Enhancing the Quality of Life of People with Intellectual Disabilities: From Theory to Practice PDF
Preview Enhancing the Quality of Life of People with Intellectual Disabilities: From Theory to Practice
Enhancing the Quality of Life of People with Intellectual Disabilities Social Indicators Research Series Volume 41 GeneralEditor: ALEXC.MICHALOS UniversityofNorthernBritishColumbia, PrinceGeorge,Canada Editors: EDDIENER UniversityofIllinois,Champaign,U.S.A. WOLFGANGGLATZER J.W.GoetheUniversity,FrankfurtamMain,Germany TORBJORNMOUM UniversityofOslo,Norway MIRJAMA.G.SPRANGERS UniversityofAmsterdam,TheNetherlands JOACHIMVOGEL CentralBureauofStatistics,Stockholm,Sweden RUUTVEENHOVEN ErasmusUniversity,Rotterdam,TheNetherlands Thisnewseriesaimstoprovideapublicforumforsingletreatisesandcollectionsofpapersonsocial indicators research that are too long to be published in our journal Social Indicators Research. Like the journal, the book series deals with statistical assessments of the quality of life from a broad perspective.Itwelcomestheresearchonawidevarietyofsubstantiveareas,includinghealth,crime, housing,education,familylife,leisureactivities,transportation,mobility,economics,work,religionand environmentalissues.Theseareasofresearchwillfocusontheimpactofkeyissuessuchashealthon theoverallqualityoflifeandviceversa.Aninternationalreviewboard,consistingofRuutVeenhoven, JoachimVogel,EdDiener,TorbjornMoum,MirjamA.G.SprangersandWolfgangGlatzer,willensure thehighqualityoftheseriesasawhole. Forfuthervolumes: http://www.springer.com/series/6548 Ralph Kober Editor Enhancing the Quality of Life of People with Intellectual Disabilities From Theory to Practice 123 Editor AssociateProf.RalphKober DepartmentofAccountingandFinance MonashUniversity CaulfieldEast VIC3145 Australia [email protected] ISSN1387-6570 ISBN978-90-481-9649-4 e-ISBN978-90-481-9650-0 DOI10.1007/978-90-481-9650-0 SpringerDordrechtHeidelbergLondonNewYork LibraryofCongressControlNumber:2010933253 ©SpringerScience+BusinessMediaB.V.2010 Nopartofthisworkmaybereproduced,storedinaretrievalsystem,ortransmittedinanyformorby anymeans,electronic,mechanical,photocopying,microfilming,recordingorotherwise,withoutwritten permissionfromthePublisher,withtheexceptionofanymaterialsuppliedspecificallyforthepurpose ofbeingenteredandexecutedonacomputersystem,forexclusiveusebythepurchaserofthework. Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Foreword This book brings together contributions from leading international experts in the areaofqualityofliferesearchforpeoplewithintellectualdisabilities.Thoughnot theonlybookfocusingonqualityoflife(QOL)forpeoplewithintellectualdisabil- ities, this is the first in the Social Indicators Research Series. However, that alone does not justify the publication of another book. What is unique about this book is its breadth of coverage, both in terms of its coverage of multiple areas relating to QOL research for people with intellectual disabilities and also its international scope. There are chapters on individual QOL for people with disabilities, as well as the emerging areas of QOL of children with intellectual disabilities and fam- ily quality of life (FQOL). In regards to the international scope of the book, the chaptersincluderesearchrelatingto17countriesofvariousculturalbackgrounds; thesebeingAustralia,Bangladesh,Canada,China,HongKong,Korea,Macedonia, Mongolia,TheNetherlands,Nigeria,Poland,Slovenia,Spain,Taiwan,Thailand,the UK,andtheUnitedStates. The22chaptersincludedinthisbookhavebeencategorizedintofivemainareas. PartsIandIIprovideacomprehensiveoverviewofthegeneralfieldofQOLresearch forindividualswithintellectualdisabilities;thechaptersinPartI(Chapters1to5) dealwithissuesrelatingtothemeasurementanduseofQOLandPartII(Chapters6 and7)followswithtwoliteraturereviews.PartIII(Chapters8–11)focusesoninter- national perspectives relating to individual QOL and comprises four chapters that deal with QOL applications, policies, and practices across four countries (China, The Netherlands, Nigeria, Poland). Part IV (Chapters 12–14) continues the theme of individual QOL, focusing specifically on issues pertaining to the QOL of chil- drenwithintellectualdisabilities.PartV(Chapters15–20)divergesfromindividual QOLtotheemergingareaofFQOLforfamiliesthathaveachildwithanintellectual disability.Thispartcontains chapters thatprovide abroad overview of theareaof FQOL,aswellaschaptersthatfocusonFQOLacrossdifferentcountries(Australia, Canada, Korea, Slovenia, Spain, and Taiwan) and on specific groups (e.g., older- agedfamilieswithadultchildrenwithintellectualdisabilities).Thebookconcludes with Part VI (Chapters 21 and 