June 20, 2014

1. What Are We Waiting for? Waiver Supported Services Needed by Individuals and their CaregiversPresentation of Full Report June 20, 2014

2. Acknowledgements • Waiting list study was sponsored by the Ohio Developmental Disabilities Council (ODDC). • The project term was January, 2013 thru March, 2014. • Collaborative effort between ODDC, GRC, Kent State, DODD and other stakeholders. www.grc.osu.edu

3. Waiting List Panel Members • Neil Castilow Ohio Developmental Disabilities Council • Gregory Gibson Kent State University • Kate Haller Ohio Department of Developmental Disabilities • Paul Jarvis Ohio Developmental Disabilities Council • Carolyn Knight Ohio Developmental Disabilities Council • Laura Leach Ohio Department of Medicaid • John Martin Ohio Department of Developmental Disabilities • Hope McGonigleOhio Department of Developmental Disabilities • Steve Oster Knox/Coshocton County Boards of Developmental Disabilities • Roxanne Richardson Ohio Department of Developmental Disabilities • Richard Serpe Kent State University • Patrick Stephan Ohio Department of Developmental Disabilities • Gregory Swart Ohio Department of Developmental Disabilities • Yolanda Talley Ohio Department of Medicaid • Dee Tobias Ohio Developmental Disabilities Council

4. Agenda • Project Background • Project Objectives • Methodology • Results: Waiting List Database • Results: Survey Data • Data Limitations • Project Summary

5. Project Background • In Ohio, County Boards of Developmental Disabilities manage waiting lists for the Individual Options, Level 1, and Self-Empowered Life Funding waivers. • As of June 2013, there were 41,260 unduplicated individuals actively on a waiver waiting list across Ohio. • Unfortunately, current data indicates the waiver requested but do not reveal the specific needs of individuals. • The Waiting List Study was designed to understand the current and future needs of individuals on waiver waiting lists.

6. Project Objectives • Provide general demographics for the waiting list population by analyzing the available data on individuals currently on the waiting list. • Understand the specific needs of individuals on the waiting list.

7. Results: Waiting List Data Figure 1: Median Waiting List Times by Age Category www.grc.osu.edu

8. Results: Waiting List Data Figure 3: Median Waiting List Times by Geographic Area www.grc.osu.edu

9. Results: Waiting List Data Figure 2: Median Waiting List Times by Type of Waiver www.grc.osu.edu

10. Research Methodology Sampling Frame and Selection • A random sample of 14,978 persons currently on the DODD wait list were selected for the study. • An address-based telephone match strategy was used and resulted in 4,959 telephone numbers.

11. Survey Development • The survey instrument underwent 13 revisions. • The survey consisted of 21 questions in three categories: unmet needs, caregiver information, and perceptions about the waiting list. • Cognitive testing was conducted by the Kent State University to help ensure survey questions were clear and understandable. • Trained interviewers from Kent State University administered the survey over the phone to individuals or parents/guardians.

12. Survey Administration • Trained interviewers from Kent State University administered the survey over the phone to individuals or parents/guardians. • The survey was administered during the month of September 2013. • The survey length was approximately 11 minutes on average . • 1,131 respondents completed the surveyRespondents consisted of individuals on the waitlist, caregivers and/or those most knowledgeable about individuals’ needs. • Response rate was 51.8%. • For the key questions of the survey (questions where everyone was asked), the 95% confidence interval spanned less than +/- 3% of the estimated percentage

13. Survey Data Results: Individuals Figure 4a: Current Primary Unmet Need (N=134) www.grc.osu.edu

14. Survey Data Results: Families Figure 4b: Current Primary Unmet Need (N=997) www.grc.osu.edu

15. Survey Data Results: All Figure 5a: Current Primary Unmet Need (N=1,131) www.grc.osu.edu

16. Results: Survey Data Figure 5b: Future Primary Unmet Need www.grc.osu.edu

17. Results: Survey Data Figure 6: Number of Current and Future Unmet Needs (N=1,131) www.grc.osu.edu

18. Age Distribution of Caregivers *Figures may not add up to 100% because of rounding www.grc.osu.edu

19. Results: Survey Data Figure 7: Time Caregiver Available for Continued Caregiving (N=1,131) www.grc.osu.edu

20. Results: Survey Data www.grc.osu.edu Figure 8: Intended use for waivers when received (N=1,131)

21. Results: Survey Data www.grc.osu.edu Figure 9: Waiver Referral Sources

22. Results: Survey Data www.grc.osu.edu Figure 10: Results by Caregiver Age Group (N=997)

23. Inferred Waivers from Survey www.grc.osu.edu

24. Data Limitations • The sample is relatively small for making inferences for unmet needs for various subgroups (e.g. counties). • Low percentage of surveys completed with individuals with developmental disabilities. • Survey categories sometimes unclear.

25. Project Summary • Forty-six percent (46%) of respondents reported no current unmet needs, and 15% did not anticipate having future unmet needs. • The greatest category of unmet future need reported by individuals and families was, “Something to do during the day” with twenty-one percent (21%) selecting this category as a primary unmet future need. • Based upon inferences made from the survey, approximately twenty-one percent( 21%) of current unmet needs can be addressed with the Level 1 waiver.

26. Recommended Next Steps • Refine survey instrument to include respite category • Further research to understand counter intuitive results • Use survey to assist with planning • Administer on county level www.grc.osu.edu

27. Contact Information Barry Jamieson Senior Project Manager The Ohio Colleges of Medicine Government Resource Center 150 Pressey Hall, 1070 Carmack Road Columbus, Ohio 43210 614-366-0329 barry.jamieson@osumc.edu