegislationkeptintactthemajorityofthe provisionunderCAPTA,butsoughttoimplementprogramsthatwillincreasethe adoptionofchildrenwithspecialneeds.KCFSA(2003)alsoestablishesgrantsfor programsthateliminatebarrierstowardplacingchildrenacrossjurisdictions.Themain goalofKCFSAistoimproveplacementoptionsforchildrenwithspecialneeds.(Moe, 2005) Probablythemostwidelyknownandimpactfulchildwelfarelegislationinrecent yearsistheAdoptionsandSafeFamiliesActof1997(ASFA).Thislegislationwas passedbyPresidentClintonwiththegoalofpromotingtimelypermanency.Provision withinthelegislationincludedaccelerationofpermanentplacements,implementationof shortertimelimitsformakingdecisionsaboutpermanentplacement,safetyforabused andneglectedchildren,promotionofadoptions,andincreasedaccountability.The provisiontoacceleratepermanentplacementmeansthatstatesmustinitiatecourt

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35 proceedingtofreeachildforadoptionnolaterthanfifteenmonthsaftertheremoval fromtheirparents.Priortothislegislationmanychildrenwouldlingerinthesystemfor greaterthantwoyearswiththecaseplangoalremainingreunificationwiththebiological parents.Theideaoffreeingchildrenforadoptionquickerallowsthecaseworkersto seeksuitableplacementforthechildinanexpeditedmanner.Thelegislationalso establishesshortertimelimitsfordeterminingthemostappropriatepermanencygoalfor thechild.Statesmustholdapermanencyhearingnolaterthantwelvemonthsafterthe childenteredfostercare.Thisguidelineissixmonthspriortothepreviousstandards whichweretoholdpermanencyhearingsateighteenmonthspostremoval(Moe,2005) Theprovisionofsafetyforabusedandneglectedchildrenmeansthatthewords safetyofthechildistobeincludedineverystepofthecaseplanandreviewprocess (Adamec&Miller,2007).Furthermore,thisprovisionrequirescriminalbackground checkstobeapartoftheapprovalprocessforbothfosterandadoptiveparents.The portionofthelegislationfocusingonadoptionaimstoincreasetheamountadoptions completedwithineachstate.Inordertoencourageadoption,ASFAestablishes incentivefundsforthosestatesthatincreasetherateofadoptions.Furthermore,this portionofthelegislationalsoestablishesstatefundinghealthcare(Medicaid)for childrenwithspecialneeds.ASAFAstatesthatthechildwillmaintainMedicaid eligibilityregardlessoftheadoptiveparentsincomeorgeographicallocation.(Adamec &Miller2007) ThefinalroleofASAFAistoincreaseaccountabilityofthestatewelfaresystem. InresponsetothistheDepartmentofHealthandHumanServicesbecameaccountable formonitoringandestablishingoutcomemeasuresforeachstate.Startingin1999and

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36 eachyearafterthestatesmustreportthestatisticsonthevariousoutcomemeasures including:numberofchildrenawaitingadoptions,demographicsofawaitingchildren, andthenumberofadoptionscompleted.(Moe,2005).AFARCSisthenresponsiblefor compilingandreportingthestatusofthenationschildwelfaresystem.Thegoalofdata collectionistoimpactpolicyandproceduresatboththestateandfederallevel(Moe, 2005). HealthCoverageforAdoptedChildren ThefederallegislationASFAestablisheshealthcareforchildrenwhoareadopted fromthestatefostercaresystemandassuresthattheymaintainstatefundedMedicaid. AsdiscussedinChapter1Medicaidisastateandfederalpartnershiptoprovidehealth coverageforqualifiedindividuals.DeterminingeligibilityforMedicaidservicesis completedbythestatesDepartmentofChildrenandFamilies(DCF)andcanbe accomplishedinfourways.First,thepersonmaybecomeeligiblethroughQualified DesignatedProviders.HereapractitionerrecommendsthepersonforMedicaid coveragebasedonahealthcondition.Themostcommonqualifiedindividualsinthis categoryarewomenwhoarepregnant.Thenextpathofeligibilityislowincome familiesasdeterminedbyDCF.Lowincomefamiliesaredeterminedbythenumberof membersaswellasthefamilysincomeincludingassets.Thethirdmethodofmeeting criteriaforMedicaidservicesistobeapprovedfordisabilitybySocialSecurity Administration.Theseindividualshaveadisabilitythatsignificantlyimpactstheirability tofunctioninsocietyandmaintainemployment.Accordingtothefederallegislation ASFA1997,childrenwhohavespecialneedsandareadoptedfromthefostercare systemmaintainMedicaidcoverageuntiltheageof18.Thisisthefinalcategoryof

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37 individualswhoaredeterminedeligibleforMedicaidservices(StateofFloridaMedicaid Program,2009). Medicaidisaprogramthathelpsqualifiedindividualsreceivenecessarymedical services;howeverlikemostinsurancepoliciesMedicaidhaslimitationsonthetypeand amountofservicesthatarecoveredbytheplan(FloridaDepartmentofHealth,2009). Thelimitationsofbenefitsaredeterminedbystatelegislation,thereforevarybetween states.Inresponsetothegenerallimitationsincoverage,supplementalplanshave beendevelopedbysomestates.Thegoalofthesupplementaryplansistocover additionalservicesforpeoplewhohaveextraordinarymedicalneeds.Extraordinary medicalneedisanypersonwhohasadiagnosableemotionalorphysicaldisabilitythat wouldrequireadditionalsuppliesortreatment.Basedontheeligibleplansinthestate ofFlorida,thefollowingtwowouldapplytoanumberofchildrenintheadoptionsystem andinclude:ChildrensMedicalServices(CMS)andtheDevelopmentalDisability Waiver(AgencyforHealthCareAdministration,DevelopmentalDisabilityWaiver, 2007). ChildrensMedicalServices(CMS)isunderFloridasTitleV,andservesthe stateschildrenwithspecialhealthcareneeds.Theprogramisasupplementary managedcareplanunderthestateofFloridasMedicaidprogram,andisdesignedto provideeligiblechildrenwithintegratedmedicalservices.Eligiblechildrenarethose whoareundertheageof21,whoqualifyforstateMedicaid,andwhohaveseriousor chronicphysical,developmentalorbehavioralconditionsthatrequireextensive preventiveandmaintenancecarebeyondthatrequiredbytypicallyhealthychildren. (CMSNetwork,2008)

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38 Theothersupplementaryplanthatwillapplytochildreninthefostercaresystem istheDevelopmentalDisabilitiesWaiver(DDW).ThewaiverisaMedicaidprogramthat isdesignedtoprovidehomeandcommunity-basedservicestopeoplewith developmentaldisabilities,includingcerebralpalsy.Thegoalofthisprogramisto promote,maintain,andrestorethehealthofrecipientsinordertominimizetheeffectsof thedisabilityandpromoteoptimalindependentfunctioning.Participantsmustbe coveredunderthestateMedicaidbenefits,inordertobeeligiblefortheDDWprogram (AgencyforHealthCareAdministration,DevelopmentalDisabilityWaiver,2007). ImpactofLongTermFosterCarePlacement AsdiscussedinChapter1,thestatefostercaresystemshelterschildrenwhile theyawaitapermanenthome.Whilethisisextremelyimportantforthechild,the dynamicsofthesystemalsopresentschallengesforthechild(Bruhn,2003).Thefirst challengeisthatthefostercaresystemisdependentuponfamilieswhodecideto becomecertifiedfosterhomes.Thenumberofchildrenneedingfosterplacementis oftengreaterthanthenumberofqualifiedhomesavailable(AFARCS,2007). Differencesbetweenavailablehomesandthenumberofchildrenoftenleadtomultiple shorttermplacementswhileseekingpermanencyforthechild(Rubin,OReilly,Luan,& Lacalio,2007).Itismoredifficulttofindfosterplacementforchildrenwithspecialneeds duetotheadditionalcertificationsrequiredtoqualifyafosterhomeasmedicallyneedy. Whenasuitablehomeisnotimmediatelyavailableforthechild,theygotogrouphome orsheltersuntilasuitablehomeislocated.Therefore,childrenwithspecialneedsoften experiencemoreinstabilityintheirplacement(Rubin,OReilly,Luan,&Lacalio,2007). Thesecondissueforchildreninfostercareisthelengthoftimeuntilpermanency isachieved(Bruhn,2003).Whileanumberofpeopleconsideradoptingchildren,the

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39 frequencyofadoptionsfromthefostercaresystemareconsistentlylower.In2001, 127,000childrenwereadoptedintheUnitedStatesandonly39%oftheseadoptions werefromthepublicfostercaresystem(ChildWelfareInformationGateway,2004). Consideringtherearecurrently130,000childrenawaitingadoptioninfostercare system,theloweradoptionratewillmeanthesechildrenremaininstatefostercare longer(AFARCS,2009). Thepublicfostercaresystemdoesnotassurestabilityforthechildorhowlong thechildwillremaininfosterplacementawaitingpermanency(Bruhn,2003). Legislation,suchasASFA1997,hassoughttocorrectsomeoftheseissues;however permanentplacementhasremainedlargelyunsuccessful(Rubin&etal.,2007). Currently,theaveragelengthofstayforchildrenawaitingpermanencyisgreaterthan twoyears(AFCARS,2008).Duringthistimethechildwillexperienceapproximately fourtosixdifferentplacementsandthenumberofplacementsisgreaterforchildren withdisabilitiesorbehavioralissueswithanaverageoftentofifteendifferent placements(Bruhn,2003).Thelackofstabilityforthechildimpactsboththeir emotionalandphysicaldevelopment(Lawrence,Carlson,&Egeland,2006).The specificimpactonchildrenhasbeenthefocusforanumberofresearchstudies. Overall,theresearchconsistentlyshowsthatcontinuingfosterplacementhasa negativeimpactonthechildandassuchinterventionsshouldbedevelopedto encouragepermanency(Lawrence,Carlson,&Egeland,2006;Bruhn,2003,Rubin, OReily,Mekonnen,Luan,&Localio,2008). Badaandcolleagues(2008)evaluatedwhetherlivingarrangementsofchildren wasassociatedwiththeirbehavioralandadaptiveoutcomes.Thestudyfollowed1092

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40 childrenfrom1monthofageto3yearsoldcollectinginformationonlivingarrangement anddevelopmentaloutcomesateachclinicvisit.Attheageofthreetheresearchers administeredinstrumentstoexaminebehavioralproblemsaswellasadaptive functioning.Theresultsofthestudyrevealedasignificantincreaseinbehavioral problemswitheachmoveperyearaswellaseachyearofinvolvementinchild protectivecustody.Thesefindingssupportthatlongtermfosterplacementis detrimentaltothechildandassuchthechildprotectionagencyshouldworktowards permanencyasquicklyaspossible. Rubinandcolleagues(2007)researchedtheimpactofplacementstabilityon behavioraloutcomesforchildreninfostercare.Theresearcherscollectedinformation on729childrenfromtheNationalSurveyofChildandAdolescentWell-beingwhohad beeninfostercareforatleast18months.Thestudysoughttocontrolforextraneous variablesthatmayimpactthechildsbehaviorstodeterminethedirecteffectof instability.Themainextraneousvariablecontrolledforwasbehavioralissuesatthe timeoffostercareplacement;thereforetheresearchersonlyexaminedchildrenwhodid nothavebehavioralissuesatthetimeofremoval.Eachparticipantwascategorized accordingtothelengthoftimerequiredtoestablishstability.Thecategorieswereearly stability(stableplacementwithin45days),latestability(stableplacementbeyond45 days),andunstable(neverachievingstability).Researchersusedachildbehavioral checklisttodeterminebehavioralwell-beingofeachparticipantandthencomparedthe findingsbetweeneachcategory.Theresultsofthestudyshowedtheprobabilityof behavioralissuesamongearlystabilizerswas22%,comparedto36%inchildrenwho wereunstable.Thisshoweda63%increaseinbehavioralissuesrelatedtoinstability

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41 alone.Therefore,theresultsofthestudysupportedtheneedtoforinterventionsthat promoteplacementstabilityasameansofimprovingtheoutcomesofchildreninthe fostercaresystem. Lawrenceandcolleagues(2006)examinedtheimpactoffosterplacementonthe childsbehaviorsaswellaspsychologicalfunctioning.Thegoalofthestudywasto explorethepreandpostplacementadaptationofchildreninfostercare,andthelongtermconsequencesoffostercareonbehaviorproblems,overallemotionalhealth,and psychopathologyinadolescence.Theresearchersgatheredatotalof189participants fromtheMinnesotaLongitudinalStudyofParentsandChildren.Fromthetotalsample, theresearchersidentifiedthreesubgroups:childrenwhoenteredfostercare(46); childrenwhoweremaltreatedbutremainedathome(46);andchildrenwhodidnot experiencemaltreatmentorfostercare(97).Forthechildrenwhowereinfostercarea pre-placementbaselinewascollectedbyassessingthechildsfunctioningand developmentaladaptationduringinfancy,toddlerhood,preschoolyearsand kindergarten.Theresearchersusedvariousinstrumentstogatherinformationonthe followingvariables:attachmentquality;toddler-caregiverexperiencerating;persistence andegocontrolrating;andemotionalhealthrank.Allsub-groupswereassessedusing theChildBehaviorChecklistandKiddieScheduleforAffectiveDisordersand SchizophreniaRatings.Theresultsofthestudyshowedthatchildrenwhowerein fostercarehadsignificantchangesinbehavioralscorespreandpostplacement,witha higherrankingofbehavioralissuesuponleavingfostercare.Furtheranalysis,also revealedthattherewasasignificantdifferencebetweenthefostercaregroupandthe controlgroup(nomaltreatment/fosterplacement)inthenumberofbehavioralissues

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42 present.Thestudyalsonotedasignificantdifferenceinpsychopathologydiagnoses betweenthefostercaregroupandcontrolgroup,withthefostercaregroupshowinga higherprevalence.Overall,theresultsoftheresearchsupportedthebeliefthatfoster careincreasesthebehavioralproblemsinchildren.Furthermore,thestudy demonstratedthattheincreaseinbehavioralissueswasbeyondtheeffectsassociated withabusehistory,baselineadaptation,andsocioeconomicstatusoftheindividual. Literaturehasalsoidentifiedtheemotionalandpsychologicalimpactthatlong termfostercarehasonachild.Onestudyexaminedthepsychiatricmorbidityandrisks forsuicideamongchildrenwhowereonceplacedinfostercare(Vinnerljung,Hjern,& Lindblad,2006).Thestudyfoundthatthosechildrenwhowereinfostercarehadafour tofivetimesgreaterchanceofbeinghospitalizedforsuicideattempt.Furthermore,the resultsofthestudyalsoshowedthatchildreninfostercarewerefivetoeighttimes morelikelytobetreatedforaseriouspsychiatricdisorderintheirteens.Delilah Bruskas(2008)completedareviewoftheliteratureregardingtheexperiences associatedwithfostercare.Thesynthesisoftheliteratureshowedthatchildrenplaced infostercareoftenexperiencefeelingsofconfusion,fear,apprehensionofthe unknown,loss,sadness,anxiety,andstress.Furthermore,itisnotedthatthese feelingsofteninterferedwiththechildsdevelopmentalandmentalstability.Theauthor suggestedthatimplementingasystemicorientationforallchildrenenteringcarewill helpaddresssomeoftheseemotionalconcerns. EcologicalPerspectiveofAdoption Theecologicalsystemstheoryproposesthatthedevelopingpersonisimpactedby theinteractionsoffourseparateecologicalsystems(Bronfenbrenner,1979).Themodel definestheenvironmentasasetofnestedstructures,eachinsidethenext.

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43 (Bronfenbrenner,1979,pg.3).Atthecoreofthemodelisthedevelopingpersonwith thefourecologicalsystems,micro,meso,exo,andmacrosystems,expandingoutward. Thelevelofinfluenceonthedevelopingpersonlessensasyouexpandoutward. Therefore,theleveloftheenvironmentwiththemostimpactofthepersonwouldthe microsystemandtheleastimpactisthemacrosystem.Regardlessofthelevel influence,itisimportanttounderstandthecharacteristicswhichcomposeeach environmentinordertograsptheconceptsofthedevelopingpersonsbehaviors. ThefirstecologicalsystemdescribedbyBronfenbrenner(1979)isthe microsystem.Themicrosystemrepresentstheimmediateenvironmentinwhichthe developingpersonlives.Thissystemmayincludefamily,work,school,aswellasother areasthepersoninteractswithdirectly.Themesosystem,thesecondenvironment expandingoutward,isdefinedasthelinkageorinteractionbetweentwoormore microsystems(Anderson&Mohr,2003;Bronfenbrenner&Morris,1998).Thetheory proposesthatthelinkagebetweendifferentmicrosystemswillcreatemodificationsin thedevelopingpersonsbehaviorsandthoughts,whichimpactthemicrosystem (Bronfenbrenner&Morris,1998).Forexample,achildmayinteractbetweentwo differentmicrosystemssuchasthefamilyunitandschool.Themodelproposesthat modificationoccurasthechildinteractswiththeteacher,thereforeaffectingthechilds interactionswiththeirparents(Bronfenbrenner,1998;Trawick-Smith,2003).Achild maydosomethingwrong,bedisciplinedbyateacher,andthusdevelopanegative attitudetowardschool.Thechildthenreturnstothefamilymicrosystemanddisplays thatsamenegativeattitude,thereforedemonstratinghowthingsthatoccurinone microsystemwillmodifythechildsbehaviorsinanothermicrosystem.

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44 ThethirdecologicalsystemdescribedbyBronfenbrenneristheexosystem.This systemincludessettingsthatthedevelopingpersonmaynotdirectlyinteractwith, howeverinfluencethem.Thissystemiscomprisedofextendedfamily,neighbors,work place,andmore.Thefinalleveloftheenvironmentthatimpactsthedevelopingperson isthemacrosystem.Themacrosystemencompassesalltheothersystems,andis composedofculturalattitudesaswellaslawsandregulationsthatimpacttheshaping ofthemicrosystem(Schweiger&OBrien,2005;Bronfenbrenner,1979; Bronfenbrenner,1998;Palacios,2009). Theecologicalmodelprovidesamethodofconceptualizingtheimpactofa personsenvironmentontheirbehaviorsanddevelopment.Therefore,Schweigerand OBrien(2005)utilizedthismodeltoexaminetheadoptionprocessaswellasthe impactoftheinteractionfromeachecologicalsystem.Theecologicalperspectiveof adoptionplacestheadoptedchildatthecoreoftheenvironment.Thenextlevelofthe environment,themicrosystem,containsthechildsexperiencesistheiradoptivefamily. Whenviewingthemicrosystemofadoptionitisimportanttomaintainawarenessthat thechildentersafamilywithestablishedpatternsofinteractions.Thefamilys interactionalpatternsimpactthechildsmicrosystem.Furthermore,theadoptedchild entersthenewmicrosystemwiththeirownrelationshiphistorywhichoftenincludes abuseandneglect(Schweiger&OBrien,2005).Basedontheecologicalsystems theorytheparentsandchildareimpactedbyeachother,andassuchthisinteraction withinthemicrosystemprovidesanexplanationfortheattachmentdifficultiescommonly witnessedbyadoptivefamilies(Schweiger&OBrien,2005).Rushtonandcolleagues (2000)examinedtheimpactoftheparent/childrelationshipandidentifiedacorrelation

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45 betweenparentingandchildcharacteristicsincludingattachment.Thestudyspecifically foundthatchildrenwhoweremoreactiveanddistractiblewerelesslikelytoformsecure attachmentswiththeadoptiveparents,thusimpactingthemicrosystem(Rushton, Dance,&Quinton,2000). Accordingtotheecologicaltheory,relationshipsareanotherimportantaspect withinthemicrosystem(Schweiger&OBrien,2005;Palacios,2009).Therefore, relationshipsamongstsiblingsaswellasspousalrelationshipsareanintegral componentoftheadoptedchildsmicrosystem.Adoptedchildrenoftenenterfamilies whoeitherhavebiologicalchildrenorpreviouslyadoptedchildren,thereforethe reactionsbetweenthesiblingswillimpacttheadjustmentanddevelopmentofthe adoptedchild(Schweiger&OBrien,2005).Basedonthisinteractionalunderstanding ofthechildsmicrosystem,itisrecommendedthatsocialworkerspreparesiblingsfor theplacementofanadoptivechild(Schweiger&OBrien,2005;Mullin&Johnson, 1999).Furthermore,thisecologicalviewoftheadoptionprocesshelpshighlightthe importanceofsiblingrelationshipsonthesuccessfulplacementofthechild.Thiswill providepotentialparentswithanawarenessofthepotentialissuesthatmayneedtobe addressedinordertopromotesuccessfulintegrationoftheadoptedchild.Thespousal relationshipbetweenadoptiveparentsisalsoaconsiderationofthemicrosystem. Accordingtotheecologicalmodel,difficultiesinamarriagemayimpactthechildjustas issueswiththechildcanimpactamarriage.Theecologicalmodelprovidesa frameworktobothconceptualizethisinteractionaswellashighlighttheneedsfor interventions(Schweiger&OBrien,2005).

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46 Asstatedearlier,themesosystemdefinestheinteractionsbetweenthe microsystemsinwhichthedevelopingpersoninteractswithin(Bronfenbrenner&Morris, 1998).Accordingtotheecologicalsystemstheory,theinteractionsdefinedwithinthe mesosystemhelpunderstandtherelationshipswithinthemicrosystem.Furthermore, themodeltheorizesthatthechildsinteractionsoutsideofthemicrosystem(adoptive family)impacttheirperceptionsandbehaviorsthereforeinfluencingthewaytheyact withadoptiveparentsandsiblings.Theinfluenceswithinthemesosystemoftengo unrecognizedbythememberswithinthemicrosystem;howeverhaveahugeimpacton familyrelationships(Schweiger&OBrien,2005).Themesosystemofanadoptedchild includesthefamilyoforigin,aswellaspeersandschoolinteractions. Theecologicalviewofadoptionprovidesamethodtoconceptualizetheimpact thatthechildsprevioushistoryhasontheimmediatemicrosystem,adoptivefamily. Thechildsfamilyoforiginisamicrosysteminwhichtheyhavespentdevelopmental timewithin.Asstatedearliertheaverageageofchildadoptedfromthefostercare systemisnineyearsold.Anine-year-oldchildwillhavememoriesandexperiences fromtheirfamilyoforigin.Theseexperiencesareoftennegativeoremotionallydifficult forthechild,andthereforewillimpacttheadoptivemicrosystem(Schweiger&OBrien, 2005).Thelinkagebetweenthefamilyoforiginandtheadoptivefamilymicrosystemsis definedwithinthemesosystemofthedevelopingchild.Themesosystemrecognizes thattheadoptiveparentsdidnotanddonotparticipateintheseexperiences,however theadoptiveparentsrelationshipwiththechildwillbeaffectedbythesepast experiences(Schweiger&OBrien,2005).Theeffectsoflinkageontheadoptivefamily isoftenwitnessedthroughtheabilityofthechildtoformattachmentswiththeiradoptive

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47 parents(Derdeyn&Graves,1998).Achildssenseofabandonmentbytheirfamilyof originisoftenexpressedasangeranddisruptivebehaviorstowardstheadoptive parents,thusnegativelyimpactingtherelationship. Anotherlinkageofmicrosystemsoccursbetweenpeerrelationships,educational environment,andtheadoptivefamily.Commonly,achildwithspecialneeds experiencesmultipledisruptionsinplacementswhileawaitingadoption,andtherefore experienceschangesinschoolaswellaspeergroups.Theseexperiencesshapethe childsbehaviorsandperceptionswhichwillimpactadjustmentintotheadoptivefamily andtheirneweducationalenvironment.Basedonthemesosystemoftheecological theory,thequalityoftheparent/childrelationshipaffectsthechildsschooladjustment andpeerrelationships(Schweiger&OBrien,2005).Researchshowsthatchildrenof parentswhoarewarmerandmoresupportivetendtohavestrongerandmorepositive peerrelationships(OConnor,Jenkins,Hewitt,DeFries,&Plomin,2001).These findingssupporttheconceptoflinkagesbetweenmicrosystemsdefinedwithinthe mesosystem.Moreover,thelinkagebetweenthechildspeergroupsalsoimpactsthe microsystemoftheadoptivefamily;therefore,inclusionoftheadoptivechildwithina supportivepeergroupcontributestomorepositiveparentalrelationships(Schweiger& OBrien,2005). Theadoptionprocessrequirestheparentstobecomeapartofalarger environmentthatimpactstheirbehaviorsanddecisions.Thisenvironmentisthesocial serviceagencyandbydefinitionthisinteractionisapartoftheexosystem.Thesocial serviceagencyisresponsibleforhelpingthepotentialparentscompletethelegal aspectsofadoption.TheadoptionprocessisdiscussedinChapter1.

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48 Thefinalcomponentoftheecologicalperspectiveofadoptionisthemacrosystem. Whendefiningthemacrosystemofadoptionthefirstthingtoconsideristhedefinitionof family.Whileafamilyisoftencomposedoftermssuchasmother,father,sister, brother,thereisalsoalargersocietalandculturedefinition.Commonly,thesocietal andculturaldefinitionestablisheswhatafamilyshouldlooklike,therelationshipamong itsmembers,howfamilyisformed,aswellaswhocancallthemselvesapartofthe family(Schweiger&OBrien,2005).Thisculturaldefinitionfallswithinthemacrosystem andaccordingtotheecologicaltheoryimpactstheadoptiveperson.Adoptivefamilies oftendonotmeetthesocietalexpectationsoffamily,thereforeimpactingtheformation andcohesionofthefamilyunit(Schweiger&OBrien,2005). Theotheraspectofthemacrosystemislegislation.Legislationisanintegralpart ofadoptionandestablishesallofthepolicyandprocedures.Basedontheecological theory,thecurrentlegislationaswellasanychangesinlegislationimpactstheadoptive person.First,withoutlegislationestablishingtheadoptionprocess,theadoptivechildat thecoreofthismodelwouldnotexist.Priortolegislationchildrenwouldlingerwithin thefostercaresystemuntiltheybecameoldenoughtocareforthemselves(McKenzie, 1993).Thenextissueishowchangesinlegislationimpacttheadoptiveperson.For example,thepassageofAdoptionsandSafeFamiliesActof1997impactedthe adoptivepersonbyimplementingMedicaidinsuranceforeachchildwithintheadoption system.Theimplementationofinsurancechangestheadoptivepersonaswellastheir otherenvironmentsbyprovidingaccesstomedicalcare. Theecologicalperspectiveofadoptionprovidesamethodofconceptualizingthe adoptivechildsenvironment.Furthermore,thismodelassistsinunderstandinghowthe

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49 childsbehaviorsareformed,molded,andpotentiallychanged.Thisunderstanding assistsingainingperspectiveonadoptionaswellashowtomodifythesysteminorder toachievechangesintheadoptivechild. IssueswithintheAdoptionSystem Asmentionedearlierthenumberofadoptionsfinalizedfromthepublicfostercare systemislowerthanthosefromprivateorinternationaladoptionfacilities(ChildWelfare InformationGateway,2004).Researchhassoughttoexploresomeoftheissuesthat makepotentialparentslesswillingtoconsiderfostercareadoption.Theliterature demonstratesanumberofissuesrelatedtoboththestructuralprocessofadoptionas wellasthecharacteristicsofthechildrenavailableforadoptionfromthefostercare system. TheU.S.DepartmentofHealthandHumanServicescommissionedresearchers todevelopastudytoexplorethebarrierspresentateachstageoftheadoptionprocess. Theresearchersrecruited200familiesseekingtoadoptchildrenwithspecialneeds fromthepublicfostercaresystemtoparticipate.Eachparticipanttookpartinin-depth interviewsregardingtheirexperiencesandopinionsontheadoptionprocess.Thegoal oftheinterviewwastodeterminetheactualandpotentialbarriersofcompletingthe adoptionprocess.Inordertocollectinformationoneachstageoftheprocess researchersclassifiedtheinterviewsinfivedifferentgroupsaccordingtowherethe familywasintheadoptionprocess.Thefivegroupswereasfollows:1)initialcontact andorientationwiththeadoptionagency,2)familieswhocompletedanapplicationbut discontinuedpriortoapproval,3)familieswhocompletedtheirhomestudyandtraining butneverhadachildplacedwiththem,4)familieswhohadachildplacedbutdidnot

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50 followthroughwiththefinalizationofadoption,and5)familieswhocompletedthe adoptionprocess(U.S.DepartmentofHealthandHumanServices,2005). Inorderanalyzethedatatheresearcherscodedthefamilysexperienceofthe adoptionprocesstoassesschild,family,andagencybarriersencountered. Categorizationofthecodeswasplacedunderthelabelsofchild,family,oragency factors.Thechildfactorsincludedthechildsabilitytoattachtoadoptivefamilies,foster careexperiencesandhistory,behavior,health,mentalhealth,educationalneeds,and demographics.Thefamilyfactorswerefamilycommitment,abilitytointeractwiththe system,availablesupport,preparationandexpectations,familydynamics,child integration,parentingabilities,personalcircumstances,andfamilydistress.Thefinal category,agencyfactors,wereavailabilityofservices;agencyemotionalsupport; availabilityoffinancialsupport;adoptionprocess;legalsysteminteractions;family assessment;levelofagencybiasandculturalcompetence;andagencycommunication orresponsiveness(informationsharinganddisclosure).Theanalysisoftheinterviews showedthatchildfactorswereoverallamajorbarriertofamiliesinallstepsofthe process.Specifically,77%offamiliesingroupfourand40%ofthefamiliesingroup5 notedthistobeofparticularconcerntothem.Thestudyalsonotedthatthemost frequentlyreportedchildfactorwasthechildsmentalhealth.Thecategoryoffamily factorswasmostcommonlyseenreportedingroups1and2whichexitedtheadoption processintheearlystages.Familieswhocompletedtheadoptionprocess(group5) reportedtheleastamountoffamilyissues.Familieswithinallfivegroupsreported agencyfactorsasabarriertotheiroverallexperience:80%offamiliesingroup1;93% ofthefamiliesingroup2;and100%orallofthefamiliesingroups3,4,and5.The

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51 mostcommonagencyfactorwasthelogisticsofadoptionprocess,asreportedby93% ofthefamilies.Asecondmostcommonfactorwasthelackofinformationprovidedto thefamiliesbytheadoptionagencyasreportedby80%ofthefamilies.Thestudyshed lightontheissuesthatarepresentinthepublicfostercaresystem. TheU.S.DepartmentofHealthandHumanServices(2008)alsocommissioned researchonadoptionstaffmembersperceptionsofthebarrierstoadoption.The researchersrecruitedanationwidesampleofprivateandpublicadoptionagencystaff. Theparticipantsweregivena29itemsurveytoassessagencyandsystembarriers, familyandchildbarriers,solutionstoovercomebarriers,andchildspreparationfor adoption.Eachrespondentwasaskedtoratethesurveyfactoronascaleofonetofive dependingonhowstronglytheyfeltthefactorwasabarrier.Thescalestartedatone (notabarrier)andwentuptofive(indicatingamajorbarrier).Theresearcherssentout 1,659surveysinbothhardandelectronicformstoadoptionagencyacross34states andWashington,D.C.Ultimately,382surveysfromstafflocatedin29differentstates andWashington,D.C.werereturned.Thesurveyindicatedthat67%oftheparticipants feltthataninadequatepooloffamiliesinterestedinadoptingchildrenwithspecialneeds ismajorbarrier.Participantsalsofeltthattheavailabilityofpost-adoptionservicesand lackofrespitecarewasanotheragencybarrier,asreportedby42%oftherespondents. Someofthefamilybarriersidentifiedweretheprospectiveparentsspecificityinthe typeofchilddesired;theparentsinabilityorunwillingnesstoacceptcertain characteristicsinthechildshistory;parentsunwillingnesstoaccessservicesor communityresources;andthelackofexperiencewithchildrenwhohavespecialneeds. Sixtysevenpercentofrespondentsnotedthatspecificityintypeofchilddesiredwasa

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52 majorbarrier.Theparticipantfeltthattheparentsseekingtoadoptfromthefostercare systemhaveanunrealexpectationaboutthetypeofchildrenavailableaswellasthe behavioralexpectationsofchildrenwithspecialneeds.Specifically,respondents reportedthatparentswerelookingforayoungchildwithminimalspecialneeds. Parentsbeingunwillingtoacceptcharacteristicsofthechildsbackgroundwere identifiedasamajorbarrierby45%oftherespondents.Theserespondentsnotedthat potentialparentswereuneducatedandconfusedregardingthepowerofalovingfamily. Theunwillingnessofafamilytoaccessserviceswasnotedby44%ofthepeople surveyed.Thefinalfamilybarriernotedwaslackofexperiencewithspecialneeds childrenandwasidentifiedby41%oftheparticipants.Therespondentsnotedthatthe lackofexperiencereinforcedtheunrealisticexpectationregardingthechildsbehavior andabilities. Thefinalcategoryofbarriersassessedwascharacteristicsofthechild.The resultsofthesurveyshowthat84%ofrespondentsidentifiedtheageofthechildasa majorbarrier.Ifachildwasengaginginsexualbehaviors81%reportedthatthiswasa majorbarrier.Seventyeightpercentoftherespondentsnotedthatsexuallyactingout wasamajorbarrierwhenparentsconsideradoption.Finally50%oftherespondents statedthatthechilddisplayingbehaviorproblemsinthehomewasamajorbarrierinthe completionoftheadoptionprocess.Overallthestudyrevealedhowimportanta numberoftheseissueswereinthecompletionoftheadoptionprocess.The researchersrecommendedthatincreasededucation,awarenesstraining,and recruitmentoffamilieswouldhelpreducetheimpactoftheseissues.

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53 AsdiscussedinChapter1,thestateofFloridasadoptionsystemhasreviewedthe perceivedbarrierswithinitsfostercaresystemaswell(OPPAGA,2008).Similartothe literatureonthebarriers,Floridahasidentifiedalackoffamilieswillingtoadoptchildren withspecialneedsasthenumberonechallengethatthestatesfostercaresystem faces.Thereviewalsoidentifiedalackofinformationandsupportfromtheadoption agencyasmajorbarrieraswell.Duetothebarriersfacingthefostercaresystem,an interventiontohelpincreasethenumberofpermanentplacementsshouldbe addressed. LifeCarePlanning Lifecareplanningisarapidlygrowingsubspecialtywithintheprofessionalfieldof rehabilitation(Weed,2004).Thefieldoflifecareplanningwasfirstintroducedin1981 throughthelegalpublicationDamagesinTortActions (Deutsch&Raffa,1981).The publicationproposedtheuseoflifecareplansasamethodofestablishingguidelinesto determinedamagesincivillitigation.Theuseoflifecareplansincivilcasesbecame oneoftheprimaryfunctionsofthedocument;howeverlifecareplansheldgreat potentialforothervenues.Inadditiontocivillitigation,lifecareplanswereintroducedto thehealthcareindustryin1985throughthepublicationofGuidetoRehabilitation (Deutsch&Sawyer,1985).Thedevelopmentanduseoflifecareplanswithinthe healthcarearenaprovidesrehabilitationprofessionalswithestablishedguidelinesfor assessingthepatientsdisabilityrelatedneedsthroughlifeexpectancy(RiddickGrisham,2004).Sincetheintroductionoflifecareplansforuseincivillitigationandin thehealtharena,lifecareplanninghasgrowntobeawidelyacceptedandvaluedtool withintherehabilitationfield(Weed,2004).Withthegrowingpopularity,professionals startedcreatinglifecareplansusinginavarietyofdifferentmethodsaswellasusing

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54 plansinwaysthatwerenotinitiallyintended(Weed,2004).Inresponsetogrowing developmentanduseoflifecareplans,therebecameneedforstandardizationoflife careplanningtocreateauniformpractice. In1992,leaderswithinthelifecareplanningfieldmettodiscusstheneedsfor trainingonauniversalmethodofcreatinglifecareplans(Weed,2004).They establishedanintensivesixteendaytrainingcoursewhichwouldteachrehabilitation professionalsthemethodsandeffectiveusesofalifecareplan.Sincethattime,the fieldoflifecareplanningcontinuestogrowandnowtherearemultipletraining programsdesignedforbothnoviceandadvancedpractitioners(Riddick-Grisham, 2004).Establishingatrainingprogramopenedthedoorforthesubspecialtyoflifecare planningtoconsiderdevelopingaboardcertificationprocess.In2003theCommission onHealthCareCertification(CHCC),establishedtheCertifiedLifeCarePlanner.With astandardizededucationandcertificationsystem,theoncefragmentedfieldmergedto formtheprofessionalorganizationofInternationalAcademyofLifeCarePlanners.In 2003thisorganizationpublishedastandarddefinitionofalifecareplanaswellas StandardsofPracticeforlifecareplannerstofollow(InternationalAcademyofLifeCare Planners,2003).Thecollaborationofleadersandtheorganizationagreeduponthe followingdefinition: ALifeCarePlanisadynamicdocumentbaseduponpublishedstandards ofpractice,comprehensiveassessment,dataanalysisandresearch,which providesanorganizedconciseplanforcurrentandfutureneedswith associatedcosts,forindividualswhohaveexperiencedcatastrophicinjury orhavechronichealthcareneeds.(InternationalAcademyofLifeCare Planners,2003). TheStandardsofPracticeisregularlyupdatedwiththemostrecentpublication occurringin2006.Alifecareplannerpracticeswithintheguidelinesofthe

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55 organizationspublishedstandards.Thesestandardsdefinethelifecareplannersrole andprovideguidanceforthecompletionofthelifecareplanningprocess(International AcademyofLifeCarePlanner,2006). RoleofaLifeCarePlanner Lifecareplanningisamultidisciplinaryspecialtyrangingfromnursesto rehabilitationcounselorswhodeveloplifecareplans.Therefore,itisimportantforthe lifecareplannertoestablishaphilosophicalbasisregardingtheirroleinthelifecare planningprocess(Deutsch&Sawyer,2002).Whenestablishingaphilosophicalbasis, alifecareplannershouldexaminethescopeofpractice,professionalstandards,and basicproceduraltenets(Deutsch,2007).Theseguidelinesestablishthelifecare plannerasprimarilyanobjectiveeducator,regardlessofthepurposeinwhichthelife careplanisbeingdeveloped.Itistheroleofalifecareplannertoeducatetheir audienceandtheirtoolisthelifecareplan(Deutsch,2006).Although,beingan educatoristheprimaryresponsibilityofalifecareplanner;theymaytakeonanumber ofdifferentrolesthroughoutthelifecareplanningprocessinordertoobtainthe necessaryinformation.Coordinationandcommunicationwithappropriateteam membersisavitalroleforalifecareplanner(Riddick-Grisham,2004).Itisessential wheneverpossibleforthelifecareplannertoconsultwithteammembersforthe individualinordertogainanunderstandingoftheroutinecarethepersonwillrequire. Sometimes,thelifecareplannermayeventakeonthesubsequentroleofmanaging thepatientscare(Riddick-Grisham,2004). Thelifecareplanningstandardsestablisheightprimaryfunctionsofalifecare plannerregardlessoftheirroles(InternationalAcademyofLifeCarePlanners,2003). Thefirstfunctionisdatacollection.Thelifecareplannercompilesdatainasystematic,

