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Disability Community Suffered Disproportionately During COVID-19

by | Aug 23, 2022 | Breaking News

Our new report identifies staggering effects of the pandemic & need for greater diversity-inclusive planning in emergency response

(Press Release PDF)    (Comunicado de prensa en español – PDF)


Media Contact: Sherri Landis
P: 717-234-2621, ext. 100
E: slandis@thearcpa.org


New report identifies staggering effects of pandemic & need for greater diversity-inclusive planning in emergency response

HARRISBURG, Pa. (Aug. 23, 2022) — As difficult as the COVID-19 health-care crisis has been on everyone, the impact of this pandemic has been staggering on individuals with disabilities and their families, especially those living in rural areas and those belonging to racial and ethnic minorities, according to a new report from The Arc of Pennsylvania.

Early on during the pandemic, emergency response planning did not consider the unique needs of the disability community, which tends to have worsened health outcomes due to a variety of social and institutional barriers that the pandemic only exacerbated, nor did it account for the challenges people with disabilities face accessing appropriate information or help.

During the yearlong research project that included interviews, surveys, and regional meetings with hundreds of stakeholders, including those with lived experiences of a disability, participants said inequitable access to health care and other social system supports during COVID-19 compounded physical and mental health issues, worsened chronic health conditions, and led to a disintegration in quality of life for entire families.

“If we want to ensure the interests and needs of individuals with disabilities and their families are addressed, then they need to have a seat at the table from the start and they need to be included every step of the way. That didn’t happen here,” 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.

The Arc’s report, COVID-19 Health Care Barriers among People with Disabilities,” is the first part of a multi-year effort funded by the Pennsylvania Department of Health’s Preventative Health and Health Services Block Grant to improve health equity. Having now identified issues that the disability community faced, the workgroups will turn their attention to crafting recommendations for the department to address health disparities. That report is due in mid-2023.

Among the biggest issues that participants reported:

  • Barriers to accessible information (braille, plain language, multicultural information, etc.).
  • Reduced access to testing, vaccinations, and necessary accommodations.
  • Increased risk of severe illness or death due to COVID-19.

The Arc’s research focused on asking participants whether they thought a disability-inclusive approach had been taken to combat COVID-19 and what they thought could be done to ensure a disability-inclusive approach is used to prepare for future emergencies. The responses were catalogued according to social determinants of health, which look at how conditions like where people are born, grow, live, work, play, worship, and age affect someone’s health.

Among some of the specific barriers, participants identified lack of access to professional support staff that put families of children with disabilities in a precarious position, where their ability to work competed with their child’s education, medical, and therapeutic needs. The pandemic exacerbated existing mental health issues — access to support was limited while the need increased — creating social isolation, with many participants reporting individuals being in crisis or attempting suicide.

Safety measures and care needed for the general population competed with critical materials and access that people with disabilities — who often have greater comorbidities — needed for their daily lives. For families of children with complex medical needs, restricted access to gloves, masks, ventilators, and specialized medical equipment created tremendous risk unparalleled by individuals without such complex medical preconditions.

Many individuals with disabilities reported fear and trauma with the loss of a loved one or caretakers, or because of isolation, and said the medical community in general does not know how to serve people with disabilities effectively.

Participants included people with lived experience of a disability, caretakers, and family members of those with a disability, and professionals in support fields. The participants also represented diverse types of disabilities, including physical, intellectual, developmental, and behavioral, as well as emotional, sensory impairment, and complex medical disabilities.

More than 400 individuals from diverse racial, ethnic, and rural populations participated in the study through regional and local interviews, surveys, meetings, and listening tours that served as focus groups over the last year.

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


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The Arc of Pennsylvania’s Making Employment Work course is an ACRE Basic Certification Training. In order to receive certification, participants must attend a 3 day, in-person training and then complete a self-paced, online curriculum. Completing this certification course will qualify individuals to provide Supported Employment services with Pennsylvania’s Office of Vocational Rehabilitation and Office of Developmental Programs. Our training combines lessons learned from traditional Supported Employment and Customized Employment techniques.

Arc Discovery Employment Transitions (ADEPT) is The Arc of Pennsylvania’s customized employment program. The Arc of Pennsylvania supports individuals with significant impact of disability to seek and maintain customized employment in their community. As a result, The Arc of Pennsylvania’s consultants are trained and nationally certified by Marc Gold & Associates, a national leader in customized employment, to provide Discovery, Customized Employment Job Development, and Systematic Instruction to individuals with disabilities in Pennsylvania who are seeking employment. In addition to providing customized employment services, The Arc of Pennsylvania hosts several certification courses with Marc Gold & Associates for individuals and organizations interested in national certification in Discovery, Job Development, and Systematic Instruction.

Include Me is a new model for inclusive education and gaining meaningful employment for Pennsylvania’s students with intellectual and developmental disabilities. The Arc of Pennsylvania and Include Me believe all individuals with significant impact of developmental and intellectual disability deserve equal educational and competitive employment rights. Our mission, build and strengthen the inclusive education capacity for all public-school students, and discover meaningful employment opportunities meeting Pennsylvania employee and employer needs. Include Me strives to ensure all impacted students have equal access to all aspects of life and the community throughout their lifespan.

Include Me is an initiative that was part of the agreement on final terms between the plaintiffs and the Pennsylvania Department of Education in the Gaskin Settlement Agreement. We were initially assigned to work with school districts with the lowest inclusion rates. After the initial success, we have grown in reputation among school districts. Currently districts voluntarily chose our services, which are provided free of charge to the district. In addition to our School Age services, we offer transition-age services to help teams plan a path to customized employment for students transitioning from high school.

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