1. Presenters: Lex Frieden Alexander Zarutskie August 22, 2018
Collaborative on Health Reform and Independent Living (CHRIL) Centers for Independent Living Survey and Follow-up Interview Findings
Presenters:
Lex Frieden
Alexander Zarutskie
August 22, 2018
CHRIL-Collaborative on Health Reform and Independent Living

2. The Collaborative on Health Reform and Independent Living (CHRIL)
Objective: To discover and share essential information about how health reforms affect working-age adults with disabilities.
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3. CHRIL Institutional Members
Washington State University (WSU)
Independent Living Research Utilization (ILRU) at TIRR Memorial Hermann
University of Kansas (KU)
George Mason University (GMU)
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4. CHRIL Strategic Partners
National Council on Independent Living (NCIL)
American Association on Health and Disability (AAHD)
Association of Programs for Rural Independent Living (APRIL)
Disability Research Interest Group (DRIG) of AcademyHealth
Urban Institute
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5. CHRIL Project 2: Health Insurance Information, Training and Technical Assistance Needs of CILs
Central hypothesis:
Centers for Independent Living throughout the US will require new research, training, and technical assistance products to meet the needs of consumers with disabilities.
Research questions:
Are CILs currently providing benefits counseling and health insurance enrollment assistance to clients with disabilities?
What are the information, training, and technical assistance needs of the CIL staff and clients?
What are the major health policy concerns of CIL staff and clients?
Lex pass to Alexander when finished with this slide
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6. Research Study History
Conducted in two phases
One completed in 2017
Follow-up interviews in 2018
Not intended or feasible to have a fully representative sample, although casual analysis of data shows responses to be characteristic of a wide range of CILs based on size, location, budget, etc.
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7. 2017 Needs Assessment of Centers for Independent Living
Goal
Conduct a survey to determine the information, training, and technical assistance needs of Centers for Independent Living (CILs) as they help consumers access healthcare and obtain or maintain health insurance coverage.
Central question: Do you provide these services?
If yes, how?
If no, how can we help you to do so?
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8. 2017 Needs Assessment of Centers for Independent Living ‒ Methods
Research Design:
Qualitative study design using a convenience sampling technique
Participants:
All CIL Executive Directors in all the states/territories of the U.S.
Materials:
Designed survey using SurveyGizmo
Provided confidentiality and anonymity for participants
Obtained items on survey from CIL staff, ILRU experts & other staff
Asked 15 questions: 4 yes/no, 3 multiple choice and open-ended questions
Notes:
1. The questions asked about the CILs’ location, the amount of staff and volunteer time committed to counseling and enrollment assistance, and the number of consumers they assist with health care‑related matters in a given month.
2. The survey also requested information about how CILs inform their communities that these services were offered and about their methods for offering them.
3. The remaining questions were open‑ended response questions regarding the health insurance information and training needs of the particular CIL, as well as CIL consumer concerns about the uncertain climate of health reform.
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9. Methods, cont’d. Procedure:
Short internet surveys sent to the address of all the 354 federally-funded CIL directors across the states/territories of the U.S.
Follow up calls made by ILRU staff
Data Analysis:
Descriptive statistics of percentages, bar and pie charts
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10. 2017 Needs Assessment of Centers for Independent Living ‒ Results
149/354 (42.1%) of CILs responded to survey
75.7% of the CILs responded that they provided health insurance counseling and enrollment assistance for consumers.
Individual, face-to-face, or telephone was the most reported method of providing this assistance. CIL websites were reported as the major means for providing awareness that these services were offered.
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11. Results, cont’d.
Only 8.7% of CILs responding stated they were doing well in offering proper health insurance counseling and enrollment assistance.
91% of CILs indicated a need for more information and training (more up to date, easily accessible information regarding health insurance rules and advocacy training)
91.7% of CILs responded that consumers have expressed concerns regarding the uncertain climate of healthcare reform.
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12. Primary Methods Employed to Provide Health Insurance Counseling & Enrollment Assistance
Primary methods that CILs provide health insurance counseling and enrollment assistance. Most common: one to one counseling per request (45%), followed by peer-to-peer and workshops (16% each). Less common were educational groups (9%) and a variety of other methods (10%).
Image description:
Pie chart (6 sections). Title: Primary methods that CILs provide health insurance counseling and enrolment assistance
Individual sections: one to one counseling per request (45%), peer-to-peer (16%), workshops (16%). Educational groups (9%), all of the above (4%) and other (10%).
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13. Level of Effort Varied Between CILs
Level of Effort Varies
Level of Effort Varied Between CILs
22% of the CILs reported providing counseling or enrollment assistance for health insurance or related benefits infrequently (fewer than one consumer each month); 62% provided assistance for between 1 and 25 consumers each month; 16% reported serving more than 25 consumers each month
On average, CILs provided this service for 22.5 consumers per month; the most common response was 3 consumers per month.
Image description:
Bar chart (6 bars), Title: Level of Effort Varied Between CILs
X-axis: Number of Consumers in a Given Month (categories: <1, 1-25, 26-50, 51-75, , >100)
Y-axis: Percentage of CILS (range displayed; 0-70%)
Individual bars: <1 (22%), 1-25 (62%), (8%), (2%), (1%), > 100 (5%)
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14. 2017 Needs Assessment of Centers for Independent Living ‒ Results, cont’d.