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56 comprehensive,andaccuratemethodfrompublishedresourcesaswellasmedical records.Thesecondfunctionisassessment,whichincludesanalysisofthedatato determinetheindividualsfutureneeds.Thenextprimaryfunctionisplanning. Planningisthedevelopmentofthelifecareplanrecommendationsutilizingaconsistent methodologyalongwiththecompletionofthewrittenplan.Collaboration,beingthe fourthfunction,isanimportantpartofthelifecareplanningprocessbecauseitallows thelifecareplannertoobtainprofessionalopinionswhenformulatingrecommendations. Thefifthfunctionisplandevelopmentresearch,whichestablishestherationaleand supportfortherecommendationinthelifecareplan.Thelifecareplannercanachieve thisbyresearchingstandardsofcareorpeerreviewedinformation.Thesixthfunction isfacilitation,whichincludesremainingobjectivetoresolveanydisagreementsabout appropriaterecommendationsforthelifecareplan.Furthermore,facilitationincludes educatingtheinvolvedpartiesontheprocessoflifecareplanninginordertoelicittheir participation.Theseventhfunctionisevaluation,whichisreviewingandrevisingthelife careplantoassureinternalconsistency.Thefinalfunctionofalifecareplanneris testimonyandcompletionofthisfunctionisdependentuponthereasonforthe developmentofthelifecareplan.Thesefunctionsareevidentthroughouttheprocessof lifecareplanning(InternationalAcademyofLifeCarePlanners,2006). ProcessofLifeCarePlanning Whilethephilosophicalbasisofthelifecareplannerisaneducator,itistheir responsibilitytodevelopthelifecareplan.Thefieldoflifecareplanninghas14 recognizedtenetsthatestablishthebasistodevelopaneffectivelifecareplan.Table1 displaysalistingofthesetenets.Whendevelopingalifecareplan,itisessentialto followtherecognizedtentstoassureaconsistentmethodology.Auniformapproachto

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57 developingthelifecareplanallowstheprofessionaltoestablishvalidandeffective strategiesforeachindividual(Riddick-Grisham,2004). Afterthelifecareplannerhasagoodunderstandingofthetenetspertainingtolife careplanning,theprocessofdevelopingtheplancanbegin.Ofcourse,theprocessof lifecareplanningbeginswithareferralorsomedeterminedneedtodevelopaplan.It isimportantforthelifecareplannertoreviewthereferralanddeterminethefollowing: timeframeinwhichtheplanhastobecompleted,billingagreements,andanyretainer informationthatisapplicabletothecase(Weed,2004). Thenextstepistoobtainacompletesetofmedicalrecords.Thelifecareplanner wantsmedicalrecordstobeascompleteaspossibleandincludesnursesnotes physiciansorder,ambulancereport,consultantsreport,admissionanddischarge summaries,homecarenotes,aswellasanylaboratoryorradiographicreports(Weed, 2004,pg.25).Thelifecareplannerobtainstherecordsfromthevarioussourcesand thencompletesathoroughreviewnotinganyimportantinformationregardingthe individualscatastrophicinjury.Informationobtainedfromthemedicalrecordsincludes; primaryandsecondarydiagnosis,problemlists,currentproviders,frequency,duration, treatmentcomplications;medicationusageandresponse;alongwithanyrehabilitation outcomes(Riddick-Grisham,2004).Thelifecareplannercompletesthereviewof medicalrecordsbywritingasummary.Thesummaryofmedicalrecordshelpsdevelop questionsfortheinitialinterviewwiththeindividual. Thenextstepingatheringvaluableinformationregardingtheindividualsdisability relatedneeds,istheinitialinterview.Theinitialinterviewisusuallyconductedatthe individualshomesoastoprovideabetterunderstandingofthepersonsneedsand

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58 currentleveloffunctioning(OKeefe,2001).Thefirstinterviewcanlastanywherefrom threetofivehoursandwillhelpthelifecareplannergainanunderstandingofthe patientsdailycarerequirements(amountoftime,equipment,levelofassistance needed,aswellasidentifythoseprovidingcare)(Riddick-Grisham,2004).When available,itisimportanttoincludeanyfamilyorothermembersthatmaybecaringfor thisindividualtoobtainadditionalperspectivesregardingtheimpactofthedisabilityon thepersonsfunctioning(OKeefe,2001).Sincetheinterviewisverylengthyanditis necessarytoobtainlargeamountsofinformation,manylifecareplannersusecheck listsorinterviewformstoguidetheprocess(Weed,2004).Theinterviewprocesswill obtaininformationregardingtheindividualsmedicalhistory,treatmentplan,therapy team,education,workhistory,medications,supplies,adjustmenttodisability,daily schedule,andtransportationneeds.Furthermore,whilecompletingtheinterview processthelifecareplannermayobtainpicturesofanyequipment,medicines,or necessaryaccommodationinordertosupportrecommendationsofthelifecareplan (Weed,2004;Riddick-Grisham,2004). Aspreviouslynoted,oneoftheimportantrolesofalifecareplanneristhatofa teamcoordinator.Asateamcoordinator,itistheresponsibilityofthelifecareplanner toconsultwithotheralliedhealthprofessionalsinvolvedintheroutinecareofthe individual(Riddick-Grisham,2004).Theconsultationcanoccureitherthroughwritingor personalcontact.Somelifecareplannerschoosetowritelettersandincludequestions fortheprofessionaltocompleteinhisorherowntimeandreturntothelifecare planner.Whereas,otherlifecareplannerschoosetoeitherschedulephoneorinpersonmeetingstoobtainthenecessaryinformation.Themethodinwhichconsultation

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59 occursdependsonthepreferenceoftheindividualdevelopingthelifecareplan.Once thelifecareplanneraccessesthetreatmentteamforconsultation,itbecomesavery valuablestepoftheprocess.Theconsultationallowsthelifecareplannertoobtain professionalopinionsregardingthefutureneedsoftheindividual,suchasthetypeand frequencyofservicesnecessary.Thiscollaborationofinformationassiststhelifecare plannerinestablishingamedicalbasisfortheirrecommendations(Riddick-Grisham, 2004).Inordertogainadditionalinformationandsupport,thelifecareplannermay alsoreferencepublishedstandardsofcareorotherpeerreviewedjournal/booksources. Atthispointintheprocess,thelifecareplannershouldhaveapreliminaryideaof therecommendationsthelifecareplanwillpropose(Woods,2004).Withthe preliminaryplaninmind,thelifecareplannermustcompleteevidencebasedresearch (Riddick-Grisham,2004).Evidencebasedresearchisanotherimportantpartofthe process,asitprovidesfurtherrationaleandsupportfortherecommendations.Thelife careplannershouldbeawareofthenecessaryresearchmethods,aswellashavean understandingofpeerreviewedinformation(Deutsch,2006).Researchisconductedto obtaininformationintwoareas:evidentialsupportandcostanalysis.Gathering evidentialsupportincludesidentifyingarticles,standardsofcare,orotherreputable sourcesthatproviderationalefortherecommendationineachareaofthelifecareplan (Woods,2004).Forexample,thelifecareplanneriscompletingaplanforaperson withcerebralpalsyandtheplanrecommendsabaclofenpump.Thequestionthen becomeswhythispersonneedstheequipment.Theresearchdocumentationregarding theeffectivenessofthistreatmentformusclespasticitywillanswerwhythebaclofen pumpwasincluded.Theuseofresearchtosupportrecommendationshelpsthelife

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60 careplananswerquestionsregardingdisabilityrelatedneeds,ratherthancreatingnew ones.Thisfollowstenetfourofthelifecareplanningprocess. Thesecondareainwhichthelifecareplannerwillgathernecessaryresearchis throughestablishingthecostofeachtreatment,medications,supplies,andequipment recommendedinthelifecareplan(Weed,2004).Whileassessingthecostofsupplies orservices,itisimportanttofollowspecificprocedures.Asdescribedintenetfiveofthe lifecareplanningprocess,itisimportanttonotdependononesourcetodetermine cost.Therefore,thelifecareplannerwillneedtoobtainpricesfrommultiplesourcesto determinethecostthatwillbeincludedinthelifecareplan.Sourcesonpricingcome fromproductcatalogs,supplierwebsites,flyers,orlocalserviceproviders.One importantissuetonotewhiledeterminingcostwithinalifecareplanistenettwelve, whichstatesthatallpotentialcomplicationsandfuturetechnologiesarenotconsidered inthecostofthelifecareplan(Riddick-Grisham,2004).Thelaststepinthelifecare planningprocessisthepresentationofthelifecareplan.Thelifecareplanisan organizedmethodofpresentingtheinformationobtainedthroughoutthelifecare planningprocess.Eachlifecareplannerchoosestheirmethodofdisplayingthe information,howevertheplansshouldcontaindocumentationoftheneedforandcost ofeachgivenitem,theexpecteddurationofthatneed,andtheprojectedfrequencyand costoftheitemsreplacement(Riddick-Sherman,2004).Furthermore,thereare standardareasinwhicheachindividualsneedsareassessed.Thebroadareasare listedinTable2withanexampleofsomeoftherecommendationswithineacharea. Thelifecareplanningprocesshasanumberofconsistentstepsinorderto achievethefinalproductandisnecessarytoassureconsistentmethodologywhen

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61 approachingtheorganizationofdisabilityrelatedneeds.Thisprocessassuresthatthe lifecareplanestablishesamedical,rehabilitation,casemanagement,and psychologicalfoundationfortheplan,thusassuringavalidrationaleandbasis (Deutsch,2006). UniqueConsiderationstotheLifeCarePlanningProcess Whencompletingthelifecareplanningprocess,therearesomeissuesthatthelife careplannermustcontinuallyaddress.First,isthefactthatthelifecareplanisamultidimensionaldocument,andthereforetheareasofthelifecareplanandtheir recommendationsinteractwitheachother(Deutsch&Sawyer,2002).Thisinteraction isimportanttorecognizeandavoidbecauseitwillresultinanoverlapoftheservices thatarerecommendedfortheindividual.Asanexample,ifalifecarerecommendsa weeklongtherapeuticcamp,itisimportanttorecognizetheeffectthiswillhaveonthe amountofhomeaidcareandregulartherapeuticservicesnecessary.Therefore,ifthe childisgoneforaweek,thelifecareplannerwillsubtractthisamountoftimefromthe necessaryareas. Anothermatterofimportanceishowthelifecareplannerassessesthecostof servicesbasedonfrequency.Thisisanissuebecauseitisreasonabletoassumethat therapeuticservicesandtheprofessionalwillnotbeavailable365daysayeardueto holidays,vacations,orsickleave.Keepingthisinmind,aguidelineforassessing frequencyistousetheconceptofatherapyyearwhichhas48weeks.Usingthe therapyyearwillassurethelifecareplandoesnotoverestimatetheamountorcostof therapeuticservicesnecessary(Deutsch,2006). Alifecareplanisneedsdrivenandnotfundingdriven.However,itisimportantfor thelifecareplannertobeconsciousofcollateralsources(Deutsch&Sawyer,2002).

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62 Collateralsourcesareanyotherprogramsthatmayfundorprovidetheservicesthat arerecommendedwithinthelifecareplan.Alifecareplandoesnotdependonthe collateralsourcesalthough,itisimportantfortheplantomakenoteoftheavailable sourceswhenapplicable.Oneofthemajorcollateralsourcestoconsideristhefederal legislationofIndividualswithDisabilitiesEducationAct(IDEA).UnderIDEA,theschool systemsprovideeducationallyrelatedtherapeuticservicestotheindividualatnocost (IDEA,2004).Thiswouldimpacttherecommendationintheareasofprojected therapeuticevaluationsandprojectedtherapeuticservices,whichshouldbenoted withintheplan. Thefinaluniqueissuethispaperwillreviewistheconsiderationsgiventothearea ofhomecareversusfacilitybasedneeds.Therecommendationsinthisareamaynot alwaysbecleartothelifecareplanner.Anumberoffactorsmustbeconsidered includingtheavailabilityoffamilialsupport,geographicalarea,andtheprogressive needsoftheindividualastheyage. Toaddressthesemultipleissues,thelifecareplannermayproposedifferent optionsofcarefortheindividual.Theoptionsoftenincludewaystokeeptheindividual functioningindependentlyaswellasassistedlivingorfacilitybasedcarewhen necessary.Thelifecareplanwillidentifyandassessthecostforeachoption individually.Theproposalofmultipleoptionsallowstheplantoadjusttothechanging needsoftheindividual. PreliminaryResearch Todeterminethebarrierstoadoptionandthefeasibilityoflifecareplansto addresstheproblemswithspecialneedsadoptions,threepilotstudieswereperformed. Thegoalofthefirststudywastoidentifythebarriersadoptioncasemanagers

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63 experiencewhenattemptingtoplaceachildwhohasspecialneeds.Thesecond researchstudyexaminedthefeasibilityofdevelopingaMedicaidbasedlifecareplan. Thethirdstudyexploredtheperceptionsofparentswhoadoptedchildrenwithspecial needs,andthebarrierstheyconfronted.Thepreliminaryfindingsofthesethreestudies establishtheframeworktoexploretheuseoflifecareplansintheprocessofadoption. Inordertoexploretheexperiencesofadoptioncasemanagers,theresearcher employedqualitativemethodsthatincludedsemi-structuredinterviewswithfive adoptioncasemanagers.Eachparticipantwasactivelyworkingwithintheadoption fieldandhadbothpastandpresentexperiencewithspecialneedsadoptions.A numberofthemesemergedfromtheinterviewsincluding:lackofinformationregarding disabilities,uncertaintyofthechildsfuture,andfearofcaringforthechild.Itwas determinedthatthesebarrierslimittheadoptionofchildrenwithdisabilities. Thefirstthemewasthelackofknowledgeaboutandunderstandingofdisabilities thepotentialparentshad,resultinginaninabilitytograsparealisticpictureoftheneeds ofthechild.Thisthemeoradoptionbarrierwasexacerbatedbythecasemanagers lackofunderstandingregardingdisabilitiesaswell;thereforethecasemanagerswere unabletoanswerpotentialparentsquestionsregardingthechildsdisabilityrelated needs.Anotherbarrierrelatedtothelackofknowledgeistheassumeduncertaintyof thechildsfuture.Thecasemanagersstatedthatpotentialparentsoftenexpressed concernsregardingthequalityofthefutureofachildwithadisability.Finally,thecase managersstatedthatthelackofinformationandunderstandingofthechildsneeds createdfearandinsecuritiesaboutpotentialparentsabilitiestoadequatelymanagethe careofthechild.Lifecareplanningisatoolthatcanaddressallthethemesthatwere

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64 identifiedbythecasemanagers,thusreducingthebarriersassociatedwithspecial needsadoptions. Asstatedearlier,childrenwhoareadoptedfromthepublicadoptionsystem maintainMedicaidforalltheirhealthneeds.Therefore,animportantstepindetermine thefeasibilityoflifecareplanningintheadoptionsystemwastoexamineifMedicaid wouldcoverthenecessaryexpenses.ThisstudyfocusedondeterminingifaMedicaid basedlifecareplanwasfeasible.Theprincipalinvestigatorreviewedalifecareplan obtainedfromanexperiencedplanner.Thelifecareplanwasdevelopedforafiveyear oldchildwhowasbornwithcerebralpalsy.Thefirststepinthecomparisonprocess wastodetermineallstatebasedinsuranceprogramsthatthechildwaseligiblefor. Basedoneligibilityrequirements,thechildwouldhavebeencoveredbystateMedicaid, ChildrensMedicalServices,andDevelopmentalDisabilityWaiver.Eachsectionofthe lifecareplanwascomparedtowhatMedicaidandthesupplementalinsurance programswouldcover. Overall,thecomparisonbetweenthesamplelifecareplanandtheservices providedbystateMedicaidshowedthatthemajorityofthechildsneedswerecovered byatleastoneofthreeMedicaidprogramsthechildwaseligiblefor.Theresearcher reviewedallsectionsofthelifecareplan,andspecificallyidentifiedthesimilaritiesand differencesofservices.Therewereonlytwosectionsofthelifecareplanwherenone oftherecommendationswerecoveredbyMedicaidprogramsincluding:leisuretimeand aidsforindependentfunctioning.Undereachofthesesectionrecommendationsfor adaptivetoys,assistivecomputers,andsummercampwereincluded.Sincethe majorityofthechildsmedicallybasedneedsarereimbursablethroughthestate

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65 insuranceprograms,theresearcherconcludedthataMedicaidbasedlifecareplanwas afeasiblemethodofoutliningapersonsneeds. Thethirdstudyexploredthebarriersintheadoptionprocessfromtheperspective ofparentswhoadoptedchildrenwithspecialneeds.Theideaisthatlifecareplanswill mayhelpintheadoptionprocesssoitwasessentialtogatherinsightonparentsfelt someoftheproblemswhere.Therefore,theresearcheremployedqualitativemethods duetotheexploratorytheopinionsofparentswhohaveadoptedchildrenwithspecial needs.Theparticipantstookpartinin-depthinterviewsaimedatgatheringinformation regardingtheirperceptionsofthebarriers.Atotalofeightparticipantswereinterviewed andthechildsdiagnosisrangedfromemotionaltophysicaldisabilities.Anumberof themesemergedfromtheinterviewsateachstepoftheprocess.Thethemeswere categorizedaccordingtowhichstepthebarrierwaspresentandincluded:initialcontact; adoptionprocess;andpostadoptionplacement. Theparentsexpressedanumberofdifferentthemesrelatedtoinitialcontactwith theadoptionagency.Someoftheparticipantsfeltthattheywerejumpingthrough hurdlesinordertobeeligibletoadoptachild.Thefamiliesnotedthattheyhadtotake partinmultipleinterviewsandahomestudyinordertoshowtheagencythattheywere anappropriateplacementforthechild.Thebarriersnotedinthisstageoftheprocess weretheamounttime,frustration,andfamilialintrusion. Theadoptionprocessitselfpresentedanumberofissuesforthefamilies.The biggestproblemexpressedwasthelackofinformationprovidedonthechildsphysical andemotionalhealth.Anumberofparticipantsfeltthattheadoptionsagencyleft informationoutordidnotprovideenoughinformationtogetanaccuratepictureofthe

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66 child.Oneparticipantstated,Youwonderwhydonttheygiveyouthisinformationare theyafraidyouarenotgoingtoadoptthechild.Thefinalcategoryofpostadoption placementrevealedanumberofissuesandemotionsthefamiliesexperienced. Feelingsofshock,abandonment,frustration,andlonelinesswereallthingsexpressed bytheparents.Theparticipantsexpressedthattheagencyprovidednothingtothem uponfinalization.Thislefttheparentsfeelinglostandconfusedastohowtogethelp fortheissuestheirchildrenwerehaving.Anumberofparticipantsstatedtheyfelt abandonbytheadoptionagency,becauseclearlythechildrenhadissuespriortothe adoptionthatwerenotbroughtup.Furthermore,someoftheparentsdiscussedcalling theagencyseekinghelpandweretoldthattherewasnothingthatcouldbedone. Againthiscreatingafeelingofabandonment,frustration,andbeingallalone.In describingtheirexperienceswithadoptionanumberoftheparentsstatedthatitwas challengingandfrustratingbecausetherewasnosupportavailable.Thisresearch highlightstheneedforparentstohaveguidanceinunderstandingtheirchildsdisability oncetheadoptionisfinalized. Thepreliminarystudiesshowedthattherewereanumberofperceivedbarriers whenplacingchildrenwithspecialneeds.Lifecareplanninghasthepotentialtohelp overcomemanyofthesebarriers.Sincechildrenwhoareadoptedinthestateof FloridamaintainMedicaid,alifecareplanhastobeorganizedaroundthisfunding source.ThefeasibilityofestablishingaMedicaidbasedlifecareplanwasconfirmed throughresearch.Therefore,theuseoflifecareplanswithintheadoptionsystemcould serveasavaluabletooltohelppromotespecialneedsadoptions.

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67 Tenet Description 1Firstandforemost,lifecareplannersarerehabilitationprofessionalsandeducators 2Allplanrecommendationshouldclearlyrelatetopatient-specificevaluationdata 3Assumetheprobabilityofsuccessofrecommendations 4Lifecareplansaredesignedtoanswerquestions,notraisethem 5 Lifecareplansspecifyprovisionsthroughoutlifeexpectancyandcannotdependonanyoneindividual,service,orsupplierto fulfillplanrecommendations 6Recommendationmustconsiderdisability,individual,family,andregionalfactors 7Attendtodetails 8Recommendationsareproactive,notreactive 9Recognizethebenefitsofmaximizingpatientpotential 10Lifecareplanningismultidimensional 11Considertheentirecostofeachrecommendation 12Thecostsprovidedinalifecareplandonotincludetwoimportantcategories:potentialcomplicationsandfuturetechnology 13Considerthepsychologicaleffectsoftheinjuryanddisability 14Disabilityinteractswithagetoproduceadditionalconcerns Table2-1.Tenetsoflifecareplanning

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68 Table2-2.Areasofthelifecareplan AreaofLifeCarePlanTypesofRecommendation ProjectedEvaluationHealthrelatedprofessionalevaluation(PT,OT,RT,etc.) ProjectedTherapeuticModalities Displaystype,schedule,frequency,&durationofplannedtherapies.Forexample, PT,OT,etc. DiagnosticTestingandEducation Assessment Educationaltestingrequirements,specialed.needs,vocationtraining,orcollege educationprograms WheelchairNeedsVariouswheelchairtypes(electric,manual,sports,etc.) WheelchairAccessoriesand Maintenance Includesbags,cushions,trays,batteries,etc.Aswellasmaintenanceofany recommendedchair. OrthopedicorProstheticRequirementsAnyupper/lowersplinting,etc. HomeFurnishingsandAccessories Furnishingfromhandheldshowerstoliftreclinersthatwillimprovethequalityoflife oftheperson. AidsforIndependentFunctionAnyassistivetechnologythatismedicallyneeded. MedicationIncludesprescriptionandoverthecounterdisabilityrelatedmedications. SupplyNeedsLatexgloves,gauze,cauterizationsupplies,etc. HomeCareorFacility-BasedCare Needs Withinhome(respitecare,housecleaners,homehealthaides)orthechoicefor residentialsetting ProjectedRoutineMedicalCareAnyanticipatedmedicalneedsbasedonthetreatmentteam. AggressiveMedicalCareSurgeries,hospitalizations,etc. TransportationNeedsNecessaryadaptationtovehicles ArchitecturalRenovationsAlladaptationtothehomemadenecessarybythedisability LeisureorRecreationalEquipmentCampsforkids,organizationmemberships,orsubscriptionstomagazinesetc.

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69 CHAPTER3 METHODOLOGY ResearchGoals Thegoalofthisstudyistoexplorethepotentialuseoflifecareplanningduringthe adoptionprocessofchildrenwithspecialneeds.Whenconsideringresearchmethods, thenatureofexplorationhelpsdeterminethedesignofthestudy.Specifically,careful considerationisnecessarywhenemployingnewtechniques;thereforetheseresearch questionsareoftenansweredbetterwiththeuseofqualitativemethodsasopposedto quantitativetechniques(Patton,1990).Researchersemployqualitativeresearch techniquestodevelopconceptsandobtainabetterunderstandingofsocialphenomena inanaturalratherthanexperimentalsetting.Furthermore,qualitativemethodsplacean emphasisonthemeanings,experiences,andviewsofparticipants.(Pope&May, 2000).Thefinaladvantageofqualitativemethodsisthatitallowsfortheexploration anddiscoveryofthechosenphenomena(Patton,1990). LincolnandGuba(1985)identifiedthreefactorsfordeterminingthesuitabilityof theresearchquestionwhenchoosingqualitativemethods.Thesefactorsare:1)the focusofinquiry,2)thefitoftheinquiryparadigmtothefocus,and3)theabilityofthe paradigmtosubstantiatethetheoryguidingtheinquiry.AsdiscussedinChapter2, therehasbeenlittleresearchexaminingtheproblemsfacedbycasemanagersand potentialparentswhencompletingspecialneedsadoptionandnoresearchexploring theuseoflifecareplanstoimprovetheoutcomesfollowingspecialneedsadoptions. Giventheexploratorynatureofthisstudy,theinquiryfitsqualitativeresearchmethods. Theresearchermustalsoconsidertheparadigmthatbestfitsthetheoretical backgroundoftheresearchinquestion(Givens,2008).Aparadigmisasetof

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70 assumptionsandperceptualorientationssharedbymembersofaresearchcommunity thathelpsdeterminehowtoviewthephenomenaandthetypeofresearchmethodsto employ(Givens,2008;Patton,1990).Bothresearchquestionsinthestudyutilize qualitativetoolsbutfromtwodifferentparadigmsaccordingtothechosenmethods. Eachmethodandparadigmwillbediscussedbelow. ResearchQuestion1 Whataretheperceptionsofadoptiveparentsofchildrenwithspecialneeds regardingtheuseoflifecareplansduringtheadoptionprocess? Rationale Verylittleresearchisavailablethatexaminesparentsperspectiveoftheir experiencewhenadoptingandraisingachildwithspecialneeds(Adamec&Miller, 2007).Theprimarygoalofthecurrentstudyistoexplorethepotentialoflifecare planningintheadoptionsystem.Thepurposeofusinglifecareplansistoprovide parentswithadisability-relatedtooltoassistinunderstandingthechildsneeds. Parentshavefirsthandexperienceregardingthechallengesassociatedwithadopting childrenwithdisabilityandassuchwillprovideessentialinsightintothecurrentproblem andpotentialuselifecareplanning. Methods Thisresearchquestionisexploratoryinnature,duetothelackofresearch availableonparentsexperiencesadoptingandraisingchildrenwithspecialneeds. Therefore,theprincipalinvestigatorchosetoemployqualitativemethodsguidedby groundedtheory(Glaser&Strauss,1967).Thegroundedtheoryapproachis particularlyusefulwhenansweringresearchquestionswithanexploratoryfocusthat areaimedatunderstandingphenomenainvolvingpersonalexperiencesaboutwhich

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71 littleisknown(Glaser&Strauss,1967).Groundedtheoryresearchersseektodiscover andgroundthephenomenaintheorythatisbasedonreality,thereforebelievingthat theoryemergesfromthedatacollected(Corbin&Strauss,1990).Thisisparticularly usefulwhenresearchingaphenomenonthathaslittletonopriortheoreticalbackground tosupporttheresearchquestions(Given,2008). InquiryParadigm Theconstructivistparadigmofinquiryassumesthatindividualsconstruct knowledgefromtheirsocialinteractionsandexperiences.Peoplewhoascribetothis paradigmbelievethatresearchisaimedatunderstandingthephenomenaby constructingmeaningfromthesubjectiverealitiesofinformants(Denzin&Lincoln, 2000).Theconstructivistparadigmwillhelpcorroboratethegroundedtheoryemerging fromthedata,sincebotharegroundedintheassumptionthatunderstanding phenomenaisachievedthroughperceptionsofothers.Onemethodofconstructing groundedtheoryisthroughconstantcomparativeanalysis.Constantcomparative analysisinvolvesthedevelopmentofconceptualmodelbycomparingdatainorderto identifysimilaritiesordifferences(Givens,2008;Glaser&Strauss,1967).Thismethod willbediscussedfurtherinthedataanalysissectionslater. SamplingTechnique Thisinvestigatoremployedsemi-structuredqualitativeinterviewsinordertofully understandthecurrentproblemswithspecialneedsadoptions.Inaccordancewiththe constructivistparadigm,theresearcherchosetousecriterionbasedpurposeful samplingtechniques(Surridge,2007).Purposefulsamplinginvolvedthestrategic selectionofindividualswhowouldprovideinformationrichdataonthephenomenaof specialneeds(Patton,2002).Sincethereislittleknowledgeaboutthepotential

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72 applicabilityoflifecareplansintheadoptionprocess,purposefulsamplingprovidedthe beststrategytogatherthenecessaryexploratoryinformation(Patton,2002).The criterionusedtorecruitparticipantswasadoptionofachildclassifiedashavingspecial needsatthetimeofadoption,andadoptedthechildatleastfiveyearspriortothe interview. RecruitmentMethods Forthepurposeofthisstudytheresearcherdevelopedaflyerthatwasdistributed atmentalhealth,andsocialservicesagencieslocatedinaruralcommunityinNorth CentralFlorida.Theflyersolicitedparentswhohadadoptedachildwithspecialneeds andwereinterestedinparticipatinginaqualitativeinterview.Theinterestedparents wouldthencontacttheresearcherwhowouldscreenthemtodeterminetheireligibility forparticipationinthestudy. Participants Forqualitativestudiessamplesizeisdeterminedbyacoupleoffactorsincluding: thepurposeofthestudy,thegoalofresearcher,thedepthofdatasought,andfeasibility givenavailabletimeandresources(Patton,1990).Theprimarygoalofqualitative researchistogainanin-depthandhighlycontextualizedunderstandingofthe phenomenabeingstudied.Thereforequalitativestudies,likethisone,arewell-suitedto asmallsamplesize(Given,2008).Basedonsmallsamplesizes,qualitativestudies commonlydependupontheoreticalsaturationorredundancyofdatatodeterminethe appropriatesamplesize(Patton,1990).Saturationisachievedwhentheinterviewsno longergeneratenewinformation(Given,2008).Specificallyforthisstudy,theoretical saturationwasachievedatnineparticipants.

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73 Theresearcherrecruitedatotalofnineparticipantswhoadoptedchildrenwith specialneeds.Basedonthecriterionestablishedpriortorecruitmentallofthe participantshadadoptedachildclassifiedashavingspecialneedsatleastfiveyears priortotheinterview.Alsoconsideredinrecruitmenteffortswasthetypeofspecial needswithwhichparticipantschildrenwerediagnosed.Thisconsiderationyielded threeparticipantsineachofthefollowingcategoriesphysicaldisability,emotional disability,andcombinationofboth. Procedures Thisinvestigatordecidedthatusingsemi-structuredqualitativeinterviewswould bethebestmethodforfullyunderstandingthecurrentproblemswithspecialneeds adoptions.Byutilizingqualitativemethodstheresearcherwasableobtaindatathat providedadeeperunderstandingoftherationale,process,andcontextsofspecial needsadoptions(Lehouxetal.,2006).Semi-structuredinterviewsareacommon methodwhencollectingqualitativedataandareconsistentwithgroundedtheory.The useofqualitativeinterviewsallowedtheresearchertoobtaindataonthethoughtsand feelingsofparticipantsrelatedtoallaspectsofadoptingandcaringforchildrenwith specialneeds.Further,qualitativeinterviewsareapowerfultoolbecausetheyassist theresearcherinobtainingdiverseopinionsfromtheresearchparticipants(Given, 2008). Aninterviewguidewasdevelopedandusedtohelpfacilitatetheface-to-face interviewswiththeparticipants(AppendixB).Theinterviewguideconsistedofasetof tenopen-endedquestions,whichhelpssummarizethecontentwhichtheresearcher coversduringtheinterviews(Given,2008).Thequestionsincludedintheinterview guidewerecarefullywordedwiththepurposeofallowingeachrespondentthe

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74 opportunitytoanswerthesamequestionswithessentiallythesamewording.Usingan interviewguideensuredthatthesamebasiclinesofinquirywerepursedwitheach person,thereforeincreasingthecomparabilityofresponses(Patton,1990). Furthermore,thedevelopmentandimplementationofaninterviewguidehelpedassure thattheinterviewercarefullydeterminedthebestmethodofutilizingthelimitedtime availableduringaninterview(Patton,2002). Aftertheparticipantswerescreenedanddeterminedeligibleforparticipationinthe study,theresearcherscheduledatimewiththemtocompletetheface-tofaceinterview. Alloftheinterviewswereconductedinaquietandprivatelocationoftheparticipants choosing.Thisincludedlocationssuchastheresearchersoffice,theparticipants home,ortheofficeoftheparticipant.Priortoeachinterviewtheparticipantswere informedoftheirrightsasaresearchsubjectandrequiredtosignaninformedconsent form.Alloftheinterviewswereaudiorecordedforlatertranscriptionandanalysis.All oftheinterviewsstartedwithanintroductionofthelifecareplanningprocessandthe participantswereprovidedwithacopyofanactuallifecareplanforreference (AppendixC).Afterabriefintroductionoflifecareplans,theinterviewerfollowedthe interviewguideinordertothegatherthenecessaryinformation.Alldigitalaudio recordingsweretransferredontoastoragedeviceandtranscribedintoWord documentsforanalysis. DataAnalysis TheresearcherchosetouseMicrosoftWordsoftwareasamethodofmanaging andorganizingthelargeamountofinformationcollectedfromthenineinterviews. UtilizationofMicrosoftWordduringthedataanalysisprocessprovidedtheresearcher theopportunitytoidentifycommonalitiesamongstthedata.Thesecommonalitieswere

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75 labeledusingcodesandorganizedtoestablishacodingtree.Theprogramallowsfor theresearchertobrowsethemes,electronicallycodedata,developcodingframework, andcreatedisplaysofthetheoreticalframework.Theresearcherestablisheddateand timecodeswithintheprogramtotrackthechangestothecodingframework,thereby creatinganaudittrailforanyoneaccessingthedataelectronically. Accordingtogroundedtheory,datacollection,analysis,andtheoryformationisan ongoingandsimultaneousprocess(Glaser&Strauss,1967;Patton,1990;Glesne, 1999;Denzin&Lincoln,2000).Therefore,dataanalysisbeganwhentheinterviews weretranscribed.Transcriptionrequireslisteningtotheaudiorecordingandcreatinga wordforworddocumentthatencompassestheparticipantsresponsestotheinterview guide.ThisprocesswascompletedusingMicrosoftWordandresultedina comprehensivedocumentthatwasusedfordataanalysis.Theresearcherimmediately begantoanalyze/interpretthedatatoformacodingframework.Theimmediate analysisoftheinterviewisnecessarybecausetheinterpretiveinformationcollectedis thenusedtoguidethenextinterview.Thisprocessensuredthattheinvestigatorwould notmissanysalientinformationthroughouttheinterviews(Corbin&Strauss,1990). Constantcomparativemethodandcoding Inkeepingwiththegroundedtheoryandtheconstructivistparadigmthe researcherusedconstantcomparativemethodstoanalyzethedata.Thisapproach combinesspecificcodingprocedureswiththeorydevelopmentandencouragesthe comparisonofcodesacrossdatasources(Glaser&Strauss,1967).Thecomparative analysismethodprovidedtheresearchertheopportunitytorefinethecodingframework, ensurecodeswererepresentativeofthedata,andminimizeredundanciesincodes. Thecomparisonofcodeswithinandacrossnodesallowedtheresearchertocompare

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76 dataacrossstudyparticipantsandmodifycodingasnecessary,thereforeassuringthat thefinalcodingframeworkisrepresentativeoftheparticipantsexperiences.(Glaser& Strauss,1967) Anotheradvantageofusingconstantcomparativemethodsistheabilitytouncover theoryfromthedata.AccordingCorbinandGlaser(1990),thismethodcanleadtothe attainmentofcomplextheorythatwillcorrespondwiththedata,becauseconstant comparisonsforcetheanalysttoconsidermuchdiversityinthedata.Thediversityin datareferstothecomparisonofeachincidentwithotherincidentsintermsof similaritiesanddifferences.Makingsuchcomparisonshelpstheresearcherovercome biassinceconceptscanbecomparedamongstalltheparticipants(Corbin&Strauss, 1990). Theprocessofcodingbeganwithreadingthetranscriptsrepeatedlytoachieve immersionandobtainasenseofthewhole(Tesch,1990).Thenextstepwastoread eachlineofthetranscriptinordertoderivecodesbyhighlightingthewordsfromthe textthatappeartocaptureimportantexpressionsregardingthetopicofinterest.As themesorconceptsemergedtheywereaddedtothecodingframeworkandgivena descriptivelabel.Eachlineofthetranscriptwasanalyzedaccordingtothecoding frameworkandlabeledaccordingly.Thecodeswerethenaddedtothetheoretical frameworkasnecessary.Thisprocesscontinuedforeachinterviewuntilthefinal theoreticalframeworkwasachieved. Researchbias Aconcernregardingqualitativeresearchistheextenttowhichpredispositionsor biasesoftheevaluatormayaffectdataanalysisandinterpretations(Patton,2002). Regardlessoftheresearchmethodology,oftendatafromandabouthumansinevitably

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77 representsomedegreeofindividualperspectiveratherthantheabsolutetruth(Patton, 2002).Assuchitisimportantfortheresearchdesigntoaccountfortheseconcerns.In ordertoovercomeresearchbias,thisinvestigatorincludedmethodstomaintain reflexivityduringtheresearchandanalysisprocess.AccordingtoMalterud(2001), reflexivityisassuringthattheresearcherattendssystematicallytothecontextof knowledgeconstructionthroughouttheresearchprocess.Thiswasespecially importantwhenexaminingtheeffectsoftheresearcherandherbiasesduringevery stepoftheresearch.Furthermore,Malterud(2001)statesthatoncereflexivityis maintainedthatpersonalknowledgeandbiasesareavaluableresourcetoresearch process. Minimizingtheeffectsofresearcherbiaswasachievedthroughtheresearcher takingmanystepstomaintainawarenessofthecontextofknowledgeandconstruction ateverystageoftheresearchprocess.Thefirststepusedtominimizeresearcherbias wasthroughtakingapplicablecourseworkinqualitativemethodsfromprofessors experiencedinconductingthistypeofresearch.Throughthiscoursework,the researcherdevelopedanunderstandingofbasicqualitativeresearchmethods, theoreticalframeworks,howtodevelopdiscussionguides,andconductinterviews.The nextstepusedtomaintainreflexivitywasbeingtrainedontheutilizationofsoftwarefor analyzingqualitativedata.Thisstepwascrucialfornotonlyprovidinganunderstanding ofhowtousesoftwareprogram,butforfacilitatingtheunderstandingofcoding techniquescommonlyusedinqualitativeresearch.Furthermore,thetrainedqualitative researcherwasavailableforconsultationthroughouttheresearcherprocess.

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78 Anothermethodwhichassuredaccuracyofthecodingwastohaveother researchersreviewthecodesandobtaincongruenceamongthecodes.This investigatorfrequentlymetwithherchairpersoninordertoreviewtheanalysis.This stepallowedforcontinualvalidationoftheresearchfindings.Finally,thisresearcher maintainsawarenessthatherpersonalbiasandexperientialbackgroundmayinfluence thequalitativeprocess.Apersonalbiasstatementisdiscussedbelowandhelpsthe researchermaintainreflexivitythroughouttheprocess. ResearchQuestion2 Whatareadoptioncasemanagersperceptionsregardingtheuseoflifecareplans withspecialneedsadoptions? Rationale AsdiscussedinChapter2,previousresearchdemonstratesthattherearea numberofbarrierswhencompletingspecialneedsadoptions.Thesebarriersincluded lackofinformationregardingdisabilities,uncertaintyofthechildsfuture,andfearof caringforthechild.Onepossibletooltoaddresstheseissuesistheuseofalifecare plan.Thelifecareplanoutlinesthechildsneedsandthetypeoffundingsources availabletomeetsuchneeds.Todate,therehasbeenalackofresearchintothe potentialusesoflifecareplansinthefieldofadoptions. InquiryParadigm Thenaturalisticparadigmassumesthattherearemultipleinterpretationsofreality. Themultiplerealitiesarebasedondifferencesamongpeoplesperceptionsand experiences.Thepurposeofthenaturalisticparadigminqualitativeresearchisto discovermeaningandbeliefs,understandtheactionsofothers,aswellasgenerate theory(Lincoln&Guba,1985).Onemethodtoobtainanunderstandingofparticipants

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79 realitiesisthroughcontentanalysis(Heuseng&Shannon,2005).Conventionalcontent analysismethodwasusedinthisstudytoobtainaninterpretationofthedatacollected andisdiscussedinfurtherdetailindataanalysisportion. SamplingTechnique Onesamplingtechniquecommonlyutilizedunderthenaturalisticparadigmis purposefulsampling(Surridge,2007).Asstatedearlier,purposefulsamplinginvolves thestrategicselectionofindividualswhowillprovideinformationrichdataonthe phenomenaofinterest(Patton,2002).Therefore,purposefulsamplingiswellsuitedfor inquirieswherethefocusisonaphenomenainwhichlittleknowledgeisavailable. Sincethereislimitedknowledgeaboutthecasemanagersviewsoftheapplicabilityof lifecareplansintheadoptionprocess,purposefulsamplingtechniqueswereemployed. Specifically,thisstudyemployedcriterionbasedpurposefulsamplingwherethe participantsarerecruitedbasedonasetcriterion(Patton,2002).Thecriterion establishedpriortorecruitmentwas1)activelyworkasanadoptioncasemanager,and 2)personalexperienceplacingchildrenwithspecialneedsinadoptivehomes. RecruitmentMethods Similartorecruitmentmethodsfortheindividualinterviews,theresearcherchose toalsorecruitparticipantsusingaflyer.Forthepurposeofthefocusgroupsthe researcherdevelopedaflyerwhichwasdistributedtoseveralofpublicadoptions agencies.Theflyersolicitedcasemanagerswhohadworkedinthefieldforatleast threeyearsandhadpersonalexperienceinplacingachildwithspecialneeds.The interestedcasemanagerwouldthencontacttheresearcherwhowouldscreenthemto determinetheireligibilityforparticipationinthestudy.

