DISABILITY COMMUNITY INVOLVEMENT KEY TO SOLVING HEALTH DISPARITIES

New report details solutions for Pennsylvania Department of Health, other agencies to use in addressing COVID-19 health care barriers for people with disabilities

HARRISBURG, Pa., Sept. 12, 2023 /PRNewswire/ -- The COVID-19 pandemic was devastating for people with disabilities, their families, caregivers, and the entire disability community. Solving the health disparities faced by people with disabilities starts with their involvement in policy making and healthcare decisions, according to a new report from the COVID-19 Health Disparities Task Force facilitated by The Arc of Pennsylvania.

"Let's be clear: This isn't just a COVID issue," said Sherri Landis, Executive Director of The Arc of Pennsylvania, the state's leading advocacy organization promoting the human rights of individuals with intellectual and developmental disabilities. "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."

The meaningful involvement of people with disabilities at all levels was the first of 10 core solutions recommended to the Pennsylvania Department of Health for it to implement in helping to address COVID-19 health care barriers among people with disabilities, their families, and caregivers. Those barriers were identified in a report last year from the Task Force and The Arc, which identified effects the COVID-19 emergency response had on the disability community.

Since that report was issued in August 2022, The Arc convened regional workgroups to ask members of the disability community about solutions to address those barriers in the future. The report notes that the 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 disability community faces complex and nuanced health barriers," Landis said. "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."

The Task Force's latest report, "Recommendations for Addressing COVID-19 Health Disparities Among the Disability Community," concludes 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. It includes 10 core solutions specific to the Department of Health, and 15 additional recommendations that require action from or cooperation between other/different state departments.

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. The contributors represented diverse types of disabilities, including physical, intellectual, developmental, and behavioral, as well as emotional, sensory impairment, and complex medical disabilities.

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 over the last year to identify the barriers, core solutions and recommendations.

The 10 recommended core solutions specific to the Pennsylvania Department of Health were:

1. Involve people with disabilities, their families, and caregivers in policy making and healthcare decisions.
2. Reactivate the Governor's Cabinet and Advisory Committee for People with Disabilities.
3. Keep helpful policy changes from the COVID-19 pandemic.
4. Expand community-based healthcare, including telehealth services and mobile clinics.
5. Include disability representatives in the Office of Health Equity Advisory Committee.
6. Provide disability-specific training for healthcare professionals.
7. Designate people with disabilities as a Medically Underserved Population.
8. Collect standardized data on the health needs of people with disabilities.
9. Provide information in multiple languages, easy-to-understand and easy to access formats.
10. Remove disability as a factor in healthcare decision making during emergencies.

The full report can be found at https://thearcpa.org/healthcare-initiatives

SOURCE The Arc of Pennsylvania