Levels of Engagement of Individuals with Intellectual and Developmental Disabilities Living in Community Group Homes

1. Levels of Engagement of Individuals with Intellectual and Developmental Disabilities Living in Community Group Homes RenátaTichá, PhD Sherri Larson, PhD Xueqin (Shirley) Qian, MEd Research and Training Center on Community Living Institute on Community Integration University of Minnesota

2. Agenda • What is the Institute on Community Integration (ICI) • What the Research and Training Center on Community Living (RTC)? • What is Active Support (AS)? • What is engagement? • Overview of the Active Support Project • Report baseline results • Conclusions/summary • Next steps

3. Institute on Community Integration (ICI) • The Institute on Community Integration (ICI) was established in 1985 at the University of Minnesota. We are a federally designated University Center for Excellence in Developmental Disabilities (UCEDD), part of a national network of similar programs in major universities and teaching hospitals across the country. The Institute is home to over 80 projects and 5 Affiliated Centers addressing disability issues across the lifespan. • ICI videoclip • http://www.ici.umn.edu/welcome/default.html

4. Research and Training Center on Community Living (RTC) • Is located within ICI • Provides research, evaluation, training, technical assistance and dissemination to support the aspirations of persons with developmental disabilities to live full, productive and integrated lives in their communities • http://rtc.umn.edu/main/

5. Active Support (AS) Study Background • Randomized control trial testing efficacy of AS intervention • Started in 2008 and finishes this September • Collected baseline data on staff assistance, talk, praise, etc. and social and non-social engagement of 78 people with IDD in 20 community group homes

6. What is Active Support? • A training and organizational approach originally developing in the UK and Australia • Designed to increase capacity of DSPs to plan for and/or engage people in skill development, meaningful daily activities, and new opportunities • Designed to increase levels of engagement in everyday activities of persons being supported

7. Hotel Model

8. Community-Based Services People’s Lives: • Smaller, more typical home settings • Expectations increased (choice, PCP, inclusion), but not specific methods • Focus on Health and Safety remain • Teaching & skills building emphasized more at school • At home: still often bored, depressed, lack of positive roles DSP Roles: • Teacher/instructor • Scheduler/decider • Parental substitute

9. Why Bother with Active Support? Studies have shown that even in community settings: • People supported are often disengaged from their life • Staff time is spent doingfor or to rather than supporting the lives of people with disabilities • High need = Low engagement

10. Engagement • Degree of meaningful involvement in one’s own life • Daily activities • Social interactions • Associated with health and other quality of life outcomes for people with IDD

11. Engagement Example • Videoclip

12. AS Changes the DSP Job • From a “hotel model” (DSPs do things for people) to active support model (DSPs do things with people) • Learn how to think and act beyond 1 day, 1 shift (increased emphasis on planning communicating, & team work) • Learn to incorporate people in every aspect of daily living, right now, regardless of impairment • Shifting of who is “responsible” for things around the house (DSPs help people carry out their responsibilities)

13. Outcomes for People Supported • People have something to do and do less waiting • People are socially engaged as well as physically engaged • People are trying new things • People are using their skills and abilities

14. AS Study Results Overview The following section of my talk will focus on our findings based on the baseline data for 78 participants in 20 community group homes in MN

15. Research Questions • (1) What proportion of the time are individuals with IDD in group homes engaged in meaningful activities? • (2) To what extent individual characteristics, staff behaviors, and house/organizational factors predict overall engagement level?

16. Participants • Individuals with IDD (n=78) • Average age = 41 years old • 53% were male • 23% had mild, 26% moderate, 17% severe, and 35% profound disabilities • 56% used speech for communication, and the rest used AAC • Staff (n=121) • 18% had high school diploma and 18% had a college degree • Supervisors (n=20)

18. Direct Observation Method Tapp, J., Wehby, J. H., & Ellis, D. N. (1992). A multiple option observation system for experimental studies (M.O.O.S.E.S). Nashville, TN: Vanderbilt University.

20. Direct Observation ResultsEngagement and staff assistance

23. Direct observation results: Individuals with disabilities (80 minutes of observations, n=78)

24. Multilevel Results • We found that group variables, i.e. home where the individual lives, is a significant predictor of both nonsocial and social engagement outcomes even after individual variables, e.g. adaptive behavior of consumers, have been accounted for

25. Predicting Nonsocial Engagement • Both adaptive and maladaptive behavior were significant predictors • Overall house effect (random) was also a significant predictor of non-social engagement but no additional level-2 predictors were • The model accounted for 37% of variability between houses

26. Predicting Social Engagement • Adaptive behavior was a significant predictor • Consumer age bordered on being a significant • Staff competence was a significant house-level predictor over and above hour random effect • The model accounted for 22% of variability between houses

27. ICAP Adaptive Behavior Index • Motor skills • Social and communication skills • Personal living skills • Community living skills Main criterion is independence

28. ICAP Maladaptive Index • Hurtful to self • Hurtful to others • Destructive to property • Disruptive behavior • Unusual/repetitive habits • Socially offensive behavior • Withdrawn or inattentive behavior • Uncooperative behavior

29. Study Conclusions • Before an AS intervention is implemented, • only consumer behavior (adaptive and maladaptive) makes a difference in the level of nonsocial engagement of consumers • Consumer adaptive behavior, age, and the way supervisors evaluate their staff competence effects the level of social engagement of consumers

30. What does it all mean? • Engagement in one’s own life provides for a better life quality for people with disabilities • This study has shown that on average people with IDD are engaged in nonsocial activities 35% of the time, only 12% in social interactions • People with more severe disabilities tend to be less engaged overall

31. What does it all mean? Cont. • People with IDD who’s behavior enables them to live more independently are more likely to be engaged in their life while living in community group homes • Younger people with IDD tend to be more socially engaged • Culture of the group home makes a difference in people’s nonsocial and social engagement • People with IDD who have more competent staff tend to be more socially engaged

32. Next Steps • We are in the process of analyzing the data to determine the effectiveness of the Active Support (AS) intervention on consumer engagement in US community group homes over time • We are also looking at the effectiveness of AS on additional outcomes, e.g. staff skills

33. Contact Information • RenátaTichá, PhD, 612.624.5776, tich0018@umn.edu • Sheryl Larson, PhD,612.624.6024 larso072@umn.edu Research and Training Center on Community Living, University of Minnesota, PatteeHall, 150 Pillsbury Drive SE Minneapolis, MN 55455

34. Thank you for joining us! • What else would you like to know?