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80 Participants Theresearchercompletedatotaloftwofocusgroupswithsixcasemanagers withineachgroup,foratotaloftwelveparticipants.Thedecisiontoconducttwofocus wasbasedonstandardizedmethodsoffocusgroupsandincludedthefollowingsteps. Whendecidinghowmanyfocusgroupstoconductinordertoadequatelyaddressthe researchquestion,theinvestigatorusedtheresearchgoalstohelpmakethedecision. Ingeneralresearchprojectsthatareexploratoryinnatureconductfocusgroupsuntil saturationisachieved.Aresearchstudyachievessaturationwhenthemoderatoris abletoanticipatewhatthenextgroupwillsay.Forthisstudysaturationoccurredwithin twofocusgroups(Morgan,1988).Exploratorystudies,suchasthisone,oftenrequire fewerfocusgroupsduetothebroadnatureoftheresearchquestions(Morgan,1988). Anothercharacteristicwhichdeterminedtherateinwhichsaturationwasachievedwas thehomogeneityoftheparticipantsineachgroup.Sincethetwogroupswere composedofadoptioncasemanagerswithsimilarworkbackgrounds,age,race,and experiencesaturationwasachievedwithfewerfocusesgroups.(Morgan,1988;Patton 2002;Morgan,1996) Whendeterminingsamplesize,factorstoconsiderinclude:thepurposeofthe study,thegoaloftheresearcher,whatdepthofdatawillbeuseful,andwhatisfeasible givenavailabletimeandresources(Patton,1990).Forqualitativestudies,thegoalisto useasamplesizethatwillleadtotheoreticalsaturationorredundancyofdata(Patton, 1990).Furthermore,Morgan(1992)notedthatasmallergroupsizewasmore appropriatewithemotionallychargedtopicssuchasthisone,andallowsforgreater participantinvolvement.Basedontheseguidelinestheinvestigatorchosetoincludesix peoplewithineachfocusgroup.

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81 Procedures Thisinvestigatorchosetoemployqualitativefocusgroupstofullyexplorethe implicationoflifecareplansintheadoptionprocess.Qualitativemethodsallowthe researchertoobtainadeeperunderstandingoftherationale,process,andcontextsofa chosenphenomenon(Lehouxetal.,2006).Commonmethodsincollectingqualitative dataareindividualinterviewsandparticipantobservations;howeverthisinvestigator chosequalitativefocusgroupsbecausetheycombineelementsofbothapproachesand allowaccesstointeractionandsocialdatathatisnoteasilyobtainedwithothermethods (Morgan,1988).Theorganizationofthefocusgroupsinvolvedgatheringparticipants withparticularcharacteristicsandcollectingdatathroughthegroupinteraction (Hollander,2004;Morgan,2002).Themainintentofusinggroupswastoencourage participantsinthesessiontointeractwitheachotherinordertoenhancethequalityof thedataobtained(Greenbaum,2000). Thestandardizedapproachofsemi-structuredfocusgroupsasdescribedby Greenbaum(2000)wasemployed.Focusgroupsincludedtheparticipants(described earlier),amoderator,andanobserver.Themoderatorwasresponsibleforfacilitating eachfocusgroup.Facilitationofthefocusgroupincludedintroducingthetopic, assistinginthecontinuationofdiscussion,andpromotingasafeenvironmentfor participantinteractionsandself-disclosure(Morgan,1988;Greenbaum,2000).Itwas importantforthemoderatortointerveneinthediscussionaslittleaspossible,duetothe impactthatthiswouldhaveonthegroupinteractions(Morgan,1996).Therefore,the moderatorofthegroupwasawareofthisdynamicandcarefullyconsideredeach interactionwithinthegroup.Themoderatortooksomenotesduringthefocusgroups, butforthemostpartlistenedtothediscussion.

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82 Theotherpersoninvolvedinthefocusgroupisanobserver.Theobserverwas presentduringeachfocusgroupandwasresponsiblefortakingfieldnotes.The observerrecordedinteractionsbetweenthegroupmembers,aswellasinteractions betweenthegroupandthemoderator.Thisprocesswasvaluablesincethemaingoal offocusgroupswastogatherinformationthroughgroupinteractions.Theobservations obtainedfromthemoderatoraswellastheobserverweretranscribedandincludedin thedataanalysis. AccordingtoGreenbaum(2000)developingadiscussionguideforthefocusgroup isanimportantpartoftheprocess.Thediscussionguidewillbeatooltohelpthe moderatorinitiatethegroupaswellasmaintainandencouragetheflowofthe discussion.Thediscussionguideconsistedofanintroduction,questionscarefully wordedandarranged,aswellasprobingquestionstoencouragefurtherexplorationof thetopicifnecessary(AppendixB).Theuseofthediscussionguideguaranteedthat eachfocusgrouprespondstothesamequestionsthroughthesamesequence, thereforeestablishingcontinuitybetweengroupsandincreasecomparabilityof responses. First,thediscussionguideprovidedascriptedintroductiontotheparticipantsand included:themoderatorintroducingherselfaswellasexplainingherrole,thepurpose ofthegroup,andadministrativedetailssuchasrulesandaudio/videotaping.Afterthe introductionsthemoderateencouragedparticipantstointroducethemselvestoeach other.Thenextsectionofthediscussionguideisthepresentationofthetopic(s)tobe discussed.Thediscussionguidethenhadpre-scriptedquestionsforthemoderatorin ordertoelicitinformationfromtheparticipants.

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83 Eachparticipantmetwiththeprincipalinvestigatorpriortothefocusgroup.During thismeetingtheparticipantswereprovidedwiththepurposeofthestudyand expectationsiftheychosetoparticipate.Theinvestigatorwasavailabletoanswerany questionsandassureIRB-approvedinformedconsentisobtainedfromeachperson. Theothergoalachievedduringthisinitialmeetingwastoobtaindemographic informationfromeachindividualparticipant.Thisdataallowedtheinvestigatorto describetheresearchpopulation. Thefocusgroupswereheldinalargeroomthatallowforbothverbaland nonverbalinteractionsamongstallparticipants.Eachsessionwasbothaudioandvideo recordedinordertocollectthenecessarydata.Adigitalaudiorecorderwasutilizedto tapethediscussionandtransferredtoastoragedrivefortranscription.Thediscussion groupswerealsovideorecordedinordertoassureaccuratetranscriptionofaudio recordsandtoincludeobservationaldataforanalysis.Eachvideotapewasviewedby twopeopleandtheobservationsoftheinteractionsrecorded.Thesenoteswere transcribedtoalsobeincludedintheanalysis. Thelast15to20minutesofeachfocusgroupwasdedicatedtodebriefing.The debriefingallowedthemoderatortosummarizesomeoftheinitialimpressionsofthe groupdiscussionandreceivefeedbackfromtheparticipant.Thistimeprovidedthe moderatoranopportunitytodeterminetheextenttowhichthereisagreementonthe initialfindings(Greenbaum,2000). DataAnalysis Theaudiorecordings,observationalnotes,andfieldnoteswerealltranscribedinto Worddocumentsandeachtranscriptionwascheckedforaccuracy.Thetranscripts werethenreadyfordataanalysisprocess.Wordwasalsousedbytheresearcherto

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84 assistintheorganizationanddevelopmentofcodingscheme.Inordertoanswerthe currentresearchquestionstheinvestigatorutilizedline-by-linecodingtoidentify prominentthemesandrelationships. ContentAnalysisandCoding Inkeepingwiththenaturalisticparadigm,thisresearcherchosetoanalyzethe datausingcontentanalysis(Morgan,1988;Hsieh&Shannon,2005)Contentanalysisis amethodologyofstudyingthecontentofcommunicationandcategorizingitsmeaning (Neuendorf,2001).AccordingtoOleHolsti(1969),anumberofdifferenttechniques havebeenclassifiedascontentanalysis,howeverforthisstudytheresearcherchoseto useconventionalcontentanalysisthroughtheframeworkapproach(Hsieh,&Shannon, 2005).Theconventionalapproachofcontentanalysiswaschosenduetothelimited empiricalliteratureandlackoftheoreticalframeworkonthephenomenon(Moen,etal., 2009).Inaccordancewiththelackofliterature,nopreconceivedcategorieswere utilizedwhencodingthedata.Thereforethecodingcategoriesandtheirlabelscame directlyfromtheparticipants(Moen,etal.,2009).Theprimaryadvantageof conventionalcontentanalysisistogaindirectinformationfromstudyparticipants withoutforcingthedatatofitintopreconceivedcategories(Moen,etal.,2009). Codingbeganwithreadingthetranscriptsrepeatedlytoachieveimmersionand obtainasenseofthewhole(Tesch,1990).Thenextstepwastoreadeachlineofthe transcriptinordertoderivecodesbyhighlightingthewordsfromthetextthatappearto captureimportantexpressionsregardingthetopicofinterest.Duringthisprocessthe investigatorrecordedherfirstimpressions,thoughts,andinitialanalysisofthechosen text.Astheprocesscontinuescodesthatwereconsistentacrossparticipantsstartedto emergeandbecametheinitialcodingscheme.Thecodeswerethensortedinto

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85 categorieswhichorganizethemintomeaningfulclusteraccordingtotheirrelationshipto eachother(Patton,2002).Finallytheresearcherdefinedeachcategory,subcategory, andcodesfromtheinformationgatheredduringtheanalysisprocess. PersonalBiasStatement FiveyearsagoIgraduatedfromtheUniversityofFloridawithaMastersDegreein RehabilitationCounseling.Myeducationaltrainingprovidesmewithacomprehensive understandingofdisabilities,thechallengesthatpeoplewithdisabilitiesface,aswellas thepsychosocialfactorsinfluencingparticipation.ItisthisunderstandingthatIheld ontowhenenteringthefieldofmentalhealthcounseling.Iworkasachildrens therapistinthelocalmentalhealthagency.Throughouttheyears,Ihaveworked directlywithchildrenwhohavebeenabused,neglected,andleftwithinthefostercare systemtoeitherbeadoptedorageoutofthesystem.Theseexperiencesallowedme togainapersonalunderstandingofthehardshipsthatchildrenwithemotionaland physicaldisabilitiesfacewhentryingtofindanadoptivehome.Furthermore,Ihave alsohadchildrenonmycaseloadwhohavespecialneedsandwereadopted.By workingwiththeseparentsIwasabletohearabouttheirchallengesandfrustrationwith theadoptionsystemandlackofservicesprovided.Myexperiencesinthefieldiswhat ledtomydesiretoresearchthispopulationinordertofigureoutwhatmightbedoneto helpencouragefamiliestoadopt,aswellassupportthosefamilieswhohavechosento adoptachildwithspecialneeds.Itrulybelievethatchildrenwithspecialneedsdeserve alovinghomeandthatwiththeappropriateservicesinplacethiswouldbepossible. Thecombinationofspecialneedsadoptionsandlifecareplanningoccurred throughmydoctoraltraining.Thetrainingprovidedmewithanunderstandingofthe processoflifecareplanningandthepotentialsitholdsforpeoplewithdisabilities.Iam

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86 goingtobeseekingcertificationinthefieldoflifecareplanningaswell.The combinationofmyexperiencewithchildrenandmytraininginlifecareplanningmay influencemyinterpretationofthequalitativedataexaminingpeoplesexperiences.

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87 CHAPTER4 PARTICIPANTCASESUMMARIES Overview Thegoalofthischapteristoprovideperspectivetothedataanalysisofthisstudy. Inordertodoso,adescriptionregardingsomeoftheparticipantsbackgroundsis includedbelow.Thesedescriptionswillprovidecontextforunderstandingthefindings fromthedata.Eachoftheparentswhowereinterviewedasapartofthisstudyhad theirownuniquesetofcircumstancesandexpectationswhenenteringtheadoption process.Thesecircumstancesandexpectationsshapedtheirexperiencesofadoptions andthereforeprovidecontextforthepresentationoftheoreticalframeworkanddatain Chapter5. ParticipantDemographics Nineinterviewswereconductedwithparentswhohaveadoptedchildrenwith specialneeds.SpecificdemographicinformationisdescribedinTable4-1.Eightofthe participantswerefemaleandonewasmalewithagesrangingfrom45to65.Allofthe participantswereCaucasianandlivedinasmallruralcommunitiesinNorthCentral Florida.Thenumberofyearssinceadoptionrangedfromfivetotwenty-eightyears, andthespecialneedsoftheadoptedchildincluded:physical(3participants), mental/emotional(3participants),andacombinationofboth(3participants).Priorto makingthedecisiontoadopt,sevenofthenineparentsinterviewedhadbiological childrenwhodidnothavedisabilities.Furthermore,sevenparticipantshadexperience eitherinthemedicalorsocialservicesfield,whileoneotherparticipanthadcontactwith herchildrenwhoworkedinthemedicalfield.Onlyoneparticipanthadnoexperienceor contactwithanyonewhohadpriorknowledgeofthesystemordisabilitiesthemselves.

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88 Alloftheparticipantswerewelleducatedwitheducationlevelsrangingfromsome collegeeducationtoobtainingamastersdegree.Finally,fiveofthenineparticipants werefosterfamiliespriortochoosingtoadoptthechild. Table4-1.Participantdemographics ParticipantGenderAgeSpecialNeedsYearsSinceAdoption P1F60Mental/emotional14years P2F58Combination26years P3F59Mental/emotional14years P4F45Physical5years P5F58Combination10years P6F65Physical28years P7M63Physical26years P8F50Combination9years P9F55Mental/emotional14years TheInterviewParticipants InterviewP1 Participant1is60yearoldfemalewhomImetwithtodiscussherexperiencesin adoptingandraisingchildrenwithspecialneeds.Sheresidesinsmallruralcommunity inNorth-CentralFloridawithherfamily,andhaspastworkexperienceasCertified NursingAssistant(CNA).Theparticipantdescribesherselfasagoodmotherwhois activelyinvolvedinallofherchildrenslives.Thisparticipanthasatotaloffivechildren, fourgirlsandoneboy,whorangeinagefromfortytothirteenyearsold.Thethree oldestchildren,twogirlsandoneboy,arebiologicalchildren,whilethetwoyoungest, twogirls,whereadoptedfourteenandnineyearsagorespectively. Theparticipanthadthreebiologicalchildrenwhichsheandherhusbandwere raising.Asthechildrengotoldershestillhadthedesiretocontinuecaringforyoung kids.Thereforeshesatdownwithherfamilyanddiscussedtheoptionsofbringing fosterchildrenintotheirlives.Forherbeingamotherwasextremelyimportantandshe

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89 knewthattherewerealargenumberofchildrenwhocoulduseherhelp.Herhearts desirewastohelpasmanychildrenaspossible.Thisdesireledherandherhusband totakethetrainingcoursetobecomeacertifiedspecialneedsfosterhome.Fostering childrenwasthefamiliesinitialexperiencewiththepublicsocialservicesystem. Thefamilyfosteredanumberofchildrenwithspecialneeds,eachdescribedasa specialgifttothefamilyinwhichshelearnedsomethingfrom.Thefamilywouldhave childreninthehomeforonedayuptoyears,withanumberofthemmovingtoother homesorbeingreturnedtotheirbiologicalparents.Thismotherfeltthatitwas essentialthatnomatterhowlongthefamilyhadthechildtheyshouldhelpthemfeel lovedandimportanttotheworld.Afterdoingthisforyears,thefamilywasgiventhe optiontoadoptoneofthechildrenwhowasintheircare.Thesocialserviceagency hadsearchedforviablefamilymemberstoadoptandcareforthechild;howeverwhen therewasnooneavailablethemotherwasapproachedwiththeoptionofadopting.For hertherewasnoquestiononadoptingthechild,becauseshewasalreadythechilds motherinhermind. Fifteenyearsagoa6-month-oldchildwasplacedwiththefamily,duetothe biologicalmothersdrugabuseandneglect.Thechildhadbeendiagnosedwithfailure tothriveandwasexposedtodrugsprenatally.Themothernotesthattheytookthe childinandstartingcaringforherinthesamewaytheywouldanyotherchildthatcame totheirhome.Ultimately,therewasnoviablehomeforthechildwithinherfamilyof originsoasthefosterfamily,theychosetoadopt.Thiswasthefirsttimeshehad consideredcrossingthelinebetweenafosterandadoptivefamily.Shehadlearnedin thetrainingcoursesthatyoucaneitherchoosetofosteroradoptchildren,butoftennot

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90 both.Thebondasamotherwasalreadythereforherandsheknewthatthechildwas apartofherfamilyandwouldbehappywiththem.Fourteenyearshavepassedsince thedecisiontoadoptthechild.Currentlythechildis15yearsoldandfreshmaninhigh school.Whileshedoeshavenumberofbothmedicalandpsychologicalchallengesshe isthrivingwithinherfamily. ThesecondchildwhomthefamilychosetoadoptwasanAfricanAmericanfemale whowasinitiallyplacedwiththefamilyasafosterchildat5daysold.Shewasborn addictedtodrugs;thereforewasremovedfromthebiologicalmotherscareatthetime ofbirth.Aswithanyotherchildshewasreadilyreceivedbythefamily.Sheremaineda fosterchildinthehomewhilesocialservicessearchedforsuitableplacement.Inthe endthebiologicalmotherwasunabletoprovideasafelivingenvironmentforthechild; thereforeherparentalrightswereterminated.Atthispointthechildhadbeeninthe homeforacoupleofyearsandtheparticipantwastheonlymotherthechildhadreally everknown.Sowhentheparticipantwaspresentedwiththeoptionofadoption,she eagerlyacceptedtheopportunity. Thisadoptiondidnotgoassmoothlyastheadoptionoftheirfirstchild.Whenthe childwasfreedforadoptionthefamilywasapproachedinregardstoadoptingthechild bythecasemanager.Againthemotherfeltthatthiswasnotaquestionandthatshe hadsincerelybeentheonlymotherthischildhadknown.Thefamilystartedthe adoptionprocessandgotexcitedaboutaddingtotheirfamily.Thatiswhenthe adoptioncasemanagerinformedthefamilythatwouldnotbeeligibleforconsideration whenadoptionplacementwasdetermined.Theadoptionagencyhadapolicy regardingmulticulturalfamilies.ThispolicypreventedCaucasianfamiliesfromadopting

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91 anAfricanAmericanchild.Inthisinstancethefamilyhadtogotocourtandconvince thejudgethattheywouldbepreparedtoprovidethechildwithanappropriatecultural background.Thisstepwasnecessarybeforetheparticipantsfamilywouldbe consideredaviableplacementforthechild.Inordertoconvincethejudge,theentire familywrotelettersregardingtheimportanceofthechildtothefamily.Furthermore,the participantandherhusbandhadtogobeforethejudgetoanswermoreindepthand specificquestionsregardingtheirplansofhowtoraisethechild.Thisprocesswas describedbythemotherasveryemotionalandtryingbecausetheywereafraidoflosing theirdaughter.Intheendthejudgeapprovedtheadoptionandattheageoffourshe legallybecameapartofthefamily.Thechildiscurrently13yearsoldandenjoys playingsports,beingactive,andhangingoutwithherfriends.Theplacementis successfulandthedifferenceinracebetweentheparticipantandherdaughterhas neverproventobeabarrier.Sheisintheseventhgradeandreceivesthefullsupport offamilyinallherendeavors. InterviewP2 Participantnumbertwo(P2),isa58-year-oldfemalewholivesinNorthCentral Florida.Shecurrentlyisastayathomemotherforherstep-son,howeverpreviously heldvariousservicerelatedjobs.Whilemarriedtoherprevioushusband,theyadopted twochildrenfromthepublicadoptionfacility.Shehadnopriorexperiencetoillness, disabilities,oremotionalissuespriortochoosingtoadopt.Theyadoptedthefirstchild, atwoyearoldgirl,26yearsago.Threeyearslater,theparticipantandherhusband chosetoadopta3-year-oldmale. Participantnumbertwosadoptionstoryissomewhatdifferent.Forherthe experiencebeganwhenshemetwhatwouldbefuturehusband.Theydiscussed

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92 havingchildrenpriortogettingmarriedandbothknewthatitwassomethingthatthey hadastrongdesirefor,howevertherewerefertilityissues.Thiswasbackintheearly eightieswheretheprimarychoicetoovercomeinfertilitywasadoption.Soacouple yearsintotheirmarriage,theydecideditwastimetostarttheirfamily.Theywere unsureoftheexactprocess,howeverchosetocontactalocaladoptionagencyand inquireregardingtheprocesstoadoptachild.Thissetintomotiontheadoptionoftheir firstchild.Thecoupleinitiallyhadtostartwiththeapplicationforadoptionandcomplete thehomestudyaswellasbackgroundschecks.Afterthesestepswerefinishedthey metwiththeadoptioncaseworkertodiscusstheirdesiresinachild.Eventuallythey receivedthephonecallthatachildhadbeenmatchedwiththem.Thechildwasatwo yeargirlwhobeenfosterherentirelife.Atthetimeofplacementalltheyknewwasthat thechildwasborntoanIVdruguserandtestedpositivecocaineatthetimeofherbirth. Shehadbeenabandonedatthehospitalsotherewaslittleinformationonthemotheror familyoforigin.Whileinfostercareshehadmovedthroughnumeroushomesandit wasreportedthatshewassomebehavioralissuesandhyperactivity.Fromthestartthe childshowedsignsofattentiondeficithyperactivitydisorderandwasultimately diagnosedandtreatedforit.Theotherthingthefamilynoticedwashowthechild appearedtogetsickmorefrequentlythanmostchildren.Thefamilydealtwithmultiple illness,tripstothedoctor,andstaysinthehospital.Thechildwas15yearsoldandshe spentacouplemonthssickwithoneillnessaftertheother,andendedupinthe hospital.Theparticipantdemandedthattherewassomethingmoregoingonandatthis timethechildwastestedforHIV/AIDS.TothefamilyssurprisetheHIVtestwas positive.ThechildwasexposedtoHIVbyherbiologicalmotherwhowasanIVdrug

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93 user.Whilethefamilyhadtheanswerstoallofthechildsillnessestheywerethen facedwithawholenewchallenge.ThechildstartedtreatmentforHIVandsheisnow 28yearsoldandhasafamilyofherown. Threeyearsafteradoptingtheirfirstchild,theparticipantandherhusbanddecided toexpandtheirfamily.Theyagaincontactedthelocaladoptionagencyandstartedthe processtobematchedwithanotherchild.Thistimetheywerecontactedwithathree yearoldmalechildwhowasrelinquishedtotheadoptionagencybyhisbiological parents.Atthetimeofplacementitwascleartothefamilythatthechildhadbeen neglectedandhadsomeemotionalissues.Forthefirstweekhewaswithdrawnanddid notsmile,buteventuallyacclimatedtothefamily.Theirsoncontinuedtohave behavioralissueswhichescalatedashestartedschool.Theparticipantshusbanddid notwanttoacceptthathissonhademotionalissuesandrefusedtorecognizetheneed forservices.Asthebehavioralissuesescalatedsodidthetensionbetweenherand husband.Theirsonwaseightyearswhenthetension,stress,anduncertainty regardingthechildshealthoverwhelmedthemandtheydivorced.Atthispointthe participantattemptedtolocateservicesforherchild,howeverwasunsureofwhereor whattypesofhelpheneeded.Thefamilystruggledwiththechildsmentalillnessashe aged.HewasdiagnosedwithBipolarDisorderandReactiveAttachmentDisorder, whichhewashospitalizedonmultipleoccasionsfor.Whiletherehavebeenchallenges theparticipantdescribedhersonasoverallajoytohaveandthatshewouldnotchange anything. InterviewP3 Participantthreesadoptionexperiencewasextremelyunique.Sheiscurrently59 yearsoldandresidesinNorth-CentralFlorida.Shehasworkedwithinthechildwelfare

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94 systemforthepast25years,andreportsenjoyingherwork.Shehasatotaloftwo children,onebiological(boys),aswellasoneadoptedmalechild.Herbiologicalchild is35yearsoldandhasafamilyofhisown,whiletheadoptedchildiscurrently16years old. Forthisparticipantadoption,fostercare,andfindingplacementforchildrenwas somethingthatshewasextremelyfamiliarwith.Shewasasinglemotherraisingher biologicalsonwhenshedecidedtobecomeafosterhomeforthesomeofthechildren thatshecameintocontactwith.Atthetimeshejustwantedtofosterchildreninorder toberesourceforthedepartment.Asafostermothersheprimarilyreceivedadolescent childrenthatwouldbeinthehomeforashortperiodtime,inordertogivethecase workertheabilitytolocateamorepermanentplacement.Themotherenjoyedbeinga fosterparentwithnointentionsofadoption;howevereverythingchangedtheweekenda twoyearchildwasplacedinhercare. Asanemployeewiththesocialserviceagency,shewaswellawareofthechildren whowereinthestatescustody.Therewasonechildinparticularthathadbeen extremelydifficulttoplaceinafosterhome.Shenotesthatatthetimehewastwo yearsandwouldnotspendmorethananightinafosterhome.Thechildwouldspend thedayswiththecaseworkeratthelocaloffice,whowoulddiligentlyworktofinda placementfortheeveningsothechildwouldhaveaplacetosleep.Thisprocess occurredforacoupleweeks,untilMemorialDayweekendcamearound.Atthattime thecaseworkerforthechild,afriendoftheparticipants,contactedhertoseeifshe wouldbewillingtotakethechildforthelongweekend.Themotherwasinitiallyunsure ofcaringforthischild,sheknewhisbackgroundandthebehavioralissuesinwhichhad

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95 beendisplaying,plusshehadonlytakeninteenagersuptothispoint.Intheendshe decidedtotakethechildforwhatinitiallywasjustgoingtobetheweekend. Atthetimeofplacementthechildwastwoyearsold.Hewasremovedfromhis biologicalparentsduetoneglect,physicalabuse,aswellastheparentssubstance abuseissues.Hewasoneofasiblinggroupthatwasremovedandplacedintofoster care,howeverduetoallofthechildrensbehavioralissuestheywereplacedinseparate homes.Thechildwasclassifiedasasexualpredatoratthetimeduetosexuallyacting outinsomeofthehomeshehadbeenin.Theparticipantnotesthathehadmajor tempertantrums,moodswings,andangeroutbursts. Thechildcametoherwithnothingbuttheclothesonhisbackaswellasabroken paleandshovelfortoys.Sheknewfromthestartthatthischildliterallyhadnothing.At theendoftheweekendshechosetocontinuefosteringthechildwhilethecaseworker continuedtoreunificationprocesswiththefamilyoforigin.Soforthenexttwoyearsthe childmaintainedscheduledcontactwiththeparentsuntilreunificationwasdeemedan unviableoption.Atthistimethechildsbiologicalparentsrightswereterminatedand hewasavailableforadoption.Theparticipantfeltthateventhoughshehadbeen caringforthechildfortwoyearsshewasunsureifadoptingthechildwasthebestthing. Forheritwaswhenthechildcalledhermomthatsherealizedthatshewastheonly thingthathehadandthathereallyneededher.Beingcalledmotherwasapowerful andimportantthingforher. Thechildwasfiveyearsoldwhenheandtheparticipantwentinfrontofthejudge tofinalizetheadoption.Currentlythechildis16yearsoldhasmadeprogresssincefirst beingplacedwiththeparticipant.Hehasbeendiagnosedwithbipolardisorder,

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96 attachmentdisorder,aswellattentiondeficithyperactivitydisorder.Theparticipantis diligentinmonitoringhismedicationaswellasattendingdoctorsandtherapy appointmentwhicharehelpinghimlearntomanagethesymptoms. InterviewP4 Participant4isaforty-fiveyearoldfemalewhoismarriedandcurrentlyresidesin North-CentralFlorida.Sheisactuallytheyoungestparticipantinthestudyandhashad thechildforthefewestnumberofyears;howeverthishasnotimpactedsomeofthe experiencesthatshehashadwithhim.Sheisthemotheroffourchildrenandalso currentlyhastwootherfosterchildreninthehomewithheraswell.Threeofthe childrenareherbiologicalkidsandtheyrangeinagefromeighteentothirteenyears old.Atthistimeallthreechildrenresideinthehomewithherandherhusband.Then thereistheyoungestchildwhichisheradoptedson.Thischildiscurrentlyeightyears oldandwasadoptedfiveyearsagowhenhewasthree.Thefamilymaintainstheir licenseasamedicallycertifiedfosterhome,andcontinuestotakechildrenin.Currently thereisasiblinggroupoftwochildreninthehomewiththefamily.Theparticipants notedthatthereisthepossibilityofthesetwokidscomingupforadoptionandthefamily isconsideringadoptingthemaswell. Thisparticipantcurrentlyworksasanoccupationaltherapistinlocalrehabilitation facility.Shehaspracticedinthefieldfortwentyyearsandnotesthatshehasalotof experienceindisabilityandillness.Forthisparticipantmanagingdisabilityrelated needsandunderstandingtheirimpactonapersonispartofherdailylife.Therefore, whenpresentedwiththeoptionofcaringforchildrenwithmedicalneedsitwasnoteven aquestiontoher.Theparticipantnotedthatherprofessionalknowledgehashelped whileraisingherchild.Moreover,shenotedthatherhusbandisapreacherandhasthe

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97 samedesiresasshedoesincaringforchildrenwhoothersdeemastodifficult.This desireiswhatdrovethemtobecomingfosterparentsandultimatelyadoptiveparents. Thefamiliesexperienceingettingtoknowtheboytheychosetoadoptwasalittle bitdifferentthantheotherparticipants.Forthisfamilyitallstartedonceheryoungest childgotalittleolder.Shenotedthatherandherhusbandbothcamefromlarge familiesandknewevenbeforegettingmarriedthattheywantedtoraisealargefamily. Soastheiryoungestchildgotalittleolderthefamilystartedtoventureintotheideaof adoption.Shenotesthatinitiallytheywereinformedthattheprocessofadoptionwould takeanextendedperiodoftimeandthattherewerenochildrenatthattimereadytobe placedwiththem.Atthisnewsthefamilydecidedthatthebestwaytoassistsomeof thesechildrenwastobecomeacertifiedfosterfamily.Therefore,theparticipantand herhusbandwentthroughallofthetrainingcoursesandpaperworktobeestablished asamedicallycertifiedfosterhome. Afterbecomingacertifiedfosterhome,theystartedtakinginchildrenwhohada varietyofmedicalissues.Formostofthesechildrentheywerewiththefamilyfora shortperiodoftimebeforebeingmovedtoanotherfosterhomeorreunifiedwiththeir parents.Asamedicalfosterhomethefamilywouldalsoserveasarespitelocationfor fosterfamilieswhoneededabreak.Itwasarespitelocationthatthefamilyfirstmetthe childthatwouldlaterbecometheiradoptiveson. Onedaythefamilywascontactedtoserveasashorttermrespitelocationfora threeyearoldboywhohadmultiplemedicalissues.Thefamilyagreedtotakethechild fortherespiteperiodandafteracoupleofdayshewasreturnedtotheoriginalfoster family.Theparticipantnotedthattheyservedasarespitelocationforthechildoverthe

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98 nextfewmonths.Thatiswhentheoriginalfosterfamilydecidedthattheycouldno longercareforthechildsneeds.Sotheparticipantandherfamilychosetotakethe childinandultimatelyadopthim.Throughadoptionthefamilyisabletocontinue addingtotheirfamilyandservechildrenwhoneedtheirhelp. InterviewP5 Theresearchermetwithparticipantfivetoexploresomeofherexperienceswhen choosingandadoptingachildwhohasspecialneeds.Thisparticipantisa58-year-old femalewhoalsoresidesinaruralcommunityinNorthCentralFloridawithherfamily. Sheiscurrentlymarriedandisastayathomemother.Herhusbandispreacherand hasachurchwhichheruns.Forher,likemanyoftheotherparticipants,shehadthree biologicalchildrenbeforeenteringintoadoption.Herbiologicalchildrenwereallgrown andoutofthehousewhensheadoptedherfirstchildtenyearsago. Thisfamilycametogetherunderdifferenttypesofcircumstancethantheother participants.Forherandherhusbandtheydecidedtoadoptaftertheirchildrenwere outofthehome.Shenotesthatthedesiretoadoptwasdrivenbytheirpassiontohelp kidsandtocontinuebuildingtheirfamily.Thefirstchildwhomthefamilyadopted10 yearsagowasamalechildwhohadbeenplacedinfostercareduetoneglectbyhis biologicalparents.Thischilddidnothaveanymajormedicaloremotionalissuesatthe timeofadoption.Forthisfamilyitwasnevertheirintenttospecificallyseekoutachild whohadspecialneeds.However,twoyearslatertheywerepresentedwiththatspecific dilemma. Themothertalkedabouthowacoupleofyearsafteradoptingtheirfirstson,they wereapproachedbyanadoptioncaseworkerwhowassearchingtoplacea5-year-old child.Itbecameevidentthatthecasemanagerspresentedthischildtothembecause

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99 hewasthebiologicalsiblingoftheirfirstadoptedson.However,thesituationwiththis childwasalittledifferentbecausehehadbeendiagnosedwithAutismaswellasother medicalissues.Thefamilyneversoughtoutadoptingachildwhohadspecialneeds, butuponreflectionregardingthesituationdidnothesitatetostarttheadoptionprocess forthischildaswell. Neitherparenthadanyexperienceinraisingachildwithspecialneeds;however theparticipantdescribedherandherhusbandasnotbeingdauntedbythetaskahead ofthem.ThemotherdescribedhowhercousinhadadoptedachildwithAutismpriorto themgettingtheirson.Shenotesthatthishasbeenahugehelpinunderstanding wheretogethelpforthechildaswellassupportservicesthatareavailabletothe family.Furthermore,shenotesthatoneofherbiologicaldaughtersisanoccupational therapistandthatshehasason-in-lawwhoisanaudiologist.Thecontactwithfamily memberswhohadmedicalexperiencewasdescribedasguidingpostfortheparticipant andhelpedherandherhusbandmanageissuesastheyarose. Theoldestadoptedsonisnowcurrently16yearsoldandbythemothersreportis doingwellinschoolandadjustingsocial.Theyoungeradoptedsonis13yearsoldand stillpresentswithmajorsocialandemotionalissuesinrelationshiptotheautism. Regardlessofthedailychallengesandcontinualtreatmentthatthechildreceives,she isgratefultohavehimasapartoftheirfamily. InterviewP6 Thisparticipantisa65-year-oldfemalewhoresideswithherfamilyinarural communityinNorthCentralFlorida.Sheiscurrentlyemployedasanurseandhas beenforthepast30years.Theparticipantandherhusbandhaveraisedthreeadoptive children,whichtheyadopted28,26,and24yearsagorespectively.Thisparticipant

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100 wastheonlyonewhoadoptedherchildrenfromaprivateadoptionfacility;therefore shewasprovidedtheopportunitytoadoptyoungerchildren.Allthreechildrenwhere undersixmonthsoldatthetimeofplacement,andonlyoneofthethreechildrenwas classifiedashavingspecialneedsatthattime. Forthisparticipantherprimaryreasonforchoosingtoadoptwassimilartothe secondparticipant,whichwasduetoissuesofinfertility.Startingafamilywas extremelyimportanttotheparticipant,soafterbeingmarriedtoherhusbandfora coupleofyearstheydecidedtostarttheadoptionprocess.Shewasamemberofthe LutheranChurch,soshechosetouseaprivateLutheranbasedadoptionfacility. Tostarttheprocesssheandherhusbandcontactedtheadoptionfacilityand inquiredonthestepsnecessaryforadoption.Theymetwithacounselortodiscuss theirdesiresregardingthetypeofchildtheywereinterestedinadopting.Afterwaiting foracoupleofmonthstheadoptionagencycontacttheparticipanttoinformthemthat theyhada3-month-oldmalechildavailableforadoption.Theparticipantandher husbandwereexcitedtoreceivethechildandcompletethelegalstepsinorderto finalizetheadoption.Thischilddidnothaveanyspecialneedsandwasperfectly healthyatthetimeofplacement.Thiswasnotthecaseforthesecondchildwithwhich thefamilywaspresented. Themothernotesthattwoyearsafteradoptingtheirfirstsontheywereonceagain readytoaddtotheirfamily.AgaintheyapproachedtheLutheranbasedadoption facility,andrequestedtoadoptanotherchild.Thecircumstancesofthisadoptionwhere alotdifferentthanwiththefirstchildtheparticipantchosetoadopt.Theparticipant notesthatshewascontactedbytheagencywhoinformedherthatababyboywas

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101 availableforadoption.Shenotesthattheadoptioncounselorspecificallychoseherand herhusbandforthischild,becauseitwasapparentthechildwasgoingtofacea numberofmedicalissuesthroughouthislife.Theparticipantnotestheywereidentified asagoodfitbecauseshewaspracticingnurseandhadbeenforyears.Alltheyknew atthetimewastheboywasbornprematurelywithmultiplebirthdefects.Themostlife threatening,whichrequiredimmediatesurgery,washisbowelsformedoutsideofthe body.Soshortlyafterbirththechildwasrushedintoemergencysurgerytostartthe processofreinsertinghisbowls.Theparticipantconsultedwithherhusbandonwhat theywantedtodo.Ultimately,theydecidedtoadoptthechild. Thethirdchildthefamilyadoptedwassimilartotheprocesswiththeirfirst adoption.Shedidnothaveanymedicalorpsychologicalneeds,butherarrival completedthefamilyandlefttheparticipantfeelinghappyandsatisfiedwithher choices.Currentlytheoldestadoptivesonandtheirdaughterareoutofhouseand leadingverysuccessfullives.Forthesecondchildadopted,hedidfaceanumberof medicalcomplicationsandproceduresoverhischildhood.Heiscurrently26yearsold andlivesathomewithhisparents.Allofthefamilymembersaresatisfiedwith outcomesoftheirchoices. InterviewP7 Theseventhparticipantwasuniqueinthefactthathewastheonlymalewhowas interviewedforthestudy.Heis63yearsoldandcurrentlyresidesinsmallrural communityinNorthCentralFlorida.Heisretired,however,hespent30yearsworking asanengineer.Theparticipantismarriedandtogetherheandhiswifeadoptedtwo children.Healsohastwobiologicalchildrenfromapreviousmarriagewhichhealso raised.

