Academy Health Disability Research Group June 10, 2008 Cindy Guddal, MSW, LISW, CPRP, CBIS

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

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. 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. 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. 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. 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. 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. HCBS Waiver Costs vs. Institutional Care

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. Who Courage Center ILS Serves

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

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 • 2nd Year Participation – small non-parametric effect size .266

18. Purposeful Activity Over 2 Years

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 • 1st year small non-parametric effect sizes .103 to d=.132 • 2nd year small non-parametric effect sizes .175

20. Community Participation over 2 Years

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

22. Housing

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 • 2nd year small non-parametric effect size of .272

24. Quality of Life

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

26. Level of Service over 2 Years

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

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. 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. • 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