Karla Ausderau, PhD, assistant professor, UW–Madison School of Education, Department of Kinesiology used a COVID-19 Response grant to address significant health disparities and marginalization experienced by people with intellectual and developmental disabilities (IDD) that have been exacerbated by the COVID-19 pandemic. This project examined the impact of COVID-19 on the health and wellbeing of people with IDD, evaluated current responses to address this impact and provided recommendations to guide service delivery to better meet the needs of this often-underserved population.
The Challenge
People with intellectual and developmental disabilities (IDD) routinely experience significant disparities in unmet health needs, access to quality healthcare services and rates of chronic health conditions. In addition, people with IDD face barriers to health including decreased knowledge of healthcare services, healthcare providers who are unable to meet the unique needs of people with IDD, limited access to preventative care, financial barriers and physical environments that are not accessible. COVID-19 exacerbated these issues for this community.
Furthermore, people with IDD significantly rely on the support of state and community nonprofit organizations. These organizations had to rapidly adjust their care delivery approach in response to the COVID-19 pandemic. A detailed understanding of the impacts on health and wellbeing and unmet needs for people with IDD in Wisconsin during COVID-19 is desperately needed for community organizations to effectively respond and direct their care.
Project Goals
The goal of this project was to 1) clarify the impact of COVID-19 on the health and wellbeing of people with IDD, 2) evaluate the current systemic and community responses to mitigate those effects, and 3) provide recommendations to guide service delivery for Wisconsin nonprofit community organizations to best meet the needs of individuals with IDD. The researchers conducted three distinct and complimentary studies to meet project aims and incorporate a diverse group of stakeholders throughout the research process.
The PI identified three specific aims:
Aim 1: Evaluate the overall impact of COVID-19 on people with IDD in Wisconsin.
Aim 2: Understand the daily impact of COVID-19 on the employment, health and wellbeing of people with IDD from culturally and socioeconomically diverse groups.
Aim 3: Describe and evaluate the modifications made by local and state nonprofit community programs to mitigate the impact of COVID-19.
Results
Aim 1: The researchers conducted a cohort study using extant survey data collected in 2017 from adults with IDD and those that represent them in Wisconsin. They collected data at three follow-up time points from individuals in Wisconsin receiving long-term care. There were no significant differences in quality of life or satisfaction of services pre- and post-COVID-19. Ninety-six percent reported access to the vaccine, but 16% experienced barriers getting the vaccine. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics (health status, access to health care, and current care approaches).
Aim 2: The research team collected photos and individual narratives from adults with IDD using an inclusive methodology, PhotoVoice. A primarily analysis indicated five primary qualitative themes which illustrate changes to participant’s daily living in relation to the COVID-19 pandemic including 1) keeping themselves and others safe, 2) loss, 3) magnified barriers, 4) time and change in routines, and 5) ways of making community. They have constructed a peer-reviewed manuscript and PhotoVoice book draft.
Additionally, the team interviewed 39 individuals with IDD. Preliminary analysis revealed how the pandemic exacerbated the direct care worker crisis, forcing people to move into restricted housing. Stable group housing often resulted in being confined to one room, restricted daily activities, and decreased autonomy. Housing contexts influenced COVID risk, physical, and mental health for people with IDD.
Aim 3: Survey data revealed that IDD-focused nonprofit organizations were not significantly more impacted by COVID-19 than non-IDD focused organizations but rather impacted in a different way. IDD-focused organizations appeared to be more adaptable to their clients’ needs and restrictions imposed by the pandemic.
The researchers completed interviews with individuals who held leadership roles in nonprofit organizations. The disability nonprofit world has expanded, adapted, and changed since the first and second waves of the pandemic. People with IDD are uniquely vulnerable during a health crisis, relying heavily on nonprofit services for activities of daily living at home and in the community.
Lasting Impact
The project’s findings provide actionable information to inform effective service delivery, system change, and policy development to support the needs of a particularly vulnerable community, people with IDD, during future public health crises. Project partners will meet to determine how to further shape findings for advocacy impact.
This project’s approach to community engaged research prioritized hearing directly from people with IDD and has gathered interest from community partners and peers. They provided a framework for meaningful engagement from co-researchers and community partners, which has supported other community engagement projects on the UW-Madison campus.
The researchers have received a grant through the Morgridge Center for Public Service focused on food and nutrition security for people with IDD in Wisconsin. Two more grants to build on aspects of the current work are under review.