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102 Theconversationofadoptionstartedafterhissecondwifewasunabletoget pregnantandtheybothknewtheywantedafamilytogether.Eventhoughthe participanthadtwobiologicalchildrenfromapreviousmarriage,heknewthatstartinga familywithhissecondwifewasimportant.Furthermore,theparticipantnotesthat basedontheirreligiousbeliefschildrenwereaspecialgiftfromGod.Thisdesireled thecoupletoseekoutanadoptionagencythatwouldassisttheminadoptingachild. Therefore,26yearsagotheparticipantandhiswifewerematchedwiththeirfirstchild. Henotesthattheyinformedthecasemanagerthattheywantedalittlegirl;howeverat timeofplacementreceivedaboy.Theparticipantreportsbeingoverjoyedbythegiftof achildandstatesthatifthechildhadbeentheirbiologicalbabytheywouldnothave beenabletochoosethesex.Priortochoosingtoacceptplacementofthechild,the familywasinformedthatthechildhadspecialneedsandwasbornprematurely.The littleboywasfightingforlifeatthetimeandhadmultiplemedicalissuesalongwitha diagnosisofcerebralpalsy.Theparticipanttalkedabouthowheandhiswifewere giventhechoicetoacceptthischildornot.Forthemitwasnotachoice,Godwas givingthemthischildtocareforanditwassomethingthatheandhiswifewerewilling toaccept.Furthermore,thefatheralsotalkedabouthowtheywouldnothavebeen guaranteedahealthychildevenifhehadbeentheirbiologicalson.Fortheparticipant andhiswife,choosingtoadoptthischildwasjustnaturalforthem. Thechildwasthreemonthsoldatthetimehewasplacedwiththefamily,andthe adoptionwasfinalizedacoupleofmonthslater.Thelittleboyrequiredmultiple surgeries,medicalprocedures,andhospitalizationsthroughouthislifetotreatvarious medicalissuesinrelationshiptoprematurity,drugexposure,andcerebralpalsy.Asthe

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103 childstartedschoolhewasalsodiagnosedashavingmildmentalretardationandwas placedinaself-containedschool.Thechildiscurrently26yearsoldandmaintainsa levelofindependencewhilelivingwithhisparents.Theparticipantstatesthatadopting himwasoneofthebestdecisionsthathehasevermade. Whiletheparticipantdidnothaveanymedicalexperiencehedescribedbeing gratefulthathiswifedid.Sheisanurseandhasworkedinthefieldformanyyears. Theparticipantnotesthatshewasahugeassetinmanagingthecareoftheirchildand especiallythemedicalprocedures.Hefeelsthatwithoutherhedoesnotknowhowhe wouldhavehandledraisingachildlikehisson. InterviewP8 Theresearchersatdownwithparticipantnumbereighttogatherinsightonher experiencesinadoptingandraisingachildwithspecialneeds.P8isa50-year-old female,whoalsolivesintheNorthCentralFlorida.ShehaspastexperienceasaCNA andworkedinalocalnursinghome.Sheliveswithherhusbandandtwoadopted children;howevershealsohastwogrownbiologicalchildren. Theyadoptedthefirstchild,a2-year-oldfemale,nineyearsagoaftershewas removedfromherbiologicalparentsduedruguseandneglect.Atthetimeofthe adoptionthechildhademotionalissuesrelatedtotheprenatalexposuretodrugs.A coupleofyearslaterthefamilywasapproachedbythesocialserviceagencywith anotherchild,a16-month-oldmale,bythesamemother.Onceagainthechildwas bornwithprenatalexposuretodrugsaswellasneglectandphysicalabuse.Their adoptedsonhasbeendiagnosedwithAttentionDeficitHyperactivitydisorder, Aspergersdisorder,asawellasacoupleofothermedicalissueswhichhaverequired multiplesurgeriesandmedicalprocedures.Forthisparticipant,herprofessional

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104 experiencehashelpedherprepareforraisingtwochildrenwithmedicalandemotional diagnosis. Thedecisiontoadoptwasalittledifferentforthisfamily.Firstofallthetwokids theyadoptedwerethebiologicalchildrenofadistancecousinwhohaswasaddictedto drugsandunabletocareforthem.Theparticipantwasapproachedbytheadoption caseworkertoconsideradoptionratherthansheandherhusbandtakingthefirststep. Whiletheymaynothavepreviouslyconsideredadoption,theywereopenregardingthe optionsofaddingtotheirfamily.Actuallyaddingkidstotheirfamilywassomethingthat wasimportanttobothofthem.Theparticipantreportsthattheopportunitytotakethe firstchildincameataverycriticalpartofherandherhusbandslife.Thiswas importantbecauseshehadlostachildatbirthacouplemonthspriortotheadoption agencycontactingher.Fortheparticipantshefeltthatitwasimportantforthemtotake thechildinregardlessofwhatissuestheymayfaceinthefuture. Currentlythefemalechildiselevenyearsoldandattendselementaryschool.She hassincebeendiagnosedwithbothADHDaswellasuspectedbipolardisorder.The familyhastomaintainaclosewatchonthechildandmonitorthemedicationsand therapieswhichshereceives.Thefamiliesadoptivesonissevenyearsoldand presentswithanumberofsocial,emotional,andmedicalissues.Aswithhissisterhe receivesanumberofmedicationsandtherapiesinordertotreatthesymptomspresent. Theparticipantiscurrentlyastay-at-homemotherinordertohelporganize,manage, andattendalloftheappointmentsthatherkidshave.Regardlessoftheamountof additionalstressinmanagingthekidsspecialneeds,shestilldescribesthemasajoy tohaveandenjoyswatchingthemgrow.

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105 InterviewP9 ThelastparticipantwasalsofemaleandcurrentlyresidesinruralNorthCentral Florida.Sheandherhusbandchosetoadoptachild14yearsago.Thechildwas sevenyearsoldatthetimeofadoption.Shehadspentthreeyearsinfostercareas resultofabuseandneglectbyherbiologicalfather.Thechildwitnessedherfather shoothermotherandasaresulthasbeendiagnosedwithpost-traumaticstress disorderanddepression.Atthetimeofplacementitwasreportedthatthechildwas experiencingnightmares,anxiety,anddifficultiesadjustingtoadoption.Theparticipant describesacoupleofreallydifficultyearswiththechild.Shenotesthatittookalarge amountofefforttolocatethenecessarytreatmentsandservicesthechildneeded. However,withtherapyandmedicationsthechildwaseventuallyabletoadjusttobeing apartoftheirfamily. Theparticipantnotesthatsheandherhusbandwereraisingonebiologicalson whenthethoughtofadoptionwasbroughtup.Forthemitseemedlikealogicalmethod ofaddingtothefamily,whichtheywantedtodo.Furthermore,theydescribedwanting tohelpkidswhootherwisewouldnotreceivehelpfromothers.Thefamilyfirstbecame afosterhomeforchildreninthestatescustody.Theparticipantnotesthatthis providedthemwiththeopportunitytocareforandshowlovetoalargernumberof children.Beingafosterfamilyishowtheyfirstmettheiradoptivedaughter,andwhen sheenteredthehometheyknewshehadbeenthroughanumberofdifferent placements.Thechildpresentedwithbehavioralissuesthatmadeitdifficultforother fosterfamiliestomaintainthechildsneeds,whichisultimatelyhowsheendedupbeing placedwiththeparticipantsfamily.Intheendthechildsbiologicalfathersrightswere terminatedandshebecameavailableforadoption.Thedecisiontopursueadoption

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106 cameaftertheparticipantandherhusbanddiscussedtheoptionbetweenthemselves aswellaswiththeirtwokids.Soattheageofnine,twoyearsafterplacement,the adoptionwasfinalized. Currentlytheparticipantsadoptivedaughteris23yearsoldandislivesonher own.Withmedicationandregulartreatmentsheisabletomanagehersymptomsand leadafullyproductivelife.Sheisabouttogetmarriedandistalkingaboutstartinga familyofherown.Theparticipantdescribedfeelingjoyandprideinherdaughterand notesthatallofthechallengesfacedwhileshewasgrowingupwerewellworththe payoffintheend. ComparisonofParticipants Similarities Asstatedearlier,eightofthenineparticipantshadsomeknowledgeregarding peoplewithdisabilitiespriortochoosingadoption.Thefirstparticipanthadprior experienceasaCertifiedNursingAssistant(CNA).Sheworkedatanursinghomefor tenyearspriortobecomingaspecialneedsfosterhome.Whileshecaredforthe elderlyduringherprofessionalexperience,theparticipantfeltthattheknowledgegained assistedherinfeelingpreparedforwhattoexpectasamedicallycertifiedfosterhome andultimatelyadoptingtwochildrenwithspecialneeds. Thethirdparticipantwastheonlyparentwhohadprofessionalexperiencewithin thesocialserviceagency.Thisparentworkedwithinagencywhichwasresponsiblefor findingplacementforchildrenwhoweretakenintothestatescustody.Shehad personalknowledgeoftheadoptionprocess,aswellasthecommonissueschildren whoareadoptedface.Thisuniqueexperienceiswhatinitiatedherdesiretobecomea fosterparent,howeverontheotherhandthisexperienceisalsowhatledtoherbeing

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107 apprehensiveinadoptingthechild.Ultimatelyherprofessionalexperiencehasprovided herwithperspectiveandassistanceonraisingthechild. P4worksasanoccupationaltherapistandhasforthepastfifteenyears.Forher disabilityandillnessisapartofherdailylife,soadoptingachildwithadisabilityjust seemednaturaltoher.Aswiththeotherparticipantsshefeltthatherprofessional experiencehasprovenvaluableregardingmanagementofherchildsmedicalcare. Shenotesthatherprofessionalknowledgehasaidedherinlocatingservices, understandinginsurancelimitationsandissues,aswellasmaintaininganawarenessof themagnitudeofcarethechildwouldrequire.Theparticipantfeelsthatsheentered intotheadoptionofherchildwithauniqueawarenessofwhatcaringforthischildwould meanforherandherfamily. Participantnumberfiveisastayathomemotherwhochosetoadopttwochildren bothwithspecialneeds.Theparticipantdidnothaveanydirectexperiencewith disability;howevershegaineddisabilityknowledgeindirectly.Forthisparticipanther daughterisanoccupationaltherapistandherson-in-lawisanaudiologist.Shefeltthat havingresourcesandsupportfrompeoplewithmedicalexperienceassistsherin raisingthetwochildrenshehasadopted.Herdaughterhasguidedherthroughthe Medicaidprocessandisabletoassistherinunderstandingsomeoftheservicesas wellaslimitationsregardinginsurance.Furthermore,herindirectknowledgehelpsher knowwhattypeandwheretolocatethenecessaryservicesthatheradoptedchildren require. Participantsixworksasanurseinherlocalhospitalforthepastthirtyyears.She chosetoadoptachildwhowasbornprematurelywithmultiplemedicalissues.

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108 Throughouthislifehehasrequiredmultiplesurgeries,medicalprocedures,and advocacyfornecessaryservices.Herknowledgeandpreparationtohandlemedical issuesaidedherinmanagingthechildsmultipleproceduresandneeds.Forher medicalissueswasalsoanormalpartofhereverydaylifesoshefeltwellequippedto handleanyemergencythatarosewiththechild. ParticipantnumbersevenistheonlymalewhowasinterviewedandsimilartoP5 hedidnothaveanydirectknowledgeofdisabilitiespriortoadopting.Heworkedasa computerengineerconsultinginalocalbusiness.Heandhiswifediscussedadopting childrenandforhimitwasastrongdesiretowardsfamilythatledthemdownthepathof adoption.Ultimately,theyweregiventheopportunitytoadoptamalechildwhohada numberofmedicalissues.Whilethisparticipantdidnothaveanydirectexperiencewith medicalconditions,hiswifewasatrainednursewhoworkedinthemedicalfield. P8isa50-year-oldfemale,whoalsolivesintheNorthCentralFloridaarea.She haspastexperienceasaCNAandworkedinalocalnursinghome.Sheliveswithher husbandandtwoadoptedchildren;howevershealsohastwogrownbiologicalchildren. Theyadoptedthefirstchild,atwoyearoldfemale,nineyearsagoaftershewas removedfromherbiologicalparentsduedruguseandneglect.Atthetimeofthe adoptionthechildhademotionalissuesrelatedtotheprenatalexposuretodrugs.A coupleofyearslaterthefamilywasapproachedbythesocialserviceagencywith anotherchild,sixteenmontholdmale,bythesamemother.Onceagainthechildwas bornwithprenatalexposuretodrugsaswellasneglectandphysicalabuse.Their adoptedsonhasbeendiagnosedwithAttentionDeficitHyperactivitydisorder, Aspergersdisorder,asawellasacoupleofmedicalissueswhichhaverequired

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109 multiplesurgeriesandmedicalprocedures.Forthisparticipant,herprofessional experiencehashelpedherprepareforraisingtwochildrenwithmedicalandemotional diagnosis. Thefinalparticipant,P9,isa55-year-oldfemalewhoadoptedherdaughter14 yearsago.Atthetimeofadoptionthechildwassevenyearsoldandhadbeen diagnosedwithmajordepressivedisorderalongwithpost-traumaticstressdisorderin relationshiptotheabuseshehadexperienced.Theparticipantworkedasaphysical therapistandhadprofessionalexperienceinworkingwithpeoplewhohadmental illness.Forthismotherherprofessionalexperiencewasofassistanceinnavigating insuranceissuesaswellaslocatingnecessaryservices.Theparticipantfeltthatthis knowledgewasparamountinherabilityassistthechildasvariouscrisesarose. Anothercommonalityamongstsomeoftheparticipantswastheirchoicetobe fosterfamilies.Fiveofthenineparticipants,P1,P3,P4,P5,andP9,werecertified fosterhomespriortochoosingtoadopt.Forthesefamiliesthefirstmeetingwiththe adoptivechildoccurredthroughfosterplacement.Alloftheparticipantsnotedthat fosteringallowedthemtheopportunitytoassistalargernumberofchildren. Furthermore,byfosteringachildthefamilywasawareofthechallengesthechildfaced priortoadoption. Differences Thereweresomedifferencesamongsttheparticipantsthatwarranthighlighting. ThemethodinwhichP8enteredintoadoptionwasdifferentthanalloftheparticipants. Shewasapproachedbytheadoptionagencyratherthanconsideringadoptionand makingfirstcontact.Furthermore,thiswascaseforP8becausesheadoptedchildren whohadadistantbiologicalconnectiontoherandherhusband.

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110 Anotherinterestingdifferenceamongsttheparticipantswasthatonlytwoofthe ninepeopleinterviewedconsideredadoptionoutofneedduetofertilityissues,rather thandesire.ThiswasthecaseforP2andP6,andhighlightsaninteresting characteristicregardingthestudyssample.Onlyoneparticipant,P3,chosetoadopt thechildwithouthavingapartnerinvolvedtohelp.Furthermore,therewasonlyone male,P7,whoparticipatedintheinterview. Therewasonlyoneparticipantwhodidnothaveanymedicalexperienceor knowledgeregardingdisabilitiespriortoadopting.ForP2,thislackofknowledgeand understandingwasasourceofmajorstressforherandherfamily.Thissourceof stresswasultimatelytooverwhelmingandisoneofthemajorreasonsthatthe participantandherhusbandchosetogetadivorce.Forthismothershedescribed feelinghelplessandoverwhelmed,becauseshedidnotknowhowtohelpherchild. Furthermore,thesefeelingswereexacerbatedbytheadoptivefathersunwillingnessto recognizetheneedforadditionalhelp.

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111 CHAPTER5 INTERPRETATIONOFINDIVIDUALINTERVIEWS ResearchOverview Theresearchertranscribedtheindividualinterviewsinpreparationfordata analysis.Dataanalysisandinterpretationwascompletedusingconstantcomparative methodsinaccordancewithgroundedtheory(Glaser&Strauss,1967).Development oftheoryfromthedataistheprimaryemphasisofgroundedtheory;thereforethe researcherexaminedtheemergingrelationshipsamongthethemestodevelopthe theoreticalframeworkpresentedinFigure5-1.Anecologicalmodelwasutilizedto developthetheoreticalframeworktoexplaintheparentsadoptionexperience. Theecologicalmodelisageneralsystemstheorythatfocusesonrelationships betweenalivingentityandtheaspectsofhisorherenvironment.Asdiscussedin Chapter2theenvironmentofadevelopingpersonisperceivedasnestedstructures, eachinsidethenext.(Bronfenbrenner,1979,pg.3).Atthecoreofthetheoretical modelisthedevelopingperson.Theecologicalperspectiveofadoptiveparents experiencesplacestheparentatthecenterofthetheoreticalmodel.Spanningoutward fromthedevelopingperson(adoptiveparents)isthemicro,meso,exo,andmacro systemsoftheenvironment.Furthermore,thedevelopingpersonsbehaviorsaffectand areaffectedbytheenvironment(Bronfenbrenner,1979).Therefore,thisinteractionis depictedbythebi-directionalarrowsbetweeneachleveloftheenvironment. EcologicalPerspectiveoftheAdoptionExperience Microsystem Whenanalyzingtheinterviewsitbecameevidentthattheparentsweredescribing characteristicswhichdefinedtheirmicrosystem.Basedontheecologicalmodelthe

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112 microsystemisthedevelopingpersonsimmediateenvironment(Bronfenbrenner, 1979).Theimmediateenvironmentmaybehome,school,orwork,butalsoincludes thepersonsbehaviors,beliefs,andthoughts.Forthisstudy,themicrosystemis definedasthepersonalconstructswhichemergedfromthedata. Figure5-1.Ecologicalperspectiveoftheadoptionexperience Personalconstructsdescribetheindividualsexperiencethroughouttheadoption processaswellaswhileraisingthechild.Theseexperiencesarebasedonthe immediateenvironment,whichincludetheadoptiveparentsaswellasanybiologicalor previouslyadoptedchildren.Therefore,theparentsexperiencesincludevariablesof decisionmaking,emotions,andcoping.Examplesofthesevariableswereevident throughouttheinterviewandanalysisprocess.Forexample,thedecisionmaking processfortheparentswasaprominentpartoftheirexperiences.Decidingtoadopta

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113 childwasthefirststepintheadoptionprocessandeachfamilyconsidereddifferent characteristicsasimportaspectsoftheirdecisions.Thesedifferentcharacteristicswill bediscussedfurtherlaterinthischapter. Thesecondpersonalconstructvariableevidentduringanalysiswastheadoptive parentsperceptionsthroughouttheprocess.Parentsperceptionoftheprocesswas expressedintheiremotionstheyexperiencedwhileinteractingwiththesocialservice microsystem.Forexample,parentsexpressedemotionsrangingfromanticipation,to frustration,andjoy.Thefinalvariablewithinthepersonalconstructiscoping.The parentsmethodsofcopingwiththeadoptionaswellaschallengesthatarosewhile raisingachildwithspecialneedswasanotherimportantvariablewhichhelpeddefine theparentsmicrosystem.Throughouttheinterviewprocessitbecameevidentthatthe abilitytocopewasanecessaryaspectfortheadoptiveparentsandwasimportantin determiningsatisfactionaswellassuccessoftheadoptiveplacement.Parentscoping includesavarietyofmethodsdependentupontheadoptiveparentsenvironment (microsystem).Thecombinationofthesevariablesdefinestheadoptiveparents microsystemoftheadoptionexperienceandwillbediscussedfurtherlater. Mesosystem AccordingtoBronfenbrennerthemesosystemofthemodeldescribesthe interactionsbetweenthemicrosystemsthatthedevelopingpersoncomesintocontact with(Bronfenbrenner,1979).Bronfenbrennerproposesthattheinteractionsbetween thesesmicrosystemswillcreatemodificationsinthedevelopingpersons(adoptive parent)behaviorsandthoughts,whichultimatelymodifythemicrosystem (Bronfenbrenner&Morris,1998).Therefore,analysisofthemesosystemisanintegral

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114 aspectoftheecologicalmodel,becauseitaidsintheunderstandingofthemicrosystem andhowchangesmayoccur. Throughouttheinterviews,theparentsdescribedvariablesthatdefinethe mesosystemoftheadoptionexperience.Firstitisimportanttoconsiderthedifferent microsystemsanadoptiveparentwillcomeintocontactwith.Onceapotentialparent choosestogothroughtheadoptiontheyinviteanumberofdifferentmicrosysteminto theirenvironment.Thereisofcoursethedirectmicrosystemwhichcontainsthe potentialparentsandimmediatefamily.Secondisthemicrosystemofthesocialservice agencywhichwillbeinteractingwiththefamilywhilematchingthechildandmonitoring theadoptiveplacement.Thefinalmicrosystemtoconsideristhelegalsystem.The legalsystemisnecessarytocompleteandfinalizetheadoptionofthechild.Asthe parentsdiscussedtheirexperiencesinadoptingachildwithspecialneeds,interactional constructsthatdefinethemesosystembecameevident. Theinteractionalconstructrelatestotheparentsexperienceswhileworkingwith thesocialserviceagencyaswellasthelegalsystem.Forthisstudy,thevariablesof emotionsandprocesswerebestdefinedundertheinteractionalconstruct.These variableswereevidentthroughoutinterviewdata.Alloftheparentsinterviewed describedtheemotionstheyexperiencedduringtheadoptionprocess.Theparents emotionswhichweredirectlyrelatedtotheinteractionswiththesocialserviceandlegal systemhelpdefinedthemesosystem.Forexample,oneofthemostprominent commentsbyalloftheparentswasthefrustrationtheyexperiencedwhileinteracting withthesocialserviceagency.Thefrustrationwasdirectlyrelatedtotheirmicrosystem (thepotentialfamily)interactingwiththeestablishedguidelinesandsocialworkers

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115 withinthesocialservicemicrosystem.Eachmicrosystementerstheadoptionprocess withauniquesetofexpectationsandstandards.Theemotionoffrustrationwas commonlytheresultofconflictinviewsbetweenthetwomicrosystems.Thisconflictis clearlywitnessedasparentsdescribethefrustrationtheyfeltwhenattemptingtoobtain informationfromtheiradoptioncasemanager.Theparentsdiscussedtheassumption thattheadoptioncasemanagershouldbeabletoansweralloftheirquestions,but failedtorecognizethatduetostandardswithintheadoptionsystemthecasemanager maynotknoworbeabletoaccesstherequestedinformation.Ultimately,thedifficulties inobtaininginformationledtheparenttofeelingfrustrated,whichmodifiestheir microsystem.Otherinteractionalexperiencesandemotionsareevidentinthe descriptionsoftheparentsexperienceandwillbediscussedfurther. Thesecondvariabledescribingtheinteractionalconstructistheprocess.The parentsdescribedtheirexperiences,feelings,andthoughtsastheyprogressedthrough theadoptionprocess.Aswiththeemotionsvariable,theprocessvariablealso describestheinteractionsbetweenthemultiplemicrosystemsthattheparentscame intocontactwith.Forexample,parentsdiscussedtheimpactthatcompletingthe adoptionprocesshadonthemandtheirfamily. Exosystem Theexosystemisthethirdenvironmentexpandingoutwardfromthedeveloping person,andassuchthepersonmaynotdirectlyinteractwithinthissystem.Regardless ofthelackofdirectinteractions,thecomponentsofthisenvironmentstillinfluencethe person.Therefore,recognizingthecomponentsofthisenvironmentisanimportant aspectofunderstandingthepersonsbehaviors(Bronfenbrenner,1979).Accordingto Bronfenbrennertheexosystemcommonlycontainscomponentssuchasextended

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116 family,workenvironment,orschool.Forthisstudy,theexosystemoftheadoption experienceisdefinedasthesystemconstruct. Thesystemconstructemergedfromexperiencesidentifiedasimportanttothe participantswhileinteractingwiththeadoptionsystem.Thevariablesthatcomposethis constructarefostercare,adoption,andlegalsystems.Thesecomponentsareintegral partsoftheadoptionprocessandthereforeinfluencetheadoptiveparentsexperience. However,theadoptiveparentsdonotfunctionwithineachofthesesystems.These systemsareclassifiedascomponentsoftheexosystembecausetheyinfluence adoptiveparentsexperienceswithoutdirectinteractions. Thisstudyfocusedontheadoptionofchildrenwithspecialneedsfromthechild welfaresystem.Assuchthesechildrenhaveoftenbeenthroughspecificstepstoreach adoptiveplacementwhichisdescribedinChapter1.Thisprocessstartswiththechild beingremovedfromthebiologicalparentsandplacedintothefostercaresystem. Therefore,thefostercaresystemplaysakeyroleanddecisionsmadeatthistimewill ultimatelyimpacttheadoptiveparent.Whenanalyzingthedata,somethemesemerged regardingthedecisionsatthefostercarelevel.Thesethemesincludethedecisions regardingmovingthechildsplacement,howlongtoallowforreunificationstepsto continue,anddeterminingadoptiveplacement.Theimpactofthesethemeswillbe describedlater. Thenextstepforthechildistobeclearedforadoptionandoncethisoccursthe adoptioncasemanagerassumesresponsibilityforthechild.Responsibilityforthe childscaseincludesmakingdecisionsregardingthechildsplacementandcontinued care.Atthistimethevariableoftheadoptionsystembecomesacomponentofthe

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117 exosystem.Aswiththefostercaresystem,decisionsmadeatthistimewillinfluence theadoptiveparentsexperience.Whileanalyzingthedata,parentsexperiences relatedtotheadoptionsystembecameevident.Themesrelatedtotheadoptionsystem includethestepsoftheadoptionprocessaswellasdecisionsmaderegardingadoption placement. First,isthethemeofthestepsnecessarytocompletetheadoptionprocess.The adoptionsystemhasstandardguidelinesthatallpotentialparentsmustcompletein orderforaplacementofthechildtooccur,whichisdiscussedinChapter1.These stepsemergedfromthedataasalltheparticipantsdescribedwhatwasnecessaryfor themtocompleteinordertofinalizetheadoptionofthechild.Accordingtothe ecologicaltheorythedecisionsbytheadoptionsystemtoestablishguidelinesregarding theadoptionprocessimpacttheadoptiveparentsexperience.Thedatacollectedfrom thisstudysupportstheinfluencesofthesedecisionsastheparticipantsalsodescribed howthestepsoftheadoptionprocessimpactedthemaswellastheirfamily.The impactoftheadoptionprocesswillbediscussedfurther. Thesecondthemerelatedtotheadoptionsystemwasthedecisionsmade regardingtheplacementofthechild.Theadoptioncasemanageraswellasthe participantswithintheadoptionsystemmakedecisionswhichtheyfeelbestpromote successfulplacementforthechild.Thesedecisionsoftenincludeseparatingsibling groups,placingachildinanopenversusclosedadoption,orwhotoapproachwhen adoptionbecomesthegoal.Allofthesedecisionsaswellastheirimpactonthe adoptionexperienceemergedduringdataanalysis.Thisagainsupportsthe assumptionsthateventsoccurringattheexosystemimpactthedevelopingperson.

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118 Thelegalsystemisthefinalcomponentoftheexosystem.Adoptionisthe completionofalegalprocessinwhichtheadoptiveparentsassumeallrightsand responsibilitiesforthechild,thusrequiringthecourtsystem(Adamac,2008).This variablewasevidentthroughouttheanalysisofthedataasparentsdescribedthe processinwhichtheywentthroughinordertofinalizetheadoptionofthechild.The legalsystemwasdescribedsimplyasanecessaryaspectoftheprocess;however someparentsexpressedthedesiretounderstandthelegalsysteminordertofeel comfortablewiththeprocess.Thisvariablewillbedescribedfurtherinthedata analysis. Macrosystem Theoutermostenvironmentwhichimpactsthedevelopingpersonisthe macrosystem.AsdiscussedinChapter2themacrosystemencompassesalltheother systems,andiscomposedoflawsandregulationsaswellasculturalattitudesthat impacttheshapingofthemicrosystem(Schweiger&OBrien,2005;Bronfenbrenner, 1979;Bronfenbrenner,1998;Palacios,2009).Firstitisimportanttoestablishthe integralrolethatlegislationplaysintheadoptionprocess.Bothfederalandstate legislationestablishthefostercareandadoptionsystemsaswellastheprocedurein whichtheyfollow.Allofthedifferentlegislationregardingadoptionisdescribedin Chapter2.Whilethisaspectofthemacrosystemwasnotevidentinthedatacollected fromthisstudy,itsimpactonthemicrosystemisstillanintegralpartandwillbe discussedfurtherinChapter7.Theothercomponentofthemacrosystemiscultural attitudesandforthepurposeofthisstudyisdefinedasthesocialconstruct. Themacrosystemencompassessocietysviewsofadoptionwhichisdefinedas thesocialconstruct.Thesocialconstructillustratesthesocietalviewsthatarosefrom

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119 theparticipantsdiscussionsontheadoptionexperience.Thisconstructcontainsthe variablesofsocialviews,socialpressures,aswellaspeerpressure.Thevariableof socialviewsdescribestheparentsexperiencesoutsideoftheirfamily.Thisexperience wasevidentinthedescriptionstheparentsprovidedwhileinteractinginsocietyand defineothersviewsofadoption.Thesecondvariable,socialpressures,describesthe impacttheparentsfeltinregardstothewayothersviewedtheadoption.Forexample, someparentsdescribedhowtheirextendedfamilydoesnottreattheadoptedchildthe sameasbiologicalchildrenbecauseofthesocialconceptsofadoptions.These variableswillbediscussedfurtherinthedataanalysissection. Thelastcomponentofthemodelisthearrowrunningfromthemacrosystem towardsthedevelopingperson.Thisarrowmodelsthetopdowneffect,which accordingtoecologicaltheoryestablishesthateachsystemimpactsthepersons behaviors.Socharacteristicswithineachsystemwillshapeorchangethepersons behaviors.Therefore,basedonthisconceptachangeatanysystemslevelwillalter thepersonsbehaviors. Microsystem:PersonalConstruct Atthemicrosystemleveltheparticipantsidentifiedpersonalconstructswhich shapedtheirimmediateenvironment.Thepersonalconstructincludesdecisionmaking, andemotions. DecisionMaking First,isthevariableofdecisionmakingwhereparticipantsidentifiedanumberof characteristicswhichaidedintheirdecisiontoadoptachildwhohadspecialneeds. Oneoftheprominentcharacteristicswasknowledgeofthehealthcarefield.A commonalityamongalloftheparticipantswastheirexperienceinthemedicalfield.The

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120 parentsdiscussedhowtheirexperienceinthemedicalfieldalongwiththe accompanyingknowledgeofdisabilitywasahugefactorinhelpingthemfeel comfortableincaringforachildwithadditionalneeds.Theparentsoftenstatedthatthis experienceallowedthemtobepreparednotonlyforwhattoexpect,buthowtohandle emergenciesastheyarose.Feelingpreparedtohandletheadditionalissuesmeant thattheparentswerenotuncomfortablewhenbeingpresentedwithachildwhohad specialneeds.InthefollowingstatementfromP4,shediscusseshercareerandhowit shapedherviewsonchoosingtoadoptachildwithspecialneeds. P4:Well,Imanoccupationaltherapistandhaveworkedwithkidswith..So asanOT,itdoesntbotherusatalltohaveachildwithspecialneeds. P3discussesherexperienceinthefostercarefieldandhowherworkknowledge assistedherinthedecisiontoadoptthechild. P3:Iworkedactuallyplacingchildreninfosterhomesatthetimethechildwas placedwithme.IknewwhatissuesthechildhadandIknewthathehad beenextremelyhardtoplace..atfirstIwasnotsureifIwantedto adopthim.ThenIrealizedthatIhadtaughttheMAPPclassesandIknew thatIhadtheskillsandtrainingtobeabletotakecareofthischildandto understandaswellasdealwiththeissuesthathehas. P6alsodescribeshowherroleasanursemadeherasuitablechoiceforadoptinga childbornprematurelywithanumberofmedicalissues. P6:ImeanIhadyearsofexperienceinworkingwithillnessesandmedical problemsandhadanunderstandingofwhatthischildwouldfaceinthe future.Ifeltthatmyknowledgeplusthefactthatwewouldnothavebeen guaranteedachildwithnoissuesifwehadabiologicalchildplayeda hugeroleinusdecidingtoadoptthechild. Anothercharacteristicdescribedbyparticipantsasimportantinmakingthe decisiontoadoptwasthedesiretobeamotherandhaveafamily.Theparentswho chosetoadoptdescribedastrongfeelingtowardshavingalargefamily.Thisdesire wasadrivingforcebehindparentschoosingtoadopt,becausemostoftheparticipants

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121 inthestudyhadbiologicalchildrenpriortochoosingtoadopt.Theconsensusamong mostoftheparticipantswasthatbeingamotherandsurroundingthemselveswith familywasauniqueandspecialrolethattheyhadthedesiretoestablish.Thefeelings offamilyareevidentinthestatementbyP4onhowpowerfulthedesireofbeinga motherwastoherandhowithelpedhermakethedecision. P4:FromthemomentIpickedthechildoutofthecarseatandhelookedat meandhecalledmemamaandthatjustah,thatwasamazingforme.I hadfosteredteenagechildrenforyearsandnothingcompared....Ijust knewthatheneededsomeoneandhewascallingmemamasoIknew whatIneededtodo. P1describesthebondamotherhaswithachildandexpresseshowpowerfulofan experienceitistoher. P1:Ijustwantedthem,itwasthemotherinmeandIhavealwaysbeenthat way.MyhusbandandIcontinuallytalkedaboutthis,weknewthatwe wantedtohelpasmanychildrenaswecould.Andeverytimefromthe secondtheywereinmyarmsthereisabond.Idontknowtomethereis nobuildingabond.Itisthere.Thatmotherinmewasautomatic,even havingmyownchildren.Wejustlovedherlikeanyotherbabywehad. Themajorityofparticipantsidentifiedtheexplorationprocesstheywentthrough whencomingtothedecisiontoadoptachildwithspecialneeds.Thisprocesswas individualizedforeachparticipantbutincludedseveralaspectssuchasdiscussing specialneedsadoptionwithhisorherpartner,referringtoeducationalsources,aswell asrelyingonreligiousguidance.Discussionbetweenpartnerswasanimportantaspect incomingtothedecisiontoadoptachild.Theparticipantsdescribedhavinglengthy conversationsregardingiftheyshouldadoptaswellasthecharacteristicsofthechildin whichtheycouldmanage.Foranumberofparticipants,thedecisiontoadoptwasnot madequickly,insteadtheyexplainedhowtherehadmanyconversationsoveraperiod timeregardingtheirdesiresbothasacoupleandfamily.Theparticipantseven

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122 explainedhowitwasimportantforthemtoincludetheirbiologicalchildreninthese discussionsinordertoassuretheywerecomfortablewiththefamilysdecision.This statementbyP5displayshowdiscussingthingswiththeirpartnerwasanimportantpart ofthedecisionmakingprocessforthem. P5:MyhusbandandIsatdowntogetheranddiscussedwhatitwasthatwe bothwanted.Wetalkedaboutaddingchildrentoourfamilyandbothfelt thatwewantedtodothat,butwasnotsureofadoptingachildwithspecial needs.Itwasahardthingforustodeterminebutwereallyfeltthatitwas therightthingforus.Itwasimportanttousthatwewereonthesame pageinourdecisionpriortoenteringtheprocess. Theseresultsdemonstratehowanecessarypartoftheexplorationprocessforthis participant,wastoassurethatsheandherpartnerweremakingtherightdecisionand wereonthesamepage,priortoenteringtheadoptionprocess.Moreover,some participantsfeltthatitwasimportanttogaininformationandeducationregardingthe processaswellaswhattoexpectwhenadoptingachildwhohasspecialneeds.The participantsexpressedthatseekingeducationalresourceshelpedeliminatesomeofthe fearsandmadethemfeelmoreprepared.Furthermore,forsomeoftheparticipantsthe educationallowedthemtogainasenseofcontroloverasituationthatwasdescribedas foreignandoftenfrustratingtothem.Thispartoftheexplorationprocessisevidentin thestatementmadebyP8. P8:Whenwewerethinkingaboutadoptionandthechildwasclearedfor adoptionwestartingthinkingbackonourtrainingcoursesovertheyears andhowtheydiscussedthefactthatyouhaveachoice,youcanbea fosterparentoradoptandwhatdoyouwant.Thinkingbackonthethings thatwelearnedhelpedusfeelpreparedtoadoptachildwithspecial needsandreallyseemedtogiveustheconfidenceanddesiretoproceed forth. Anothercharacteristicidentifiedbytheparentsasimportantwhenconsidering adoptionwasfaith.Theuseoffaithisacommonmethodofseekingassurance

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123 regardingavarietyofdecisions.Dependinguponthepersonsmicrosystemand establishedbeliefs,religiousguidanceplayedanintegralroleintheadoptionprocess. Acoupleofparticipantsexplainedtheirfaithandhowitwasimportantinhelpingthem makethedecisionregardingadoption. P7:Probablymyfaithwasoneofthemostintegralthingsinchoosingtoadopt. MywifeandIchosetoconsultwithfriendsofthechurch,ourspiritual guidance,andturnoverthedecisiontoourfaith.Andthedecisionwas conferredtomeinthetempleinAtlanta. Thefinaldecisionmakingcharacteristicidentifiedwasthelackofassurancethata biologicalchildwouldnothaveanyissues.P6expressesheropinionsonbeing presentedtheoptionofadoptingachildwithmedicalissues.Thisstatementshows howbeingpresentedwithachildwhohadadisabilitydidnotappeartobeanydifferent thanifshehadabiologicalchild.Anumberoftimesduringadoptionthepotential parentsfeeltheyaregettingtopickandchoosethecharacteristicsofthechild,butfail tokeepinmindthatnaturedoesnotworkthatway.InthisnextstatementP3describes herfeelingsonadoptionsandhowtherearenoguaranteesthatthischildwillbeany differentthanabiologicalchild. P3:Ourmindsetallalong.,wecouldhaverefusedtotakeourfirstchild becausewewantedagirlbutourmindsetwasthatifIhadbeenableto getpregnant,IwouldnthavenottakenagirlifIhadbeenpregnantwitha girlandthesamethingwithadisability.Right,andwewouldnothave said,youknow,toobadlettheStatetakeitifwehadhadachildbornwith medicalproblems.Sotousitwasthesame,becausethereareno guaranteeswithbiologicalchildreneither. Emotions Throughouttheinterviews,alloftheparticipantsnotedanumberofdifferent emotionsinrelationtotheadoptionprocessaswellasraisingachildwithadisability. Thefirstemotionnotedintheparticipantsexperienceswasanticipation.The

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124 participantsdescribedexperiencinganticipationpriortothechildbeingplaced.The parentshadprogressedthroughthestressassociatedwithdecidingtoadoptachild, whichlefttheparentsfullofanticipationfortheadoptionmatchtooccur.Theparents statedthatwaitingtobematchedwithachildtookacoupleofmonths.Thisemotion wasdescribedbyP9whenshetalkedaboutcompletingthebackgroundprocessof adoption. P9:Onceyouaregiventheokaythenyouhavetowaitandwait,wait,wait, wait,untiltheyfindtherightchildforyou.Theprocesstakesalongtime andalotofpatience.YoujustwantthatchildinyourcareandIwasreally unsureofwhenitwasgoingtohappen.Itseemslikeittookforever. Anotheremotioninwhichparentsrelatedtotheirexperienceswiththechildwas joy.Joywasactuallyrepresentedintwodifferentperiodsoftheadoptionexperience. First,theparentsfeltjoywhenthechildwasplacedwiththem,andsecondwasthejoy theyfeltwhenreflectingontheirexperienceofparentingthechild.Theparticipants explainedthatoncethewaitingwasoverandachildwasplacedwiththemthattheyfelt extremejoy.ThisfirststatementbyP6showsherjoywhentheadoptionprocesswas finalizedandshewasconsideredthelegalguardian. P6:YouknowIreallyjustexpecteditwouldjustbelikethesameasifIhad hadthechild.Justexpectingtobetobeahappylittlefamily(increase toneofvoiceandintonation)youknowjustthejoyofhavingchildrenand mychildrenwereajoyfromthemomentthattheywereplacedwithus. Butwhenwedidfinallygetachildwowwhatjoythatwastomeandmy husband,itislikenothingIcanexplain.Itwasjustthejoyoffinallygetting tobefamilyandtohavethechildinourcare.Itreallymadeallofthe waitingseemworthwhile. Theparentsalsoexpressedjoytheyexperiencedwhileraisingthechildandbeingable towitnessthemdevelopintoaperson. Alongwiththepositiveemotionsofraisingachild,parentsalsocommonly expressednegativeemotionsincludingfrustrationandfear.Thefeelingsoffrustration

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125 wererelatedtoanumberofaspectsinbothadoptingandraisingthechild.Oneofthe primaryareasoffrustrationswastheconfusionsregardingwhattypeandwhereto locatemedicalandpsychologicalservicesnecessarytoaddressthesymptomswhich theirchildwasdisplaying.Thesedifficultieswerereportedbyacoupleoftheparents whoknewsometypeofserviceswerenecessary,howeverdidnotknowwheretostart. Theseparentsevendiscussedcontactingtheadoptionagencyforguidancebutnot findinganyassistance,whichonlyescalatedtheirleveloffrustrations.Thislackof understandingisevidentinthediscussionbyP8. P8:Itreallywasnteasyinthebeginning;Iknewtherewereissuesthat neededtreatment.Thekidswerehavingbehavioralproblemsandtheboy Iadoptedwasunabletohear.Findingtherightpeopletogettowasa majorchallengeandwasextremelyfrustrating.Itriedcontactingthe adoptionagencyforassistance,andquestionedthemontheir recommendationonwheretotakethekidsforservice.Theytoldmethat wedontknowwheretotellyoutakethem.Itwasextremelyfrustrating. P2expressesasimilarsituationwithhersonandhowtheadoptionagencywasofno assistantinhelpingherunderstandwheretogethelp. P2:ThemajorproblemsstartedgoingoninelementaryschoolandIcalled CHStoreceivehelpregardingtheissuesandfoundoutIwasonmyown. Ididnothaveanyknowledgeregardingthesetypesofissues,andIhad nocluewheretotakethechildtogethelp. Thesecondnegativeemotionsuggestedbytheparticipantswasfear.Oneparent specificallytalkedabouthisfearsforthechildsfutureandinteractinginregularschool. Herehedescribeshowhewassurethechildwasgoingtohaveproblemsin mainstreamschoolwithteasingandsocialskills. P7:IwasscaredtodeathforhimtobeinaregularschoolsystembecauseI knowtheressomebaddudesthereandIalwayshadavisionIalways hadavisionofhimbeingtrappedinthebathroom.Oh,mygoshitjust justthatpicturejustjustkeepscomingtomymindandsoIreallydidnt wanthimthere.AndbutIguess,what,thelasttwoyears,Iguess,he wentpart-timetothehighschoolandhedgodownthehallandcallhis

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126 nameandsayhowyadoing?Imean,justhedidsomuchbetterthanI expectedanditturnedoutthatmyfearsforhimwerenotjustified. Whilethisparticipantwentintotheexperienceofsendinghischildtoschoolwithfears, hewasabletoquicklyrealizethatthechildwascapableofhandlingthesocial environment.Anotherparticipantexpressedsimilarfearsregardingthechildsfuture. Forherthesefearsarecompoundedbythefactthatsheisanolderparent.The participantexplainsthatwheninitiallyconsideringadoption,heragewasnotafactor, howeversherealizedlaterthatitimpactstheadoptionexperience.Shediscussthe realizationthatsheisnotasphysicallyabletocareforthekidsandfearfulforwhatthis meansastheyemergeintoadulthood.ThisisevidentinthefollowingcommentbyP1. P1:Whenyouareyoung,Imeanwhenyouhavethesechildreninyour possessions,youlovingthemyourbondingwiththemyoureallycannot think-20yearsdowntheroadthatyouaregoingtobetired,andgray hairedandthatyouaregoingtobelikeme.Andthereisalwaysthefear nowwiththembeingbipolarofwhatisgoingtohappentothem.(Crying) Cantheytakecareofthemselvesmentally;aretheygoingtobeableto holddownajob.Aretheygoingtoendup,withrageandviolenceisshe goingtobeupinprisononedayforhurtingsomeone.ImeanIthinkof thefutureandIcannotsaytomychildyouneedtotakethesedrugs becausemommydontwantyoutoeverbeinjail.Itreallyjustmakesme veryfearfulforwhatthefuturemighthold. Mesosystem:InteractionalConstruct Forthisstudythemesosystemlevelisdefinedbytheinteractionalconstruct.The interactionalconstructcontainsvariablesofperceptionsandprocess.Thevariablesof perceptionandprocessdescribetheexperienceoftheparentsmicrosysteminteracting withthemicrosystemofthesocialserviceagency. Perceptions Throughouttheinterviewstheparentsdiscussedtheirperceptionsofthe experiencedirectlyrelatedtotheirinteractionswiththemicrosystemofsocialservice

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127 agency.Theseperceptionswereexpressedinthefeelingsoffrustrationdirectlyrelated totheparentsinteractionswithadoptioncasemanager.Theparentsdescribedbeing frustratedwithacoupleofcharacteristicsrelatedtotheadoptionsystemincluding:lack ofinformation,andthelackofpostadoptionsupport.Anumberoftheparticipantsfelt thatthecasemanagerswerenotprovidingalloftheinformationregardingthepotential adoptivechild.Itwasexpressedbysomeparticipantsthattheyfeltthecasemanager withheldthechildsphysical,emotional,andpsychologicalhistoryfromfearthatthey wouldnolongerbeinterestedinadoptingthechild.Furthermore,parentsexpressed frustrationsatthelackofinformationwhichwasprovidedaboutmedical/psychiatric historyregardingthefamilyoforigin.P3pointsouthowthelackofbackground informationoftenleadstofeelingsoffrustrations. P3:Mychildhastwoothersiblingsanditslikewithhismiddlesibling.That adoptionfailedandIthinkitisbecausethefrustrationsbuiltupregarding thelackofinformationandunderstandingonthemagnitudeofissuesthat allthesekidshad.Thisledtothatadoptionfailing. Feelingsoffrustrationwerealsorelatedtothelackofsupportparentsfeltthey receivedfollowingtheadoption.Acommonthemeamongtheparticipantswaslackof postadoptionsupport.Anumberoftheparticipantsdescribedcontactingtheadoption agencyseekingguidanceonhowtolocatethenecessaryservicesoncethechilds issuesincreased.Theparticipantsdescribealackofguidancefromtheadoption agency.Oneparticipantstatesthatitwaslikebeingabandonedwiththischild.The feelingsofabandonmentlefttheparticipantextremelyvulnerableandoverwhelmed. Furthermore,theparticipantsnotethatthelackofassistancefromtheadoptionagency createdadelayinthechildreceivingessentialservices.Thesefeelingsand experiencesareevidentinthefollowingstatementsbyP8andP2.

