What Community-Based Organizations Can Learn About Combating Isolation from Centers for Independent Living and Leading Advocates

By Richard Petty, MBA, Director of the IL-NET Training and Technical Assistance (IL-NET T&TA) Center for Independent Living, Director of the National Center for Aging and Disability (NCAD) at TIRR (The Institute for Rehabilitation and Research), and Co-Director of ILRU at TIRR

CIL Rapid, Comprehensive Response to the COVID-19 Emergency Created New Approaches to Address Isolation

With the advent of COVID-19 and the subsequent mandates for social distancing, Centers for Independent Living (CILs) across the country engaged in a near heroic effort to tackle the formidable challenge of social isolation and its impact on people with disabilities. Recognizing the high risks of COVID‑19 to vulnerable populations, CILs had to make two significant decisions.

First, the organizational structure was based on a long‑standing model of highly interactive, face‑to‑face in person communication with constituents at the centers, their homes, or in other community settings. CILs made the decision to rapidly transition from delivering services in-person to delivering them remotely. This meant that CIL staff transitioned to remote offices and received the technology they needed to continue interactions with consumers. During this time, CILs also worked intensively to provide consumers with the technology (primarily Zoom), smart phones and broadband access to provide the basis for continued meaningful interactions.

Second, the CILs had to adapt the methods used to continue to provide core services (e.g., information and referral, independent living skills, peer counseling, etc.). CILs began offering virtual opportunities for educational sessions either on a group or individual basis. Less formal activities were also conducted using Zoom such as happy hours, holiday celebrations, book clubs, board games and other events. Video platforms such as Zoom also offered telephone connection for participants, a great benefit for those who did not have broadband service in their homes.

There are numerous examples of how CILs adapted their services. For example,

  • Disability Rights & Resources of Birmingham, AL offered virtual happy hours with conversations about disability and accessibility in an informal online atmosphere.

  • Silicon Valley Independent Living Center of Santa Clara, CA provided ongoing workshops and classes, a weekly “coffee klatch” peer support group, and holiday celebrations including a People’s Thanksgiving commemoration, all online and readily accessible.

  • Central Washington Disability Resources of Ellensburg, WA used CARES Act funding to establish a laptop, tablet and phone loan program. Consumers “checked out” devices for three months and could “renew” if devices were still needed. The CIL arranged for WiFi installation to help consumers remain connected to their families, attend medical appointments and receive other community services virtually.

  • To encourage COVID-19 vaccination and social interaction, Southeast Kansas Center for Independent Living of Parsons, KS held an in-person event, “Ice Cream and Vaccine.” Vaccinations for the coronavirus were available and participants were able to socialize in a safe setting with social distancing.

Research Showed Some Successes in Addressing Isolation

The concentrated hard work of CILs, community-based organizations (CBOs), communities, families and friends may have helped make this extreme isolation better. Communities stepped up to meet what became a widely recognized need. Researchers Catherine Ipsen and Tannis Hargrove of The University of Montana Rural Institute for Inclusive Communities, speaking in a Friday, June 25, 2021, telephone interview, commented that even though their research identified that opportunities for in-person social engagement have become more limited during the COVID-19 pandemic due to social distancing and stay-at-home mandates, survey respondents reported substantially lower rates of “feeling left out post COVID-19.” This was true for those residing in rural and urban areas. Some of this change may be an indication of the success of CILs and other CBOs in their efforts to fight isolation. In addition, the analysis showed “…Post-COVID rural and urban samples reported significantly more interactions with family and close friends (America at a glance: Social isolation and loneliness during the first wave of COVID-19.).”

Individuals with disabilities also became more willing to explore new approaches to connecting with others as those approaches were adopted widely. Rural Institute researchers noted that the use of technology (smart phones and iPads for example) has become more “normalized” among so many in our culture. The popularity of these devices has encouraged many to adopt the devices as ways to be in touch with families and community.

“Living Loud,” Life and Advocacy Strategy to Remove Underlying Causes of Isolation

Since their inception CILs have advocated for the rights of people with disabilities and encouraged and supported self-advocacy. Advocacy at the individual level, with the support and involvement of CILs, has been quite effective. There is much we all can learn from CILs about both individual and systems advocacy. The advocacy of individuals and the support of CILs, other CBOs and all of us can turn the tide of isolation.

“Living loud” is a powerful strategy advanced by Jonathan Martinis, Senior Director for Law and Policy of Syracuse University’s Burton Blatt Institute. Martinis described the “Living Loud” strategy in a July 9, 2021, Zoom interview. He said the “Living Loud” strategy is not shouting. It is being vigilant and being always vocal about barriers to independence and freedom. “When you encounter discrimination or inaccessibility,” Martinis says, “be vocal. Confront the organization or individual. Tell many others [throughout the community].” These actions will confront case-by-case the barriers that keep people with disabilities isolated. Over time, this will have the effect of making people with disabilities more visible to others. When people with disabilities are more visible, acceptance will improve. Barriers to access and inclusion will be taken down. Isolation will diminish. Martinis adds, “living loud means calling attention to the positive as well as calling out the negative.” When a business, agency or individuals remove a barrier, “we should say, loud and clear, that they did so.” This will show the disability community will “embrace friends as much and as often as we point out problems,” Martinis concludes.

CBOs can join CILs in conducting advocacy training for those who receive their services. The CBO can teach the “living loud” approach to constituents. CBOs can foster mutual support networks of individuals advocating for their own inclusion. CBOs can adopt this approach as an organizational strategy. CBO staff can engage programs, communities and businesses on behalf of the organization. Staff can address barriers and isolation they encounter in their personal lives. Martinis says he advocates for access when he encounters barriers when taking his children to the beach.

The time is now to step up advocacy. That people with disabilities continue to experience isolation shows that we have failed to live up to the promise of the Americans with Disabilities Act (ADA) of 1990. Martinis says the law included powerful language about ending discrimination, isolation and segregation for people with disabilities. Even though we have addressed discrimination, isolation continues to affect the lives of people with disabilities. There is a long history of societal indifference to and disrespect of people with disabilities. Martinis acknowledges the ADA had much to overcome. Justice has again been delayed. Many disability community leaders believe the time is now to meet the challenge.

Training on Conducting Advocacy

The ILRU IL-NET T&TA Center offers several online tutorials and on-demand training sessions on advocacy. These have been developed for CILs; they will be useful for other CBOs:

ILRU IL‑NET T&TA Center RapidCourses Web-Based Self-Study Tutorials

On-Demand Webinars from the ILRU IL‑NET T&TA Center

Darya Rahbar