Consumer Concerns
Loss of insurance (Medicare/Medicaid) coverage, Status of ACA
Limited access to healthcare (primarily in rural communities), Lack of available doctors, Lack of employment options, Loss of coverage for long-term home care
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15. 2017 Needs Assessment of Centers for Independent Living ‒ Results, cont’d. 2
Major information, training, and technical assistance needs of CILs:
More detailed information on how to decipher coverage and compare coverage between plans
Training on how to identify major areas of concern for consumers
More up-to-date, easily accessible information regarding health insurance rules
Training to be better able to advocate for specific consumers based on their disability and budget.
Training on how to play a more active role in persuasion of legislators and encourage consumers to do the same
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16. 2017 Needs Assessment of Centers for Independent Living ‒ Conclusions
Majority of CILs identified a need for more information regarding the implications of proposed legislation. A surprisingly low number of all responding CILs stated they were doing well in offering proper health insurance counseling and enrollment assistance. Even these CILs reported a need for additional information.
Nearly all CILs indicated a need for any information on these topics that CHRIL could offer. Specifically, most CILs requested help comparing plans and understanding what each of the plans offers consumers. Additionally, a large number of CILs reported a need for more information regarding rules, especially those specific to their particular state.
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17. 2017 Needs Assessment of Centers for Independent Living ‒ Conclusions, cont’d.
Having identified critical needs, these survey findings will help the CHRIL team in providing easily accessible and understandable training to CILs; thereby supporting CILs in providing assistance to consumers in their efforts to live independently.
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18. Questions & Discussion
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19. Centers for Independent Living Executive Director Follow-up Interviews
Goal
The primary objective is to conduct follow-up interviews with select CIL administrators to elaborate themes identified in the 2017 Needs Assessment survey
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20. Centers for Independent Living Executive Director Follow-up Interviews ‒ Methods
Research Design:
Case study interviews, convenience sampling technique. IRB Approved June 2018
Participants:
All 149 CIL Executive Directors who responded to needs assessment survey were contacted, specific CILs targeted
Potential sites for interview were identified to represent a wide variety in geographic location, primary consumer population (rural vs. urban), funding level, number of consumers served, and length of time center has been operational. The phone or video interview is recorded, take approximately 30 minutes to complete, and will include specific questions in relation to the function of the CIL in the current healthcare environment.
Themes:
-How the CIL staff obtains information on health insurance rules
-A concentration on consumer’s concerns
-Expansion on specific staff training, technical assistance needs
-Focus on funding positives, possible improvement areas
-How to improve effectiveness of CIL’s
-Overview how CILs enhance marketing/outreach
-How to improve education on access to healthcare/health insurance and employment resources
-How the CILs are providing updated information regarding new healthcare legislation
-Ways to better link with the available resources of CHRIL/ILRU.
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21. Centers for Independent Living Executive Director Follow-up Interviews ‒ Methods, cont’d.
Materials:
Transcript of pre-determined interview questions
Questions formulated from survey results and advisement by CIL staff/ILRU experts
9 unique sections designed to identify specific themes
Procedure:
30-45 minute phone interview
Interview is recorded and transcribed by ILRU staff
Data Analysis:
Descriptive statistics, textual processing analysis
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22. Follow-up Interviews ‒ Results: Initial Findings
6 Executive Director Interviews conducted (as of 8/14/18)
Difference in how CIL staff obtains information on health insurance rules
Inability to efficiently find information, lack of regular updates from federal organizations
Lack of knowledge of specific staff training and technical assistance needs
None of CILs interviewed have specific specialists for heath insurance enrollment/coverage inquires
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23. Follow-up Interviews ‒ Initial Findings, cont’d.
Uncertainties in addressing consumer concerns
Medicaid eligibility, loss of coverage, unpredictable recent healthcare legislation changes
Continuing Interviews through rest of August/Sept. (Goal of total interviews)
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24. Centers for Independent Living Executive Director Follow-up Interviews ‒ Conclusions
There is critical need to improve the education and quality of information available for CIL staff as to updated health legislation and health insurance rules.
Wide variety of ways that CIL staff address consumer’s concerns.
Differences in efficient processes, marketing/outreach of services.
The finding from these interviews, along with the survey results, will help the CHRIL team in developing relevant and up-to date training to CILs.
Alexander pass to Lex when done with slide
CHRIL-Collaborative on Health Reform and Independent Living

25. Implications of Findings
Improve the availability and accessibility of information on updated health insurance rules
How CILs disseminate this information to their consumers.
Impact of findings on people with disabilities
Importance of education for CILs staff in identifying and addressing consumer’s consumers
Translate to effective health insurance counseling and enrollment assistance.
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26. Project 2 Going Forward Formal Report of Survey and Interview Findings
New education modules/training for CILs on recent health legislation and health insurance rules
Revised Survey will be distributed to all 356 CILs in 2019
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27. Questions & Discussion
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28. Wrap Up & Evaluation
After the webinar ends, you will see an evaluation survey. Please fill this out – your feedback is important and appreciated! August Independent-Living-Survey-Findings
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29. Acknowledgements
The Collaborative on Health Reform and Independent Living (CHRIL) is funded by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), US Department of Health and Human Services.
The contents of these presentations do not represent the policy of NIDILRR, ACL, HHS, or the US Government.
CHRIL-Collaborative on Health Reform and Independent Living