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128 P8:Itriedcontactingtheadoptionagencyforassistance,andquestionedthem ontheirrecommendationonwheretotakethekidsforservice.Theytold methatwedontknowwheretotellyoutakethem.Itwasextremely frustrating. P2expressesasimilarsituationwithhersonandhowtheadoptionagencywasofno assistantinhelpingherunderstandwheretogethelp. P2:Istartedtellinghisdadwhenhewasinpreschoolthatheneededsome typeofhelpandthattherejustwasnotsomethingright...Thisstarted goingoninelementaryschoolandIcalledCHS(ChildrensHomeSociety) toreceivehelpregardingtheissuesandfoundoutIwasonmyown.It wasalluptome.Youwouldthinkthattherewouldbesomethingmore. Evenasupportgroupbuttherewasnothing.Sowewentonlikethatfora longtimewithoutmysonreceivinganyservices.Itwasjustreally overwhelmingandfrustrating. Process Thesecondvariablewithintheinteractionalconstructistheprocess.Theprocess describestheparticipantsexperienceswhilecompletingthestepsinvolvedduringthe adoption.Thedecisiontoadoptrequiresthepotentialparentsmicrosystemtointeract withanothermicrosystem.Thisinteractioncancreatetensionwithineachsystem.For theparticipantstheareasoftensionsidentifiedweredirectlyrelatedthelackof communicationbetweenthefosterandadoptionsystem,lackofguidancebyadoption casemanagers,andthepaceoftheadoptionprocess. Theparticipantsdiscussedtheprocesstheywentthroughinordertofinalizethe adoptionofthechild.Eachparticipantdescribedtheprocessasextensiveandinvasive forthefamily.Theparticipantsexpressedthisexperienceasstressfulespeciallywhen havingtorepeatstepsmultipletimesduetoalackofcommunicationbetweenthefoster andadoptionsystem.Oneareawhichcommonlywasreferredtoasrepetitiveandtime consumingwasthefingerprintingandbackgroundcheckprocess.Theparticipants describedhowtheywererequiredtobefingerprintedmultipletimesespeciallyifthey

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129 fosteredthechild.Theparentsoftendescribedthisasconfusingbecausetheyhad alreadygonethroughthefingerprinting/backgroundprocesswiththefostercare system.Regardlessofbeingclearedforfosteringtheserecordswherenottransferred totheadoptionagency,thereforerequiringtheparentstocompletethisprocessagain. Theparticipantsfeltthatthiswasanextremelytimeconsumingprocessandrequired themtoarrangetheirschedulesinordertocomplete.Thisexperienceisdiscussedin thestatementbyP4. P4:Wehavebeenfingerprintedthreedifferenttimes.Imeanourfingerprints haveruntothesameorganizationdoingFBIbackgroundchecksonus.I dontunderstandwhytheycantusethesamefingerprintsandcallupand say,Youhavethispersonsfingerprintsonfile.Wejustneedanupdate. Doesntmakeanysensetome. Thenextareaoftensionrelatedtothethemeofprocesswasthelackof communicationormissinginformationbetweenthefosterandadoptionagency.The parentsdescribedfacingmajorbarrierswhenseekinginformationregardingthechilds pastmedicalcare.Theparticipantsnotedthattheyoftenhadquestionswhichthey posedtotheadoptioncaseworker,butthesequestionswentunansweredbecauseof separatefostercareandadoptionsystemdocumentation.Furthermore,theparticipants notedthattheadoptioncasemanagerstatedthattherecordsfromthefostercare systemdonottransfertotheadoptionagency.Thelackofcontinuitybetweenthetwo agencieswasdescribedasamajorpointofcontentionfortheparents.Thelackof communicationwasnotonlyrelatedtoinformationregardingthechild,butalsoforms relatedtothefamily.Anumberoftheparticipantsfosteredthechildpriortochoosingto adoptandexpressedthattheadoptionagencyrequiredthemtoredoanumberofthe sameforms.Thiswasdescribedtimeconsuminganditonlyextendedthetimeframe requiredforfinalizationoftheadoption.

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130 P9:Iguessformethebiggestchallengeisthatthefosterandadoptive organizationsdontkeepthesamedata.Theydontcommunicateaswell. Theydmakeyoudoitallagainanditsthesamepaperwork.Thiswas reallyfrustratingtousbecauseitsloweddowntheprocessandrequired ustodothesamethingsoveragain. Thenextareaoftensionrelatedtotheprocesswasthelackofguidanceregarding whattoexpectthroughouttheadoptionprocess.Specifically,oneparticipantdiscussed theuncertaintyrelatedtothestepsinwhichshewasexpectedtocompletefor finalizationtooccur.Shenotedthatitwouldhavebeenhelpfuliftheadoptioncase managerwouldhavebeenabletoprovideherstepwiselayoutoftheprocess.The participantexpressedfeelingsofbeinglost,overwhelmed,andfrustratedwithout knowingwhatwassupposedtohappennextintheprocess.Furthermore,shenotes thatcasemanagerwasunabletoprovideatimeframeinwhichshecouldexpectthe necessarypaperworkandlegalprocesstobecompleted.Thisagainleftherfeeling tenseregardingtheprocess,aswellasuncertainonhowtoproceedinorderto expeditefinalization. P4:Wecouldntreallygetanybodytoreallygiveusthishappensandthenthis happensandthenthishappens.Shekindagaveussomeglobalsteps, butwewantedlikesometangibles.Sowhenwillthehomestudybe finishedandwhendowetalktotheattorney?YouknowwhatImean? Sowedidnthaveatimeframe.Shewouldntgiveuslike,Illbedone withthisintwoweeksandthenafterthatyouregonnadothisinaweek andthen Afinalareaoftensionrelatedtothethemeofprocesswasthefrustrationthe participantsexpressedinrelationshiptothepacewhichfinalizationoccurred.The consensusamongtheparticipantswasthattheadoptionprocesswasslowandtooka coupleofyearsbeforefinalizationwasachieved.Fortheparticipantsthiswasan extendedperiodoftimeinwhichtheyandtheirfamilywereinlimbo.Therefore, participantsdescribedfeelingfrustratedduetoextendedperiodinwhichtheywere

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131 unabletobealegalfamily.P4talksaboutsomeofthethingsthatherandhusband experiencedwhilenavigatingtheadoptionprocess. P4:Itwassofrustratingforustogothroughtheprocess..Thentimejust keptdraggingonandnothingwasbeingaccomplisheditsliketheywant ustojumpthroughhoopsandsubmittoallsortsofthingsbutthenonceit istheir(adoptionagency)responsibilitythenthingschange.Itwashard forafamilybecausewedidntknowwhattoexpectandjustfeltlikewe wereinlimbo.Alotstressandfrustrationcouldhavebeenavoidedbyjust communicatingtheprocesstousbetter. P8alsocommentedonthepaceoftheprocessbysaying: P8:Thestatemovesrealslow.Thatsoneproblem.Ittooktwoyearsto completetheprocessandgobeforethejudgeinordertofinalize.That wasalongamountoftimewhereIwascaringforthechild,butyetlegally hewasnottechnicallymychild. Exosystem:SystemConstruct Systemconstructdescribestheexosystemleveloftheenvironmentandincludes themesrelatedtothefostercare,adoption,andlegalsystems.Potentialparentsare requiredtointeractwiththesethreeenvironmentswhilenavigatingtheadoption process.Whiletheparticipantsarenotdirectlyapartoftheseenvironments,theystill influencetheadoptionexperience.Thisinfluencewasevidentintheparents discussionregardingadoptingachildwithspecialneeds. Fostercare Throughoutthedataanalysisprocessaspectsofthefostercaresystemandits impactontheadoptionexperiencewerediscovered.Thefirstthemeinrelationtofoster carewastheadvantagesoffosteringthechildpriortoadopting.Fiveofthenine parentsfosteredthechildpriortochoosingadoption,andthiswasdescribedasan importantaspectintheirexperience.Theparticipantsexpressedthatfosteringthechild providedthemwiththeopportunitytograsptheconceptofthechildsneeds.

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132 Furthermore,theparticipantsfeltthatsincetheyhadbeencaringforthechildand managingtheneedsforaperiodoftimethatcontinuingthatrolewouldnotbe burdensome. P9:Themosthelpfulthingduringtheadoptionprocesswasgettingtoknow himashisfostercaremother,honestly,causeIthinkitsaloteasierto adoptsomeoneyouknowbetter,thanhavingsomebodycomeinyour homeandyoudontknowthem.Itseasier,Ithink,togofromfosterto adoptcauseyouhavehadtheopportunitytoseewhattheyrelike,tohear whattheyrelike,toseetheirneedsand,youknow,livewiththem. Whilefosteringthechildisdescribedasagoodwaytounderstandthechild needs,someparticipantshaddifferentviewsonthechallengesposedbythefoster system.Thefirstchallengeinrelationshiptothefostercaresystemisthedurationof thereunificationprocess.Theparticipantexpressedthisaschallengingduetothefact thatreunificationprocesscontinuesevenwhilethebiologicalparentsprogressivelyfail thechild.Theparticipantsthenhavetowitnessthedisappointmentinthechildandfeel veryhelplessthroughouttheprocess.Furthermore,theparticipantsexpressedthe impactthatthedisappointmenthadonthechildsbehaviorsandtheirabilitytoform attachmentswiththeadoptivefamily. P3:Yeah,well,hewasinfostercareuntilhewasfour,sofortwoyearswe wentthroughthefostercareprocesswheretheythestatetriedtoreunify himwithhisparents.ThiswaschallengingbecauseIwasabletowitness thedisappointmentinhimeverytimehisparentsdidntkeepvisitsor wouldnotupholdpromises.Hisnegativebehaviorswerealwaysworse whenhereturnedfromavisitanditmadethingsdifficult. Similartothechallengesexpressedregardingthereunificationprocessisthe instabilityachildexperienceswhileinthefostercaresystem.Specifically,onemother describedhowthechildsheadoptedhadbeentransferredthroughtendifferenthomes duringhissixmonthsoffosterplacement.Thechildhadmajoremotionaland behavioralissueswhichcreateddifficultieswhenattemptingtolocateasuitablefoster

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133 home.Theparticipantbelievethatthisinstabilitycontributedtotheformationof attachmentdisorderthatchildhas. P3:Hewasinfostercare.Hewasoneofthechildrenthatwerevery,very hardtoplaceinfostercare.Hewassohardtohandlethattheywould thenhavetopickhimup,keephimintheoffice,draghimaround.The continualmovementinthefostercaresystemonlyexacerbatedsomeof behavioralissuesandattachmentproblems.Ibelievethatitreallymade himfeellikehewasnotwantedbyanyone. Adoptionsystem Theadoptionsystemanditsroleintheprocessbecameevidentasthe participantsdescribedthestepsnecessaryforfinalization.Theparticipantsidentified ninebroadareasinwhichcompletionoftaskswerenecessaryforfinalization.These areasarediscussedintable4whichshowseachstepoftheprocessaswellasa discussionfromparticipantsontheirpersonalexperiences.Eightoftheparticipants seekingtoadopt,wentthroughthepublicfostercaresystemandoneparticipantwent throughaprivatereligiousentity.Thetwoagenciesfollowedsimilarprocessesandthe stepsdescribedwherethesame.Furthermore,alloftheparticipantsdescribedworking throughanadoptioncasemanagertonavigatethestepsandcompletetheprocess. ThesestepsareexplainedinTable4withexcerptsfromtheinterviewswhichhighlight thethemes. Anotherconcernregardingtheadoptionagencybroughtupbyanumberofthe participantswassomeofthedecisionsmadebythecasemanagers.Oneofthe primarychallengesdiscussedwastheagenciesdecisiontoseparatesiblingsinorderto makeadoptioneasier.Twoparticipantsadoptedachildthatwasapartofalarger siblinggroupandfeelsthatthisdecisionhasnegativelyimpactedthechild.Both participantsexpressthattheirchildhasadesiretomaintainaconnectionwiththeir

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134 biologicalsibling,howeverduetothedecisionandgeneralpracticeoftheadoption agencythishasbeenimpossible.Theparticipantsnotethattheinabilitytomaintain contactwiththeirsiblingshashadanegativeimpactonthechildsemotionalwellbeing andcreatedtensionforthechild.Thesechallengeshavealsoimpactedthechilds abilitytoformattachmentswiththeiradoptivefamily. Macrosystem:SocialConstruct Thefinalleveloftheenvironmentisthemacrosystem,whichisdefinedbythe socialconstruct.Thesocialconstructencompassesthemesregardingsocietalviewsof adoptions.Theparticipantsdonotdirectlyinteractwithinthisenvironment;howeverit alsoinfluencestheparticipantsoverallexperienceanddecisions.Theinfluenceswere evidentinthroughoutthedataanalysis. Socialpressures Whilediscussingtheadoptionexperiencethethemeofsocialpressuresaroseas inimportantaspecttoanumberoftheparticipants.Theparentsdiscussedsocietys viewsofchildrenwithspecialneedsandtheimpactthishashadontheirexperiencesof raisingthechild.Forinstance,P5talksaboutconsultingwiththeirbishopregardingthe decisiontoadoptachildwithspecialneeds,andhowhisstrongviewsontheissues affectedtheguidanceheprovidedthem. P5:Wehadareallygoodfriend,actuallyourbishophereintownandand wewenttohimandtoldhimthesituationbecausetheyhadtoldusa week-and-a-halfortwoweeksbeforeweactuallywentdownandgotthe child.Weexplainedthathewasprematureandthathehadsomemedical issues.Andthisguy,ourspiritualleaderandtypicallythepersonwhose advicewhichwewouldfollow,becausewevaluedhisopinion,toldusthat hewouldnottouchthesituationwithatenfootpole.Ithinkhiswords wereIdletthatonealone.AndImeanhewouldhavebeenwrong becausewewouldhavemissedout.

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135 Thisparentalsodiscussedthoughtsonaraisingachildwithspecialneedshasbeen reflectedinthecommentsandstatementsmadetoherincludingthisone. P5:Andsubsequently(toadoptingthechild)manypeoplehavesaid,oh,my goshyourejustsosowonderfulandeverythingbuttousitslike,we justwantedchildren. Anotherparticipant,P8,expressessimilarexperienceswiththingspeoplesaytoher aboutherchoicestoadoptachildwithspecialneeds. P8:IwastalkingwithafriendonetimeandtheysaidtomeWowthosekids arereallyluckythatyoudecidedtoadoptthemandtakethemin,youare prettyamazingforchoosingtodothat.Iwasjustshockedbythe statement,becausethesekidshavegivenmesomuch.Theyarethe reasonIgetupinthemorning,theykeepmegoing,andkeepmefeeling young. HereP1discussessomethingsheexperiencedwhileatthestorewithoneofthe childrenshechosetoadopt. P1:AtonepointIwentoffthedeependat.Iwashuggingandkissingonher, justthenaturalbabyyouknow.Thiscouplewalkedbesidemeandthe ladysaidthatisdisgustingthatwhitewomankissingonthatblackbaby. Andthemotherinmecomeunglued,Ijuststoppedandturnedaround andsaidexcusedme.Isaidmadoyouknowwhatthewordlovemeans, andshesaidyesIdo.Isaidwellifyoudothenyouwillknowthatthere arepeoplewhoadoptchildrenandtakecareofchildrenjustbecausethey lovechildrenandIamsorrythatyoujudgemebecauseIlovethisbaby. Thisinteractionreallyshedslightonsocietysviewofthediversityadoptioncreates,as wellassomethechallengesadoptivefamilyface. Anothersocialaspectistheextendedfamilysviewsonthedecisiontoadopta childwhohasspecialneeds.Thefamilymaychoosetosupportthefamilydecisionand helpwithprocess.ThisisevidentinthefollowingpartoftheconversationwithP2. P2:Myownbiologicalchildrenhadtowriteletteraboutwhytheywanteda babysisterablackbabysister.Mygrandchildrenwroteletter,because theyjustdid,theydidntseecolor.Youknow,andummandinoureyesit wasjustababy.Knowmyolderchildrenlookoutforthegirlsandsayhey

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136 momguesswhatisoutandtheywillsendherstuff.Furthermore,thegirls ourwilledtomyoldestdaughterifsomethingweretohappentomeand myhusband.Thefamilysupporthashelpedthroughouttheprocess. Incontrasttheextendedfamiliesviewsoftheadoptionmaybeofdisapprovalandlack ofacceptanceoftheadoptedchild.ThiswasthesituationforP3. P3:Myparentswereagainstmeadoptingthechild,theyfelthehadtoomany issuesandthefactthatIwasasingleparentwouldcauseissues.WhenI havestruggleswiththechildsemotionalissuesmyparentsareofno assistant.TheyjusttellmethatIknewwhatIwasgettingmyselfintoand thattheytoldmeitwouldbethisway.BasicallyitisImademychoiceand Ihavetodealwithinonmyown.Youknoweventodaytheydonottreat himthesameastheydomybiologicalchildrenanditisevidenttothe child EmergingThemesRegardingLifeCarePlans Duringtheinterviews,eachparticipantwasgivenanexampleofalifecareplan andquestionedontheiropinionoftheuseduringtheadoptionprocess.When reviewingthedataitisevidentthatthethemesfellintotwocategories.Thefirst categoryisthethoughtsregardinglifecareplansapplicabilityandthesecondcategory isrecommendationsforthelifecareplan.Themesregardingtheguidance,and knowledgewereapparentinthefirstcategory.Thesecondcategoryincludesbroad themesofavailabilityofservices,aswellastransportation. Applicability Whenpresentedwithalifecareplansomeoftheparticipantsexpressedhow havingthistoolwouldhaveprovidedsomemuchneededguidanceregardingtheir childscare.Parentsoftentalkedaboutthefrustrationstheyexperiencedwhenlocating orknowingwhattypesofservicestoarrangefortheirchild,andfeltthatthisresource wouldhavealteredthatexperience.ThesecommentsbyP2showhowshefeelsalife careplanwouldprovidepotentialparentswithguidance.

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137 P2:Personally,Ithinkitsawonderfulyouknow,somethinglikethatwould havebeensohelpful.Because,Imean,wewerejustnoguidance whatsoever,nohelp,whatsoever.Withthefirstchildandallhisemotional problems,youknow,thatwouldhave,Ithink,curtailedalotofit,you know,justhavingthesestepstobefollowedbecausethingsgotsooutof controlwithhim. P1talksabouthowshehasbeenfeelingisolatedregardingherchildsissues withoutanyassistantonwhattodo.Thisparticipantexpressesthoughtsonhowthelife careplancouldprovidesomeclarityregardingthesituation. P1:Youknowwhenshegotdiagnosed,ADHD?I'mlikehowdoyougetany hopeforthischild?Ikeptsaying,Something'snotright.Findingoutthis wasgoingonwasonlythefirststep.Thenwehadtofindservicesandno onewastheretohelpusknowwhatwecoulddoorwhatshewouldneed. Soyes,definitely.Thiswouldbeawesome,itwouldreallyhelpguide someonetothetypesofservicesthechildwouldneed. Knowledge Thesecondareainwhichparentsfeltlifecareplanscouldassistisinproviding knowledge.Oneareaofknowledgethatthelifecareprovidesisthetimeframewhich serviceswouldbenecessaryforthechildaswellasaholisticviewofthedisability needs.Theparticipantsfeltthatprovidingguidelinesonwhenserviceswouldbe necessarywouldbeofgreathelp.Oneparticipantdiscussedhowhavingsomething likealifecareplanwouldhavepreventedthedelayindiagnosingtheirchild.Shenoted thatifherandherhusbandknewtohavetheirchildevaluatedbyapsychiatristfor behavioralissuesthenthefamilymaynothavegonesolongtryingtofigureoutwhere togetservices.Furthermore,theparentsnotethatthisinformationwouldalsoallow themtomonitortheservicesprovidedtothechild.Itwasexpressedthathavingalife careplanwouldprovidetheparentswithmoreautonomyandcontrolovertheirchilds care.

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138 Someoftheparticipantsdiscussedhowtheknowledgegainedfromthelifecare planwillhelpparentsunderstandthemagnitudeofthechildsneeds.Participantsfelt thatthisknowledgewouldhelpinacoupleofways.Firstitwouldallowforthepotential parentstogaininsightonthemagnitudeofcareregardingthechildsspecialneed.This knowledgewillthenallowforthepotentialparentstomakeamoreinformedchoice regardingtheirabilitytocareforthatchild.Thesecondareadiscussedbythe participantswastheabilitytoprovidepotentialparentswiththeunderstandingthat adoptingachildwithspecialneedswillrequirealongtermcommitment,whichis discussedbyP3. P3:Ithinkthis(lifecareplan)wouldhelpbecauseyouwouldseethatitwas lifelong,thatthistherapyisntgoingtotaketwoyearsanditsgonnabe overwith.Itsendingattheendofthatchildslife.Andthenforparents whodonthaveMedicaid,thefinancialendofittheyreallyneedtolookat also.Ijustfeelthatparentsreallyneedtoknow. P5talksabouthowthelifecareplanwillaidpeoplewithoutanymedicalbackground gainknowledgeonthedisabilityaswellastherelatedneeds. P5:Ithinkitiswonderfulidea,becausesomepeopledonthaveanyidea.Not everybodythatadoptsachildisthatawareofmedicalaspects.Ihavea daughterwhoisanoccupationaltherapistandason-in-lawwhoisa speechtherapist.FromthemIknewaboutMedicaidandIwaswellaware thatallofthosethingsarecoveredyouknowthingslikethat.SoIknewa lotofthestuffbecauseIwasexposedtoitandalotofpeoplearentand theyhavenocluewhattoexpect.Soforsomebodywhodonotknow, obviouslythiswouldgivethemsomepieceofmindregardingsomeofthe thingsthattheywouldworryaboutwhenadoptingthatchild. SimilartoP5scomment,P4alsonotesthatthelifecareplanwillhelpparentswithno medicalexperiencegainknowledgeregardingthetypesofservicesnecessary. Furthermore,shenotesthatthistypeofknowledgewillhavethepotentialtoempower parentsincontrollingtheirchildsmedicalcareespeciallyregardingthetypeand amountofservicesthatarerecommended.

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139 P4:Well,Ithinkitsgoodforpeoplethatarenotfamiliarwiththesystem becauseyoukindaknowwhentheevaluationsaresupposedtohappen, soiftheywerehappeningmorefrequentlyyoucouldsay,Whatsgoing on?Youknowwhenitends,21,whattoexpectasfarasfrequencyof services.Ibelievethatthiscouldreallyhelpparentswhodontunderstand disabilitygainsomeofthatknowledge. HereP2looksbackonherexperiencesofraisingachildwithspecialneedsandhow theknowledgegainedfromalifecareplanmayhaveimprovedtheoutcomeofher situation. P2:Butwiththeboy.hisneedsweresogreatthecounselingandthenall theexpensetherewas,ofcourse,waymorethanwehadeverexpected. Andifwehadreallyrealizedit.wecouldhavehadhimmaybeon Medicaidandunderprogramswherethegovernmentwouldhavehelped us.Butwehadnoideaandsoweweregraspingforstraws,ifwehada lifecareplanthen,wemightnothavegonethroughsomuchwithhim. Thefinalareaofknowledgewhichparticipantsfeltthelifecareplanprovided regardedavailableresources.P7talkedabouthoweveneducatedpeopledonot alwaysknowwhatresourcesareavailableforpeoplewithdisabilitiesandhowthisplan willassistparentsinidentifythetypesofresourcesobtainfortheirchild. P7:Peopleevenpeoplewhoareresourcedandmaybeeven,stilldontknow aboutthesekindsofthingsandinsomecasesmayknowaboutthem,but arenotsurewhathelptheycanprovidetheirchild.Forusitwasthe MedicaidWaiverprogram,wedidnotreallyknowaboutthisserviceand evenwhenitwasbroughttoourattentionwestatedthatarechilddidnot needit.Eventuallyisbroughttoourattentionthatwewerebeingselfish bynothelpingoursongetonthewaiverprogram,becauseasitwas explainedtoustheseserviceswillhelpafterwearenolongertocarefor him.SoIcanseewherethisplanwillhelppeopleunderstandwhat servicesareoutthere,aswellashowthatcanaidinthechildscare. Recommendations Whilereviewingthelifecareplansparticipantswerequestionedonwhat modificationtothemodelwouldimproveitsapplicabilitytotheadoptionsystem.Oneof therecommendationswastoconsidertheareaandavailabilityofservicesforthatarea.

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140 SpecificallyP3talksabouthowlivinginasmalltownmeansthatshehastogooutof towntofindthenecessarytreatmentforherchild.Shenotesthattravelingtoreceive thenecessaryserviceshasbeenamajorchallengeforherandwasnotsomethingthat enteredhermindpriortoadoptingthechild.Forthisparticipantshefelttheservice recommendationsaregreat,howeveritisimportanttounderstandthattheymightnot alwaysbereadilyavailabletotheadoptivefamily.Therefore,shefeelsthelifecareplan shouldincludeawarenessthatservicesmightnotalwaysbeavailableorwillrequire travelinginordertolocatethenecessarytreatment. Inrelationshiptotheavailabilityofservicesinthelocalarea,isthetransportation fortreatmentthatmightbenecessary.Thisparticipantnotesthatamountofmoneyand timethatgoesintotravelingtoreceiveservicesisnotsomethingthatsheconsidered whilepreparingtoadoptthechild.P3alsotalkedaboutshehashadtotraveltoreceive thenecessarytreatmentsforherchildandhowincludingtransportationconsiderations intheplanmightbeimportant.

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141 Table5-1.Themesregardingthestepsintheadoptionprocess ThemeDescription TPRhearingandtransferto adoption P3:AndsoitcameuptothetimewheretheTPRhearing wasthere.ParentsdidntshowfortheTPRhearing,soit wasTPRbydefault,hehadcalledmeMamafor2years. MeetingwithAdoptioncase manage P2:Westartedoutwithjustacontactingadoptionagencyat thattimetherewasnothinginourtownandwetoldthemour desiretoadoptachild.Anadoptioncasemangercontacted andweinitiatedtheprocess. AdoptionApplicationP9:Aftercontactingtheadoptionagencytheysentusjusta hugeapplication.Theyhadarequiredtimethattheywant youtohavebeenmarriedandwantedtoknowwhyIwanted toadoptandinourcaseitwasIcouldnothavechildren. CollectingreferencelettersP1:Theywantedletters,wehadtohave25to30letters fromanybodywhoknowasatacertainamountoftime. Coworkers,friends,family,neighbors,youknowavariety.I haveastackofthoselettersgivingwhyitwasokayforusto adopt SubmittingtoahomestudyP4:Completinganewhomestudybecausewedidthefoster carehomestudyandthenactuallynotanewone.Iguess theyhadtoupdateit.Buttheycametoourhomeandlooked sleepingarrangementandthesuitabilityofthehomefora child. Fingerprintingfor backgroundchecks P4:Andwehadtogetour18-year-oldfingerprintedcause hehadjustturned18.Hepreviouslywasntfingerprinted causehewasunder18andhadtogetour13-year-old fingerprintedforadoption TakingMAPPclassesP5:Wehadtoattendspecializedparentingclassesthat weredesignedtoprepareussomewhatforwhattoexpect. Regularvisitsbythecase worker P8:Afterthechildisplacedwithyou,youhavetogothrough asupervisoryperiod.Duringthis90dayperiodthecase workedcomesoutatleastonceamonthtocheckonthe statusofthings Meetingwithjudge/ finalization P3:Wewenttothehearing.Hewasbeingadopted,andso wewentinfrontofthejudgeandthejudgetalkedtohimand said,Thisisyourforevermamaandsaid,Thisisyour foreverchild,andweagreedandsignedthepapersandthe attorneyfiledthem.

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142 CHAPTER6 FOCUSGROUPRESULTS FocusGroupDemographics Theresearcherfacilitatedtwofocusgroups,eachcomprisedofsixcase managers.Thefirstfocusgroupincludedcasemanagerswhoworkedatalocalpublic adoptionfacility.Theyearsofexperienceinthefieldrangedfromthreetofiveyears withallofthecasemanagershavingpersonalexperienceinplacingchildrenwith specialneeds.Alloftheparticipantshadeducationalbackground,bachelordegrees, withinsocialserviceoreducationfields. Table6-1.Participantdemographicsforfocusgroup1 ParticipantGenderAgeYearsinadoption#ofSNadoptions CM1.1F355years12 CM1.2F243years5 CM1.3F274years8 CM1.4F325years9 CM1.5F304years10 CM1.6F293years6 Thesecondfocusgroupwascomprisedofsixadoptioncasemanagerswho workedatapublicadoptionfacility.Theparticipantswithinthisgroupalsohadpersonal experienceinplacingchildrenwithspecialneedsandtheyearsofexperienceinthe socialservicefieldrangedfromfourtosevenyears.Aswiththefirstfocusgroupallthe participantshadsimilareducationalbackgroundwithbachelordegreesinsocialservice oreducationfield. Table6-2.Participantdemographicsforfocusgroup2 ParticipantGenderAgeYearsinadoption#ofSNadoptions CM2.1F274years11 CM2.2F387years20 CM2.3F264years15 CM2.4F335years14 CM2.5F356years18 CM2.6F345years9

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143 OverviewofSignificantFindingsfromFocusGroup Twofocusgroupswithadoptioncasemanagerswereconducted.Theresearcher utilizedboththeaudioandvideorecordingstopreparetranscriptionsforanalysis.The transcriptswerereviewedandcodedusingconventionalcontentanalysis.Theprimary goalofconventionalcontentanalysisistodescribeaphenomenon,particularlywhen thereislimitedresearchorexistingtheoryavailable.Dataanalysisincludesfirst readingthroughthetranscriptsinordertoachieveimmersion.Next,theresearcher identifiedkeyconceptsorcodes.Thecodesarethengroupedintocategories,subcategories,andthethemeswithineacharea(Hseih&Shannon,2005).Theanalysis processresultsinanorganizedstructurethatexplainsthekeyconceptsofthe phenomenonbeingstudied(Figure6-1)fortheorganizationalstructureonspecial needsadoptions. Theanalysisofthefocusgroupsrevealedthreebroadcategoriesincluding perceptions,overviewofadoption,andlifecareplans.Thedifferentcategoriesare representedinthreedifferentboxesandarethetoplayeroftheorganizationalstructure. Thefirstcategoryrepresentedintheorganizationalstructureisperceptions.Forthis study,thecategoryofperceptionsisdefinedasthecasemanagersoverallviewsof adoptionofchildrenwithspecialneeds.Theirviewsencompassthefindingsfromthe casemanagersdiscussionsregardingtheirpersonalexperienceinplacingchildrenwith specialneeds. Undereachcategoryarethedifferentsubcategories,whichfurtherdefinesthe phenomena.Thesubcategorieswithinperceptionsarebarriers,characteristicsofthose whoadoptchildrenwithspecialneeds,andneedsoftheadoptionssystem.Thesubcategoryofbarriersdescribesthecasemanagersexperiencesinplacingchildrenwith

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144 specialneedsandthechallengestheyhavefacedindoingso.Thesecondsubcategoryincludesthemesrelatedtothecasemanagersopinionsonthosewhochoose toadoptchildrenwithspecialneeds.Thefinalsub-category,needsoftheadoption system,highlightsthecasemanagersperceptionsofstepsthatmayhelpincreasein therateofadoptionforchildrenwithspecialneeds.Allofthesethemesarediscussed inmoredetailwithinthischapter. Figure6-1.Organizationallayoutofcategories. Thesecondcategoryisoverviewofadoptionsystemandisdefinedasthe characteristicsofthesocialserviceagencywhichimpacteverydayadoptionpractices. Subcategoriesoftypesofadoptionsandmethodsofpreparingthechildandpotential

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145 parentforadoptionarewithinthiscategory.Thefirstsubcategoryoftypesofadoptions encompassesthreedifferentoptionsthatthecasemanagersconsiderwhenattempting toplaceachildwithspecialneeds.Thesecondsubcategoryisdefinedbythe techniquesandprocedureswhichthecasemanagerscompleteinordertoprepareboth thechildandpotentialparentforfinalization. Thethirdandfinalcategoryoftheorganizationalstructureislifecareplans.This categoryencompassesthecasemanagersdiscussionregardingthepotentialusesof lifecareplansduringtheadoptionprocess.Therewerethreesubcategoriesincluding, applicability,recommendations,andconcerns.Thesubcategoryofapplicabilityis definedbythemesregardingthewaysinwhichalifecareplanmaypotentiallybenefit theprocess.Thesecondsubcategoryincludesrecommendationsonhowtomodifythe lifecareplantoincreaseitsapplicabilitytotheadoptionprocess.Thenthefinal subcategoryincludesthediscussionsregardingsomeoftheconcernsthecase mangersexpressed.Allofthesearediscussedinfurtherdetailbelow. Thefinalcomponentoftheorganizationalstructureisthetwoarrowspointingfrom thecategoryoflifecareplanningtowardsthecategoriesofperceptionsandoverviewof adoption.Thesearrowsdepicttheinfluenceinwhichlifecareplanshaveonthe themeswithineachcategory.Theinfluencesoflifecareplansarediscussedinfurther detaillaterinthischapter. Perceptions:Barriers Theadoptioncasemanagersidentifiedanumberofissuesthatintheirexperience hasnegativelyimpactedtheplacementofachildwithspecialneeds.Theissues identifiedasbarrierswerebasedbothonthecharacteristicsofthepotentialparentas wellasthecasemanagersroleinplacement.Oneoftheprimaryissueswhichcase

