Participation: Lessons from the past, hope for the future

1. Participation: Lessons from the past, hope for the future Roger J. Stancliffe Centre for Developmental Disability Studies, University of Sydney, and Research and Training Center on Community Living, University of Minnesota

2. Participation • An individual enjoys the benefits of society by participating in that society. • In this paper I argue that: • Participation in all aspects of life is essential for a full life. • Skills and independence are acquired and maintained through consistent participation and practice in real-life settings. • Support should be needs-based because too little and too much support can both be detrimental.

3. Question • What support is needed to facilitate participation so that people can enjoy a full life?

4. Research on Participation • Milder disability is associated with higher levels of participation • Different living arrangements are associated with differing levels of participation • Why is this so?

5. Ability, independence and participation • People with milder disability generally need less support and can do more things independently. • Being independent is related to higher levels of participation (and self-determination), probably because you don’t need to wait for assistance before participating.

6. Independence and participation(unpublished data from the Minnesota Longitudinal Study) • Participants who undertook one or more activities by themselves were contrasted with individuals who participated in all activities with support. • Those who participated independently took part in significantly more community and more domestic activities(even after differences in ability were taken into account statistically).

7. Independence and participation(unpublished data from the Minnesota Longitudinal Study) • For specific activities, people who participated independently in that activity did so significantly more often. ACTIVITY INDEPENDENT WITH SUPPORT Hobbies 18.8 7.8 Magazines/ 18.8 0.0 books

8. Independence and participation(Stancliffe, Dew, Gonzalez & Atkinson, 2001) • In a study of Australian group homes, Stancliffe et al. (2001) found independent community participation was linked to significantly more frequent participation. ACTIVITY INDEPENDENT WITH SUPPORT Small, local shops 31.8 16.3 Public transport 25.4 12.1

9. Why is participation important

10. John O’Brien’s Five Accomplishments • Presence and participation in community life. • Developing and maintaining relationships with friends and family. • Making choices and expressing preferences. • Gaining personal dignity and being afforded respect. • Exercising and developing personal competence.

11. A Fulfilling Life • A person can only take the journey down the paths defined by the 5 accomplishments by being engaged in activities.

12. Participation is also important because: • Independence and competence are supported by regular opportunities to apply one’s skills, so day-to-day participation is essential.

13. Supermarket Shopping • Levine and Langness (1985) found competence at supermarket shopping was unrelated to age, sex, IQ, or amount of training. • The most competent shoppers were those whose circumstances required them to shop independently as adults.

14. Skills and Independent Living • Lozano (1993) examined the the relationship between • independent living training • independent living skills • success at independent living • Lozano analysed data on 2500 people living independently in California over an 8 year period

15. Lozano (1993): Findings • Lozano looked at changes in independent living skills over time and compared those whose skills improved or stayed the same with those whose skills declined • People who improved or maintained their skills were more likely to continue living in their own homes

16. Lozano (1993): Findings • Individuals who received support services were 58% more likley to continue living in their own home (compared to those with no support services). • But the amount of independent living services was not associated with improving or maintaining independent living skills

17. Lozano (1993): Findings • Lozano found that the real experience of independent living accounted for improvement or maintenance of skills, not the amount of independent living skills training. • Effective support involved social, emotional and practical support, not a predominant focus on skills training.

18. Conclusions • This challenges the skills-training/readiness approach to independent living. • Lozano concluded that : “the question for individuals with developmental disabilities should, therefore, not be whether they have the skills to live on their own, but rather, how the systems created to serve them can provide the necessary supports to enable them to do so”

19. Conclusions • Lozano criticised skills-based screening as a means of determining who should live independently, and recommended that emphasis should instead be on an individual’s desire to live in their own home • “the longer the move to independent living is delayed, the longer individuals are denied a critical opportunity to acquire skills that are derived from practical experience”

20. Opportunities and Financial Decision Making • In the UK, Suto, Clare, Holland, and Watson (2005) showed that: • basic financial understanding and • everyday decision-making opportunities • were both crucial for maximising financial decision-making abilities.

21. Choice • Stancliffe (1997) found that individuals living in settings with less staff presence, such as semi-independent living, (i.e., with periods with no staff present) exercised more choice. • This finding has been replicated by studies in the US and UK.

22. Semi-independent living and staff support • Stancliffe (2005) and Stancliffe & Keane (2000) found better outcomes in semi-independent settings than group-homes, particularly on outcomes involving independent participation. • Yet individuals living semi-independently receive vastly less staff support than those from group homes.

23. Semi-independent living and staff support • Stancliffe (2005) argued that because of frequent staff absence, semi-independent living not only provided opportunities for independent participation, it demanded such participation. • The opportunities provided by day-to-day practical experience were crucial to promoting independence.

24. Semi-independent living in England • Like Australia, the UK has overused fully staffed group homes as the major type of community living provision. Curtis and Netten (2005) estimated the average cost per place as £52,884 ($Au130,063). • UK research suggests that the level of staff support and the resulting service cost are not needs based (i.e., people with more severe disability do not necessarily receive more intensive staffing).

