Report calls for disability community involvement in solving health disparities

A new report recommending the disability community’s involvement in solving health disparities has been released by the Arc of Pennsylvania. 

Facilitated for the COVID-19 Health Disparities Task Force, the report includes contributions from people with lived experience of a disability, caretakers, and family members of those with a disability, and professionals in support fields. It recommends 10 core solutions for Pennsylvania’s Department of Health, including involving people with disabilities, their families and caregivers in policy making and healthcare decisions. 

“Let’s be clear: This isn’t just a COVID issue,” Sherri Landis, executive director of The Arc of Pennsylvania, said in a statement. “These barriers existed long before COVID. The pandemic just shined a light on them. The solutions report goes far beyond COVID to address disparities that have existed for far too long.” 

COVID-19 health care barriers among people with disabilities, their families, and caregivers were identified in an August 2022 report from the Task Force and The Arc. The report identified the effects the COVID-19 emergency response had on the disability community. 

The Arc convened regional workgroups to ask members of the disability community about solutions to address those barriers in the future. It noted that health decisions for people with disabilities are made without their insight and involvement, despite the community being among the country’s largest groups experiencing health disparities. 

The task force’s latest report, “Recommendations for Addressing COVID-19 Health Disparities Among the Disability Community,” concluded a multi-year effort funded with a grant from the Pennsylvania Department of Health through the CDC’s National Initiative to Address COVID-19 Health Disparities Among Populations at High-Risk and Underserved. 

Contributors to the report included people with lived experience of a disability, caretakers, and family members of those with a disability, and professionals in support fields. Individuals with diverse types of disabilities, including physical, intellectual, developmental, and behavioral, as well as emotional, sensory impairment, and complex medical disabilities, were among the contributors. 

Hundreds of individuals from diverse racial, ethnic, and rural populations participated in the initiative through regional and local interviews, surveys, meetings, and listening tours that served as focus groups to identify the barriers, core solutions, and recommendations. 

The recommended core solutions specific to the Pennsylvania Department of Health were: 

• Involve people with disabilities, their families, and caregivers in policy making and healthcare decisions. 

• Reactivate the Governor’s Cabinet and Advisory Committee for People with Disabilities. 
• Keep helpful policy changes from the COVID-19 pandemic. 
• Expand community-based healthcare, including telehealth services and mobile clinics. 
• Include disability representatives in the Office of Health Equity Advisory Committee. 
• Provide disability-specific training for healthcare professionals. 

• Designate people with disabilities as a Medically Underserved Populations. 
• Collect standardized data on the health needs of people with disabilities. 
• Provide information in multiple languages, easy-to-understand and easy to access formats. 
• Remove disability as a factor in healthcare decision making during emergencies. 

“The disability community faces complex and nuanced health barriers,” said Landis. “The first step to addressing these issues is for policymakers to listen to individuals with lived experience. Without their insights, health disparities will continue to plague the disability community.”