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146 managerscitedasabarrierwaspotentialparentsconceptofdesiredcharacteristics theywerewillingtoconsiderwhenadoptingachild.Thefirstcharacteristicthatthe casemanagersnotedwastheageofthechild.Theoverallconsensusamongthecase managerswasthatparentsaremorewillingtoadoptayoungerchild,andoften specificallyrequestababy.Thiswasoneoftheconceptsdiscussedbythecase managersinthesecondfocusgroup. CM2.5:InmyexperienceIhavealwaysfounditaloteasiertoplacea youngchild,becauseeveryonewantsababy.Itisthemost commonrequestthatwegetattheagencywhenafamilyputsinan adoptionapplication. CM2.2:Iagreewiththat.Ithinkthatparentscomeinwantingtoadopta childthatappearstobefromtheirfamily.Sothefirsttheytendto beinterestedinistheageofchild.Parentstendtostatethatthey dontwantachildthatisoverayearortwoold. CM2.4:Yeahthathasbeenmyexperienceinmostsituationsaswell, howeverwhatIthinkisfunnyisthatbyadoptingayoungerchildthe familyhasnocluewhattypesofissuesthechildmightdisplayin thefuture. Thecasemanagersinthefirstfocusgroupalsodiscussedsimilarissueswiththeageof thechild.Thisparticipantalsopointsouthowasacasemanagerfinditeasiertolocate placementwhenthechildisyounger. CM1.4:Ummitisaloteasiertoplaceayoungchild.Everyonewantsa baby,andtheygenerallydonothavetheissuesthatanolderchild wouldhavebecausetheyhavenotbeeninthesystemaslong. Thereisabigdifference;itisalothardertoplaceanolderchildfor adoption.Ittakesaspecialsetofparentstobeabletodoit. Thesecondcharacteristicwhichthecasemanagersidentifiedwasspecificissues orneedsthatthechildmighthave.Thecasemanagerallagreedthatparents commonlyexpressthedesiretoadoptachildwithmildestissuespossible.Thecase managersdiscussedhowthisisextremelydifficulttoaccommodatebecausethe

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147 childrenawaitingadoptiontendhaveatleastsomelevelofemotionaltraumaintheir past.Theparentsdesirewastobeabletohaveachildthattheyfeltwouldmakethem proudandfitintotheirfamily.Thisisevidentinthefollowingdiscussionfromthefirst focusgroup. CM1.6:Ingeneralmostoftheparentswantmildbehaviors.Theywantas normalofakidastheycanget. CM1.2:Iagreeandinmyexperiencethetypeofcharacteristicsparents considertheywant.Umm,butingeneralmostoftheparentswant mildbehaviors.Theywantasnormalofakidastheycanget.We donthave,IdontthinkIhaveeverseenanyonecomeinandsayI wantthehardesttoplacekid.Butgenerallythelessproblems therearewiththechildtheeasiertheyaretoplace.Thereare moreparentsthatareavailableandwantthosekindsofchildren. Theattituderegardingminimalissuesinthechildwasdescribedbycasemanagersas anotherreasoninwhichpotentialparentsarenotwillingtoevenconsideradoptinga childwithspecialneeds,thusplacingahugebarriertofindingpermanency.Thisbarrier wasalsodiscussedinsecondfocusgroupaswell. CM2.5:Mostpeoplewhentheythinkaboutadoptingtheywantthechild thathasnoneeds,noproblems,theyjustwanttheperfectlittle childthatwouldhavebeenbornintotheirfamilyiftheyhadhadthe child.ThefirstbarrierthatIseeisgettingadoptiveparentstothink aboutadoptingaspecialneedschild. CM2.2:AhhsoIfindthatoneofthebarrierswithplacementisgivingthem theinformationthatthechildhasspecialneedstheyimmediately optout.Youmissoutonbeingabletogivethemsomemoreinsight intohowthechildwouldenhancetheirlifeandthosekindsofthings becausetheyimmediatelyturnoffanyideaofadoptingthatchild withcertainneeds. Inrelationshiptothechildhavingminimalissuesistheparentsconcernregarding thefinancialstrainthatwillaccompanyadoptingachildwhohasadisability.Thecase managersdiscussedtheirexperiencesinpresentingachildwithspecialneedstoa familyandoneofthefirstthingstheybringupistheamountofcosttheywillincurdue

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148 totreatments,medicalexpenses,aswellaswhattypesofmedicationandsuppliesthe childmightneed.Thecasemanagersnotethattheparentsoftenseeachildwhohasa disabilityasrequiringmoretime,attention,andmoneytocarefor.Onecasemanager discussedhowshehadafamilytellherthattheydidnothavethemoneyorabilityto raiseachildwhohadspecialneedsandtheywerenotinterestedingoingintodebtin ordertoadoptachild.Thishighlightsparentslackofeducationregardingchildrenwith disabilitiesandhowtheirassumptionsoftenpreventthemfromgraspingtherealityof thechild. Thefinalcharacteristicthatcasemanagerswitnessinpeopleseekingadoptionis thepotentialparentsdesiretoadoptachildwhohassimilarlooks,abilities,and interestsasthem.Thecasemanagersnotethatintheirexperienceparentswanta childthatmatchestheirhair,eye,andskincolorinordertomaintainsimilarities.Inthis discussionthecasemanagerstalkabouthowtheyhavewitnessedthesedesires. CM2.6:They(potentialparents)wantachildlikethemandsoIthinkthatis aanotherbarrierwhenyou'retalkingaboutachildwithadisability becauseifaparentislookingtoadoptachildlikethemtheydon't wanttofaceuptothatchildhavingadisabilityandthennotbeing abletoreachthepotentiallevelthattheythinktheyarecapableof. Theyviewitmaybeasafailure.Otherthanthechildbeinglike them,yougetallkindsofrequests.Yougetsomeandnottosay thateveryadoptiveparentouttherelookingtoadoptachildwithout anyspecialneedsbecausewedohavefamilythataregearedfor that.Ihavehadallsortsofrequestsfromdowntothecolorofeyes thecolorofhair,theheight,theweight,theage. Thiscommenthighlightshowparentsfeelsimilaritiesarenotjustthephysical characteristicsofthechild,butincludefunctionalaspectofthechildaswell. Anotherbarrierdescribedbycasemanagerswaspotentialparentslackof educationregardingspecialneeds.Thecasemanagersdiscussedabouthowpotential parentswhocometotheagencyseekingtoadoptachildoftendonothaveany

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149 understandingregardingchildrenwithspecialneeds.Theynotethatthepotential parentsdonothaveanyexperienceinchildrenwithspecialneeds.Thislackof experienceoftenleadstoignoranceandstereotypesonthepotentialparentspart,thus makingthemlesswillingtoevenconsiderachildwithspecialneeds.Onecase managerdiscussedhowacommonstereotypeshewitnessishowparentsfeelthatthe childwillnothaveafuturebecauseoftheyhavespecialneeds.Thecasemanger notesthatinherexperienceparentsbelievethatachildwithspecialneedswillnotbe abletosucceedatschool,andwillultimatelybedependentuponthem.Another examplewaswithchildrenwhohavebehavioralissuesandnotingthattheparentsare worriedabouthowthechildsbehaviorswillreflectonthem.Theexperienceofthis barrierisdisplayedinthefollowingcommentsbytheparticipants. CM1.3:Ummlackofeducationoftheparents,theadoptiveparents.But thenpriortoadoptionitcanbejustregularbehaviorsofthechildren relatedtobeinginfostercareorrelatedtoanykindoftraumathey mayhaveexperiencedandummgettingservicesforthosespecific behaviors.Itjustseemsthatparentslackofunderstanding regardingchildrenwithspecialneedsleadsthemtoover exaggeratetheimplicationsofthechildsneeds. Casemanagersalsotalkedabouthowthelackofknowledgeregardingspecialneeds lefttheparentsfeelinguncertainregardingthechildsfuture.Theynotethatthe uncertaintyofthechildsfutureoftenleavesparentsfeelingunpreparedtohandlethe childsneeds. CM1.5:Iagreethatlackofknowledgeisamajorissueandcreates obstacles.Parentsoftenwanttoknowwhatisgoingtohappenin thefuturewiththischild.Theywanttohaveknowledgeofifthis childisgoingtohavethisillnessorthisproblemandiftheyhada childoftheirowntheywouldnothaveknownthat.Sothattheyare askingquestionsthatwecannotanswerandtheywantsomesort ofguaranteethatwiththedisabilityortheissuesthatthechildhas thattheyarenotgoingtogetanyworse.Theywanttoknow,we wouldexceptthischildtodaythewayitisthewaythechildisbutif

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150 thechildisgoingtogetworseorproblemshappenthenwearenot surewearegoingtobeinterested. Thecasemanagersalsodescribedpersonalcharacteristicsthatpotentiallyimpact theadoptionprocess.Thecasemanagerspointoutthatpotentialparentsoftenhave veryspecificquestionsregardingthechildsneedsandfuture.Furthermore,thecase managersnotethattheyoftendonothavethebackgroundorknowledgetoanswerthe questionspotentialparentshaveregardingwhattoexpect.Therefore,thecase managerisnotabletoprovideessentialinsightinthechildsneedsleavingtheparents feelingveryuninformedandinsecureregardingtheresponsibilityofcaringforachild withspecialneeds.Thisissueispresentinthefollowingdiscussionfromthefirstfocus group. CM1.6:Potentialparentscominginwantingtoknowalotofinformation aboutthechildandwhatneedstheyhave.Parentsalwayswantto knowhowthechildsneedswillchangeovertimeandwhatcaring forthechildwilllookliketenyearsdowntheroad.Thisisnot informationthatwehaveandIoftenfinditdifficulttoprovide answerstotheparentswhenImyselfdonotknowthem.Itisoften frustratingbecausewedonotalwayshavetheknowledgeofwhat thechildwillneed. CM1.1:Thatisgoodpoint,becausewegenerallydonothaveanyspecific trainingoreducationinthedisabilitiesthatchildshave.Theonly knowledgethatwehaveiscommonlyfromthepersonalhandson experiencethatwehaveobtainedfromworkingwithkids.This experiencesdoesnotprovideuswithanswerstoalotofthe parentsareasking.AndIknowmyeducationbackgroundisin socialservicesandthatiscommonforpeopleinthisfield,sowe justdontknowanddonothavetheinformationaboutthechilds needs. Perceptions:parentswhoadoptchildrenwithspecialneeds Incontrasttothebarriersthatcasemanagersidentifiedintheadoptionprocess,is thedescriptionofparentswhotheyfeelaremorelikelytoconsideradoptingachildwith specialneeds.Theoverallconsensusamongcasemanagerswerepeoplewithmedical

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151 backgroundsaremorelikelytoadoptachildwhohasspecialneeds.Theynotedthatin theirexperiencesthosewhohadknowledgeofdisabilityandthedisabilityrelatedneeds appearmoreacceptingwhenachildwithspecialneedswaspresentedtothem.The casemanagersdiscusshowthemedicalexperienceappearstohelptheparentsfeel moreconfidentandcapableofhandlingtheemergenciesthatmayarise.Furthermore, thecasemanagernotesthatsincetheseparentshavetrainingwithdisabilitiesand illnesstheytendtonotoverexaggeratethechildsneeds.Plustheseparentswillhave arealisticunderstandofwhatservicesandcarethechildwillrequireovertime.The discussionofcasemanagersexperienceisevidentinthefollowingdiscussion. CM1.3:Ummthereisalwaysonefosterhomeoroneadoptivehomewhois gearedtohandleanyemergency.AndIhaveapersonwhose houseissetupalmostlikeaminiclinicwhereshecandealwith that.Iplacedchildreninadoptivehomeswhohavemedical backgroundslikeaRNamedicaldoctorandthosekindsofthings. Theyaretheonesthatarenotafraid,theyhavesometraining. CM1.2:YeahIhaveseenthataswell.Peoplewithmedicalbackgrounds aremorewillingtheydonthavethatsenseoffearthatothershave. Theyfeelliketheyhavealittlebitofknowledgeindealingwith medicalemergencies.Someparentscangototallybazookawhen theirchildgetsinjuredandIthinksometimesjusthavingthat knowledgegivethemamorecalmingeffectastohowtheycan dealwithaemergencyandtheyarenotsofrightened. Thecasemanagersnotedthattheyoftenfeelmorecomfortableinpresentingachild withspecialneedstopeoplewhohavefosterchildren,parentingexperience,ormedical background.Theparticipantsexplainthatfirsttheyknowaparentwhohasamedical backgroundorparentingexperiencewilltendtobemoreopenmindedregardingthe potentialofadoptingachildwithspecialneeds.Thesecondreasonwasthatthey believeitdoestakesomemedicalorparentingexperienceinordertoknowhowto

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152 handleissuesthatmayarisewithachildwhohasspecialneeds.Thisconceptis evidentinthefollowingstatement. CM2.6:Whenwearetryingtoplaceachild,likemaybeanolderchildwho hassomekindofspecialneedssomekindofissuesordiagnosis, weusuallylookatexperiencedparents.Eitherpeoplewhohave beenfosterparentsforalongtime,orhaveraisedtheirown childrensuccessfully,eitherthatorparentswhohaveummsome kindofexperiencewithchildrenwhethertheymaybeareatherapist themselves,ortheyworkintensivelywithchildrenalot.Wewould lookforsomeonewhohasmoreexperiencetohandlethosekinds ofkids.Puttingaspecialneedschildinahomewheretheydont haveanyexperienceisjustaskingforproblemsandsointhose caseswegivethemasmanyservicesaswecanandhopethatit worksout. Perception:needs Whilethecasemanagersdiscussedthechallengestheyhavefacedwhenplacing childrenwithspecialneeds,theyalsoidentifiedwhattheyfeltwouldhelpimprove placement.First,casemanagerstalkedabouttheneedforadditionaleducation. Specifically,thecasemanagersfelteducationsshouldaddressgeneralinformationon whataspecialneedschildisandsomeofthecommontypesofdisabilities.The followingdiscussionbetweencasemanagershighlightstheiropinionsontheneedfor additionaleducation. CM2.3Ithinkoneofthebiggestthingsiseducationoftheparents. Parentsoftenmisunderstandtheneedsofthechildand automaticallyassumeitwillbeadditionalwork,thereforepreventing adoptionofachildwithspecialneeds CM2.1Ummwejustneedtokeepeducatingpeople.Weneedtoletthem knowthattheissuesthatarethere. Thesecondareaidentifiedasaneedbythecasemanagersforparentstomore openmindedregardingthechildrenavailableforadoptionfromthefostercaresystem. Theyexplainedathowparentscomeintotheirofficewitharigidandsetnotionofwhat

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153 typeofchildisavailableforadoptionaswellaswhattheyarelookingfor.Onecase managernotedthatitwasalmostliketheparentswhereshoppingforachildand wantedtopickoutthebestone.Thisexperiencewithparentsleftthecasemanagers feelingextremelyfrustrated.Forthisreasontheyfeelthatparentsshouldenterinto adoptionwithanopenmindandnopreconceivedassumptionsregardingwhattypeof childtheyareinterestedinadoption.Furthermore,thecasemanagersnotethatpartof theirfrustrationisrelatedtothefactthatparentsoftenoverlookreallygreatchildren becauseoftheirclosemindedapproachtoadoption.Thisthemeisevidentinthe followingdiscussionfromfocusgroup1. CM1.6:Ireallyfeelthatparentscomeintotheagencywithunreal expectationsofwhatwehavetoofferthem.Theyareoftenso stuckonwhattheywantandnotwhatisinthebestinterestofsome ofthekids.Itreallyfrustratesmetoseethishappeningtimeand timeagain. Overviewofadoption:typesofplacements Whenthecasemanagertalkedabouttheadoptionprocessacoupleofdifferent methodsofadoptionswereidentified.Thefirstmethoddiscussedistohaveafamily memberofthechildtoadoptthem.Accordingtothecasemanagersthisformof adoptioniscalledkinshipadoption.Alloftheparticipantsagreedthatkinshipadoption istheirfirstavenuewhenpossible.Thecasemanagersdescribedsearchingforfamily memberswhoareavailableandwillingtoadoptthechildoncetheirbiologicalparents rightshavebeenterminated.Theconsensusamongthecasemanagersisthatthisis oftenthebestrouteforthechildandresultsintheeasiest,mostsuccessfulplacement forthechild.Thecasemanagersfeltthatrelativesareoftenwillingandbettersuitedto takethechildbecausetheyhaveanunderstandingofthechildsneedsandwillbemore preparedtohandlewhateverissuesmight.

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154 Thecasemanagerswentontodescribethatwhenafamilymemberisnot availabletoadoptthechildtheygotothesecondoption.Formostofthecase managersthesecondoptionisapproachingthefosterparentanddiscussingwhether theywouldbeinterestedinadoptingthechild.Iftheparentisinterestthentheprocess forafosteradoptionisinitiated.Accordingtothecasemanagersafosteradoptionis wherethecertifiedfosterparents,whichareshelteringthechild,choosetolegallyadopt thatchild.Similartothecasemanagersdiscussionregardingrelativeadoption,they alsofeelthatfosteradoptionisgoodchoiceforthechild.Thecasemanagersnoted thatintheirexperiencethosewhohasfosteredthechildandthenchoosetoadoptare morelikelytohavealreadybondedwiththechild,whichresultsinfewerissuesof attachmentdisorderandbehavioraldiscord.Furthermore,thecasemanagersnotethat thefosterparenthasbeencaringforthechildandthereforeunderstandsthechild personalityaswellasthemagnitudeoftheirneeds.Thecasemanagersfeltthatthis uniqueunderstandingofthechildaidedintheadoptionprocess.Thisthemeisevident inthefollowingdiscussionfromfocusgrouptwo. CM2.4:Ialwaysthinkthatanimportantstepinchoosingwheretoplacethe childforadoptionistoapproachthefosterparentswhohavethe child.Dependingupontheamountoftimetheymaybewillingand wanttoadoptthechild.Ihaveevenhadfosterparentswhowere waitingandfollowingtheTPRhearingjustsotheycouldadoptthe child. CM2.6:Yeahthefosterparentsareoftenagoodallyforustoturntowhen consideringadoptiveplacement.Itseemsthattheyalreadyhave anunderstandingofthechildandthatwouldhelpthemin incorporatingthechildintotheirfamily. Thefinalmethodofadoptiveplacementforthechildwhichthecasemanagers discussedwasasearchthroughtheadoptionagency.Thecasemanagersnotesthatin theirexperiencethatchildrenwithspecialneedsoftenendupbeingplacedin

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155 nonrelativeadoptionifplacedatall.Thecasemanagersdescribedhowthisform adoptionplacestheresponsibilityofmatchingthechildsneedswithapotentialfamily oncaseworker.Furthermore,theynotethatthisformofadoptiontakestolongestfor finalizationtooccurduetothedifficultiesoflocatingafamilythatiswillingtoadoptthe child.Thecasemanagersexpressedfrustrationinrelationshiptolocatingfamiliesthat wanttoadoptspecialneedschildren.Theyalsonotethatintheirexperiencethese childrenoftengothroughnumerousattemptstobeplacedwithafamily,howeverthey oftenfail.Failureoftheadoptionplacementonlyincreasestheissuestheywitnessin thechildren. Overviewofadoption:preparationforadoption Thecasemanagersdescribetheservicesthatareprovidedtopotentialparentsas wellasthechildinordertoprepareforadoption.First,theydescribetheeducationthat potentialparentsreceivefromtheadoptionagency.Eachparentmustsuccessfully completeanextensiveparentingclasstolearnwhattoexpectwhencaringforthechild. Moreover,theparentwillbeprovidedwithanyspecialtrainingthatwillbetterprepare themtocareforthechildsspecialneeds.Theexampleofachildwithdiabeteswas provided.Onecasemanagerreportsthatinthepastshehashadnursesmeetwiththe parentsinordertoprovidetrainingonhowtohandletheirmedicalissues.Thefinal thingthatthecasemanagersdescribedwasprovidinginformationaboutthechild.This informationincludespastmedicalhistory,anybehavioralissuesthatthechildhas shown,andwaystohelpthepotentialparentsprepareforthechild. Thechildalsoreceivesinformationandsupportduringthepreparationphase.The casemangersexpressthatitisveryimportanttoencouragethechildtoexpresstheir feelingsregardingadoption.Onecasemangerdescribedhavingthechildkeepa

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156 journaloftheirthoughtsandfeelings.Moreover,thecasemanagersnotethatitis importanttositdownwiththechildandlistentotheirconcerns.Theyfeelitis necessarytoaskopenendedquestionthatallowthechildtothinkaboutsituationand thenrespondintheirownwords.Thefinalthingdiscussedinpreparingthechildis givingtheminformationontheadoptionprocessanddynamics.Thisisoftendoneby givingthechildinformationoncharacteristicsofthepotentialfamily,aswellasbookson whatadoptionislike. Lifecareplans Thelastcategoryidentifiedfromthefocusgroupswasperceptionsontheuseof lifecareplansduringtheadoptionprocess.Eachparticipantofthefocusgroupwas providedacopyofthesamplelifecareplanandaskedtodiscusstheiropinionsonits usewithspecialneedsadoptions.Thesubcategoriestoemergewereapplicability, recommendations,andconcerns.Thethemeswithineachsubcategoryareexplored below. Lifecareplans:applicability Thefocusgroupleaderdiscussedwhatthelifecareplanwasandthenquestioned thecasemanagersregardingtheiropinionsonitsuseintheadoptionsystem.The overallresponsetothiswaspositiveandcasemanagersidentifiedhowtheyfeltitwould aidtheadoptionprocess.Thefirstareawherecasemanagersdescribedtheuseoflife careplansisinprovidingparentswithamorerealisticunderstandingofthechilds needs.Thecasemanagerexpressedthatoneofthethingsthattheyoftenwitnessis parentsbeingfearfulofthechildsfutureandwhatitmaylooklike.Theyfeltthatthelife careplanwouldshowparentsthatthechilddoeshaveafutureandeliminatesomeof

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157 thoseunnecessaryfears.Thefollowingstatementdescribesthisopiniononthelife careplan. CM2.1:Ithinkthisgreat,youknowsomanyparentsthinkofallthethings thatcouldgowronginthechildsfutureandIoftenthinktheyover exaggeratethissituation.Thiswouldprovidetheparentswith somethingtolookat,takehomewiththem,andthinkon. Nextthecasemanagersfeltalifecareplanwouldassisttheprocessinhelping parentsunderstandtherealisticfinancialramificationsofraisingthechild.Thecase managersexpressedthattheplanbeingbasedonwhatMedicaidwouldpayforwillhelp theparentsgainanunderstandingofhowthechildsinsurancewillabsorbandoffset mostofthefinancialstrain.Thiswouldeliminateparentsforoverestimatingtheamount offinancialburdentheywillassumeiftheyweretoadoptthischild. Thefinalareainwhichthecasemanagersfeltthatlifecareplanswouldbe beneficialisaidingtheminansweringparentsquestions.Thecasemanagers reiteratedthattheydonothaveexperience,training,orknowledgeofdisabilities,which ledthemtobeingunabletoprovidetheparentswithalotofinformationonwhatto expectinthechildsfuture.Asoneofthecasemanagerspointedout,theparentshad questionsthatshewasjustunabletoprovideanswerto. CM1.2:Ifeelthattheuseofalifecareplanwouldhelpmeoutalot.Iwas trainedinsocialwork,butnowhereinthatdidwelearnabout disabilityordevelopmentalissuesinchildren.Parentswant answerstotheirquestionsandsomeguaranteethatweknowwhat thechildsfuturewilllooklike.Alifecareplanwillprovideuswith theopportunitytogiveparentsthesequestionsandindoingdo theymaybemorewillingtoadoptachildwithspecialneeds. Lifecareplan:recommendations Duringthediscussionoftheuseoflifecareplans,thecasemanagersidentifieda coupleofareaswhichtheyfeltwouldbeimportanttoincludeinalifecareplan.The

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158 firstthingbroughtupbythecasemanagerswastohavetheplanincludeadoption specificissues.Acoupleofthecasemanagerspointedoutthatoneoftheseissues wouldbethetreatmentforattachmentdisorder.Thecasemanagersexplainedthatin theirexperiencealargenumberofthechildrenexperienceattachmentdifficultieswhich ultimatelyrequirescounseling.Thecasemanagersdiscussedhowtheyhave attemptedtolocateappropriatecounselingservices,buthaveconfronteddifficultiesin doingso. Thesecondrecommendationdiscussedbythecasemanagerswastheinclusion oftheadoptionstipendwithinthelifecareplan.Casemanagersfeltthiswouldhelpina coupleofways.Firstitwouldagaindisplayhowtooffsetsomeofthefinancialstrain associatedwithaspecialneedschild.Thiswouldhelptheparentsunderstandnotonly isthereinsurancetopayforthemedicalneeds(Medicaid),butanadditionalstipend thatcanbeusedtopurchasesuppliesandequipment.Thesecondreasonthecase managersfeltthiswasimportant,wastoeducateparentsonthefactthatanadoption stipendisavailable.Thecasemanagersstatedthatintheirexperienceparentswho entertheadoptionagencylookingforachildareoftenunawareofthefinancial incentivesinvolvedintheprocess.Thiswouldhelpthemunderstandtheimpactthatthe stipendmoneywouldmakeontheirabilitytoraiseachild.

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159 CHAPTER7 DISCUSSION ChapterPreface Thepurposeofthisstudywastoidentifythecurrentchallengesassociatedwith specialneedsadoptionsandtheapplicabilityoflifecareplanstoaddresstheseissues. Thestudyinvolvedacquiringandanalyzingqualitativefeedbackfromadoptioncase managersandadoptiveparentsregardingtheirperceptionsoftheadoptionprocessas wellasunderstandingandapplicabilityoflifecareplanning.Thischapterisseparated intofoursections,discussingthefindingsfromthepreviouschapter.Thefirstsection includesaninterpretationofthefindingsfromtheindividualinterviewsandfocus groups.Thesecondsectiondepictsadiscussionregardingthelimitationsofthese studies.Thethirdsectionillustratestheimplicationsofthefindingsforclinicalpractice, theory,andfutureresearch.Thefinalsectionconcludesthefindingsofthecurrent study. OverviewofSignificantFindings QualitativeInterviews Qualitativeinterviewswereconductedtoobtaintheperspectivefromadoptive parentsontheexperienceduringtheadoptionprocessaswellastheuselifecareplans inadoption.UtilizingtheconstantcomparativemethoddescribedbyCorbinandStrauss (1990),theresearchercodedanumberthemesrelatedtotheadoptionexperience.The themeswereutilizedtodevelopthetheoreticalframework,ecologicalperspectiveof adoptionexperience.Theecologicalperspectiveorganizesthemeswithinfoursystem levelsoftheenvironment.Atthecenterofthemodelistheadoptiveparentwiththe

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160 micro,meso,exo,andmacrosystemexpandingoutward.Thediscussionofeach systemandtheimpactithasonthedevelopingpersonisincludedinthischapter. Microsystem:PersonalConstruct Themicrosystemdescribestheindividualsimmediateenvironmentinwhichthey interactwith.Thecharacteristicsmostimportanttothedevelopingperson(adoptive parent)arelocatedwithinthissystem.Furthermore,thissystemisclosesttothe developingpersonbecauseithasthegreatestimpactonthepersonsbehaviors.For thisstudythepersonalconstructdescribedtheparentsmicrosystemandincludes themesofdecisionmakingandemotions. Decisionmaking Thefirstthemeisthedescriptionofthedecisionmakingprocessfortheparents. Thisdescriptionrevealedtwocharacteristics,whichimpactedapersonsdecisionto adoptachildwithspecialneeds.Thesecharacteristicsareknowledgeofdisabilityand desiretohavealargefamily.Participantsdescribedknowledgeofdisabilityasan extremelyimportantfactorintheirdecisionstoadoptachildwithspecialneeds.The parentsexpressedthattheyhadexperienceinworkingwithdisabilityandthatthis knowledgeledtothemtofeelmorecomfortableintheirabilitiestoappropriatelyhandle thechildsneeds.Thereislimitedliteratureregardingthespecificimpactof medical/socialserviceexperienceonpersonsreadinesstoadopt.However,thereis literatureregardingtheimpactofbeingpreparedforwhattoexpectwhenadoptinga childwithspecialneeds. Severalstudieshavefoundacorrelationbetweenparentsperceivedlevelof preparationandsuccessfuloutcomesofadoptiveplacement(Unger,Deiner,&Wilson, 1988;Berry,1990;Sturgess,Selwyn,2007).Specifically,oneofthestudiesexamines

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161 factorswhichaidedinparentsfeelingpreparedwhenconsideringadoptingachildwith specialneeds.Thisstudyrevealedthatparentswhoreportedfeelingverypreparedhad adequatetrainingandinformationregardingwhattoexpectwiththechild(Egbert& Lamont,2004).Theliteraturesupportsthepositiveimpactofpreparationwhenentering intospecialneedsadoptions.Parentswithprofessionalexperiencehaveaunique understandingofthechildsneedsaswellasthelongtermimpactonthefamily, thereforemakingthemmorelikelytosuccessfullyadoptachildwithspecialneeds. Whileresearchsupportspreparationinspecialneedsadoptions,thereisno researchspecificallyfocusingontheimpactofprofessionalexperienceinthe medical/socialservicesfieldonthedecisiontoadoptachildwithspecialneeds. Therefore,furtherresearchneedstobeconductedinordertofurtherunderstandthe characteristicsofparentswhodecidetoadoptachildwithspecialneeds.Specifically, researchshouldexaminetheimpactofprofessionalexperience.Thecharacteristics identifiedbytheresearchwillthenencouragerecruitmentofparentswhoareopento specialneedsadoptionsaswellasshedlightonmethodstomitigatetheconcernsother potentialparentsmayhave. Whilethereisnopublishedworkonthetopic,thecharacteristicofmedical/social serviceexperiencepositivelyimpactingdecisiontoadopthasbeenreplicatedinthepilot researchaswellasfocusgroupswithcasemanagersinthisstudy.Asdiscussedin Chapter2,researchwithadoptioncasemanagerswasperformed.Thecasemanagers inthisstudydiscussedthatintheirexperiencepeoplewithmedicalexperiencetendto bemorewillingtoadoptachildwithspecialneeds.Furthermore,theresultsfromthe focusgroupswithcasemanagersinthisstudyalsorevealedsimilarfindingswiththe

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162 casemanagersnotingthatmedicalexperiencealleviatessomeofthecommonbarriers theyhavewitnessed.Thesefindingssupporttheneedforfurtherresearchintothe impactthatmedicalexperiencehasonwillingnesstoadoptachildwithspecialneeds. Iffurtherresearchsupportsthisfinding,thenadoptioncasemanagersshoulddevelop strategiestorecruitpeoplewithmedicalandsocialservicesexperiencetoconsider adoptingchildrenwithspecialneeds. Anotherfactorthatparentsfeltimpactedtheirdecisiontoadoptachildwasthe participantsdesiretohavealargefamily.Aconsensusamongtheparticipantswasthe importanceoffamilyandhowtheyenjoyedhavingchildrenaroundthem.Thestatistics onwhochoosestoadoptsupportashiftinfamilieswhoconsideradoptionfrom primarilyinfertilecouplestonowincludinglargerfamilies.Approximatelythirtyyears agothosewhosoughtadoptionwerecoupleswhowereunabletohavebiological childrenandwereforcedtoturntoadoptionasamethodofcreatingtheirfamily (Gilman,2001).Theshiftinthecharacteristicsofadoptionsrevealsthatbothcouples andsingleparentsnowutilizeadoptionasmethodofaddingtotheirbiologicalfamily (ChildWelfareGateway,2010).Thestatisticssupportthefindingsfromthisstudy, becausesevenofthenineparticipantsinterviewedhadbiologicalchildrenpriorto choosingadoption. Anotherstrongfactorwhichimpactedtheparticipantsdesiretoadopt,wastheir perceivedabilitytomotherthesekidsandultimatelyhelpthechildachievepermanency. Someresearchregardingchildrenwithspecialneedsdoesshowthatpeoplesometimes choosetoadoptinordertopreventthechildfromlanguishinginfostercare(Schwartz, 2008).Thisarticleexaminessomeofthefactorsassociatedwithpeoplewhochoseto

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163 adoptchildren.Oneoftheprimaryfactorswasparentschoosingtoadoptinorder rescuethechildfromlongtermfostercare.Thisfindingsupportstheparticipants desiretohelpasmanychildrenaspossibleandshowsanaltruisticaspectinspecial needsadoptions. Thefinalaspectregardingthedesireforfamilyisthesocialconceptofmotherhood andfamily.Theparticipantsalldescribedparentingasanimportantrolewhichtheyfelt theymustfulfill.Thisdesirewasoneoftheimportantfactorsintheparticipants decisiontoadopt.Theliteratureonadoptiondoesreferencethesocialrolesof parentingasimportantmotivatorsinpeoplesdecisiontoformafamilyathrough adoption(Adamec&Miller,2007).Thesocialconceptoffamilyandthepressurein whichpeoplefeeltohaveafamilyorbegoodparentsdoesinfluenceapersons decisions(Schwartz,2008).Whiletheresearchpopulationthisinformationisbasedon doesnotmatchthecurrentsample,itdoeshighlighthowtheroleofparenthoodisan importantaspectofdecision-makingprocess.Theunderstandingofthesocialdesires andpressureswillhelpadoptioncasemanagersassistparentsinnavigatingthrough theadoptionprocessanddeterminingifadoptachildwithspecialneedsistrulyrightfor them. Avaluablefindingfromthestudywasthedecision-makingstepsthatwere importanttoeachfamilyinreachingthedecisiontoadoptthechild.Thisprocesswas individualizedforeachfamilybutincludedcommunicationwithpartner,gathering educationalinformation,andturningtoreligiousfaithforguidance.Firstofall, communicationandagreementbetweenthecouplewasanessentialaspectwhen decidingtoadoptachild.Theconsensusoftheliteraturesupportsthatcommunication

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164 regardingdesireswasanimportantpredictoronthesuccessofanadoptionplacement (Schwartz,2008;Egbert&Lamont,2004).ThearticlebySchwartzhighlightsthe importanceofcommunicationamongpartnersontheirdesiresregardingadoption.The authorreportedthatifpartnersfailtocommunicateorareunabletoreachanagreement thenthesuccessoftheadoptionwillbeinjeopardy(Schwartz,2008).Furthermore, Egbertandcolleaguesexaminedfactorsthatpredictedafamilyspreparednesswhen enteringadoption.Theyfoundthatcommunicationwasanimportantfactorin determininghowpreparedthefamilywas(Egbert&Lamont,2004).Withresearch supportingtheimportanceofcommunicationamongstpartners,itwillbeimperativefor theadoptioncasemanagertoassessthefamilyslevelcommitment,thecoupleslevel ofagreement,aswellasprovideopportunityforopencommunicationduringthepreadoptivephase. Animportantaspectofthedecisionmakingprocessforparentswastheirfaith. Theparentsdiscussedturningdecisionsregardingwhatwasbestforthefamilyoverto theirfaithsystem.Furthermorewhenmakingadecisionregardingtoadopt,parents wouldconsultreligiousleadersforguidance.Researchshowsthatfaithplaysan integralroleinnumerouslifedecisionsandthechoicetoadoptisnodifferent(Patel, Williams,&Marsh2004;Egbert&Lamont,2004).Theliteratureshowstheparentswill commonlyresorttoreligiousguidancewhentraversingtheadoptionlandscape.Thisis especiallytrueastheyfacechallengesorareforcedtomakedifficultdecisions. AccordingtoPatelandcolleagues(2004),thesuccessfullyincorporationofreligious beliefsduringtheadoptionprocesswasanimportantpredictorintheoverallsuccessof theplacement.Basedontheliteraturetheuseoffaithisanimportantaspectofthe

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165 adoptionprocess(Patel,Williams,&Marsh,2004;Egbert&Lamont;Adamec,2005). Thesefindingshighlighttheneedforadoptioncasemanagerstobesensitiveto peoplesfaithandprovideanopportunityforcontinuedexploration. Mesosystem:Interactionalconstruct Themesosystemisthesecondleveloftheenvironmentexpandedoutwardfrom thedevelopingperson.Thisenvironmentdescribestheinteractionsofmultiple microsystems.Theapplicablemicrosystemswhenexaminingadoptionaretheadoptive family,socialserviceagency,andthelegalsystem.Thetwothemesprominentas parentsdescribedtheirinteractionswiththesemicrosystemsareperceptionsand process. Perceptions Thethemeofperceptionsencompassestheparentsdescriptionoftheirfeelings throughouttheadoptionprocess.Oneoftheprominentfeelingswasfrustration.The parentsexpressedfrustrationinrelationshiptothelackofinformationprovidedatthe timeofadoptionaswellaslackofpostadoptionservices.Aconsensusamongthe participantswasthattherewasalackofinformationprovidedatthetimeconsidering adoption.Theparentsexpressedthatcasemanagerswereoftenunabletoanswer theirquestionsorprovidebackgroundinformationonthechild.Theconsensusamong theresearchrevealsthatlimitedinformationisacommonandmajorproblemwithinthe adoptionsystem(Barth,Berry,Goodfield,&Carson,1986;Groze,Young&CorcranRumppe,1991).Specifically,onestudyfoundthat58%oftheirsamplereportednot receivingenoughinformationregardingthechildsneed.Thisstudycitedthelackof informationasamajorbarriertotheadoptionprocess(Reilly&Platz,2003).The

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166 findingsalongwiththeliteraturesupporttheneedforbettermethodsoftransmitting informationtothepotentialparents. Process Thesecondprominentthemewithinthemesosystemistheprocess.Thethemeof processdescribestheparticipantsexperienceswhilecompletingthestepsrequiredin finalizingadoption.Twoareaswereprominentintheparticipantsinteractionsand thesewerelackofinteragencycommunicationandlackofpostadoptionsupport. Thelackofinteragencycommunicationwasalsocitedassourceoffrustrationwith thefostercaresystem.Theparentsdiscussedhowthereisamajordisconnectwhena childscaseistransferredfromthefostercareworkertotheadoptioncasemanager. Multipleparentsexperiencedfrustrationwithmissinginformationorhavingtoredo paperwork,duetothechangesincaseplangoals.Forexample,asoneparticipant pointedout,theentirefamilyhadtoarrangetakingmoretimeoutoftheirschedulesto gothroughthefrustrationsofgettingfingerprintedandsubmittingtoyetanotherhome study.Theparentsexpressedthatthesethingshadalreadybeencompletedfora fostercarefileandfeltitwasunnecessarytohavetowaitforthemtoberesubmitted withadoptioninthetitleratherthanfostering.Furthermore,theparentsnotedthatthis wasoneofthefactorsthathelduptheadoptionprocessandforcedthemtowaitlonger forthefinalization.Theissueofcommunicationbetweenagencieswasidentifiedasan obstacleinyouthfindingadoptiveplacementafterterminationofparentalrights(TPR). Theresearchersofthisstudystressedtheneedforcontinuityincarebetweenfoster careworkerandtheadoptioncasemanagement(Cushing&Greenblatt,2009).Further researchisnecessarytoexaminetheimpactofinteragencycommunicationonthe

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167 adoptionexperience.Ifresearchcontinuestosupportthenegativeimpactof communication,thanclinicalpracticeneedstoexploreoptionstoalleviatethisbarrier. Exosystem:SystemConstruct Theexosystemencompassesthemesrelatedtheparentsexperienceswiththe socialservicesystem.Theparentsdescribedthemesspecificallyrelatedthefostercare andadoptionssystems.Thesedescriptionswereevidentinthedataanalysisaswellas howtheyshapedtheparticipantsadoptionexperience. FosterCareSystem Theparentscommonlydiscussedtherolethefostercaresystemplayedintheir adoptionexperience.Fostercarewasdescribedasbothachallengingaswellasa positiveexperiencethatimpactedthedecisiontoadopt.Firstofall,theparents expressedtheirfostercareexperiencewasoftenchallengingandledtotensionwithin thefamilyaswellastensiondirectedtowardsthesystemitself.Thetensionwasrelated totheamountoftimethesystemwouldattempttoreunifythechild.Theparentswho adoptedtheirchildfromthefostercaresystemexplainedhowthebiologicalparents wereallowedtoremaininthechildslifeforanextendedperiodoftime,whileattempts toreunifythechildwerecontinuallymadebythecaseworkersandjudge.Limited researchhasbeenconductedontheimpactofbiologicalparentslingeringinthechilds lifeforanextendedperiodoftime.Regardlessofthelimitedresearch,itisclearthat uncertaintyandinstabilityinachildslifenegativelyimpactshisorheremotional wellbeing(Bruhn,2003;Rubin,OReilly,Luan,&Lacalio,2007). Theparticipantsexpressedthattheattemptstoreunifythechildwiththeir biologicalparentswentonforupwardstotwoandhalfyearsandbecameextremely frustratingastheywatchedthechildcontinuetobeletdownandhurtemotionally

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168 throughoutthisprocess.Furthermore,theseactionsbythefostercaresystemdelayed thefamiliesabilitytolegallyadoptthechildandofficiallybecomeafamily.Theimpact ofdelayingpermanencyhasbeencitedfrequentlyintheliteratureasamajorchallenge withinthefostercaresystem(Bruhn,2003;Rubin,OReilly,Luan,&Lacalio,2007; Lawence,Carlson,&Egeland,2006;Vinnerljung,Hjern,&Lindblad,2006).When permanencyisdelayedthechildismorelikelytobediagnosedwithattachment disorder,psychologicaldisorders,aswellashealthrelatedproblemsduetotheamount ofstressandtensionwithintheirlife(Bruhn,2003;Rubin,OReilly,Luan,&Lacalio, 2007;Lawence,Carlson,&Egeland,2006;Vinnerljung,Hjern,&Lindblad,2006). Inresponsetothenegativeimpactofdelayingpermanencythefederal governmentenactedtheAdoptionandSafeFamiliesActinordertopromoteamore rapidplacementofthechild.AsdiscussedinChapter2,theprimarygoalofASFAwas toacceleratethepermanentplacementofchildrenthroughimplementationofshorter timelimitsformakingpermanencydecisions.Theprovisiontoacceleratepermanent placementmeansthatstatesmustinitiatecourtproceedingtofreeachildforadoption nolaterthanfifteenmonthsaftertheremovalfromtheirparents(Moe,2005).Todate thereislittledataavailableontheimpactofASFA;howevertheinformationthatis availabledisplayslittlechangeinthetimeframethatchildrenarefreedforadoption (Rockhill,Green,&Furrer,2007;Humphry,Turnball,&Turnball,2006).Thisevidence isconsistentwiththefindingsfromthisstudyandsupportstheparentsclaimsof frustrationsregardingthelengthofthereunificationprocess. Ontheotherhandfosteringachildwasviewedasapositiveexperiencethat impactedtheparentsperceptionsofthechild.Atotaloffiveofthenineparents

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169 interviewedhadfosteredthechildpriortochoosingtoadopt.Theseparentsfeltthatthe fosterexperienceallowedthemtogaininvaluableinsightintothechildsneedsanddaily routine.Itwasthishandsonexperiencethatassistedtheparentsinfeelingconfident regardingtheirabilitytohandlethechildsneedsappropriatelyandthereforeadoptthe child.Literatureregardingadoptionshowsthatfosterparentadoptionsisgoodmethod ofachievingpermanencyforhardtoplacechildren(Frey,Cushing,Freundlich,& Brenner,2007).Furthermore,researchhighlightsthefactthatfosterparentsandthe childformattachmentsduringfostercare.Theattachmentofthechildtothefoster parentincreasestheeaseoftheadoptionprocessandreducesthelikelihoodof disruption(Ponciano,2010;Reilly&Platz,2003).Moreover,theeaseoffostercare placementisconsistentwiththefindingsfromthecasemanagerswhoparticipatedin boththisstudyandthepilotresearch.Thecasemanagersfeltthatintheirexperience creatinganadoptiveplacementwiththefosterparentswasonethemostsuccessful permanencyoptions. AdoptionSystem Anotherfindingofthestudyisthestepswhichparentswentthroughtocomplete theadoptionofthechild.Table5-1providesanoverviewoftheninedifferentsteps. Parentsidentifiedvariousemotionsthroughouttheprocess,whichwerediscussed earlierwithinthecategoryofpersonalconstruct.However,theoverallconsensusabout theadoptionsystemwasnotusuallypositive.Theparentsfeltthattheprocesswas longanddrawnout,furthermoreitwasnotedthattheadoptioncasemanagerswere unabletoprovidethemwithanyguidanceregardingthetimeframeoftheadoption process.

