What Are We Waiting for? Waiver Supported Services

Needed by Individuals and their Caregivers

Presentation of Full Report

June 20, 2014

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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.

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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 McGonigle Ohio 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

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

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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.

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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.

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Results: Waiting List DataFigure 1: Median Waiting List Times by Age Category

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<2 years 3 to 5 years

6 to 21 years

22 to 30 years

31 to 40 years

41 to 50 years

51 to 64 years

65 years and older

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

0.91.8

5.4

7.3

10.79.3 9.6

11.8

Years

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Results: Waiting List DataFigure 3: Median Waiting List Times by Geographic Area

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Rural Appala

chian

Rural N

on-Appalach

ian

Suburban

Urban -

2.0

4.0

6.0

8.0 5.7 5.5

6.5 6.8

Years

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Results: Waiting List DataFigure 2: Median Waiting List Times by Type of Waiver

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I/O Only

LV1 Only

SELF Only

I/O & LV1

I/O & SELF

LV1 & SELF

I/O & LV1 & SELF

0.01.02.03.04.05.06.07.08.09.0

10.0 9.3

5.6

0.9

5.26.2

1.4 1.8

Years

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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.

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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.

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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

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Survey Data Results: Individuals

Figure 4a: Current Primary Unmet Need (N=134)

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19%

10%

4%11%

10%

<1%

46%

Something to do during the day

Medical Care

Place to Stay

Transportation

Help with Daily Activities

Other

No areas of unmet need

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Survey Data Results: FamiliesFigure 4b: Current Primary Unmet Need (N=997)

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14%

13%

2%8%

14%

2%

47%

Something to do during the day

Medical Care

Place to Stay

Transportation

Help with Daily Activities

Other

No areas of unmet need

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Survey Data Results: AllFigure 5a: Current Primary Unmet Need (N=1,131)

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15%

13%

2%8%

13%

1%

46%

Something to do during the day

Medical Care

Place to Stay

Transportation

Help with daily activities

Other

No areas of unmet need

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Results: Survey DataFigure 5b: Future Primary Unmet Need

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21%

17%

16%8%

15%

3%

15%

4% Something to do during the day

Medical Care

Place to Stay

Transportation

Help with Daily Activities

Other

No areas of unmet need

Don't Know/Refused

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Results: Survey Data

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Figure 6: Number of Current and Future Unmet Needs (N=1,131)

0 1 2 3 4 5 or 60%5%

10%15%20%25%30%35%40%45%50% 46%

33%

12%

6%2% 1%

15% 15% 16%13%

17%

23% CurrentFuture

Number of Unmet Needs

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Age Distribution of Caregivers

44 Years and Younger28%

45 to 54 Years30%

55 to 64 Years22%

65 + Years17%

Don't Know/Refuse2%

* Figures may not add up to 100% because of rounding

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Results: Survey Data

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0 to 1 year 1 to 5 years > 5 years Don't Know0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

2%10%

79%

9%

Figure 7: Time Caregiver Available for Continued Caregiving (N=1,131)

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Figure 8: Intended use for waivers when received (N=1,131)

Results: Survey Data

Something to

do during th

e day

Medica

l Care

Place to

Stay

Transp

ortation

Help with

Daily

Activiti

esOther

Don't Know/R

efused

0%10%20%30%40%50%60% 54%

46%41%

51% 52%

11% 9%

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Results: Survey Data

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Figure 9: Waiver Referral Sources

County Board Staff51%

Doctor/Medical Professional11%

Help Me Grow7%

Pre-School11%

Family or Friends10%

Don't Remember/Don't Know/Re-fused11%

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Results: Survey DataFigure 10: Results by Caregiver Age Group (N=997)

Something to

do during th

e...

Medica

l Care

Place to

Stay

Transp

ortation

Help with

Daily

Acti

vitiesOth

er

No areas o

f unmet n

eeds

Refuse

d/Don't

Know 0%

5%

10%

15%

20%

25%

30%25%

19%

15%

7%

18%

2%

11%

3%

15%

11%

24%

10% 10%

4%

21%

6% 60 and underOver 60

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Inferred Waivers from Survey

% From SurveyTotal Possible From Survey

Inferred Waivers Needed

Non Federal GRF Cost

Current Level One 21% 1,131 8,764 $ 38,889,160 I/O Waiver 26% 1,131 10,609 $ 243,227,817 Total Current $ 282,116,978 Future Level One 13% 1,131 5,367 $ 23,817,285 I/O Waiver 67% 1,131 27,632 $ 633,545,975 Total Future $ 657,363,260

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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.

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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.

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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

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Contact InformationBarry Jamieson

Senior Project ManagerThe Ohio Colleges of Medicine Government Resource Center

150 Pressey Hall, 1070 Carmack RoadColumbus, Ohio 43210

614-366-0329 barry.jamieson@osumc.edu

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