With a history dating back to the mid-seventies – and the founders of many independent living centers having served their community long before the structures were legally formalized – a lot of academic research has been done on Centers for Independent Living. As we speak to many of the CILs across the country in our ongoing series, we thought we’d take a look at some of the recent public-facing research that can inform centers and clients about current concerns facing the independent living movement.
Veterans
Published in the Journal of Community Health in late 2020, “Serving Rural Veterans with Disabilities: A National Survey of Centers for Independent Living (document)” is an article focused on how Veterans access independent living services.
According to the survey they distributed to CILs across the country, the most common core service accessed by Veterans was information and referral. Meanwhile, the least accessed service proportionally was transition from institutions. Outside of core services, housing and benefits support were top of the list while interpreting and emergency preparation were at bottom of the pile. Interestingly, of the 129 CILS to reply, less than 30 percent reported contracted collaborations. Meanwhile, 55 percent of respondents said that they had “informal collaborations with Veterans Affairs.”
When focusing in on rural Veterans, the researchers found that transportation, affordable housing, employment, and mental healthcare were some of the biggest areas of need. One respondent replied to the survey saying that veterans had concerns that were “all over the road.” The survey results detailed “just over 7% of CIL consumers [who] were reported to be Veterans”, while only a slim majority of CILs who responded track whether a consumer is a Veteran. Part of the issue, the researchers noted, was a potential lack of clarity for consumers as to whether they fit within the Veteran category.
“Veterans may not disclose that they served in the military if they received a less than honorable discharge. They also may not self-identify as Veterans if they were not career or combat military, or alternatively, if they do not meet the VA’s eligibility criteria for benefits.”.
Really, the report’s conclusion says it all:
“There is an urgent need for those who serve Veterans to better understand community-based resources such as CILs, and their services, history, and philosophy. As such, there exists a critical need for enhancing collaborations between CILs and local VA in order to achieve the goal of better meeting the needs of Veterans.”
Capacity for Technical Assistance and the Americans with Disabilities Act (ADA)
Many of the pieces written by Accessibility.com’s writers focus on the ADA. While we feel this is a key community need as an outlet dedicated to disability-related journalism, recent research by the Southwest ADA Center shows that more ADA-related knowledge is needed within CILs as well.
In the center’s 2019 nationwide survey, they found that the average number of consumers looking for support with ADA and disability discrimination-related issues was 11.7. That may not sound like a lot, but with 137 responses from CIL leadership on the question, that equated to 1606 inquiries in a month. The average number of consumers served in an average month per CIL was calculated at 128. While four more respondents answered the question about the number of consumers total, a rough calculation would mean that 9% of all consumers served in an average month are looking for support with discrimination and/or the ADA.
According to researchers, CIL's main barriers to supporting consumers with ADA complaints is a lack of staff and training material.
“Many CILs reported a need for more information, training, and technical assistance related to the ADA and other disability rights-related laws. When asked about the factors that limit their CIL’s ability to provide these services to their consumers, almost 2/3 of the respondents said they had inadequate staffing to respond to such needs while over 1/3 attributed their limitations to the lack of training or staff development available to them. Twenty-eight percent reported that they did not have sufficient information about the availability of legal services or that they were not fully aware of formal complaint processes.”
In their conclusion, the researchers noted that the data collected would help support Independent Living Research Utilization and the national ADA Center Network.
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