2017 Needs Assessment Survey of Centers for Independent Living
Lex Frieden, Co-Investigator, Collaborative on Health Reform and Independent Living
Richard Petty, CHRIL Training Director; and Alexander Zarutskie, CHRIL research assistant
Centers for Independent Living (CILs) are designed and operated within a local community by individuals with disabilities and provide an array of independent living services. With the current uncertain environment of healthcare reform, individuals with disabilities are increasingly becoming more concerned with their ability to access healthcare and health programs in order to lead full, active lives. Throughout 2017, an online needs assessment survey was administered to nearly 150 CILs. In this survey, CHRIL set out to collect data regarding the CILs funding sources, staff perspectives on the concerns and interests of consumers, the type and frequency of health insurance counseling and enrollment assistance CILs offered, and questions or concerns CIL staff had regarding the health insurance marketplace.
The goal of this project is to determine the information, training, and technical assistance needs of CILs as they help consumers access healthcare and obtain or maintain health insurance coverage.
The study used an electronic survey designed and administered through SurveyGizmo. The design provided for confidentiality and anonymity; the survey contained 15 questions (4 yes/no questions, 3 multiple choice questions, 8 open‑ended responses). 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. The survey also requested information about how CILs inform their communities that these services were offered and about their methods for offering them. 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. Primary means for data analysis were descriptive statistics of percentages, bar and pie charts.
75.7% of the CILs that responded to the survey reported 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 (see Figure 1). Websites of centers were reported as the major means for providing awareness that these services were offered.
22% of the centers reported providing this service infrequently (fewer than one consumer each month); 62% provided assistance for between 1 and 25 consumers each month; 14% reported serving more than 25 consumers each month (see Figure 2). On average, CILs provided this service for 22.5 consumers per month; the most common response was 3 consumers per month.
91.7% of CILs reported that consumers have expressed concerns regarding the uncertain climate of healthcare reform.
Additional major 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
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
78% of CILs that responded to the survey have received inquiries related to market place changes or uncertainties in the health care environment in the past 12 months.
All CILs reported receiving federal funding. 66.4% received additional state funding. Only 20% explicitly noted need for more funding.
8.7% of CILs reported that they were satisfied with the level of assistance and support they provide.
54% of the CILs were satisfied with the quality and accessibility of information regarding health insurance rules; 46% were unsatisfied.
Almost all CILs identified a need for more information regarding the implications of proposed legislation. A shockingly low number of all responding CILs (8.7%) stated they were doing well in offering proper health insurance counseling and enrollment assistance. Even these CILs reported a need for additional information. 91% of 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 more information regarding rules, especially those specific to their particular state. 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.
For More Information
Please contact Jae Kennedy, CHRIL Principal Investigator, Department of Health Policy and Administration, Washington State University Spokane, Phone: (509) 358-7980 Email: firstname.lastname@example.org
For specific inquiries on CILs, contact Lex Frieden, CHRIL Co-Investigator, Independent Living Research Utilization (ILRU) TIRR Memorial Hermann, Phone: (713) 520-0232 Email: email@example.com.