Quality of Life and Costs in Disabled Individuals' Residential Arrangements in Hungary

1. New dimension in social protection towards community based livingQuality of Life and Costs of Living and Services of Disabled People in Various Residential Arrangements in Hungary (VP/2013/013/0057) Anikó Bernát, Bori Simonovits, Ágnes Kozma, MariannaKopasz, Zsolt Bugarszki, Tamás Verdes TÁRKI Social Research Institute 17 July 2016

2. Commissioned by the Equal Opportunities of Persons with Disabilities Non-profit Ltd. (FSZK) andHand in Hand Foundation (Kézenfogva Alapítvány) • Objectives: (1) to examine and compare the quality of life of adults with disabilities living in various residential arrangements; (2) to analyse the cost-effectiveness of the three residential arrangements in terms of social care provision. • Target groups: (1) adults with intellectual disabilities, (2) adults with autism (ASD) (3) adults with profound intellectual and multiple disabilities (4) adults with psychosocial disabilities (schizophrenia) • Residential arrangements: (1) larger residential institutions, (2) smaller group homes and (3) private households • Time frame: March 2015 – January 2016

3. Data on each individual was collected using three questionnaires • A self-report “client questionnaire”: • the respondent’s subjective well-being in eight quality of life domains and some basic socio-demographic characteristics and personal opinion; • Answered by the clients themselves or with the help of a „translator” carer upon request • A “carer questionnaire”: • answered by a carer (paid or unpaid/family carer) who knows the client and their everyday life well; • provides information on the living conditions, infrastructure and some aspects of objective quality of life of the individual and it repeats the questions on quality of life from the “client questionnaire”; • A “manager/head of household questionnaire”: • answered by someone who is familiar with the financial situation – budget, income, spending etc. – of the setting where the participant lives (i.e. institution, group home, or private household). • On the costs and infrastructure of the social provision and care of the client

4. Methodology and methodological constrains Sampling and recruitment of the participants • Stratified sample, but ot representative (but location and client profile of the institutions and group homes has been taken into consideration) • Various channels for recruiting private hhs: day service providers, advocacy organizations • Serious selection bias in all residential arrangements and target groups – different case mix (by age, gender, degree of disability) in the different residential arrangements • In order to eliminate bias: matching of cases was carried out after the data collection on the basis of : • Intellectual disabilities and autism sub-samples: adaptive behaviour (i.e. the collection of practical and social skills used in everyday life) that is considered a key determinant of quality of life for people with intellectual disabilities (Mansell 1996). • People with psychosocial disabilities (schizoprenia): average age(due to the lack of information on the time of the first diagnosis)

5. Limitations of international comparison • 3 residential arrangements (HU) ↔ typically 2 arrangements are compared (institutions and group homes) • 4 target groups (HU) ↔ international research examples typically focus on 1 target groups

6. Experiences from Previous research and studies

7. Why involve people with disabilities directly? • Collection of quantitative data has traditionally been limited to proxy-report. • Empowerment and recognition of the lived experiences of people with IDD is important. • Quality of life is not only about objective circumstances, but subjective aspects are equally important.

8. Some issues and challenges in using self-report with people with IDD • Difficulties with time and quantitative judgements; direct comparisons; socially reflexive questions; abstract concepts and generalised judgements; unfamiliar or sensitive content; multiple-choice formats. • Can lead to bias, such as acquiescence bias, last/first choice responding etc. The self-report questionnaires were extensively piloted with people with different disabilities and in different residential arrangements. As a result: • Number of QoL items reduced from 48 to 16 items (2 per domain). • Response scale changed from a 4-level frequency scale to a simple Yes/No/So-so.