22) which provides a description of two programs specificallyfocusedonenhancingQOLforpeoplewithintellectualdisabilities. Asmentionedintheprecedingparagraph,PartIcontainschaptersthatrelateto the measurement and use of QOL. In Chapter 1 Robert Schalock discusses both v vi Foreword the measurement of QOL-related personal outcomes and their three primary uses. The author commences by discussing a QOL conceptual and measurement model comprisingofeightdomains.Inrelationtothismodeltheauthoralsosuggestssev- eral guidelines to ensure that the measurement of QOL-related personal outcomes is conceptually and psychometrically sound. The author concludes the chapter by discussingtheuseofQOLas:(i)aframeworkforservicedelivery;(ii)abasisfor evidenced-based practices; and (iii) a catalyst to implement quality improvement programs.Chapter2,writtenbyRobertSchalock,KennethKeith,MiguelVerdugo, andLauraGómez,extendsthediscussiononthemeasurementanduseofQOLfrom Chapter1tofocusonQOLmodeldevelopmentanduseinthefieldofintellectual disabilities. The chapter has four main parts in which the authors: (i) describe the formulation and validation of their model; (ii) describe the operationalization of theirmodel;(iii)suggestcriteriatoevaluateanyempiricallyderivedmodel;and(iv) reportonapplicationsoftheirmodel. Chapters3and4refinethediscussiononmodeldevelopmentbyfocusingspecif- icallyonthedevelopment ofinstrumentstomeasurethequalityoflife(subjective well-being) of people with intellectual disabilities.In Chapter 3 Robert Cummins, Anna Lau, Gareth Davey, and Jane McGillivray present the Personal Wellbeing Index–IntellectualDisability(PWI-ID),aparallelversionoftheregularPWIused forgeneralpopulationsamples.ThePWI-IDscaleisdescribedwithanemphasison formal administrative procedures, and some illustrative results are presented. The authorsconcludethatthePWI-IDrepresentsapsychometricallyvalidinstrumentto measuresubjectivewell-beingforpeoplewithintellectualdisabilities.InChapter4 MiguelVerdugo,LauraGómez,BenitoAria,andRobertSchalockdescribetheQOL IntegralScale;aQOLquestionnairethatassessbothobjectiveandsubjectiveQOL forpeoplewithintellectualdisabilities.TheQOLIntegralScaleisdemonstratedto bepsychometricallyreliableandvalid,leadingtheauthorstoconcludethatthescale isasuitablebasisforthedevelopingperson-centeredplansandqualityimprovement strategiesinorganizations. Having described the development of instruments to assess the quality of life (subjectivewell-being)ofpeoplewithintellectualdisabilitiesinChapters3and4, Chapter5,byRalphKoberandIanEggleton,extendsthediscussionontheuseof qualityoflifebyarguingthatagenciesthatassistpeoplewithintellectualdisabilities can use QOL as one potential measure of performance. This is demonstrated with reference to research conducted on the effect of different methods of employment ontheQOLforpeoplewithintellectualdisabilities. Part II (Chapters 6 and 7) provides two literature reviews relating to quality of lifeforpeoplewithintellectualdisabilities.Chapter6,byGordonLyons,presentsa comprehensivereviewoftheliteratureonQOLforpeoplewithintellectualdisabil- ities.Theauthorprovidesthereaderwithanunderstandingofthisfieldofstudyso astobetterengagewiththeotherchaptersofthisbook.Theauthorcommencesby outlining the evolution of informative conceptual and theoretical perspectives and terms,followedbyasummaryofrelevantresearch.Chapter7,byRalphKobercon- tinueswithareviewoftheliteratureonQOL,butnarrowsitsfocusbyspecifically evaluatingstudiesonemployment.Theauthorprovidesareviewoftheliteratureon Foreword vii the effect of employment on the QOL of people with intellectual disabilities, and whetherQOLdiffersbasedonmethodofemployment. PartIII(Chapters8–11)expandsthefocusonQOLforpeoplewithintellectual disabilitiestoconsiderapplications,policies,andpracticesacrosscountriesofdif- fering cultural backgrounds. In Chapter 8 Alice Schippers explores recent policy development and practice changes in relation to QOL for people with intellectual disabilities in The Netherlands and the European Union. Chapter 9, by Wojciech Otrebski,followswithanexaminationofdifferencesofperceptionsbetweenusers and their parents in relation to their assessment of importance and use of QOL domainsinPoland.Theauthorfindssignificantdifferencesintheperceptionofthe QOLdomainsbetweenserviceusersandtheirparentsandthatimportanceanduse of the QOL domains and their indicators is related to demographic variables. In Chapter 10 Mian Wang provides an overview of QOL research (including FQOL whichisdiscussedinPartV)inChina,anddiscussesanumberofimportantissues regardingapplicationsofQOLandFQOLforaddressingthechallengesthatChina’s