This page analyzes the responses for the CHRIL-NET COVID-19 Survey on a question-by-question basis. For an overview of the survey, visit this page. For the responses themselves, visit this page.

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

The most common frustration about the pandemic was the disruption of personal, face-to-face relationships with consumers. One of the most powerful aspects of independent living services is the trust and solidarity established by multiple personal interactions between CIL staff with disabilities and consumers with disabilities who face similar challenges in work, healthcare, housing, transportation, and community living. Laptop screens and cell phones cannot fully replace this relationship. There were also a host of technical and economic challenges faced by CILs who abruptly changed to primarily or exclusively remote operations. Particularly in low income and rural communities, many CIL consumers did not have access to reliable and affordable communication technologies, broadband internet services, or cell phone service. Regardless of the community setting, large portions of CIL consumers may not be able to use these technologies even if they are available. These include people with sensory limitations, communication disorders, intellectual disabilities, traumatic brain injury, paralysis, or other conditions. 

For the safety of both staff and consumers, many CILs have paused some of their major services during the pandemic such as nursing home transition services and in-home modifications. Enrolling new clients remotely was particularly challenging.  Staff reported concerns about unmet needs of people with disabilities in their communities: although the CIL staff reach out and send applications to would-be clients, those applications were rarely returned mail without in-person follow up.  Lack of Personal Protective Equipment (PPE) was also a major concern for CIL staff. PPE is needed for the CIL staff to be able to interact safely with their clients, as well as for direct service providers working with clients. 

• “A majority of the disability community are older adults who are not used to going online to use a computer to access information; that is, if they even own a computer. Since many don’t have internet, we can’t do FaceTime or Zoom meetings or trainings with our consumers either. Currently all but one of our staff members are all working from home and we have to rely on the one employee in the office to relay messages to us that someone called us. We then end up playing telephone tag to reach the consumer and [it’s] frustrating for them and us.” 

• “Not being able to meet in person. I think that it makes them feel more reassured when they see a real person in front of them and know that that person is truly empathetic to how they are feeling.” 

• “Not being open to the public. It is difficult to get applications back from the consumers for new services. We send the applications electronically and also paper with a return envelope with postage, but I am finding that by not being able to visit and do in-home intakes I am not getting applications back.” 

• “Cannot do installation of AT devices in homes. Waiting list is at 50 right now. Our volunteers that do the work are all older adults, so we will not put them at risk.” 

Question 2: What are the biggest pandemic concerns of your consumers?

Overwhelmingly, the three biggest concerns of the consumers were food, healthcare, and social isolation. Respondents noted that the many of the local grocery stores were low on stock, and they feared that consumers would run out of medically-needed supplies. Difficulty finding safe and reliable transportation exacerbated these concerns. CIL staff were also concerned that their consumers would lose the ability to pay their rent and utilities due to lack of income caused by the pandemic. In addition, CILs expressed concern over the ability of consumers to maintain support from their aides and whether the aides would have proper PPE. 

Respondents expressed concern that both CIL staff and consumers were particularly vulnerable to the virus due to underlying health concerns. If they did contract the virus, they were concerned that disabled patients will be “sidelined for more viable patients.” Therefore, many consumers were foregoing regular medical appointments to avoid exposure. Finally, there was a lot of concern that consumers are facing isolation due to social distancing guidelines. One respondent wrote, “Many do not understand the ‘why’s’ of isolation, even though many have been isolated much of their lives.” There was also concern that the isolation will lead to depression or exacerbate existing mental health issues in the consumers. 

• “Access to food, and then also PPE for home services. People are also scared about riding public transit or paratransit, about making rent, and about accessing healthcare.” 

• “Most of our consumers do not have a computer. They would have come in the Center to use the computers. Another concern is that they will be able to pay their bills, and that their medical insurance won’t change. Too much uncertainty!” 

• “Having a disability and being valued less when it comes to decisions such as who gets the ventilator when there is a shortage.” 

• “The greatest concern is contracting COVID-19 as they are a vulnerable population. This is limiting consumers from leaving their house and even attending necessary doctor’s appointments.” 

• “The need for peer support and coping with depression. Isolation is driving a lot of that.”

Question 3: What are the biggest pandemic concerns of your staff?

