Disparities in Navigating Adult Disability Policies before and during the COVID-19 Pandemic: Examining the Role of Administrative Burden

Background and Purpose:

Accessing adult disability services following high school for young adults with intellectual and developmental disabilities (IDD) is a complex process that involves navigating a fragmented and decentralized resource landscape. This study examines the role of administrative burden as a barrier to young adults with IDD, their families, and professional stakeholders who seek to access and to navigate adult disability services. This study was conducted before and during the COVID-19 outbreak. It focuses specifically on disparities navigating disability policies to access services by family socioeconomic status, neighborhood, and type of disability.

Methods:

Using case study methodology, 39 families and professional stakeholders were interviewed in the Chicago Metropolitan area about their experiences accessing adult disability services during and before the pandemic (2019-2020). The professional stakeholders included clinical social workers, medical professionals, legal professionals, and disability service professionals. In addition to interviews, observations were conducted at two therapeutic high schools prior to the pandemic. Interviews and observations consisted of inquiry into experiences of administrative burden while navigating adult disability policies such as Supplemental Security Income (SSI) and Medicaid Home and Community Based Services (HCBS).

Findings:

Families and professional stakeholders experienced multiple layers of administrative burdens in navigating and accessing federal and state adult disability policies and services. These burdens included long waitlists to access services (an average of about nine years), inconsistent information on navigating these policies, and complex application and redetermination processes. The COVID-19 pandemic exacerbated these challenges as adult disability agencies closed their doors, Medicaid HCBS waitlists were put on hold, crisis considerations to move up on the waitlist were halted, and SSI processing was further delayed.

Disparities by socioeconomic status, neighborhood, and type of disability were highlighted in examining the costs of administrative burden. Low-income families in under-resourced areas of Chicago often lacked the knowledge, time, and resources necessary to navigate disability policies. For young adults with complex care needs including behavioral challenges, it was often impossible to connect them with appropriate adult services as most agencies did not have the resources or capacity to accommodate their needs.

Conclusion and Implications:

This study has highlighted that the complexity of administrative burdens can create and perpetuate disparities in navigating adult disability policies, especially during a global crisis like the COVID-19 pandemic. Families and professional stakeholders employed resilient strategies to manage these barriers. Unfortunately, these approaches were often not accessible to low-income families, agencies in low resourced areas of Chicago, and young adults with complex health and behavioral health needs. Given these challenges, policies and interventions designed to improve navigation of and access to disability policies should emphasize the need to reduce administrative burdens and to provide extensive navigation support to low-income families, under resourced agencies, and young adults with complex health and behavioral health needs. This is of particular importance during a public health crisis like COVID-19 where these families and agencies significantly struggled to have their needs met.