9. HOW TO MEASURE QUALITY OF LIFE? • In the initial phases of the study the research team reviewed different quality of life and life satisfaction questionnaires for people with disabilities developed and used in other countries. • As we could not identify a single instrument that met the requirements of our study and could have been readily adapted to the Hungarian context. • Therefore we relied on a number of existing instruments that all had in common that are based on the internationally accepted conceptualisation of quality of life (QoL)

10. Based on (Schalock et al. 2002): cover all eight domains These QoL domains have been validated both in terms of internal structure and stability by various international studies(see e.g. Verdugo et al. 2005) and in different cultural contexts (Schalock et al. 2005). In Hungary we developed a scale of 16 item scale (2 items per domains) (1) emotional well-being (2) material well-being (3) interpersonal relations (4) personal development (5) physical well-being (6) self-determination (7) social inclusion (8) rights

11. Quality of life of people with intellectual disabilities

12. QoL: Significant differences by residential arrangement

13. Complex indicator of QoL: Significant differences: • By residential arrangement: higher scores in small group homes, lower in households • Adaptive behaviour: the more independent, the more satisfied with QoL • LM status: the actives are more satisfied QoL: Significant differences by residential arrangement

14. Labour market participation • Average working time: 5 hours / day • typically within sheltered vocational rehabilitation programmes (66%) • smaller share in vocational activity organised by social care providers (24%) • licensed employment (7%) and vocational therapy (3%)

15. Receipt of professional or clinical services by type of residential arrangement

16. Quality of life of people with autism

17. QoL: significant differences by residential arrangement

18. Complex indicator of QoL – significant differences • By residential arrangement: QoL is slightly better in group homes than in families, but the difference is not significant statistically! • Adaptive behaviour: the more independent, the more satisfied with QoL • Education: the higher the educational level attained the more satisfied with QoL

19. Labour market participation • Average working time: 5 hours / day • typically within sheltered vocational rehabilitation programmes (53%) • smaller share in vocational activity organised by social care providers (21%) • vocational therapy (12%) • licensed employment (7%)

20. Receipt of professional or clinical services by type of residential arrangement

21. Quality of life of people with profound intellectual and multiple disabilities

22. QoL: significant differences by residential arrangement

23. QoL: significant differences by residential arrangement

24. Complex indicator of QoL – significant differences • By residential arrangement: no differences! • Adaptive behaviour: the more independent, the more satisfied with QoL • Education: the higher the educational level attained the more satisfied with QoL

25. Labour market participation • Only 11% are active! • Average working time: 4 hours / day • typically within sheltered vocational rehabilitation programmes (53%) • smaller share in vocational activity organised by social care providers (21%) • vocational therapy (16%) • licensed employment (11%)

26. Receipt of professional or clinical services by type of residential arrangement

27. Quality of life of people with schizophrenia

28. QoL: significant differences by residential arrangements

29. QoL: significant differences by residential arrangements Complex indicator of QoL – significant differences: • residential arrangement: highest level in small group homes, lowest level in institution • LM status: actives are more satisfied

30. Labour market participation • Average working time: 4.5 hours

31. Receipt of professional or clinical services by type of residential arrangement

32. Costs of care by residential arrangements

33. Challenge: making the household and institutional budgets comparable Research design: • In family homes (private households): questionnaire on the expenditures and incomes of the hh, answered by the head of hh – face-to-face interview • In institutions and small group homes: questionnaire on the expenditures and revenues of the institution, answered by the leader of the institution – online questionnaire Major categories of budget (institutions), (based on Knapp et al. 2008): • Facility management costs (catering, cleaning etc.) • Salary of the professional staff • Overhead (administration etc.) • Capital (buildings and durable equipment, supplies)

34. Limitations • Costs of professional or clinical services can be included only among the outcomes of QoL, but not in the budget as many of such services are provided by external agents and thus not included in the budget of the institutions. • The cost of care is appears explicitly in the budget of the institutions but it is a hidden item in the budget of the hhs → foregone income due to absence from work would better be included in hh budget • Cost of capital: often not included in cost analysis, our survey also lacks it.

35. Results of the cost analysisby residential arrangements • Living in family home is the cheapest in each of the 4 target groups (approx. 60% of the costs of care in institutions / small group homes), but families use less services • Recommendation: ensure better availability to services for those living in family homes.

