OBJECTIVE: To assess the impact of the COVID-19 pandemic on the provision of transition services from institutions at Centers for Independent Living (CILs).

BACKGROUND: A 2020 survey of 144 CILs, conducted in the early months of the COVID-19 pandemic, described significant service disruptions and widespread hardship among consumers and providers (Kennedy, Frieden, and Dick-Mosher, 2021). Several CILs mentioned that transition services, including those which help institutionalized residents return to the community, had been suspended or scaled back during the pandemic. Respondents attributed these changes to new state restrictions on visiting institutions, concerns for the safety of CIL staff, administrative delays, and limited community resources. This 2021 follow-up survey asked Centers to compare the volume of pre- and post-pandemic transitions (April-September 2019 vs. April-September 2020), and describe ways in which COVID-19 had impacted the provision of these services.

STUDY POPULATION: We mailed a Qualtrics survey link to all CILs with current contact information and, after several reminder e-mails, received a total of 72 unduplicated surveys from CIL administrators and staff throughout the US.

FINDINGS: The number of successful transitions appear to have dropped during the pandemic, and the number of unsuccessful transitions increased. Respondents were split on whether the pandemic increased or decreased the likelihood of successful transitions, but most agreed that it generally made transitions more costly, time-consuming, and administratively complicated. Most of the CILs then detailed multiple COVID-19 related barriers to successful transitions. However, item non-response was quite high in this survey, particularly for the requested consumer counts (nearly half of the 72 responding CILs listed zero transitions, or left the question blank, in 2019, 2020, or both). This response pattern suggests that there is great variation in how CILs define, provide, and track the provision of institutional transition services. Further in-depth interviews are needed to better understand the variation and complexity of institutional transition services and how COVID-19 has impacted these services. Given these methodological concerns, readers should be careful to generalize from these findings to all CILs.

CONCLUSIONS: The COVID-19 pandemic has complicated the provision of institutional transition services at the CILs that provide these services, though emergency funding through the CARES Act provided additional federal support. But the low rate of participation in this survey, coupled with high rates of item non-response among the CILs who did participate, suggests that many centers are struggling to provide institutional transition services, and these challenges may predate the pandemic.

DISCUSSION: Competing definitions of transition services complicated our survey and likely lead to higher rates of nonresponse. A 2016 rule classification by the DHHS Administration on Community Living (ACL) defines transitions as as services that: 1) Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based residences, with the requisite supports and services; 2) Provide assistance to individuals with significant disabilities who are at risk of entering institutions so that the individuals may remain in the community; or 3) Facilitate the transition of youth who are individuals with significant disabilities, who were eligible for individualized education programs under section 614(d) of the Individuals with Disabilities Education Act , and who have completed their secondary education or otherwise left school, to postsecondary life. Our questions were about the first kind of transition services, but CILs may have only provided the second or third kind of transition services.

In follow-up interviews with select CIL program administrators, interviewees suggested that successful institutional transitions required dedicated staff, funding, and community resources, while helping to prevent institutionalization and providing guidance to young adults with disabilities was less labor intensive. Additionally, the CIL program administrators indicated that clarification was needed to define institutions in the survey because some CILs provide transitions from specific institutional settings due to funding requirements and limitations.