1. Effectiveness of a long-term support program for individuals with disabilities living in the community. Academy Health Disability Research Group June 10, 2008 Cindy Guddal, MSW, LISW, CPRP, CBIS

2. 2 Research Objective: Assess the effectiveness of a long-term support program for individuals with disabilities living in the community. Retrospective cohort analysis 116 individuals participating 2 years or more in the Independent Living Skills Program at Courage Center, a nonprofit community-based rehabilitation and resource center in Minneapolis.

3. 3 Outcomes Achieved Improving housing status Increasing community participation Increasing participation in purposeful activity Improving quality of life. Decreasing Level of Service

4. 4 The Independent Living Skills Program Courage’s Independent Living Skills (ILS) Program began in 1989 with the advent of Medicaid Waiver funding in Minnesota Started with.5 FTE ILS Specialist First ILS Provider in Hennepin County Demonstrated consistent growth since 1989 Now serve over current 400 clients, and almost 500 per year with a staff of 30, including 2 supervisors.

5. 5 Service Model Comprehensive Skills and Needs Assessment Provide independent living skills training, education and ongoing support in the client’s home or community Individualized Service Plans developed and updated every six months Person-Centered approach Active involvement of supervisor

6. 6 Service Plan Goals Household and financial management Accessing and maintaining accessible, affordable housing Compensation strategies for memory loss and impaired executive functioning Nutrition management Accessing the community Planning and accessing leisure and work opportunities Managing healthcare and service provider needs

7. 7 Funding Minnesota’s Medicaid Home and Community Based Services Waiver Programs including the Community Alternative for Disabled Individuals (CADI) and Traumatic Brain Injury Waivers (TBI) –No access to similar services in other states’ Medicaid Waiver Programs. Veteran’s Administration for TBI survivors Worker’s Compensation School Districts for Transition Student Assessments.

8. 8 Statewide Cost of Services 2005 CADI Waiver Served 9077 individuals statewide Total expenditures: $149, 216,669 2,439 clients used ILS services (27% of total CADI clients) which cost $13,493,448 or 9% of total expenditures (Minnesota Department of Human Services, 2005)

9. 9 Statewide Cost of Services 2005 TBI Waiver Served 1164 individuals statewide Total expenditures: $64,331,932 437 clients used ILS services (18% of total TBI waiver clients) which cost $2,981,437 or 5% of total expenditures (Minnesota Department of Human Services, 2005)

10. 10 HCBS Waiver Costs vs. Institutional Care

11. 11 Who Courage Center ILS Serves Average age = 44. Range = 20-69 58% Female Race Caucasian: 70% African American: 18% Other: 12% Chronic disabilities: onset date averages over 5 years prior to involvement in the program All clients considered at-risk for nursing home placement or institutionalization

12. 12 Who Courage Center ILS Serves

13. 13 Additional Risks for Client Population Incidence of Symptoms of Head Injury in Minnesota’s Homeless Population (Owen, 2006): –33% for all homeless adults –40 % for adults who have been homeless more than one year. Incidence of Brain Injury among jail inmates (Slaughter, Fann, & Ehde, 2003, Brain Injury): –22-86%, depending on setting and definition of brain injury

14. 14 Study Design Outcome Tool administered at admission and once per year every year that client is receiving services. Measured 5 areas: –Housing Status: affordable, accessible housing with appropriate supports –Community Participation –Involvement in Purposeful Activity –Quality of Life –Level of Service

15. 15 Study Population 116 individuals who received services 1-2 years 43 individuals who received services 2-3 years. Did not differ in terms of demographics from our current client population

16. 16 Results Improvement in: Purposeful Activity Community Participation Housing Status Quality of Life Level of Service

17. 17 Purposeful Activity Purposeful Activity includes work, school, classes, day programs, structured activity. Involvement in the Independent Living Skills program for more than one year resulted in significant improvements in levels of purposeful activity (p =.005, Wilcoxon Signed Ranks Test –1st Year Participation – small to medium non- parametric effect sizes.381 to.317 –2 nd Year Participation – small non-parametric effect size.266

18. 18 Purposeful Activity Over 2 Years

19. 19 Community Participation Community Participation includes any activity in the community without the presence of ILS staff, ie clubs, restaurants, stores, community events, church, etc. A trend towards an increase in community participation –1 st year small non-parametric effect sizes.103 to d=.132 –2 nd year small non-parametric effect sizes.175

20. 20 Community Participation over 2 Years

21. 21 Housing a significant improvement in accessible, affordable housing with appropriate supports in an acceptable location (p =.038, Wilcoxon Signed Ranks Test 2 nd year small non-parametric effect size of.272

22. 22 Housing

23. 23 Quality of Life After two years of participation in the Independent Living Skills program, there was also a significant improvement in self- defined quality of life (p =.048, Wilcoxon Signed Ranks Test –2 nd year small non-parametric effect size of.272

24. 24 Quality of Life

25. 25 Level of Service In the first year of the program, clients’ level of service decreased significantly (p =.009, Wilcoxon Signed Ranks Test) –1 st year small non-parametric effect size of.206 to.246 –2 nd year small non-parametric effect size of.263

26. 26 Level of Service over 2 Years

27. 27 Correlations Quality of life scores were moderately correlated (r =.389, p =.01) to housing level.

28. 28 Implications for policy, service delivery or practice: Importance of ILS in achieving and preserving community based placement vs. institutional settings Possible expansion to other states, especially for individuals with Brain Injury Expansion of availability to veterans with TBI who are living in other parts of the country

29. 29 Bibliography Minnesota Department of Human Services (2005) Resource Availability and Utilization In the Home and Community-Based Services Waivers For People Meeting Hospital or Nursing Facility Level of Care. Minnesota Department of Human Services (2008) Center for Medicare and Medicaid Services (CMS) 372 Report Owen, G. (2006). Overview of homelessness in Minnesota 2006. Wilder Research, www.wilder.org.www.wilder.org Slaughter, B., Fann, J. R. & Ehde, D. (2003). Traumatic brain injury in a county jail population: Prevalence, neuropsychological functioning, and psychiatric disorders. Brain Injury, 17, 731-741.

30. Contact Info: Cindy Guddal, MSW, LISW, CPRP, CBIS, Community Based Services Program Director Courage Center, Minneapolis, MN www.couragecenter.org cindyg@couragecenter.org 763-520-0378