specialeducationfaces.Theetic(universal)andemic(culture-bound)propertiesof FQOLarealsodiscussedwithintheChinesecontext.Chapter11,byPatrickEdewor, OluremiAbimbola,andOlujideAdekeye,concludesthispartoninternationalper- spectivesbyexaminingintellectualdisabilityandbeggingintheNigeriancontext. Theauthorsconsidertheinterfacebetweenintellectualdisabilityandbeggingwitha viewtounderstandingthesocio-culturalconditionsthatprecipitatebeggingbypeo- plewithintellectualdisabilitiesinNigeria.Theyconcludebyrecommendingpolicy implementationstrategiesintheareaofeducationtargetedatboththepersonwith theintellectualdisabilityandtheirparents. Part IV (Chapters 12–14) focuses specifically on the issue of QOL of children with intellectual disabilities. The part commences with Chapter 12, by Gordon LyonsandMicheleCassebohm,whichexploresissuesassociatedwithunderstand- ing, assessing, and improving QOL for children with profound intellectual and multipledisabilities.Theauthorspresentgroundedtheoriesregarding:(i)thenature of QOL for children with profound intellectual and multiple disabilities; and (ii) how other people can best come to know these children. The authors believe that QOLcanbediscernedforchildrenwithprofoundintellectualandmultipledisabil- ities, that these children often experience a reasonable QOL, and that their QOL can be improved. In Chapter 13 Joanne Shearer the author presents the results of aninquiryintothelivesofchildrenwithadisabilitywhoattendinclusiveschools. Apersonalaccountofthechildren’sexperiencesatschool,home,andinthecom- munityisprovidedbythechildrenandtheirparentsthroughinterviews.TheQOL ofthesechildrenappearsrich,andtheauthordiscussescircumstancesthatenhance theirlives. Chapter14,byEricEmerson,concludesthepartonQOLforchildrenwithintel- lectualdisabilitieswiththeauthorchallengingthereadertoreflectontherelianceon psychologicalindicatorsofwell-beinginmeasuringQOL.Theauthorcommences with a discussion on the two dominant approaches to conceptualizing and mea- suring the QOL of children with disabilities (social indicators of living conditions comparedwithpsychologicalindicatorsofwell-being).Throughthepresentationof viii Foreword international examples, the author highlights that the two approaches lead to sub- stantiallydifferentconclusionswithregardtotheextentandnatureofdisadvantage experiencedbychildrenwithdisabilities. WhilethefirstfourpartsofthebookfocusedprimarilyontheQOLofindivid- ualswithintellectualdisabilities,PartV(Chapters15–20)focusesontheemerging area of FQOL. FQOL is the study of the QOL of the entire family unit taken as a whole,asopposedtotheseparateQOLofeachindividualthatcomprisesthefam- ily unit. In Chapter 15, Nina Zuna, Jean Ann Summers, Ann Turnbull, Xiaoyi Hu and S. Xu present a unified theory of FQOL for families of children with intel- lectual disabilities. The authors depict FQOL as an interactive process in which individual family member demographics, characteristics, and beliefs interact with family-unitdynamicsandcharacteristicswithinthecontextofindividual-leveland family-level supports, services, and practices. This interactive inner framework of the model is further impacted by federal, state, and local systems, policies, and programs. The chapter concludes with a working theoretical model of FQOL, which serves as a guide for researchers to generate multiple testable theoretical statements. Chapter 16, by Nancy Jokinen and Roy Brown, continues the discussion of FQOL presented in Chapter 15, but focuses specifically on the issue of FQOL in relationtoolder-agedfamilieswithadultchildrenwithintellectualdisabilities.The authors describe the impact of an aging population on countries’ abilities to pro- vide effective services to older-aged families with adult children with intellectual disabilities. The authors highlight research, policy, and practice implications and concludewithrecommendationsforfutureresearchandpractice. InChapter17FionaRillotta,NeilKirby,andJoanneShearerdescribeandcom- paretwoFQOLquestionnaires(theBeachCenterFQOLScaleandtheInternational FQOLSurvey).Theauthorshighlightthefactthatbothsurveysmakeuseofsimilar FQOLdomains,butthatsomedifferencesexistthroughoutthescales.Theauthors demonstrate that, while both surveys resulted in relatively comprehensive FQOL data,somecomponents relevanttoFQOLwereincludedinonesurveybutnotthe other. The authors’ evaluation of these respective instruments supports the impor- tanceofadministeringbothFQOLscalesthroughamixed-methodsinterview.The authors conclude by providing suggestions on how the FQOL measures might be improved to better identify the factors that contribute toward a life of quality for