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

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

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.national network ICI videoclip –

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

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

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 6

Hotel Model

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

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 doing for or to rather than supporting the lives of people with disabilities High need = Low engagement

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

Engagement Example Videoclip 11

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) 12

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 13

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

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?

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)

VariableMeasures Social engagementDirect observation Nonsocial engagementDirect observation Staff assistanceDirect observation Adaptive behaviorThe Inventory for Client and Agency Planning (ICAP). Maladaptive behaviorICAP AgeICAP TenureReported by supervisors Turnovercalculated by dividing the number of staff left in the last 12 months by the sum of current staff and number of staff needed to fill the vacancy (Larson et al., 1998). Staff competenceDirect Support Professional Competency Assessment Management practiceManagement Practice Questionnaire (Mansell, 1995)

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.

Direct Observation Results Engagement and staff assistance Level of Intellectual Impairment n Social Engagement Nonsocial Engagement Staff Assistance Mild (19.28)46.92 (23.22)3.27 (4.26) Moderate (12.30)47.74 (19.39)5.19 (6.05) Severe (5.19)27.86 (21.01)4.60 (4.14) Profound (9.21)20.49 (22.89)4.04 (5.10) Total (15.14)35.01 (24.72)4.19 (4.92)

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

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

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

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

ICAP Adaptive Behavior Index 1.Motor skills 2.Social and communication skills 3.Personal living skills 4.Community living skills Main criterion is independence

ICAP Maladaptive Index 1.Hurtful to self 2.Hurtful to others 3.Destructive to property 4.Disruptive behavior 5.Unusual/repetitive habits 6.Socially offensive behavior 7.Withdrawn or inattentive behavior 8.Uncooperative behavior

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

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

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

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

Contact Information Renáta Tichá, PhD, , Sheryl Larson, PhD, Research and Training Center on Community Living, University of Minnesota, Pattee Hall, 150 Pillsbury Drive SE Minneapolis, MN

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