The main concerns of the staff were work security, health and safety. Their commitment to meeting the needs of their consumers remained strong, but some staff said they find themselves caught trying to balance the fears of COVID-19 with providing appropriate services. Many feared exposure to the virus if offices re-opened and resumed face-to-face services prematurely. Staff were also concerned about the possibility that they themselves may unknowingly pass the virus to their vulnerable consumers or their own families. A reported lack of PPE supplies heightens these fears. While staff were grateful to be able to maintain their jobs through remote work, they missed the comradery and supportive work environment provided by the CILs and they fear how the pandemic will impact their job security in the long term. 

• “The health and welfare of our consumers.” 

• “Fear for themselves and worried about losing their jobs.” 

• “Social isolation. We are a tight knit group. We meet twice a week for 1.5 hours but [it’s] not the same. Everyone is healthy (so far) and working.” 

• “We are concerned that we will be made to return to face to face visits too soon and we will expose ourselves, our consumer’s or our families to COVID.” 

• “Continuing to serve the consumers with the resources (financial, technology, time) we have as well as addressing the pandemic related isolation, fear, lack of normality/routine.”

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

When asked what the Administration on Community Living needs to know about the current needs of their local disability community, many respondents expressed major concerns related to access. Respondents were concerned that members of their local disability community lacked access to needed medical supplies, food, and PPE. In addition, lack of access to transportation and unstable housing were major concerns for their consumers. Communication technology was also a major concern.

Respondents expressed concerns about providing services to consumers in new ways and the ability of their offices and staff to keep up with the changing needs of the community. The COVID-19 pandemic has disrupted their ability to provide some of their regular services such as youth transition and nursing home transition. They asked for increased funding and flexibility in use of funds so that they are better able to react to the changing needs of their communities. These funds are necessary not only to maintain staff and services but to help meet the consumer need for technology and necessary supplies.

Respondents were very concerned about people with disabilities being left out of important decisions made by policymakers. They stressed that there is great need in the disability community and that the lives of people with disabilities are precious. Respondents support advocacy that puts the needs of the disability community at the center rather than treating people with disabilities as an afterthought. Speaking directly to the ACL, several respondents also expressed their appreciation of the support that they have received so far. 

• “The needs of the disability community should be considered in legislation and their lives should not be considered appropriate trade-offs for reopening society.”

• “The lack of access to technology in a now technologically driven world is abysmal in the disability community. Even if CILs purchased tablets or computers for consumers, they still would not be able to afford the monthly internet costs. This is leading to intense isolation and will likely increase the need for mental health assistance. Additionally, consumers are fearing (if not already facing) institutionalization as a result of the pandemic.”

• “We are just in the beginning. Be flexible. Our needs are similar to others across the country. Allow us to be creative with the additional funds. Whether this is to develop programs/services. Allow the funds to fill in the gaps that we’re seeing in providing nursing home transition services (e.g. hotel rooms, meals, hazard pay for staff).”

• “I think ACL provides very helpful information to our Center, always. The access to webinars and free training materials are very beneficial.”

Question 5: If your CIL is continuing operation, how are you operating?

When asked how the CILs are continuing to operate during the pandemic, the highest frequency responses indicated that CILs were working with consumers via individual phone calls, conducting daily or frequent wellness checks with consumers, and working with consumers by individual computer or smartphone video sessions. Many respondents also indicated that they had closed their offices entirely and were working remotely. These respondents were assessing disability community needs using telephone and online surveys, conducting group video conferences, advocating with local leaders and emergency response officials to ensure the needs of the disability community are met, and working with local emergency response leaders and community service organizations to help prevent institutionalization of people with disabilities in this emergency. Some respondents indicated that their office remained open with limited consumer or community contact, and only one respondent indicated that they were closed and not providing any services. 

Respondents also had the opportunity to indicate other ways in which they are continuing operations. Frequently, respondents mentioned using social media to stay connected with their consumers with some even using digital media such as podcasts and YouTube videos. While many respondents stated that their staff was working remotely, there were many who referred to staggering staff shifts in the office as a social distancing measure. 

• “Our office is closed to the public during the state’s stay at home order, staff are mostly working remotely but some still work out of the main office in staggered shifts.” 

• “We are using Facebook to provide IL instruction on daily living skills.” 

• “We are producing YouTube videos for our cooking and crafting classes.”