36. Limitations of the research; recommendations • The target groups should be defined more narrowly in order to use more sophisticated research tools – QoL in family homes and institutions should be examined separately • Differences in institutional characteristics of institutions providing various residential services make comparisons between the forms of residential arrangemets difficult; . • Full service packages might be priced tailored to specific needs of the respondents, these could cover both in house and external services

37. Thank you for your attention!

38. A kérdezettek megoszlása célcsoportok és célterületek szerint

39. A kutatás megvalósult illesztett mintája (N)

40. A költségadatok hozzáférhetősége - a központosításból fakadó korlátok (a szükséges adatok egy része az intézményeknél, másik része, pl. a könyvelés az intézményfenntartónál) • a bentlakásos ellátórendszer szervezetéből adódó korlátok: integrált intézmények problémája (tagintézményi vs intézményrendszer egészére vonatkozó adatok) • a három lakhatási forma összehasonlíthatóvá tétele miatt előálló további nehézségek; idő- és erőforrás-igényes válaszadás Következmények: • alacsonyabb válaszadási hajlandóság és hiányosan kitöltött intézményvezetői kérdőívek • inkonzisztencia előfordulása az adatokban (pl. tagintézményre vonatkozó lakólétszám integrált intézményre vonatkozó személyzeti és költségadatokkal). • a kiinduló számhoz mérten jelentős csökkenés az elemezhető intézmények számában.

41. Az értelmi fogyatékosok ellátása költségei és az intézményi önköltség (Ft/fő/hó) Megjegyzés: a családon belüli gondozás miatti kieső jövedelmet kétféleképpen is megbecsültük. Az ábrán a magasabb becsült összeget tüntettük fel.

42. Az értelmi fogyatékosok ellátási költségei a költségkategóriák szerint (Ft/fő/hó) Megjegyzés: a családon belüli gondozás miatti kieső jövedelmet kétféleképpen is megbecsültük. Az ábrán a magasabb becsült összeget tüntettük fel.

43. A lakhatási formák költséghatékonysága • A nagy létszámú intézetekben és a lakóotthonokban az ellátási költségek között mutatkozó különbség nem számottevő. • Társadalmi szempontból a családon belüli lakhatás kerül a legkevesebbe. • Ugyanakkor a családban élők életminősége a legalacsonyabb - az összevont életminőség mutató, - a szolgáltatások igénybevétele és - a foglalkoztatottság alapján is (bár itt az összefüggés statisztikailag nem szignifikáns) • Javaslat: a családban élők szolgáltatásokhoz való hozzájutásának javítására indokolt erőforrásokat fordítani.

44. Az autizmus spektrumzavarral élők ellátási költségei és az intézményi önköltség (Ft/fő/hó) Megjegyzés: a családon belüli gondozás miatti kieső jövedelmet kétféleképpen is megbecsültük. Az ábrán a magasabb becsült összeget tüntettük fel.

45. A lakhatási formák költséghatékonysága • A lakóotthonok lakói körében magasabb társadalmi költség mellett magasabb a szolgáltatások igénybevétele és a foglalkoztatás. • Javaslat: társadalmi szempontból indokolt a családban élők számára a szolgáltatások és a foglalkoztatási lehetőségek elérhetőségének javítása.

46. A súlyosan, halmozottan fogyatékos emberek ellátási költségei és az intézményi önköltség (Ft/fő/hó) Megjegyzés: a családon belüli gondozás miatti kieső jövedelmet kétféleképpen is megbecsültük. Az ábrán a magasabb becsült összeget tüntettük fel.

47. Skizofrénia diagnózissal élő célcsoport • nagy létszámú intézetek és lakóotthonok szerves összekapcsolódása • elkülönült költségvetés hiánya (lásd még ehhez: Hronyecz és Mátics 2003) → a lakhatási formák költségeinek összehasonlítása kevéssé releváns és a jelen körülmények között nem megvalósítható. • gondozást-segítést igénylők aránya igen alacsony!