1 The Impact of COVID-19 on Disability Services and Systems: Perspectives from the Field

Jenson, R., & Tschida, J. (2021). The Impact of COVID-19 on Disability Services and Systems: Perspectives from the Field. Developmental Disabilities Network Journal,  (2), 1–3. https://doi.org/10.26077/BE92-EF5C

The Impact of COVID-19 on Disability Services and Systems: Perspectives from the Field PDF File

March 2021 is the 1-year anniversary of the dramatic halt in “life as we knew it” because of COVID-19. This issue is devoted to sharing what we, a network of self-advocates, families and caregivers, service providers, policy makers, educators, and researchers, have learned during this year of unprecedented challenges. Programs have been forced to adapt and change in ways that will shape disability services in the years to come. In some cases, we have witnessed innovation and creativity as people have adapted to a new reality. In other situations, we have seen service and support systems struggle to be responsive.

Despite being in the metaphorical situation of “building the plane as we’re flying it,” timely sharing of lessons learned from across the Developmental Disabilities Network (DD Network) is critical. Over this past year, Council on Research and Evaluation (CORE) members have been grappling with ways of capturing the multitude of changes occurring across nearly all aspects of daily life and associated results. The offer to co-sponsor this issue of the DDNJ emerged from CORE discussions about the urgency of sharing lessons learned. The result is a journal issue that includes a range of perspectives and insights into the first-year impact of COVID-19. This range includes descriptions of the strain and stressors of life during a pandemic, as well as innovative adaptations of services and supports and resulting positive outcomes posing promise for lasting improvements. The 16 articles in this issue cover three main themes: (1) the pandemic effects experienced by individuals with disabilities and families/caregivers, (2) shifts in practice and research, and (3) supportive systems.

Experiences of Individuals With Disabilities and Families/Caregivers

This issue begins with a self-advocate’s story describing experiences of social isolation, mental health, and social supports. Two other articles describe the experiences of individuals with disabilities. Monahan et al. asked college students with autism about their needs and concerns as colleges changed the ways instruction was provided as well as protocols for COVID safety. Sinclair et al. describes the ways the pandemic has affected the working lives of individuals with disabilities. Four articles focus on the family and caregiver needs during the pandemic. Bruder et al. report a reduction in the supports available for parents of children with disabilities as well as the stressors associated with changes in special education services and lost family income. With a focus on immigrant parents of children with disabilities, Rodriquez and McGrath describe multiple challenges with accessing disability-specific services, language interpreter services, family services, and financial supports. Llano et al. echo the economic and social toll the pandemic has had on families of individuals with disabilities. For individuals with disabilities being supported by older family caregivers, Milberger et al. describes challenges associated with acclimating to using technologies for social and service interactions, as well as the unexpected “silver lining” of the valuing the how life’s pace had slowed down.

Shifts in Practice and Research

Business-as-usual has dramatically been affected over this last year. Seven articles describe a form of pivot from the norm and the resulting effects. Russell et al., Pujol et al., and Aller et al. describe models of telepractice/telehealth and the benefits for providing services using technologies. Burks-Abbott et al. further promote the benefits of using technology by describing a virtual advocacy approach. Other shifts in practice and research have occurred in response to reducing the risk of participation. Plavnick et al. describes a toolkit for assessing and mitigating risk when providing applied behavior analysis therapy. Ahlers et al. explore the implications for conducting participatory action research while maintaining COVID safety and suggested modifications. The final article, Moriarta et al., describes reactions to meeting virtually and how this changed services for both clients and staff (i.e., how clients rated telehealth-based services and how they compared to in-person services; what problems staff experienced switching to the new technology; and what changes the program leaders had to make).

Supportive Systems

Two articles examine systems-level factors. Using a socio-ecological approach, Bailey et al. summarize expert viewpoints on person-centered practices and the supportive system for facing individual and community pandemic challenges. Day et al. examined the extent to which a statewide DD Network collaboratively responded to individual, community, and state needs and the resulting collective strength that DD Network partners gained from collaboration.

Implications for the Field

While we are 1 year into the pandemic, and there are emerging signs of possible widespread immunity from COVID-19, the former normal may never return. Mitigation efforts may be long lasting. Technologies may continue to be central to our daily interactions with friends, family members, and service professionals. Adaptations made to services may become integral to providing access to those services. The stressors of navigating needed supports as well as financial and economic strain may persist. In other words, at this 1-year mark, our work is incomplete. More data and analysis are needed to understand the impact of the pandemic on individuals, practices, and systems. Collaboration across the DD Network, involving individuals with disabilities, families/caregivers, communities, service providers, policy makers, and researchers to define and share lessons learned is of the utmost importance.

About the AUCD Council on Research and Evaluation

With a broad reach across the DD Network, as well as the Intellectual and Developmental Disabilities Research Centers, the Association of University Centers on Disabilities (AUCD) Council on Research and Evaluation (CORE) has sponsored this issue of the Developmental Disabilities Network Journal (DDNJ). As one of five AUCD Councils, the purpose of CORE is to serve as a forum for researchers and evaluators to learn from each other, pose discussions on research/evaluation issues, and conduct activities that build capacity across the network regarding research and evaluation.

About the Guest Editor

Dr. Ronda Jenson is the current Chair of the AUCD Council on Research and Evaluation (CORE). Dr. Jenson is an Associate Professor at Northern Arizona University (NAU) and the Research Director at the NAU Institute for Human Development, a University Center on Disabilities. She has spent 17 years as a researcher and evaluator in the network of University Centers on Disabilities.

About the Editorial Co-Author

John Tschida is the Executive Director of Association of University Centers on Disabilities (AUCD). He has spent more than 20 years using data and research to drive policy change and service development for individuals with disabilities.