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170 Amajordifficultyexpressedbyanumberoftheparticipantswaschangesin caseworkersthroughouttheprocessasanothersourceoffrustration.Thehighturnover ofcaseworkersisaknownfactintheadoptionsystemanditsimpacthasbeen examinedintheliterature(Cushing&Greenblatt,2009).Likethisstudytheliterature showsanegativeimpactontheadoptionprocessinassociationwithhighcase managerturnover,thereforeclinicalpracticeneedstoexaminewaystoreducecase managerturnoverrates. Macrosystem:SocialConstruct Aninterestingfindingthatemergedfromthisstudywastheimpactthatothers socialviewshadontheparentsadoptionexperience. Socialviews Theparentstalkedabouthowtheirfriends,religiousleaders,andfamiliesviewed theirdecisiontoadoptthechild.Theperceptionofparentschoicetoadoptwasoften negative.Someoftheparentsdiscussedhowtheirfamiliesdidnotaccepttheadopted childaspartofthefamilyandwouldtreatthemdifferentlythanthebiologicalchildren. Sociallyadoptionisoftenviewedasalastresortforparentswhocannothavechildren andaccordingtotheliteratureisnotthepreferredmethodofformingafamily(Schwartz, 2008).Thissocialbeliefwasapparentinthesomeoftheparentsexperienceinhow theadoptedchildwasviewedasdifferent. Anotherimpactofthesocialviewwashowparentswereviewedassaintsby others.Theparentsdescribedhowpeoplewouldoftencomeuptothemandexpress howgratefulthechildrenshouldbeforthemdecidingtoadopt.Furthermore,the parentstalkedabouthowotherstoldthemtheywerewonderfulforchoosingtoadopta

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171 childthathadspecialneeds.Thisviewisingrainedinbothsocietiesperceptionof adoptionaswellaspeoplewithdisability. LifeCarePlans:Applicability Theparticipantswereshownanexampleofalifecareplanthenaskedtorespond regardingtheiropinionsofitsuseduringtheadoptionprocess.Theoverallconsensus oftheplanwasextremelypositive.Parentsfeltthatitprovidedlargeamount informationregardingthechildspotentialneeds.Thisinformationwasreportedas helpfulinregardstoparentsgainingarealisticperspectiveofcaringforthechild. Furthermore,parentsfeltthathavingalifecareplanwouldprovidethemwithguidance onwhattypesofevaluations,supplies,andservicesthattheirchildmayneed.Parents notedthathavingthisinformationwouldprovidethemwiththeabilitytotakechargeof theirchildscare,whichissomethingthatacoupleofparentsfeltweremissingfrom theirparentingexperience. Parentswereaskedtocommentontheamountofinformationprovidedbyalife careplan.Overallparentsfeltthattherewasalotofinformationprovidedbytheplan, howevertheinformationwasadequatetoaddressthenecessaryperspectivethat parentswillface.Theparentsexpressedthatitwasimportantforpeopletogaina realisticunderstandingofwhatcaringforthechildwilllooklike.Furthermore,the parentsfeltthathavingthisamountofinformationwouldallowparentstopreparefor upcomingneedsthatmaynotbecoveredbyMedicaidorotherinsurancepolicies.The abilitytounderstandandprepareforfutureneedswillalleviateonetheidentified barriersofcasemanagerswhichwasperceivedfinancialstrainofadoptingachildwith specialneedsvs.adoptingachildwithoutspecialneeds.

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172 Anotherinterestingfindingwhendiscussingthelifecareplanwashowitwould encourageparentstorecognizetheneedsforservicessooner.Specifically,onemother discussedhowitwasdifficultforherandherhusbandtorecognizeandacceptthefact thattheiradoptedsonwasdisplayingmentalhealthsymptoms.Shefeltthatbeing providedalifecareplancouldhavemadeahugeimpactontimelinessofacquiring services,andassuchimpactedthechildsoverallfunctionalability. Thelifecareplanwasidentifiedbyparentsasatoolthatwouldimpactanumber ofthefrustrationsthattheyexperiencedthroughouttheprocess.Parentstalkedabout howhavingalifecareplanwouldhavealleviatedsomeofthefrustrationsinrelationto beingprovidedwithlittleinformationregardingthechildsbackgroundaswellascurrent andfutureneeds.Asdiscussedearlier,alackofinformationhasbeenidentifiedas majorbarrierduringtheadoptionprocess,especiallywhenplacingchildrenwithspecial needs.Thelifecareplanwilladdressthisbarrierandallowtheparentstoacquirea realisticperspectiveofthechildscurrentandfutureneeds. Parentsknowingwhattypesofserviceswouldbeappropriateforthechildsneed wasanotherareaoffrustration.Againtheparentsfeltthathavingalifecareplanwould eliminatethesedifficultiestheyexperiencedafterthefinalization.Furthermore,thelife careplanwillprovidetheparentswithapostadoptionroadmapthatwillreducethe frustrationsrelatedtothelackofresponsivenessfromtheadoptionagencyafter adoption. Asstatedearlieroneofthecharacteristicsthatimpactedpeoplesdecisionto adoptachildwithspecialneedswastheknowledgeinthemedicalfield.Parentsoften reportedthattheirprofessionalknowledgeofdiseaseanddisabilitymeanttheyhada

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173 betterunderstandingofthechildsneeds.Lifecareplanshavethepotentialtoprovide prospectiveparentswithsomeofthesameunderstandingandknowledgeofdisability. Thegoaloflifecareplansistoeducateitsintendedaudienceandassuchwhen providedtopotentialparentswilleducatethemregardingthechildsneeds.Thislevel ofeducationwillbeessentialinhelpingparentsformaneducateddecisionregarding adoptingachildwhohasspecialneeds. Educatingparentshasthepotentialtoimpactadoptioninbothapositiveand negativemanner.Firstofall,informationandeducationwasidentifiedasessential partsofthedecisionmakingprocess.Thereforebyprovidingparentswiththis knowledgetheymayrealizethattheyareabletocareforthechildandthechildsneeds aremanageable.Thiswouldleadtoapotentialincreaseinthenumberofspecialneeds adoptions.Incontrast,theparentsmayviewbeingprovidedwithalifecareplanas overwhelmingandassuchdecreasethenumberofadoptions.Thepotentialoflifecare planstonegativelyimpactthenumberofspecialneedsadoptionsisnotnecessarily bad.AsdiscussedintheChapter2,thedissolutionrateofspecialneedsadoptionsis significantlyhigherthanthatofchildrenwithoutspecialneeds. Researchregardingtheuseoflifecareplansduringtheadoptionprocessis extremelylimitedandtodatethereisonlyonestudythathasexploreditsfeasibility (Buckles,Pomeranz,&Young,2009).Thisstudyfoundthatbasingalifecareplanon Medicaidwasaviableoptionandcouldbeappliedtoadoptionprocess.Further researchisnecessarytocontinueexploringtheapplicabilityoflifecareplans.Ifthere continuestobepositiveresponsestoitsusesinadoptionthanclinicalpracticeshould makeeffortstoimplementthismodel.

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174 LifeCarePlans:Recommendations Basedontheirexperienceofraisingachildwithspecialneedstheparentswere askedtomakeanyrecommendationsthatwouldmakethelifecareplanmore applicabletoadoptionsystem.Acoupleofthemeswereidentifiedasimportant.Firstof all,theparentsrecommendedthattheplantakeintoaccounttheareainwhichthe parentslived.Someoftheparentsnotethatoneofdifficultiestheyhavefacedis locatingthenecessaryservices.Thiswasofparticularconcerntoparentswholiveda smallcommunityandwouldhavetotravelforanhourorgreatertoreceiveappropriate treatment.Thisrecommendationisextremelyimportantthingtoconsiderinthe developmentofalifecareplan. Inassociationtoavailabilityofservices,istheamountoftimeandmoney necessarytotraveltomedicalappointments.Acoupleofparentspointedoutthatit takesbothtimeandmoneytotravelthenecessarydistancetokeepregularmedicaland mentalhealthappointments.Oneparentsrecommendationwastoincludetravel expensesinthelifecareplanaswayofpreparingparentsfortheoutofpocket expensesthatwouldberequired.Includingtravelexpensesisarecommendationthat couldbeeasilyincludedintheplan,furthermoreMedicaidactuallyreimbursesparents thirty-fivecentsamilefortravel(FloridaMedicaidHandbook,2009). FocusGroups Thisresearcherconductedtwofocusgroupsconsistingofadoptioncase managerstogaininsightintotheirperspectiveoftheissuespresentwhenattemptingto placeachildwithspecialneeds.Utilizingtheconventionalapproachofcontentanalysis theresearchercodedanumberofthemesinrelationshiptothecasemangers experiences(Moen,etal.,2009).AspresentedinChapter6thethemesemergedinto

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175 threebroadcategories:perceptionofspecialneedsadoption,systemconstruct,and assessmentoflifecareplans. Perceptions:Barriers Basedontheirexperience,theadoptioncasemanagersidentifiedanumberof characteristicstheyperceivedasbarriersforpotentialparentsconsideringadoptinga childwithspecialneeds.Oneoftheprimarybarriersdescribedbythecasemangersis howparentsapproachadoptionwithveryspecificdesiresregardingwhattypeofchild theyarewillingtoadopt.Intheirexperiencesthecasemanagersfeltthatthemost commonrequestfrompotentialparentswastoadoptayoungerchild,ascloseto infancyaspossible.Thisdesireissupportedbytheadoptionliterature(Cushing,& Greenblatt,2009;Reilly&Platz,2003;Westhues&Cohen,1990;U.S.Departmentof HealthandHumanServices,2008). Moreover,casemanagerstalkedabouthowmatchingafamilywithayounger childisdifficult,becausethefostercarepopulationonaverageiscomprisedofolder children.Specifically,themostrecentstatisticsfromtheAdoptionandFosterCare AnalysisandReportingSystem(AFCARS)revealsthattheaverageageofchildrenin fostercareawaitingadoptioniseight(AFCARS,2009).Furthermore,theaverageage ofachildwithspecialneedsawaitingadoptionisten(AFCARS,2009).Thesefindings highlighthowtheageofachildimpactsplacement,thusmakingitmoredifficultto locatefamiliesthatarewillingtoadoptchildrenwithspecialneeds.Assuchthe adoptionagenciesshouldexploremethodsofrecruitingfamiliesthatmightbeinterested inadoptinganolderchild. Inadditiontoadoptingayoungerchild,thecasemanagersreportedthatparents haveatendencytopursuechildrenwithsimilarqualitiesasthefamily,suchaslooks

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176 andabilities.Basedonthecasemanagersexperiencetheybelievethatparentsare attemptingtocreateanillusionofabiologicalfamilyevenwhenthechildisadopted. Theconceptofseekingchildrenwhoaresimilartothefamilyisdiscussedinthe adoptionliterature.Specifically,multiplestudieshavefoundthatwhenparentsconsider adoptionasamethodofformingafamily,theyoftenlookforachildthatwillappearasa naturalmemberofthefamily.Thisconceptimpactsparentsabilitiestoconsiderachild withspecialneeds,especiallysincedisabilityisnotacommoncharacteristicamong familiesconsideringadoption. Accordingtothecasemanagers,familiesarejustnotreallyinterestedindealing withspecialneeds.Theydiscussedhowfamiliesimmediatelyoptoutofadoptionwhen findingoutthatthechildhasspecialneeds.Thecasemanagersreportthatthisisoften frustratingbecausetheyarenotgiventheopportunitytoexplaintothefamilyhowmuch thatthechildhastoofferthem.Basedonthediscussionwiththecasemanagersit reallyseemsasthoughpotentialparentsgointotheadoptionprocessseekingachild whohasasfewissuesaspossible.Itsupportsthetheorythatparentswhosechooseto adoptareseekingachildthatwillrequirethelittlestamountofeffortandstressontheir part.Thefactthatachildhasspecialneedsisawell-documenteddeterrenttochoosing toadopt.Multiplestudieshaveshownthatthedocumentationsofbehavioral,emotional, andphysicalproblemsinachilddecreasethelikelihoodofthechildbeingadopted (Reilly,&Platz,2003;U.S.DepartmentofHealthandHumanServices,2008, Macomber,etal.,2005;DaveThomasFoundation,2007).Furthermore,findingsfrom onestudyrevealthatadoptioncasemanagersviewedthelimitedpoolofinterested familiesasamajorbarriertoplacement(U.S.DepartmentofHealthandHuman

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177 Services,2008).Anothersimilarfindingishowparentsarelesslikelytoconsidereven attemptingtoadoptachildfromthefostercaresystembasedontheassumptionthatall thesechildrenhaveadditionalbehavioral,emotional,andphysicalproblems(Dave ThomasFoundation,2007).Knowingthatadoptionofchildrenwithspecialneedsisnot adesirablegoal;thefostercaresystemshouldexplorepotentialmethodsofaddressing thisbarrierinordertoincreasethenumberofspecialneedsadoptions. Anotherbarrierassociatedwithspecialneedsadoptionasidentifiedbycase managersrelatestofinancialconcerns.Thecasemanagersreportthatparents assumethatadoptingachildwithspecialneedsisautomaticallyaccompaniedwitha greaterfinancialburden.Firstparentsassumethatitwillbedifficulttoprovidethechild withhealthinsurance,andthatevenwithhealthcoveragetreatmentwouldrequire additionaloutofpocketexpenses.Furthermore,theparentsbelievethatthereisa financialdiscrepancyinraisingachildwithandwithoutspecialneeds.Thisdiscrepancy isbasedonparentsassumptionsofgreaterexpensesrelatedtosupplies,medications, andothernecessaryequipment.Whilethereisevidencetosupportthatachildwitha disabilitywillrequiremorefinancialstrain,therearealsotechniquestoreducethis burden.Thefirsttechniqueisthroughstatefundedhealthinsuranceprograms,andthe secondmethodofoffsettingadditionalcostincurredisthroughanadoptionsubsidy. AsdiscussedinChapter2eachchildthatisadoptedfromfostercaresystem maintainsMedicaidinsurancecoverage.Aprovisionofthefederallegislation,Adoption SafeFamiliesActof1997(ASFA),establishedstatefundinghealthcare(Medicaid)for childrenwithspecialneeds.ASAFAstatesthatthechildwillmaintainMedicaid eligibilityregardlessoftheadoptiveparentsincomeorgeographicallocation.(Adamec

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178 &Miller2007).Thecasemanagersnotedthatpotentialparentsareconcernedabout affordinghealthcoverageforthechild.SincethechildmaintainsMedicaidtheparents willnotaccrueanyadditionalexpenseinrelationtothechildobtaininghealthcare coverage. Thecasemanagersalsoexpressedthatanotherfinancialconcernofpotential parentsistheamountofoutofpocketmedicalexpensesnecessarywhenraisingachild withspecialneeds.ThechildwillhaveMedicaidhealthcoverageandassuchthe majorityofthechildsphysicalandmentalhealthrelatedneedsarefullyreimbursedby theinsuranceplan.OnestudyhasexaminedtheextenttowhichMedicaidand supplementaryhealthcareprogramsadequatelymeetachildwithspecialneedscare. Thisstudyexaminedtherecommendedneedsofachildwithcerebralpalsythroughlife expectancy,asstatedonalifecareplan,withacomparisonoftypeandfrequencyof servicesMedicaidcovers.ItwasdiscoveredthatMedicaidadequatelyaddressedthe childsphysicalandmentalneedsinrelationshiptoboththetypeandfrequencyof services.Therewereonlytwosectionsofthelifecareplanwherenoneofthe recommendationswerecoveredbyMedicaidprogramsincluding:leisuretimeandaids forindependentfunctioning.Undereachofthesesectionrecommendationsfor adaptivetoys,assistivecomputers,andsummercampwereincluded(Buckles, Pomeranz,&Young,2009).Basedonthefindingsofthisstudy,potentialparentswill incurlittletonooutofpocketmedicalexperiences. Thesecondmethodofaddressingthefinancialstrainofraisingachildwithspecial needsisthroughafederaladoptionsubsidyprogram.TitleIV-Eestablishesan adoptionassistanceprogramthatprovidesadoptivefamilieswithamonthlysubsidy.

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179 Theprimarygoalofthemonthlysubsidyistoassistparentswithexpensesacquiredin relationtocaringforachildwithspecialneeds.Tobeeligibleforthesubsidythechild musthaveadocumentedspecialneed,andbeavailableforadoption(ChildWelfare InformationGateway,2004).Themonthlyamountvariesforeachchildandisbasedon age,levelofneed,andrace/ethnicityofthechild(Gibbs,Dalberth,Berkman,& Weitzenkamp,2006).Theaverageamountofmonthlysubsidyis675dollars;however thisamountcanrangefrom350to1000dollarspermonth.Parentsareabletousethe moneyforanyneedsrelatedtothechild.Childrelatedneedsmayincludeadoptive toys,summercamps,supplies,andmedicine.Thesubsidywillhelpalleviatethe parentsconcernofadditionalfinancialburdenacquiredfromtheneedsofthechild. Furthermore,thismoneyhastopotentialtocoveranyexpensesthatarenotpaidfor underMedicaid.Theliteraturehasexaminedtheeconomicimpactoftheadoption subsidyonoutofpocketexpenses.Thefindingsfromseveralstudiesdemonstratethat theadoptionsubsidyhelpsoffsettheadditionalexpensesrelatedtocaringforachild withspecialneeds(Gibbs,Dalberth,Berkman,&Weitzenkamp,2006;Hansen& Hansen,2005;ChildWelfareInformationGateway,2004).Thisevidencesupportsthe conceptthattheadoptionsubsidywillaidparentswithanyexpensesincurred,however potentialparentsareoftennotawareofavailabilityoftheadoptionsubsidy.Therefore, itisimportantfortheadoptioncasemanagerstomakeparentsawareoftheavailability ofassistanceandhowitwillbenefitthemwhileraisingachildwithspecialneeds. Anotherinterestingbarrieridentifiedbythecasemanagerswastheimpactthat lackofeducationregardingspecialneedshasontheadoptionprocess.Thecase managersexplainedthattheparentsdonotunderstandtheimplicationsofthechilds

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180 needsandthereforeoftenoverexaggeratetheirimpactonthechild.Theparentsover exaggerationsoftheneedsgeneratedfeelingsofuncertaintyregardingthechilds future.Thecasemanagersdescribedhowparentshadconcernsregardingthechilds futureandtheirabilitytosuccessfullymanagetheseissues.Theseconcernsoftenled toparentsfeelinguneasyregardingadoptingthechildandthereforechoosingtodecline adoption.Limitedresearchisavailableontheimpactthatlackofparentaleducation hasontheadoptionprocess.However,thereisonestudythatexploredthebarriersto placingchildrenwithspecialneeds(Puddy&Jackson,2003).Thefindingsfromthis studyrevealedthatlackofexperience/educationwithspecialneedschildrenwasa significantbarrier.Thestudyfindingsnotethatthelackofexperiencereinforcedthe unrealisticexpectationregardingthechildsbehaviorandabilitiesaswellastheirimpact onthechildsfuture.Thesefindingsaresimilartoimpactthattheadoptioncase managersdescribedinthisstudy.Furtherresearchregardingtheimpactoflack parentaleducationiswarrantedsincetodatelimitedresearchisavailable.Iffurther researchsubstantiateslackofparentaleducationasabarrier,thenitwillbeimportant foradoptionagenciestoprovidemoreintensiveeducationforpotentialparentspriorto matching. Inadditiontothepotentialparentslackofeducation,istheimpactofcase managersmisunderstandingsregardingdisability.Thecasemanagerstalkedabout howtheireducationalbackgroundsareofteninsocialservices,whichmeanstheyreally donothaveanyeducationaltrainingondisability.Furthermore,thecasemanagers alsodiscussedalackofanyspecializedtrainingregardingthedemandsofchildrenwith specialneeds.Thecasemanagerspointoutthattheyreallydonothaveanymore

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181 informationregardingspecialneedsthanthepotentialparents.Therefore,thecase managersdisplayaninabilitytoadequatelyaddressparentsquestionsandconcerns. Researchershaveexaminedtheinfluencethatlackofspecializedinformationregarding thechildsneedshasontheadoptionexperience.Severalstudieshaveidentifiedthat lackofinformationhasanegativeimpactontheadoption(U.S.DepartmentofHealth andHumanService,2008;OPPAGA,2008;Barth,Berry,Goodfield,&Carson,1986; Groze,Young,&Corcran-Rumppe,1991).Specifically,onestudyreportedthat80%of thestudypopulationfeltthatlackofinformationwasamajorbarrierduringtheadoption process(U.S.DepartmentofHealthandHumanServices,2008).Whilethesestudies exploredtheimpactregardinglackofinformation,nonehaveidentifiedtherationaleas towhythisoccurs.Thefindingsofthecurrentstudyuncovercasemanagerslackof knowledgeasoneoftheprimarybarrierstoprovidingadequateinformationtopotential parents.Assuchitisimportantfortheadoptionsystemtoexploremethodsoftraining theadoptioncasemanagersintheareaofspecialneedsadoptions. Perceptions:Needs Alongwiththediscussionofthebarrierspresentwhenplacingachildwithspecial needs,thecasemanagersidentifiedneedsthattheyfeltwouldhelpeliminatesomeof issuespresent.Firstofall,casemanagersfeltthatthereisaneedforadditional educationofpotentialparents.Currentlytheonlyeducationalcourseprovidedfor potentialparentsistheModelApproachtoPartnershipinParenting(MAPP).This courseisatenweeklongintensiveparentingclasscoordinatedbytwocertifiedtrainers, generallyasocialworkerandanexperiencedparent(Puddy&Jackson,2003).The classprovidespotentialparentswithinformationontheadoptionprocess,aswellasan intensiveintroductiontoparentingskills.However,thecoursecurriculumdoesnot

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182 includeanyaspectsspecifictoraisingachildwithspecialneeds(Adamec&Miller, 2007).Therefore,casemanagersnotethatMAPPclassesareeffectiveinhelping parentsmakedecisionsregardingadoption,howeverfallshortoneducatingparents regardingspecialneedschildren.Verylittleresearchhasexaminedtheeffectivenessof MAPPclassesinpreparingparentsfortheproblemsconfrontedwhenraisingachild withspecialneeds.TodatethereisonlyonestudyexaminingthecurrentMAPP curriculumandhowwellitpreparesparents.ThestudyfoundthattheMAPPtraining courseismoreofadecisionmakingtooltoassistparentsinchoosingtoadopt,rather thanaprogramthatpreparesparentstomanagebehavioralproblems(Puddy& Jackson,2003).Thefindingsfromthisstudyareconsistentwiththereportsfromthe adoptioncasemanagers.Theconsistencyamongthesefindingssupportstheneedfor additionalresearchtoexploretheeffectivenessofcurrenteducationalmethodson preparingpotentialparentsforadoption.Iffurtherresearchconfirmsthisbroadgapin trainingthenareviewofthecurrentMAPPcurriculumiswarranted. WhiletheeffectivenessofthecurrentMAPPclassesisinquestion,theevidence stillshowsthatthistrainingcurriculumfailstoprovideparentswitheducationonspecial needs.Therefore,thetasksofprovidingdisabilityrelatedinformationwillfallbackon theadoptioncasemanagers.Thecurrentstudyhighlightstheimportanceofcase managersprovidingadequateinformationtopotentialparents,thereforerequiring adoptionagenciestoexploremethodsofdisseminatingdisabilityrelatedinformationto thepotentialparents. Theothercharacteristicthatthecasemanagersfeltwouldhelptheadoption processwasforparentstobemoreopentotheideaofadoptingachildwithspecial

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183 needs.Asstatedearlieroneoftheprimarybarriersisthespecificdesiresofpotential parentswhenapproachingadoption.Furthermore,thefindingsofonestudyregarding thebarrierspresentintheadoptionsystemhighlightedthechallengespresentedbya limitedpoolofparentsopentospecialneedsadoptions.Theliteraturesupportsthelack ofwillingnessonthepartofpotentialparentsinconsideringadoptingachildwhohas specialneeds,howeverdoesnotofferanysuggestionsregardingmethodsof addressingtheseconcerns.Thecasemanagersinthecurrentstudyfeltthatifparents wouldbemoreopenmindedwhencomingtotheadoptionagency,thentheywould havetheabilitytohelpthemunderstandwhatachildwithspecialneedshastooffer theirfamily.Thereisnoresearchavailableonhowtohelpparentsenteradoptionwith anopenmind,justinformationonhowclosemindedparentsareregardingadoption. Therefore,methodsofconfrontingthisbarrierneedtobeexploredwithfurtherresearch. Perceptions:ThoseWhoAdoptSpecialNeedsChildren Aninterestingfindingofthestudyiswhatthecasemanagersidentifiedas characteristicsofparentswhochoosetoadoptchildrenwithspecialneeds.Thecase managersnotedthatpeoplewhohavemedicalbackgroundsappeartobemorewilling toconsideradoptingachildwithspecialneeds.Thecasemangersfeltthatthemedical knowledgehelpedtheparentshaveamorerealisticunderstandingofthechild. Furthermore,thecasemanagerstalkedabouthowthemedicalknowledgeappearedto helptheparentsfeelmorecompetentincaringforthechild.Thefindingsregardingthe impactofmedicalbackgroundontheadoptionprocesshasbeenreplicatedfromthe pilotstudywithcasemanagers,aswellasevidentintheinterviewswithparentswho haveadoptedchildwithspecialneeds.Assuchitisimportantaspectforadoptioncase mangerstoincorporatewhenrecruitingadoptiveparents.

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184 Whilethefindingsfromthisresearcherspilotstudyaswellasthisstudyreveal medicalbackgroundasacommoncharacteristicofthosewhoadoptchildrenwith specialneeds,thereislimitedevidenceintheliteraturetosupportthesefindings.A coupleofstudieshavebeenconductedtoidentifysomeofthecharacteristicswhich impactapotentialparentsabilitytoadoptachildwithspecialneeds.Thefirststudy reviewedfifty-sixfamilieswhohadadoptedchildrenwithspecialneedstodevelopa profileoftheparents.Thefindingsofthestudyshowthat71%oftheparentshad knownorlivedwithsomeonewhohadadisabilitypriortochoosingtoadopt(Unger, Deiner,&Wilson,1988).Thisstudyhighlightsthatfactthatsomeexperienceor knowledgeofdisabilityisimportantfactorthatcontributestoapersonsdecisionto adoptachildwithspecialneeds. Thesecondstudyexploredparentslevelofpreparednesstoraiseachildwith specialneeds.Thisstudyinterviewedfamiliesasamethodofidentifyinghowprepared afamilyfeltaswellaswhatcharacteristicsaidedthemfeelingprepared.Thearticle identifiesthatthefamilieswhofeltverypreparedreporthavingadequatetrainingand information,adoptedpreviously,orhadpreviousexperiencewithchildren(Egbert& Lamont,2004).Whilethisstudydidnotreporthowtheparentsobtainthe training/information,priorexperienceinthemedical/socialservicefieldwouldresultin adequatetraining/information.Therefore,thisstudysupportstheconceptthatthose withprofessionalorpersonalexperienceinthemedical/socialservicefieldwouldbe morelikelytohandleraisingachildwithspecialneeds. Acoupleofstudieshaveidentifiedsomecharacteristicsofparentswhochooseto adoptchildrenwithspecialneeds,howevernoneofthesestudiesspecificallyfocused

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185 ontheimpactthatprofessionalexperienceinthemedical/socialservicesfieldhaveon adoption.Therefore,furtherresearchneedstobeconductedinordertofurther understandthecharacteristicsofparentswhodecidetoadoptachildwithspecial needs.Specifically,researchshouldexaminetheimpactofprofessionalexperience. Thecharacteristicsidentifiedbytheresearchwillthenencouragerecruitmentofparents whoareopentospecialneedsadoptionsaswellasshedlightonmethodstomitigate theconcernsotherpotentialparentsmayhave. OverviewofAdoption:TypesofAdoptions Accordingtothecasemanagerstherearethreedifferenttypesofplacement optionstheyconsideronceachildisfreedforadoptionincluding:kinshipadoption, fosteradoption,ornon-relativeadoption.Thefirstoptioniskinshipadoption,whichis definedasabiologicalfamilymemberchoosingtoadoptthechild.Basedon discussionswiththecasemangersthisisviableoptionforpermanencywhenafamily memberisavailableandwillingtotakethechild.Theprimarychallengesnotedbythe casemanagerarethatkinshipadoptionisoftennotaviableoptionforthechildren whicharefostercare.Thisisevidentinthestaticsregardingadoptionfromthefoster caresystem.In2009atotalof57,466childrenwereadoptedfromthepublicadoption system,andonly32%or17,300ofthemwerekinshipadoptions(AFCARS,2010). Regardlessoftheavailabilityofrelativesinthepositiontoadopt,thecase managersstillreportthatkinshipplacementisoneoftheeasierplacementoptions.The casemanagerstatesthatitisoftenaneasierplacementbecausethefamilymembers tendtohavesomeunderstandingofwhatthechildsneedsarelike.Furthermore, kinshipplacementisoftenpreferredforthechildbecausetheyareabletomaintaina relationshipwithaportionofthefamilyoforigin.Thisconnectionoftenhelpschildren

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186 establishbondswiththeadoptivefamilyespeciallysincethechildmayhavehadcontact withtherelativepriortobeingplacedforadoption.Literatureonthetopicregarding kinshipadoptionsupportsmorepositiveattachmentsbetweenthechildandfamily (Lorkovich,Piccola,Croza,Brindo,&Marks,2004;Nickman,etal.,2005;Ryan, Hinterlong,Hegar,&Johnson,2010).Researchalsorevealsthatchildrenadoptedby relativesexperiencefewernumbersofdisruptionsintheirplacement(Magruder,1994). Ahugefactorcontributingtothedevelopmentofattachmentdisordersinadopted childrenisthenumberoffosterplacementsthechildexperiences(Bruhn,2003; Lawence,Carlson,&Egeland,2006;Badaetal.,2008).Sincechildrenadopted throughkinshipexperiencefewerdisruptionsinoverallplacement,theyarelesslikelyto developanattachmentdisorder.Thelowerlikelihoodofattachmentdisorderisrelated tomoreoverallpositiveoutcomesfromtheadoption(Ryan,Hinterlong,Hegar,& Johnson,2010).ThestudyconductedbyRyanandcolleagues(2010),specifically focusedontheoveralloutcomesofchildrenplacedinkinshipversusthoseinnonrelativeadoptions.Thefindingsofthestudyrevealthatfamiliesformedthroughkinship adoptionwheremorelikelytoreportsatisfactionwiththeadoption,awillingnessto adoptagain,aswellasapositiverelationshipwiththeadoptedchild.Thissupportsthe casemanagersperceptionsandexperienceswhenattemptingtoplaceachildwith specialneeds. Whilerelativeplacementisagoodoptionforsomechildren,itisfrequentlynot availableforchildrenwhoareinthefostercaresystemawaitingadoption.Thisleadsto thesecondandmostcommontypeplacementinwhichcasemanagersconsider, adoptionbythefosterparents.Accordingtotheadoptiondatainthefiscalyearof

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187 2009,57,466childrenwereadoptedfromthepublicfostercaresystem.Themajorityof thefinalizedadoptionswerebyfosterparentswithatotalof29,417or54%(AFCARS, 2010).Thisdatasupportsfosteradoptionisanextremelyviableoptioninorderto obtainpermanencyforchildrenwithspecialneeds. Thecasemanagersidentifieddiscussingtheoptiontoadoptthechildwiththe fosterparentsisoneofthefirststepstheytakeinexploringplacementoptions. Furthermore,itisreportedthatinthecasemanagersopinionsadoptionbythefoster parentsisoneofthebestoptionsforthechild.Thechildhasalreadyformedabond withthefosterparentwhichaidsinthechildstransition.Moreover,casemanagers notethatthefosterparentsalreadyhaveanideaofthedemandsrequiredbythechilds needs.Thisfindingisconsistentwiththeinterviewsofparentswhohadadopted childrenwithspecialneeds.Atotaloffiveofthenineparentshadfosteredthechild priortochoosingtoadoptandfeltthatthefosterexperienceprovidedthemagreater senseofunderstanding.Furthermore,fosterparentadoptionisassociatedwithlower disruptionsrates,highersatisfactionoutcomes,andfeweradjustmentissues.As discussedearlier,theliteratureregardingfosterparentadoptionsupportsthesefindings. Thefinaltypeofadoptionistorecruitpotentialparentsandthenmatchthechilds needsaccordingtowhatpeoplearelookingfor.Thisactuallyistheleastcommon methodoffindingpermanencyforachildwithspecialneeds.Ofthe57,466finalized adoptionsin2009only14%ofthosewerefromnon-relatives(AFCARS,2010).In accordancewiththestatisticsthecasemanagersnotethatthisisthemostdifficulttype ofplacementtoseekforachild.Againtheyreferredbacktothebarrierstheyhave witnessedfrompotentialparents.Intheirexperience,thecasemanagersdescribed

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188 thatchildrenwhoarewaitingtobematchedwithaparenttendtolingerinthesystemfor anextendedperiodoftime.Furthermore,itisnotedthatthelongerthechildisinthe systemalongwiththegreaternumberofplacements,themorebehavioraland psychologicalissuestheyseedevelopinginthechild.Thenegativeimpactofthelength ofstayonachildspsychologicalwellbeingiswelldocumentedintheliterature(Bruhn, 2003;Lawence,Carlson,&Egeland,2006;Badaetal.,2008).Basedonthis knowledgeitisimportantfortheadoptionsystemtoexploremethodsthatcould increaseparentswillingnesstoadoptachildwhohasspecialneeds. OverviewofAdoption:PreparationforAdoption Whilediscussingtheadoptionprocessthecasemanagersidentifiedstepsthey normallytakeinpreparingboththepotentialparentsandthechildforthefinalization. Currently,thecasemangersnotethatthepeoplewhoareinterestedinadoptingachild startbyattendingMAPPtrainingclasses.Theseclassesaredesignedtoeducatethe personontheadoptionprocess,provideparentingskills,andpreparethemforthingsto expect.Thecurrenttraininghasmajorissuesasidentifiedbythecasemanagers.The casemanagersnotethatatthispointthereisnospecializedtrainingforparentsonwhat toexpectwhenadoptingchildrenwithspecialneeds.Asdiscussedearlier,theMAPP trainingclassesfallshortwhenitcomestopreparingpotentialparentsfortheadoption ofchildrenwithspecialneeds.Furthermore,theresearchsupportstheclassasmoreof adecisionmakingtoolratherthanaprogramthatpreparesparentstomanage behavioralproblems(Puddy&Jackson,2003).Thisleavestheparentsfeeling unpreparedandfullofunrealisticexpectationsregardingthechild. Thecasemanagersdiscusshowtherearelimitedopportunitiesduringthe adoptionprocessforthepotentialparentstogaininformationonraisingachildwith

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189 specialneeds.Thesecommentsbythecasemanagersisconsistentwiththe experiencesofparentswhonotedthatverylittleinformationwasprovidedtothematthe timeofadoption.Thelackofinformationoftenledtounduefrustrationsregardingtheir adoptionexperienceandisanimportantaspecttheprocessthatneedstobeexamined. Assuchtheresearcherlookedattheliteratureregardingtheimpactthatlackof informationhasontheadoptionexperience.Theliteratureshowsthatoneofthe primaryreasonsfordissolutionofanadoptionisthelackofinformationandpreparation providedbytheadoptionagency(Schwartz,2008).Sincetheparentswerenot adequatelyinformedatthetimeofadoptiontheywereillpreparedtohandleissuesas theyarose.Moreover,parentsinthecurrentstudyalsorecognizedknowledgeas importantfactinthedecisionmakingprocess.Furtherresearchisnecessaryto examinetheimpactthatlackofinformationhasontheadoptionprocessandhowthis issuescanbemodified. LifeCarePlan:Applicability Theadoptioncasemanagersviewedanexamplelifecareplananddiscussed theirthoughtsregardingitsuseduringtheadoptionprocess.Theoverallconsensus wasthatlifecareplanswouldbebeneficial.Specificallycasemanagersrecognized issuestheyfeltthelifecareplanwouldaddress.Thecasemanagerstalkedaboutthe implicationsoflifecareplansforboththepotentialparentsaswellasthecase manager.Thecasemanagerstalkedabouthowalifecareplanwouldprovidepotential parentswithadditionalinformationregardingthechildsneeds.Thisinformationwould helpthepotentialparentsgainarealisticunderstandingofspecialneeds,therefore mitigatingtheissuesthiscreatesduringtheadoptionprocess.Thecasemanagers notethathavingaplanthatlookstowardsthefutureofthechildmayhelpparentsgrasp

