CHRIL-NET COVID Survey

The Collaborative on Health Reform and Independent Living (CHRIL), in partnership with the IL-NET National Training and Technical Assistance Center for Independent Living at ILRU and the National Council on Independent Living (NCIL), used the CIL-NET platform to conduct a national survey of CILs to assess the impact of the pandemic and the impact of local, state, and federal policy actions on people with disabilities. This page summarizes findings from 144 survey responses completed between April and June 2020. For additional resources, visit the following pages:

» View full report [PDF] [Rich Text Format]

» Read individual question analyses

» Review archive of open-ended responses

» Access ILRU disability services pandemic training

Background

People with disabilities are at higher risk of COVID-19 exposure, infection, hospitalization, and death than those without disabilities. This situation is most evident in the shockingly high rates of COVID-19 mortality among residents of nursing homes, nearly all of whom are disabled. Most adults with disabilities live in the community, but they share many of the same risk factors as those who live in institutional settings (e.g. multiple comorbid health conditions, older age, frequent interactions with medical professionals and service providers). It is likely the recent surge in excess mortality is also concentrated among people with disabilities.

People with disabilities are an at-risk group that faces significant inequities in income, education, employment, housing, transportation, and community participation. Disability also intersects with other sources of disadvantage and discrimination, with higher rates of prevalence among racial, ethnic, gender minorities, and sexual minorities. Many people with disabilities also have chronic health conditions or injuries, and therefore require much higher levels of healthcare and support services than those without disabilities. This combination of limited resources and high needs creates a relatively thin “margin of health” and a much greater vulnerability to communicable disease.

Study Population

According to the National Council on Independent Living (NCIL), CILs are “community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities…they operate according to a strict philosophy of consumer control, wherein people with all types of disabilities directly govern and staff the organization.” CILs provide individual and systems advocacy, peer support, information and referral, independent living skills training, and transition services. Their staff, administrators, and boards understand the ways in which health and disability services facilitate or impede independent living for people with disabilities in their local communities. Consequently, CIL personnel can provide important and detailed insights on the current needs of people with disabilities during this public health crisis.'

Study Sample

NCIL estimates that 403 CILs are currently operating in the US. CIL-NET is a regularly updated contact database and survey platform for CIL administrators maintained by ILRU. On April 20, 2020, all current CIL-NET contacts were invited to complete a CHRIL/IL-NET COVID-19 Needs Assessment, and were reminded about this invitation on May 14 and June 4. After data cleaning, our final sample included 144 completed and non-duplicative surveys from CIL administrators and staff.

Survey Instrument

Frequent communications with the CILs in the first months of the pandemic gave IL-NET personnel a broad understanding of the challenges the centers were facing, and these informed the development of four multiple choice questions about center operations, service delivery, new services and staffing. These were complemented by four open-ended questions: 

  1. Right now, what are the biggest pandemic challenges your CIL is facing in providing services to adults with disabilities?

  2. What are the biggest pandemic concerns of your consumers?

  3. What are the biggest pandemic concerns of your staff?

  4. What do you think the Administration for Community Living needs to know about the current needs of your local disability community?

We should note that the study sample represents individuals who work at a CIL, not the CILs themselves. About half of survey respondents opted to identify themselves and/or their centers, and in this subset, we found that 5 centers had submitted more than one survey. We opted to include only the most complete and recent survey from each of the 5 centers in our final sample. However, in the absence of identifying information from a large segment of our sample, However, in the absence of identifying information from a large segment of our sample, it is possible that multiple survey responses from the same CIL were included among our 144 surveys. 

Conclusions

While many Americans are now dealing with social isolation and financial insecurity, those with disabilities were already struggling before the COVID-19 pandemic struck. In the words of one respondent, “the pandemic has ‘pulled back the curtain’ on the depth of the need for our local disability community.” Across the country, CILs are struggling to meet the demand for independent living services, but resources are constrained, revenues are down, and CIL staff are worried about their health and job security. 

Perhaps the most important feature of CILs is the opportunity for people in the local community to share their common experience of living and coping with disability. These relationships have been disrupted by the pandemic, while at the same time, more people are recognizing their need for independent living services. Intakes are down in most CILs, and service offerings are limited. Phone calls or Zoom meetings are often a poor substitute for face-to-face peer interactions, but even these are complicated by significant economic and technological barriers. The disability community has been pushing policymakers and telecommunications companies to bridge the digital divide for decades, but it is now an emergency. The Federal Communication Commission’s E-Rate and Lifeline programs should be dramatically expanded and targeted to people of all ages with disabilities, particularly in rural and low-income communities.

Widespread stay-at-home orders have highlighted the urgent need for housing modifications, durable medical equipment, PPE, and safe and reliable personal assistance services. Given the appallingly high rates of infection and death in institutions, transition services for people being discharged from hospitals and intermediate care facilities are now literally a matter of life or death. As the job market shrinks and higher education options become more limited, youth transition services are becoming more important than ever. Under these circumstances, emergency aid, preferably in the form of unrestricted grants or forgivable loans, must be included in the next federal stimulus package. COVID-19 constitutes an existential threat to the disability community, and CILs are a key resource in countering this threat.