25. Semi-independent living in England • Perry et al. (2006) compared matched groups of people living semi-independently or in fully staffed group homes in settings with 1-3 residents (most SI residents lived alone) • The two groups had greatly differing levels of staff support: • Group home – 76.8 hours per resident per week • Semi-independent – 13.3 hours

26. Perry et al. (2006) found • No difference (17 outcomes): • Physical living environment (home-likeness) • Physical wellbeing • Receipt of health services • Accidents, exploitation or abuse • Frequency and variety of social activities • Frequency and variety of community activities (ICI scale) • Size of social network • Inclusion of family members in social network • Frequency of contact with family and with friends

27. Perry et al. (2006) found • No difference: • Loneliness • Lifestyle satisfaction • Hospital service costs • Generic community services costs (e.g., doctor, dentist etc.)

28. Perry et al. (2006) found • Difference favouring semi-independent (9 outcomes): • Frequency of community activities without staff support • Having people in one’s social network other than family, staff, and other people with ID • Participation in domestic activities • Choice (on both the Choice Scale and the Choice Questionnaire) • Daytime activity costs • Total non-accommodation costs • Accommodation costs (3.35 times higher in group homes) • Total cost of all services (2.84 times higher in group homes)

29. Perry et al. (2006) found • Difference favouring group homes (5 outcomes): • Problems with money management • Have a garden (SI group much more likely to live in a flat) • Eye test in the last 2 years • Healthy lifestyle – (lifestyle factors such as smoking, diet, alcohol & exercise) • Greater range of community activities (only on 1 of 2 measures and only for 1 or 2 comparisons)

30. Perry et al. (2006) concluded • Poorer outcomes for semi-independent living on healthy lifestyle and money management, but most individuals still had good outcomes (“money management … difficulties were relatively minor”, p. 27). These are issues that could be corrected with appropriate support. • “On balance, we conclude in favour of the cost effectiveness of SI living” (p. 27)

31. Perry et al. (2006) concluded re staff presence • “Put simply, people living with only partial staff support conduct their home and community lives more independently than people living with constant support. This is not due to differences in independent capability but due to the inhibiting effect of staff presence” (p. 27)

32. Perry et al. (2006) concluded re staff presence • “living with greater staff presence in a setting geared to a lower level of independence would constrain outcomes concerned with self-determination and the conduct of activities independently” (p. 31)

33. Personal Outcomes in the USA • Gardner and Carran (2005) examined 3630 interviews using The Council’s Personal Outcomes Measures • The Personal Outcomes Measures consist of 25 items organised in 7 domains

34. IDENTITY: People choose where and with whom they live. AUTONOMY: People use their environments. AFFILIATION: People participate in the life of the community. ATTAINMENT: People choose services. SAFEGUARDS: People are safe. RIGHTS: People are treated fairly. HEALTH & WELLNESS: People are free from abuse and neglect. Personal Outcomes Measures: Domains and items

36. Interpretation • The different pattern of outcomes across residence types shows that there was an interaction between ability and residence type • People with mild/moderate disability did best living (semi-)independently (80%) whereas those with severe/profound disability did worst living (semi-) independently (52%)

38. It is notable that Gardner and Carran (2005) found that people with mild to moderate disability did worst in supervised settings (such as group homes, hostels and institutions). • One factor in the poorer outcome in fully staffed settings is likely to be the inhibiting effect of constant staff presence.

39. Conclusion • Regularly undertaking activities independent of (staff) support is associated with skill development and achievement of personal outcomes for people with lower support needs, but not for those with severe disability, who instead require active support from caregivers for successful participation in meaningful activities.

40. Needs-based support • Low levels of staff support in independent living may facilitate independence and better outcomes for people with milder disability • BUT independent living provides insufficient support (better seen as neglect) for people with more severe disability to attain personal outcomes.

41. Active Support

42. Active Support • By contrast to semi-independent living, Active Support seeks to improve participation among group home residents by training staff to: • provide more opportunities for meaningful participation • spend more staff time supporting resident participation • learn skills to provide more effective support for participation

43. The Active Support Model People participate in everyday activities with support

44. Support and Participation • Basic issue about howsupport is provided. Staff can do things for residents or can do those same activities with residents and support them to participate.

45. Active Support Research • A fundamental reason for implementing Active Support is the well-documented low level of participation in activities by group-home residents, especially by people with severe intellectual disability. • To date, Active Support research has taken place in group homes and has mostly involved people with more severe intellectual disability.

46. Active Support Research Findings • Active support research has shown that improvements in service-user participation are related to: • increases in the amount of time staff spend providing support for participation (amount of support) • increases in non-verbal assistance (type of support)

47. Active Support Research Findings • That is, greater participation is associated with more staff assistance and more appropriate staff assistance

48. Paradox? • How do we reconcile these findings? • Research on semi-independent living suggests that people do better when they have to deal with the day-to-day demands of independent living with only limited support and without the inhibiting effect of constant staff presence.

49. Paradox? • Yet people with more severe disability do poorly with little support, and experience better outcomes when effective support is increased.

50. Needs-based support • The issue seems to be one of matching support to the person’s needs • providing enough assistance in areas where it is needed without infringing on autonomy by interfering in matters with which the person needs no help.