thesefamilies. In keeping with the international nature of this book, the remaining chapters in Part III (Chapters 18–20) focus on FQOL across countries of different cul- tural backgrounds (Australia, Canada, Korea, Spain, Slovenia, and Taiwan). In Chapter18ClimentGiné,MartaGràcia,RosaVilaseca,andAnnaBalcellspresent their research-in-progress which aims to identify what Spanish families with chil- dren with intellectual disability understand by QOL. Based on this, the authors havebegundevelopinganFQOLscalethatwillprovideinformationonthesupport required to ensure that families receive the necessary resources to enhance their FQOL. The work presented in the chapter is still in its development stage, with the authors presenting their general approach and the results of their pilot study. Foreword ix Chapter19,byMajdaSchmidtandRalphKober,providesdatainrelationFQOLin Sloveniawiththeauthorsalsodescribingthecareandsupportsystemsforchildren with intellectual disabilities and their families in Slovenia. The authors highlight the low FQOL scores for Slovene families with a child with an intellectual dis- ability relative to international averages and that FQOL is correlated to financial well-being. WhileChapters18and19lookedatFQOLinrelationtosinglecountries,Chapter 20,byRoyBrown,KeumjaHong,JoanneShearer,MianWang,andShin-yiWang, concludesPartVbypresentingacomprehensivecomparisonofFQOLacrossvar- ious countries (Australia, Canada, Korea, and Taiwan), as well as across different formsofintellectualdisability(autismanddownsyndrome).Theauthorsillustrate how different variables and factors play an important role in our understanding of FQOL. The results presented in the chapter suggest that both internal aspects of family life, including the nature of a child’s disability, and external factors (e.g., community and the types of support available for the family) are highly relevant. Thedatapresentedbytheauthorsstressfamilyvariabilityandthereforeraiseques- tions concerning the flexibility of support and intervention. The authors suggest changes to improve policy and practice for supporting families, while at the same timepositivelyinfluencingtheadaptationofthechildwithanintellectualdisability, andassuchenhancingoverallFQOL. The final part of the book, Part VI (Chapters 21 and 22), relates specifically to enhancing QOL for people with intellectual disabilities. In Chapter 21, Rhonda Faragherarguesthatnumeracy(quantitativeliteracy)isakeyfactorintheenhance- ment of an individual’s QOL, especially those with intellectual disabilities. Given thepotentialcontributionthatnumeracycanhaveonQOL,theauthorbelievesthere is a need for numeracy development to be approached systematically, as opposed to being left to occur by chance. The chapter presents a method of enhancing numeracy, and as such QOL, and the process is explored through a case example. Chapter 22, by Cathy Terrill and James Gardner, concludes the part on enhanc- ing QOL by presenting an account of an organization that closed its sheltered workshops. Instead people with intellectual disabilities were offered a variety of alternativeopportunitieswithincommunitysettings.Theauthorsdescribetheresul- tant increase in QOL and building of social capital. The chapter concludes with guidelinesfordisabilityagenciestoenhanceQOLandbuildsocialcapital. Preface The origins of this book can be traced back to the seventh annual conference of the International Society for Quality of Life Studies (ISQOLS) Conference (Grahamstown,SouthAfrica,17–20July2006)whenIwasapproachedbySpringer toeditabookaspartoftheSocialIndicatorsResearchSeriesrelatingspecificallyto peoplewithdisabilities.Giventhebreadthanddepthofresearchonqualityoflife relatingtopeoplewithdisabilities,itquicklybecameapparentthattherewouldbe insufficientspaceinonebooktocoveralldisabilitytypes,andassuchthedecision wasmadetolimitthefocusofthisbooktointellectualdisabilitieswithfuturebooks potentiallylookingatqualityoflifeinrelationtopeoplewithotherdisabilities. Contributors to this book come mainly from members of the Quality of Life Special Interest Research Group (SIRG) of the International Association for the Scientific Study of Intellectual Disability (IASSID). ISQOLS and the IASSID QualityofLifeSIRGhaveestablishedacooperativerelationshipwiththetwomost recent ISQOLS conferences (San Diego, USA,6–9 December 2007 and Florence, Italy, 19–23 July 2009) having a considerable number of presentations relating to qualityoflifeforpeoplewithdisabilities,withmanyofthecontributorstothisbook presentingpapers. CaulfiledEast,VIC,Australia RalphKober xi
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