Question 6: What core services and additional services are you currently providing to consumers?

When asked what core services and additional services the CIL is currently providing to consumers, the highest frequency responses were information and referral, individual advocacy, and peer counseling and support. Many respondents also indicated that they were providing systems advocacy, independent living skills training, and institutional transition and diversion. 

When asked to specify other services, respondents mentioned accessibility, food delivery, benefits counseling, and outreach. Many remarked on how the pandemic has impacted their regular services. 

• “We are able to provide youth transition services, but families are opting to wait out the pandemic. Staff are still maintaining contact with them.” 

• “We are currently trying to figure out how to do relocation services without contact. 

• “We do provide diversion services but are currently not allowed into any institutions during lockdown. We offer transition of youth but are finding it difficult to reach those youth.

Question 7: Is your CIL providing any new services or have you increased services directly related to the COVID-19 pandemic? If yes, what community-based organizations are you partnering with to provide these new or increased services?

When asked whether the CIL is providing any new services or increased services directly related to the COVID-19 pandemic, respondents were split between yes and no, with a slightly higher frequency of respondents answering, “yes.” Of the respondents who indicated that they were providing new or increased services related to the COVID-19 pandemic, the highest frequency of respondents indicated that they were providing individual COVID-19 prevention and awareness information/education. Many also indicated that they were providing emergency preparedness and response directly related to the COVID-19 pandemic and advocacy with emergency and public officials to ensure the rights of people with disabilities are maintained during the crisis.

Respondents wrote that providing food and water supplies to their consumers has become a new or increased service of the CIL. Several also indicated that they were proactively reaching out to consumers to assess their needs, including their emotional support needs during the crisis. Some respondents also mentioned assisting clients with their pandemic-related financial needs. 

• “Food security- we are receiving donations from individuals that we have been passing on. Eggs, milk and produce from local farmers and producers have been a huge help.” 

• “Peer support to groups of individuals with disabilities who didn’t receive peer support through a support group yet now are receiving peer connection services. Examples include a weekly volunteer group meeting where there is conversation and games. Additional 1-1 wellness checks to individuals who didn’t receive wellness checks prior to COVID-19.” 

• “Assisted SSI consumers with dependents on registering for stimulus payment.”

Respondents partnered with a variety of community-based organizations to increase services. Frequently, respondents indicated that they were partnering with Legal Aid, charitable non-profits, their state’s Protection and Advocacy agency, and food pantries as well as local government. Respondents also referred to collaborations with their SILCs, local agencies on aging, and local advocacy organizations.

Question 8: Has it been necessary to make reduce staff hours or conduct layoffs or furloughs?

When asked whether it has been necessary to reduce staff hours or conduct layoffs or furloughs, most respondents (86%, n=124) answered “no” while a minority (14%, n=20) answered “yes.” Some respondents reported having to reduce the hours of staff, with a few mentioning staff furloughs. In addition, respondents indicated that they laid off staff in specific categories such as corporate staff or administrative staff. Some said that staff members voluntarily chose unemployment as the more financially viable option. 

• “Some staff have taken the unemployment insurance option. Others are on reduced hours.” 

• “Staff work whatever hours they can legitimately get in; however, those hours are usually less than a typical work week.” 

• “We have not furloughed any front-line staff, but have laid-off/furloughed 20 corporate staff and reduced working hours for another 8 corporate staff.” 

Other Comments:

When asked for other comments, respondents indicated that they have appreciated the support, webinars, and training that have been provided so far to help them through these unprecedented circumstances. Respondents reported slowly adjusting to providing new services as well as new means of service delivery through remote work. Some respondents applauded their leadership. Some requested additional training and support specifically related to technology. Finally, respondents expressed concerns regarding contracting the virus and providing services to a high-risk community. 

• “The increase in trainings from NCIL, ILRU, ILNET, etc. have made coping with this new way of working much better, and I feel better prepared to help our consumers.” 

• “I feel like the Executive Director/Board of Directors of our CIL are doing a great job during this pandemic, putting our consumers first and trying to support staff as much as possible given the resources available to them.” 

• “If possible, it would be helpful to hear how other CILs are conducting remote sessions to accommodate a variety of disabilities.” 

• “The current concern we are hearing from consumers, community members and staff is that they are scared of the state re-opening too early and that there will be grave consequences