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190 theconceptthatthechilddoeshaveafuture.Furthermore,thecasemanagerstalked abouthowafutureperspectivewilleliminateparentsfearsregardingtheuncertaintyof howdisabilityrelatedneedsmaychangeovertime.Thisuncertaintywasoneofmajor barrierswhichthecasemanagershavewitnessed. Anotherinterestingfindingishowthecasemanagersperceivedthepossibilitiesof alifecareplantoaidpotentialparentsinunderstandingthefinancialaspectrelatedto thechildsneeds.Thecasemanagerexplainedthatthepotentialparentsoftenexpress fearsthatcaringforthechildwouldcreateamajorfinancialburdencomparedtoraising achildwithoutspecialneeds.Sincethelifecareplanestablishesaconcretemethodof viewingthechildsdisabilityrelatedneedsandthefinancesnecessarytomeetthem,it willhelpparentscomprehendthefinancialaspectofthechild.Furthermore,thecase managersnotethatestablishingtheplanonwhatMedicaidwillpayforhelpsparents understandthatthechildsinsurancewillcoverthemedicalneeds.Thereforetheplan willillustratethatcaringforachildsmedicalneedsissimilartocaringforachildwithout specialneeds.Casemanagersalsotalkedabouthowprovidingthisplantopotential parentswillallowthemtoprepareforanyofthechildsneedsthatwillnotbecoveredby insurance,thusmitigatingsomeofthefinancialconcerns.Overall,thecasemanagers feltthathavingthisfinancialinformationregardingthechildsneedswillbeveryhelpful whenparentsareexploringadoption. Thenextthemeidentifiedbythecasemanagerswashowthelifecareplanwill helpanswerpotentialparentsquestions.Thecasemanagersnotethatwhenpeople comeinseekingadoptiontheytendtohavealargeamountquestionsregardingthe childrenavailable.Furthermore,thecasemanagersnotethatwhenparentshearabout

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191 childrenwhohavespecialneedstheytendtoshyawayfromtheideaofadoptingachild withthosecharacteristics.Asdiscussedearlier,theliteratureregardingadoptionshows thatparentsoftenreportfeelinguncomfortableinconsideringadoptingachildwhohas specialneeds(Reilly&Platz,2003).Thesefeelingsarerelatedtothelackof knowledge,unansweredquestions,andfalseassumptionsregardingthechild(Reilly& Platz,2003;Ponciano,2010).Theuseofalifecareplanwasidentifiedbythecase managersasamethodofansweringparentsquestionsregardingthechildscurrent andfutureneeds,aswellasarealisticunderstandingofthefinancialaspect.Thecase managersbelievethatthistoolwillhelpthemconveyarealisticpicturethatwillprovide parentswithaholisticandfactualunderstandingofthechild.Assuchitwilladdress someofthecommonconcernstheyhearfromparentswhendiscussingachildwith specialneeds. Thefinalthemeregardingtheapplicationoflifecareplanswas education/knowledgeforpotentialparents.Thecasemanagerfeltthatpeoplewith medicalbackgroundsorapersonalunderstandingofdisabilitywheremorelikelyto consideradoptingachildwithspecialneeds.Theperceptionofthecasemangerswas thatamedicalbackgroundmeantthattheparentshaveeducationonhowtohandlethe specialneedsofthechild.Therefore,thecasemanagersbelievethatutilizingalife careplanduringthepre-adoptivephasewillgivepotentialparentsasimilar understandingandconfidenceinhandlingthechildsneeds. Thecasemanagersalsorecognizedtheapplicabilityoflifecareplanstoaidthem duringtheadoptionplacement.Duringthefocusgroupscasemanagersdescribedhow itwasfrustratingforthembecausetheydidnothaveanymedicalbackgroundor

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192 trainingregardingspecialneeds.Thislackofknowledgemadeitdifficultforthemto answerimportantquestionswhichthepotentialparentswhereasking.Oftenthecase managersfeltthattheirlackofabilitytoappropriatelyanswerquestionshinderedthe adoptionprocess.Thecasemanagerstalkedabouthowalifecareplanwouldprovide themessentialknowledgeregardingtheneedsofthechild.Thisknowledgewould allowthemtoprovidepotentialparentswithmoreadequateinformationandaddressthe concernsthatparentsexpresstothem.Withtheadditionalknowledgecasemanager feltthattheywouldbemorepreparedtoseekadoptiveplacementforachildwith specialneeds. Inadditiontoansweringparentsquestions,thecasemanagersalsoidentifiedthe additionalknowledgegainedfromalifecareplanwillaidtheminestablishingthe appropriatepostadoptionservices.Casemanagersfeltthattheirlackofknowledge regardingachildscurrentandfutureneedswasamajorbarriertoknowingwhattypeof carewasnecessary.Thisbecameextremelyimpactfulwhenattemptingtoassista familywithwhattypesofservicesthechildwillcontinuetoneedafterleavingthefoster caresystem.Furthermore,thecasemanagerstalkedabouthowtheadoptionsystem hasrecognizedtheneedformoreaccuratepostadoptionservices.Assuch,thecase managersarebeingassignedtheadditionalroleofestablishingpostadoptionservices forafamilyatthetimeoffinalization.Therefore,alifecareplanwouldbeveryimpactful inknowingwhattypesofservicestoestablish. Thefinalimpactoftheadditionalknowledgecasemanagersgainfromalifecare planisassistanceinmatchingachildwiththepotentialparent.Thecasemanagers discussedhowitisoftendifficulttoknowifapotentialparentisgoingtohavetheability

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193 andknowledgetohandleachildsneeds.Theimpactofpredictingaparentsabilityto careforthechildsneedsisextremelyimportant,becauseiftheyareunabletothen dissolutionofadoptionoccurs.Theliteraturehasestablishedboththehigherrateof dissolutionofadoptionforchildrenwithspecialneedsaswellasthenegativeimpactit hasthechild.Thelifecareplanwillprovidethecasemanagerswithabetter understandingofthechildsneeds;thereforetheywillbemorecapableofassessinga parentsreadinesstoadopt. LifeCarePlans:Recommendations Thecasemanagersmaderecommendationswhenconsideringthelifecareplan modelanditsuseduringtheadoptionprocess.Thecasemanagersfeltthatitwas importantforthelifecareplantonotonlyfocusontheissuesrelateddirectlytothe disability,buttoalsoincludetreatmentoptionstoaddresssomeoftheproblems commonlyassociatedwithchildrenwhoareadopted.Thecasemanagersnotedthata numberofthechildrenwithspecialneedshavebeeninfostercareforanextended periodoftimeandinrelationhaveemotionaldifficulties.Ofspecificconcern,thecase managersidentifiedissuesrelatedtoattachmentandhowthisoftencreatesdifficulties asthefamilyattemptstoadjusttotheadoption.Difficultieswithattachmentare commonlyidentifiedintheliteratureasamajorissueinadoptionofchildrenwithspecial needs(Bruhn,2003;Lawence,Carlson,&Egeland,2006;Badaetal.,2008). Furthermore,researchalsosupportsthatincreasedamountoftimeandnumberof placementisassociatedwithanincreaseinmentalhealthsymptoms(Lawence, Carlson,&Egeland,2006;Badaetal.,2008).Basedonthefindingsofthisstudyas wellasthesupportingliterature,itwillbeimportanttoconsideradoptionspecificissues whendevelopingalifecareplan.

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194 Anotherinterestingfindingwastherecommendationsbytheadoptioncase managerstoincludethemonthlyadoptionstipendinthefinancialaspectsofthelife careplan.Thecasemanagersdiscussedhowitwasimportantthatparentsunderstand thatMedicaidwillcoverthemajorityofthemedicalexpenses,butthatincludingthe monetarystipendwillhighlighthowfamilieshavethepotentialtomeetthefinancial demandsofraisingthechild.Furthermore,thisstipendcouldbeincludedintheplanas awaytocovertheunmetexpenses.Casemanagersfeltthatincludingthisinplan wouldprovidethemwithatooltohelpparentsunderstandthemonthlystipendand highlighthowitlessenthefinancialstrainofraisingachild. LifeCarePlans:Concerns Thecasemanagerstalkedaboutsomeoftheissuestheyfeltmightimpactthe implementationoflifecareplanswithintheadoptionsystem.First,casemanagers talkedabouttheissueofwhowouldbedevelopingthelifecareplans.Theyexpressed concernsonhowthelifecareplanwouldworkwithinthesystem.Specifically,they notedthatsomeonewouldneedspecializedtraininginlifecareplanninginorderto developtheplanandtheyarenotsurehowthatwouldwork.Furthermore,wasthe concernofhowtheplanstakeintoconsiderationeachchildsneedswasalso discussed.Thesearebothveryviableconcernsregardingtheimplementationoflife careplans.Futureresearcherneedstoexploretheseissuesandmethodsof addressing. Anotherissuethatcasemanagersidentifiedwastheavailabilityofappropriate services.Thecasemanagersfeltthatlocatinggoodtreatmentoptionsforsomeofthe issuespresentinchildrenwhoareadoptedisdifficult.Theexampleofreactive attachmentdisorderwasbroughtupbythecasemanagers.Thecasemanagerstalked

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195 abouthowintheirexperiencelocatingatherapistthatiscompetentintreatingreactive attachmentdisorderhasbeenalmostimpossibleintheirarea.Theavailabilityof appropriateservicesissomethingimportanttoconsiderinthedevelopmentofalifecare plan.Moreover,thisissueexperiencedbyadoptioncasemanagershighlightstheneed forspecializedtrainingofhealthcareprofessionalonadoptionspecificissues. AssuringTrustworthiness Trustworthinessreferstothesignificanceofthestudysfindingsandiscommonly achievedthroughcredibility,transferability,dependability,andconformability(Lincoln,& Guba,1985p.290).Theresearcherchosetousedatatriangulationasamethodto increasethetrustworthinessofthecurrentresults(Johnson,1997).Datatriangulation istheuseofmultipledatasourcestohelpunderstandaphenomenonandallowsfor crosscheckingofinformationandtheconclusiondrawn(Johnson,1997).The researcherchosetogatherinformationandcodedatafromtheinterviews,focusgroup, aswellasobservationalfieldnotes.Thisallowedformultiplesourcesofdataandthe abilitytogaincongruenceamongthemesidentified. Anotherchallengetotrustworthinessofthestudyistheassumptionthat researchersbiaseswillimpactthedataanalysisandinterpretation(Patton,2002).To accountforthislimitationtheresearcherestablishedstepstomaintainreflexivity.As discussedinChapter3,reflexivityisassuringthattheresearcherattends systematicallytothecontextofknowledgeconstructionthroughouttheresearch process(Maltrud,2001).Thisisespeciallyimportantwhenexaminingtheeffectsofthe researcherandtheirbiasesateverystepoftheprocess(Maltrud,2001).Inorderto maintainreflexivitythroughouttheresearchthefollowingstepswereperformed:

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196 Theresearchercompletednecessarytraininginqualitativemethods,which providedawarenessonbasicqualitativeresearchmethods,theoretical frameworks,developingdiscussionguides,andconductinginterviews Followingeachintervieworfocusgrouptheresearcherrecordedheropinionsand reactionstotheprocessinfieldnotes. Theresearcherutilizedcomputersoftwarethatallowedfortrackingchangesand opinionsduringthecodingprocess. Theresearcherconsultedwithhercommitteechairregardingthethemesthat emergedfromthedata.Furthermore,consultedwithapeergroupregarding codingframeworkaswell. Theresearchermaintainedacontinuousawarenessofpersonalbiasesthatmay influencesthequalitativeprocess.Apersonalbiasstatementwasdiscussedin Chapter3. Limitations Thisresearchstudyhasacoupleoflimitationsthatareinherentwithqualitative researchmethods.Aprimarylimitationofthecurrentstudyisthesamplingtechnique utilizedtorecruitparticipants.AsdiscussedinChapter3,theresearcherchosetouse purposefulsamplingmethods,becauseitbestfittheresearchgoals;however purposefulsamplinghasthepotentialtocreateahomogenoussample.Ahomogenous samplelimitstransferabilityoftheresultstothebroaderpopulation.Thesampleofcase managerswashomogenousingender,yearsofexperiencing,andgeographicalarea, furthermore,thesampleofparentswasalsohomogenousingender,socioeconomic status,andgeographicalarea.Thehomogeneityofbothsampleslimitsthe transferabilityoftheresults;howeverthiswasnotthegoalofthecurrentstudy. Anothermajorlimitationtothestudyisthesamplesize.Bothresearchmethods involvedtheuseofasmallsamplesizes,nineindividualinterviewsandsixmembersin eachfocusgroup.Thiscreateslimitationsinthereliabilityofthestudiesfinding,

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197 howeveragaintheprimarygoalofthisstudywasgainrichinformationregardingthe phenomena.Additionalresearchiswarrantedtogainfurtherinsightintothe experiencesofamorediversegroupofparentsandcasemanagers. StudyImplications ClinicalPractice Theresultsofthisstudyprovideagreaterunderstandingoftheissuespresent duringthespecialneedsadoptionprocessandareaswhereimprovementsare necessary.Furthermore,theknowledgegainedregardingtheuseoflifecareplans shedssomelightonthepotentialtooltoaddressthepresentissues.Thisknowledge willaidadoptioncasemanagerswhensearchingforadoptiveplacementofachildwith specialneeds.Specifically,thefindingsofthisstudyhavethepotentialtoimpactthe followingareasoftheadoptionprocess:recruitmentofpotentialparents,screeningof potentialparents,andeducationofpotentialparents,aswellaspostadoption placement,andtheuseoflifecareplans. Oneofthemajorfindingsofthestudyisthatpeoplewithmedicalorsocialservice backgroundstendtofeelmorecomfortableinadoptingchildrenwithspecialneeds.As suchadoptionagenciesshoulddirectrecruitmenteffortstowardsthispopulation.By increasingrecruitmenteffortsofpeoplewithmedicalbackgroundsthiswillaidthe adoptioncasemanagerinidentifyinganappropriateadoptiveplacement.Another factorrecognizedintheresultsthatimpactstherecruitmentprocessishowfostercare parentsseemtobemorelikelytoadoptachildwhohasspecialneeds.Thisagainhas hugeimplicationsfortherecruitmentprocess,becausethisstudyprovidesadoption casemanagerswithinformationtoencouragethetransferoffosterplacementsinto adoptiveplacements.

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198 Theknowledgeacquiredfromtheresultsofthisstudysupporttheneedforsome methodofassessingpotentialparentsreadinesstoadoptachildwithspecialneeds. Thefindingsregardingcharacteristicsthatimpactparentsdecisionsmakingcan potentiallyaidthecasemanagersinassessingreadinessandunderstandingofthe magnitudeofparentingachildwhohasspecialneeds.Furthermore,thiswillbean importantadditiontorecruitmentprocessthatmayimpactthehighdissolutionrateof specialneedsadoptions. Theneedformoreeducationisextremelyevidentinthefindingsofthisstudy. Thisincludeseducationforthepotentialparentsaswellaseducationforadoptioncase managers.Oneoftheprimaryfactorsdiscussedbytheadoptiveparentsasessentialto theircomfortlevelofdealingwithspecialneedswastheknowledgetheyhadfromtheir professionalexperiences.Therefore,itisimportantfortheadoptionsystemto recognizetheneedsformorespecializedtrainingofpotentialparentsregardingthe dynamicsofraisingachildwithspecialneeds.Furthermore,anotherpotentialmethod ineducatingpotentialparentsistoprovidethemwithinformationalpamphlets,articles, orgeneralinformationthatwillincreasetheirhealthliteracy.Thisstudyalsodisplayed theimportancethatalifecareplanwillhaveonthepotentialparentsawarenessofthe childsneeds,thusprovidingthemwithindividualizededucationaltoolthatwillalso increasehealthliteracy.Theincreasedhealthliteracywillallowparentstogainaholistic andrealisticviewofthedisabilitythatwillaidtheirdecisionstoadoptachild. Educationoftheadoptioncasemanagersisalsoamajorimplicationofthe findingsfromthisstudy.Thestudyrevealedalackofknowledge,onthepartofthe adoptioncasemanager,regardingtheimplicationofspecialneedsonthechildsfuture.

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199 Thislackofknowledgegreatlyimpactedtheirabilitytoanswerpotentialparents questions,whichledtotheparentsfeelingsuneasyregardingthechildsfutureneeds andtheirabilitytomanagethem.Therefore,parentswouldbelesslikelytoconsider adoptingthatchild.Theevidenceheresupportstheneedforspecializedtrainingfor adoptioncasemanagerswhowillhandlespecialneedsadoptions. Asstatedearlierlifecareplansaredynamicdocumentsthatorganizeaconcise planforthecurrentandfutureneedsofindividualswithdisabilities(Weed,2004). Furthermore,theprimarygoalofthelifecareplanistoeducateitsintendedaudience, assuchthelifecareplaniswelldesignedtoaddresssomeoftheissuesidentifiedby thisstudy.Firstofall,knowledgewasidentifiedasimportantdeterminingfactorin choosingtoadoptachildwhohasspecialneeds.Thelifecareplanwillbeatoolthat adoptioncasemanagerscanprovidepotentialparentsduringtheassessmentprocess inordertoprovidethemwithanindividualizedknowledgeofthechildsneed.This knowledgewillaidtheparentsinmakinganinformeddecisionandprovidethemwith theassurancethatthedisabilityismanageable. Anotherissueidentifiedinthisstudyisthecasemangerslackofunderstanding regardingdisabilityandhowthisimpactstheadoptionprocess.Byimplementingthe useoflifecareplans,theadoptioncasemanagerswillhaveatoolthatwillaidtheir understandingofthechildsneeds.Thisisinstrumentaltoassistingthecasemanagers inadequatelyaddressingpotentialparentsconcernsregardingadoptingachildwith specialneeds. Finally,lifecareplanswillaidtheparentsaftertheadoptionhasbeenfinalized.A majorfindingofthestudywasthelackofsupportanddirectionprovidedtoparentsafter

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200 theadoptionisfinalized.Providingparentswithlifecareplansatthetimeofadoption willaddressthisconcern.Furthermore,itwillempowerparentsinunderstanding, directing,andbeingproactivewiththeirchildscare. Theory Inaccordancewithgroundedtheory,atheoreticalframeworkregardingthe adoptionexperiencewasestablished.TheframeworkwasdiscussedinChapter5,and developedusingBronfenbrennersecologicalsystemstheoryasamodeltoguidethe emergingthemesfromthedata.AccordingtoBronfenbrennerstheory,thedeveloping personsextendedfamilyisoftenplacedwithinthemicroorexosystemoftheir environment.Thisviewtreatstheextendedfamilyasanentityinwhichthedeveloping personcomesintocontactwith.Howeverthisperspectivefailstotakeintoaccountthe culturalattitudesofthesemembers,whichmayalsoimpactthedevelopingperson. Forthepurposeofthisstudy,theresearcherfeltthattheextendedfamilyplayeda largeroleatthemacrosystemleveloftheenvironment,becausetheimpactofthe extendedfamilywasdirectedbytheirculturalattitudes.Soratherthanviewingthe extendedfamilyaspartoftheexosystem,anentitythatinteractswithdeveloping person,thedatasuggeststheimpactoftheextendedfamilywasderivedfromtheir cultural/societalbeliefs.Theparticipantsdidnotdiscusstheirextendedfamilyaspartof thedecisionmakingorprocessofadoption,whicharethevariableswithinthemicroand exosystems.Discussionregardingtheimpactoftheextendedfamilywasnotbrought upbyparticipantsuntildescribingtheirexperienceswhileraisingthechild.The descriptionregardingtheimpactthattheextendedfamilyhadontheadoption experiencesappearedtobedirectlyrelatedtotheextendedfamilysculturalviews.If theextendedfamilysattitudewastobeacceptingofdiversity,thentheimpact

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201 appearedtobeinclusiveandpositivelyshapedtheparticipantsadoptionexperience. Ontheotherhand,iftheparticipantsextendedfamilysattitudeswerebiasedthenthe impactappearedtobebasedonsegregationinwhichthefamilytreatedthebiological andadoptivechildrendifferently.Theconceptoftakingintoaccounttheextended familysculturalattitudesonthedevelopingpersonwouldbydefinitionplacethemwithin themacrosystem. Consideringtheextendedfamilyasacomponentofthemacrosystemisaunique findingbasedonthedatacollectedfromthisstudy.Thisfindinghighlightstheneedsfor ashiftinperspectiveregardingecologicaltheory.Thechangeinperspectivewillimpact theconceptualizationofdatawhenusingtheecologicaltheory.Thereforewhena researcherutilizestheecologicalperspectiveasaframeworkfortheoretical development,theymusttakeintoaccounttheimpactofextendedfamilyscultural attitudesontheexperiencesofthedevelopingperson.Overall,theextendedfamily mayfallbothwithintheexoandmacrosystemsoftheenvironment. Research Thefindingsfromthepilotworkaswellasthisstudyhighlightthefactthatlifecare plansarebothfeasibleandapplicablewithintheadoptionsystem.However,bothof thesestudieswererudimentaryandexploratoryinnaturewiththegoalofestablishing precedencefortheuseoflifecareplans.Theknowledgegainedfromthesestudies supportstheneedforfurtherresearchtocontinuetoexplorethebenefitsandrisks associatedwithlifecareplansduringtheadoptionprocess. Firstitisimportantforfutureresearchtoexploretheapplicabilityoflifecareplans withamorediversesample.Asdiscussedearlieroneoftheprimarylimitationstothis studywasthesamplingtechniquesused.Purposefulsamplingcreatesahomogenous

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202 sample,andforthisstudytheparticipantswerehomogenousingender,geographical location,socioeconomicstatus,andrace.Replicatingthisstudytoincludea demographicallydiversesamplewouldallowforabetterrepresentationofthegeneral population,thereforeincreasingthegeneralizabilityofthefindings. Futureresearchneedstofocusonmethodsofimplementinglifecareplanswithin theadoptionsystem.Thefirststepindoingthisistodevelopastudythatwillexplore theactualimpactthatthelifecareplanhasonadoption.Thefutureresearchwillcreate aframeworkforanadoptionlifecareplanbasedontherecommendationsfromthis study.Themodifiedframeworkwillthenbegiventoparentswhoareconsidering adoptingachildwhohasspecialneeds.Theopinionsontheamountofinformationand thelevelofassistanceprovidedcouldthenbeassessed. Anothermethodofexploringtheimpactofusinglifecareplansduringspecial needsadoptionswouldbetoutilizealongitudinalresearchmodel.Gathering longitudinaldatawouldallowforabetterunderstandingofhowalifecareplannotonly impactsthedecisiontoadopt,buttheoverallsuccessoftheadoption.Thiswillshed lightontheuseoflifecareplansandwillhelpdetermineifutilizingalifecareplanning consultantduringtheadoptionprocesswouldbebeneficial. Aprominentfindingemergingfromthedatawasthecasemanagerslackofhealth literacyanditsnegativeimpactontheadoptionexperience.Therefore,futureresearch needstoexplorepotentialmethodsofeducatingadoptioncasemanagersregarding childrenwithspecialneeds.Moreover,thefindingsalsosupporttheimpactoflow healthliteracyonthepartofpotentialparentsaswell.Futureresearchershouldalso exploremethodsofincreasinghealthliteracyforparentswhoconsideradoption.

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203 Conclusion Thisstudyshedslightonthesomeoftheissuespresentinadoptionsystem. Furthermore,thefindingssupporttheuseoflifecareplanswithspecialneeds adoptions.Thecasemanagersdescribedsomeofthebarriersthattheyhadwitnessed intheirexperiencesofplacingchildrenwithspecialneeds.Thesebarrierswerebased onpotentialparentsopinionofadoptionaswellaswhatitmeanstoraiseachildwith specialneeds.Theidentifiedbarriersaresomeofthereasonsforloweradoptionrates ofchildrenwithspecialneeds. Anumberofareasimportanttoadoptiondecisionmakingandfrustrationsrelated toadoptionofchildrenwithspecialneedswereidentifiedfromtheinterviewswiththe parents.Thisinformationshedslightonareaswherearecurrentadoptionsystemis failingtoprovidethenecessaryinformationandsupporttothosewhochoosetoadopt. Thecombinationofthisinformationalongwiththereportsfromthecasemanager highlightstheneedforacomprehensivetooltoeducateboththeparentsandadoption casemanagers.Oneofthepotentialtoolsislifecareplans.Thispreliminarystudy showedpromisefortheapplicationoflifecareplanswithintheadoptionsystem. Furtherresearchisnecessarytocontinuedevelopmentofanadoptionlifecareplanning model,aswellasexplorethemethodofimplementingthismodelintopractice.

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204 APPENDIXA DISCUSSIONGUIDEFORINDIVIDUALINTERVIEWS Thegoalofthisinterviewistogatherinformationonyourexperienceadoptinga childwhohasspecialneedandyouropinionsontheuseoflifecareplans.Youhave receivedaconsentformtosign,whichindicatesthatyouunderstandyourrightsasa participantandconsenttothisinterview.Theinterviewwillbeaudiorecorded.Iam goingtoaskyouquestionregardingtheadoptionprocessaswellastheuseoflifecare plans.Thereisnorightorwronganswertothequestions,justanswerthequestionsto thebestofyourabilities.Beforewedoyouhaveanyquestions? 1. Whatprocessdidyougothroughinordertoadoptyourchild? a.Whatchallengesdidyouface? 2. Whatmadeyoudecidetoadoptachildwhohasadditionalneeds? 3. Whatinformationwasprovidedtoyoubyadoptionagency? a.Wasthisenoughinformationtoknowwhattoexpect? b.Ifnot,whatadditionalinformationwouldhavebeenhelpful? 4. Whatwasthemainthingyouwantedtoknowaboutwhengoingthroughthe adoptionprocess? 5. Whattypesofquestionswerethecasemanagersunabletoanswerforyou? 6. Whatwasmosthelpfulthingwhenmakingthedecisiontoadoptachildwith specialneeds? 7. Whatisyouropinionofthelifecareplan a.Whatareyourthoughtsontheamountofinformationincludedintheplan? 8. Whatdoyouthinkaboutusinglifecareplansforparentswhoareconsidering adoptingachildwithspecialneeds? 9. Whatchangesifanywouldyoumaketothelifecareplaninordertomakemore suitedtotheadoptionprocess? 10. Isthereanythingelseyouwouldliketoadd?

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205 Igreatlyappreciateyourtimetoparticipateinthisinterview.Theresponsesyou providedwillgiveusvaluableinformationregardingtheadoptionchildrenwithspecial needsandthepotentialuseoflifecareplans.

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206 APPENDIXB DISCUSSIONGUIDEFORFOCUSGROUPS Thisfocusgroupisdesignedtohelpunderstandthechallengesinplacingchildren withspecialneedsinadoptivehomesaswellastogatheryourperceptionsoftheuseof lifecareplansintheadoptionprocess.Yousignedtheconsentformstatingyou understandtheresearchprocessandyourrightsasaparticipant.Thefocusgroupwill bebothaudioandvideorecorded.Iwillbringuptopicsfordiscussionandyouarefree tocommentontheminanywayyouwish.Arethereanyquestions? 1.Whatchallengeshaveyoufacedwhenattemptingtoplacechildrenwithspecial needs? 2.Howisplacingchildrenwithspecialneedsdifferentthanplacingchildrenwithout specialneeds? 3.Whatimpactdoespotentialparentsattitudeshaveontheadoptionprocess? 3a.Inyouropinion,whatcanbedonetochangeparentsperceptionsor attitudes? 4.Whatinformationdoyouprovidetopotentialparents? 5.Inyouropinionwhatisthemostcommonthingparentswanttoknowaboutwhen consideringadoption? 6.Whattypeofinformationseemsmosthelpfulforparentswhentheyconsider adoptingachildwithspecialneeds? 7.Whatthingsdoyounormaldotoprepareafamilytoadoptachildwithspecial needs? 8.Whatisyouropinionofthelifecareplan? 8a.Whatisyourperceptionontheamountofinformationincludedinthelifecare plan? 9.Howdoyouseelifecareplansbeingusedinadoptionprocess? 10.Whatchangesifanywouldyoumaketothelifecareplaninordertomakemore applicabletoadoptionprocess? 11.Isthereanythingthatanyonewouldliketoadd?

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207 Igreatlyappreciateyoutakingtimeoutofyourbusyschedulestoparticipateinthis focusgroup.Theinformationyouhaveprovidedwillhelpunderstandthechallenges facedintheadoptionprocessaswellasthepotentialuseoflifecareplansinthe adoptionsystem.

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208 APPENDIXC SCRIPTFORINTRODUCINGLIFECAREPLANS Alifecareplanisacomprehensivetoolthatorganizesthedisabilityrelatedneeds foranindividual.Thistoolallowsforarealisticunderstandingofthetherapies,medical appointments,andsuppliesrequiredtoadequatelymeettheneedsofanindividualwith aphysicaloremotionaldisability.Byestablishingfutureneedsthelifecareplanwill helpfamiliesprepareforsuppliesormaintenancethatisnecessary.Thelifecareplan isorganizedinto16differentsectionsthatestablishwhatthechildcurrentlyneedsnow andisanticipatedtoneedinthefuture. Youcanlookatthelifecareplanprovided,whichisanexampleofhowtheplans arenormallyorganized.Thechildwasayearoldatthetimetheplanwasdeveloped andhasCerebralPalsyasaresultfetaldistresspriortodelivery.CerebralPalsyis disorderthataffectsthebodymovementandpostureoftheindividual.Commonly peoplewithcerebralpalsyexperienceuncontrollablereflexmovementsintheirlimbsas wellasmuscletightnessthatmayaffectanypartofthebody.Thesampleplanexplains thephysical,medical,andpsychologicalneedsofthechild.Arethereanyquestions regardingthelifecareplan?

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209 APPENDIXD SAMPLELIFECAREPLAN ProjectedEvaluations Item/ServiceAgeYear Frequency/ Replacement PurposeComment DevelopmentalPsychologyBeginning 56/9/04 1X/2-3yearstoage21Evaluatedevelopmental levelsandmonitorfor behavioralproblems Coveredunderthe DevelopmentalDisability Waiver Ending 212020 PsychologicalEvaluationBeginning 52004 1XOnlyAssessfamily'sneedsand formulateacounseling programtoaddressthem CoveredbyStateMedicaid Plan Ending 52004 PhysicalTherapy***Beginning 52004 2X/Yearthroughage21; thereafter1X/year Assessphysicaltherapy program CoveredbyStateMedicaid Plan IDEAwillprovideevaluation forschoolrelatedtasks Ending Lifeexp. OccupationalTherapy***Beginning 52004 2X/Yearthroughage21; thereafter1X/3year Assessoccupational therapyprogram CoveredbyStateMedicaid Plan IDEAwillprovideevaluation forschoolrelatedtasks Ending Lifeexp. SpeechTherapy***Beginning 52004 2X/YearAssessspeechtherapy program CoveredbyStateMedicaid Plan IDEAwillprovideevaluation forschoolrelatedtasks Ending 212020 NutritionalEvaluationBeginning 52004 2X/Yearthroughage 18;then1X/year thereafter Monitornutritionalneeds andmake recommendations Coveredunderthe DevelopmentalDisability Waiver Ending Lifeexp. Servicesnotcoveredunderprojectedevaluationsincludevocationalevaluationanddisableddriverevaluation.

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210 ProjectedTherapeuticModalities Item/ServiceAgeYearFrequency/ Replacement PurposeComment BehavioralAnalysisServices*Beginning 5 1X/weekfor3months now,2X/monthfor3 monthsatages6,8,10, 12,14,16,18,and21 Implementa developmentalstimulation andbehavioral modificationprogramfor caregiverstofollow. Coveredunderthe Developmental DisabilityWaiver CoveredbyCMS LifeExp. FamilyCounselingBeginning 52004 1X/weekfor3months now,2X/monthfor3 monthsatages6,8,10, 12,14,16,18,and21 Tohelpthefamilycope withthesituationand becomingstronger advocates CoveredbyState Medicaid Ending 212020 PhysicalTherapy**Beginning 52004 2X/weekthroughage21 (48weeks/year); thereafter4-6X/year Enhancemuscular developmentandprevent contractures 1X/weeklimitunder Statecovered Medicaid.CMScovers theoverageon services. Ending Lifeexp. OccupationalTherapy**Beginning 52004 2X/weekthroughage21 (48weeks/year); thereafter4-6X/year Cognitiveandvisual stimulationandintroduce adaptivetechnologyto enhancefunctioning 1X/weeklimitunder Statecovered Medicaid.CMScovers theoverageon services. Ending Lifeexp. SpeechTherapy**Beginning 52004 2X/weekthroughage21 (48weeks/year); thereafter4-6X/year Addressspeech,language, andcognitivedeficits 1X/weeklimitunder Statecovered Medicaid.CMScovers theoverageon services. Ending 212020 InsteadofDevelopmentalPsychologistMedicaidcoversBehavioralAnalyst.BehavioralAnalystcanaddressthesamebehavioral modificationissues.Servicesnotcoveredundertherapeuticmodalitieswouldbedisableddrivertraining.

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211 Diagnostic/EducationalTesting Item/ServiceAgeYearFrequency/ Replacement PurposeComment EducationalTestingBeginning 5 1X/yearToassistsupplemental therapistincoordinating withschoolsponsored program CoveredbyCMS Someeducational relatedtestingis coveredbyIDEA Ending 212020 SpecialEducationProgramBeginning 52004 Weeklyeducational program Educationaland therapeuticprogram Specialeducation programsprovidedatthe costofcounty,state,and federalgovernment Ending 212020

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212 HomeFurnishingsandAccessories Item/ServiceAgeYear Frequency/ Replacement PurposeComment NebulizerBeginning 5 1X/3-4yearsTreatmentforBronchial PulmonaryDysplasia CoveredbyState Medicaid CoveredbyCMS Ending 212020 Medication Item/ServiceAgeYearFrequency/ Replacement PurposeComment PrescriptionMedicationBeginning 5 AnnualcostAsprescribedby physician Currentmedicationsare: Albuterolandantibiotics neededpriortodentalvisits secondarytoheartcondition Ending 212020 GenericprescriptionmedicationiscoveredunderMedicaidinsuranceasneeded. HomeCare/FacilityCare Item/ServiceAgeYearFrequency/ Replacement PurposeComment Pre-Age21 RespiteCare(HHA)* Beginning 5 1nightperweekfor4 hours;1weekend/month for36hours(640hours/ year) Preventparentalburnout Coveredunderthe Developmental DisabilityWaiver CoveredbyCMS Ending 212020 Pre-Age21 CaseManagement** Beginning 52004 3-4hours/month(3648hours/year) Coordinateandoversee care CoveredbyCMS CoveredbyState MedicaidPlan Ending 212004 *Limitedto8hoursinone24hourperiodandatotalof720hoursperyear **Limitedto32minutesperday

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213 MedicaidModelforCerebralPalsy FutureMedicalCareRoutine Item/ServiceAgeYearFrequency/ Replacement PurposeComment Pediatrician/InternistBeginning 56/9/04 4X/yearfor15years; 2X/yearthereafter Carerequiredinaddition totheroutinecareall childrenrequired CoveredbyState MedicaidPlan CoveredbyCMS Ending LifeExp. NeurologistBeginning 52004 1-2X/yearMonitorforseizure disorderandother neurologicalproblems CoveredbyState MedicaidPlan CoveredbyCMS Ending LifeExp. OrthopedicsBeginning 52004 2-4X/Yearthrough age15;thereafter 1X/year Monitorbone developmentand contractures CoveredbyState MedicaidPlan CoveredbyCMS Ending Lifeexp. PhysiatristBeginning 52004 1-2X/yearMonitorhabilitationplan, needfortreatmentof spasticity,orthotics CoveredbyState MedicaidPlan CoveredbyCMS Ending Lifeexp. Ophthalmologist*Beginning 52004 2-5X/Yearthrough age10;thereafter 1X/year Monitoreyes,vision,and strabismus CoveredbyState MedicaidPlan CoveredbyCMS Ending Lifeexp. CardiologistBeginning 52004 1-2X/yearMonitorheartcondition CoveredbyState MedicaidPlan CoveredbyCMS Ending Lifeexp. PulmonologistBeginning 56/9/04 2X/yearMonitorbronchial pulmonarydysplasiaand pulmonaryinsufficiency CoveredbyState MedicaidPlan CoveredbyCMS Ending LifeExp.

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214 MedicaidModelforCerebralPalsy FutureMedicalCareRoutine Item/ServiceAgeYearFrequency/ Replacement PurposeComment Otolaryngologist*Beginning 52004 2X/yearthroughage 14;then1X/2-3year throughage21 Monitorforseizure disorderandother neurologicalproblems CoveredbyStateMedicaid Plan CoveredbyCMS Ending 212020 NeurosurgeonBeginning 52004 2X/yearthroughage 20;thereafter1X/year MonitorVPshunt CoveredbyStateMedicaid Plan CoveredbyCMS Ending Lifeexp. PathologylabworkBeginning 52004 2-3X/yearMonitorfunctionswitha CBC,Metabolicpanel CoveredbyStateMedicaid Plan CoveredbyCMS Ending Lifeexp. NeurologicaldiagnosticsBeginning 52004 1X/YearMonitorShuntwithShunt Series,EEG,CTofhead, MRIofBrain CoveredbyStateMedicaid Plan CoveredbyCMS Ending Lifeexp. CardiacDiagnostics**Beginning 52004 Seeindividualtestfor frequency Monitorheartfunctioning withChestX-ray,EKG (1X/year), Echocardiogram (1x/year),stresstests CoveredbyStateMedicaid Plan CoveredbyCMS Ending Lifeexp. PulmonaryFunction testing Beginning 62005 1X/YearMonitorpulmonary functions CoveredbyStateMedicaid Plan CoveredbyCMS Ending Lifeexp. *HearingExamsarelimitedto1every3years;followupvisitstoaddresstubesarecoveredatthesamerate **EKGwasrequestedtwiceayear;howeverisonlycoveredforoneayear

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223 BIOGRAPHICALSKETCH VickyP.Buckles,PhD.,CRC,CCT,RMHCIisagraduateoftherehabilitation sciencedoctoralprogramattheUniversityofFloridaCollegeofPublicHealthand HealthProfessions(Gainesville,Fl.).Dr.Bucklesreceivedhermastersdegreein RehabilitationCounselingfromtheUniversityofFloridain2004.Dr.Bucklesalso receivedherBachelorofSciencedegreeinhealthsciencefromUniversityofFloridain 2002.AccomplishmentsduringDr.Bucklesscareerincludedherbeingarecipientof the2009JohnMuthardAwardforexcellenceinresearchoftheUniversityofFlorida CollegeofPublicHealthandHealthprofessions,DepartmentofRehabilitation Counseling,2009LifeCarePlanningstudentpaperawardwinner.Shealsoreceiveda GraduateTeachingAssistantAwardfromUniversityofFloridaaswell. OverthepastsevenyearsDr.Buckleshasworkedasmentalhealthcounselor withchildren.Dr.BucklesisaCertifiedRehabilitationCounselor,CertifiedClay Therapist,CertifiedAdoptionCompetentTherapist,andRegisteredMentalHealth CounselorIntern.Herexperienceworkingwithchildreniswhathelpedshapedthe currentresearchinterests.WhileinthedoctoralprogramDr.Bucklesworkedasa teachingassistantinmultipleundergraduatecoursesintheHealthScienceProgram. Thisexperienceallowedhertogaintheskillsandknowledgenecessarytoinstruct collegecourses.