1. What Are We Waiting for? Waiver Supported Services Needed by Individuals and their Caregivers Presentation 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 2

3. Waiting List Panel Members Neil CastilowOhio 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 McGonigle Ohio Department of Developmental Disabilities Steve OsterKnox/Coshocton County Boards of Developmental Disabilities Roxanne RichardsonOhio Department of Developmental Disabilities Richard Serpe Kent State University Patrick Stephan Ohio Department of Developmental Disabilities Gregory Swart Ohio Department of Developmental Disabilities Yolanda TalleyOhio Department of Medicaid Dee TobiasOhio Developmental Disabilities Council www.grc.osu.edu 3

4. Agenda Project Background Project Objectives Methodology Results: Waiting List Database Results: Survey Data Data Limitations Project Summary www.grc.osu.edu 4

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. www.grc.osu.edu 5

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. www.grc.osu.edu 6

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

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

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

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. www.grc.osu.edu 10

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. www.grc.osu.edu 11

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 survey Respondents 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 www.grc.osu.edu 12

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

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

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

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

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

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

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

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

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

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

23. Inferred Waivers from Survey % From Survey Total Possible From Survey Inferred Waivers Needed Non Federal GRF Cost Current Level One21% 1,131 8,764 $ 38,889,160 I/O Waiver26% 1,131 10,609 $ 243,227,817 Total Current $ 282,116,978 Future Level One13% 1,131 5,367 $ 23,817,285 I/O Waiver67% 1,131 27,632 $ 633,545,975 Total Future $ 657,363,260 www.grc.osu.edu 23

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. www.grc.osu.edu 24

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. www.grc.osu.edu 25

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 26

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.edubarry.jamieson@osumc.edu www.grc.osu.edu 27