Disability Advocacy and COVID-19
The American Association of People with Disabilities (AAPD) is a national cross-disability civil rights organization that works to advance the political and economic power of the more than 60 million individuals with disabilities in this country. The COVID-19 pandemic occurring in the United States should be of utmost concern to every lawmaker in the country. The Center for Disease Control and Prevention (CDC) and additional public health experts have stated that people with disabilities are more vulnerable to COVID-19. Beyond the specific conditions or diagnoses that may raise susceptibility to the virus itself, people with disabilities are particularly vulnerable to the broader social, civil, and economic impacts of the coronavirus pandemic.
Below are some resources and actions advocates can take to support people with disabilities’ needs and concerns so they are adequately addressed in COVID-19 efforts.
Disability in the Time of Covid-19: A Storybook
While COVID-19 has impacted the lives of every American, the pandemic has amplified and exacerbated existing disparities faced by people with disabilities, communities of color, women, communities lacking adequate internet and more often with dire consequences. With support from the New America Foundation and Blue Meridian Partners, American Association of People with Disabilities (AAPD) conducted interviews with disability advocates and captured stories of people with disabilities impacted by COVID. We compiled these interviews and stories in a storybook, Disability in the Time of COVID-19. Key recommendations that emerged from the interviews include:
- Increase funding for Home and Community Based Services (HCBS).
- Sustain and expand the Emergency Broadband Benefit established under the CARES Act to build towards inclusive digital infrastructure.
- Reform public benefits to promote financial security and resilience, not poverty.
- Provide Personal Protective Equipment (PPE) and secure higher wages for Direct Support Professionals.
COVID-19 and the Disability Vote
The American Association of People with Disabilities (AAPD) recently published a report on COVID-19 and the Disability Vote, which explores the impact of the COVID-19 pandemic on voting accessibility. Created in collaboration with many disability and voting rights advocates, the report provides key policy recommendations to ensure that voters with disabilities have full access to our democracy in 2020 and beyond. Below are some of actions that AAPD calls for at the local, state, and federal levels of government:
- Make sure all voters can register to vote and cast a ballot remotely.
- Allow voters with disabilities to receive and mark their ballot digitally.
- Make in-person voting safe and accessible with early voting, curbside voting, and more.
- Educate voters on voting rights, options, and safety in multiple and accessible formats.
- Ensure voters in congregate settings can register to vote and cast their ballot.
- Explore, innovate, and test electronic voting methods.
- Ensure states have the funding needed to make voting safe and accessible this election.
Changes in the U.S. Postal Service:
The National Council on Independent Living (NCIL) and the American Association of People with Disabilities (AAPD) are deeply concerned about reports of delays in deliveries and reduced capacity of the U.S. Postal Service (USPS). The recent changes in operations of the USPS and the resulting delays pose a threat to the equal participation of people with disabilities in our communities, our health, and our civil rights. People with disabilities rely on USPS to receive important information and necessities, such as prescription medications and medical supplies, bills and
notices, paychecks and benefit checks, and social communication.
Additionally, many people with disabilities plan to vote by mail in the upcoming election as a way to exercise their most fundamental and sacred right to vote while reducing the risk of exposure to coronavirus.
AAPD and the NCIL collected stories of people with disabilities impacted by the recent USPS changes. We collected over 100 stories and sent a sample of them with this letter to House Leadership and members of the House Oversight Committee in advance of their hearing on the USPS on August 24, 2020. Below are the quotes that stood out the most:
AAPD Community Calls:
On Friday, April 3 AAPD hosted a teleconference focused on the legal non-discrimination obligations for healthcare providers during the COVID-19 crisis. The teleconference addressed legal rights for people with disabilities in health care settings, current practices related to people with disabilities in medical triage, and recommendations to prevent medical rationing and disability discrimination. Featured presenters and experts were:
Ted Kennedy, Jr., Board Chair, American Association of People with Disabilities and Law Partner, Epstein Becker Green.
Kara Ayers, Ph.D., Associate Director, UCEDD, Division of Developmental and Behavioral Pediatrics Assistant Professor, UC Department of Pediatrics Cincinnati Children’s Hospital
Samuel Bagenstos, Professor of Law, University of Michigan
Jennifer Mathis, Policy and Legal Director, Bazelon Center for Mental Health Law
Silvia Yee, Senior Staff Attorney, Disability Rights Education and Defense Fund
- Making Vaccination Sites Accessible for People with Disabilities and Older Adults – AAPD joined around 15 organizations in creating a resource to inform vaccination sites on how to make sure they are complying with the Americans with Disabilities Act and providing reasonable accommodations for all.
- COVID-19 Vaccine Prioritization Dashboard. This dashboard was created by the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities and tracks the priority level of people disabilities in vaccine distribution across the U.S.
- AAPD Condemns Congress’s Exclusion of People with Disabilities from Coronavirus Relief Bill – December 23, 2020
- AAPD Letter to Senate Majority and Minority Leaders: COVID-19 Response Package. – March 18, 2020.
- Letter to Congressional Leaders on COVID-19. (3/24/20). AAPD led over 270 organizations in a letter to congressional members on the COVID-19. Our organizations wrote to strongly encourage congress to include address the needs of people with disabilities in the third COVID relief package.
- How The Disability Community Can Respond to COVID-19. – March 13, 2020.
- COVID-19 Advocacy: If your organization is engaged in advocacy on protecting people with disabilities from COVID-19 or if you have been successful at securing action from your state government, we urge you to share details.
- Guidance to States Hospitals. – April 3, 2020.
- Large Coalition of National Disability and Health Advocacy Organizations Endorse Guidance On Preventing Disability Discrimination in COVID-19 Treatment Rationing. – April 3, 2020.
- Medications Access Template Letter – Medicaid. The CDC currently advises people at high risk of complications – a group including people with disabilities, seniors, and those with chronic illnesses – to obtain and keep on hand a supply of prescription medications in the event that staying at home for prolonged periods of time becomes necessary. In practice, this is is not possible for most, since most payers, including Medicaid, rarely cover refills until 3 to 7 days before a prescription is expected to run out. For those who take a controlled substance, state law often actively prohibits early fills regardless of payer policy. Governors and State Insurance Commissioners can change this. You can use these letters to write to your governor and urge them to take action to allow for early refills, longer refill periods, and mail-order pharmacies in Medicaid and for controlled substances.
- Disability Rights Education and Defense Fund resource Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability https://dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability/
- “Don’t Deny Disabled People Ventilators” op-ed by National Council on Disability Chairman Neil Romano and Sam Bagenstos https://www.washingtonpost.com/outlook/2020/04/06/coronavirus-ventilators-disabled-people/
- Health and Human Services Office of Civil Rights Bulletin on Civil Rights and COVID-19: https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf?fbclid=IwAR351WokrC2uQLIPxDR0eiAizAQ8Q-XwhBt_0asYiXi91XW4rnAKW8kxcog
- Guidance from Disability Legal Groups on non-discrimination in medical rationing related to the HHS Guidance: https://www.centerforpublicrep.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf
- “I will not apologize for my needs” op ed by Ari Ne’eman https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html
- “May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-Existing Disabilities? Notes on the Law and Ethics of Disability-Based Medical Rationing” Yale Law Review Article from Sam Bagenstos. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3559926
- #NoBodyIsDisposable a “Know Your Rights” toolkit for people facing potential triage discrimination based on disability or weight during the COVID-19 pandemic in the United States. https://docs.google.com/document/d/1td5Uq2R_ivBLzPzamnq41T89nLD1UetHzS-9tGr1fsk/edit
- Webpage with additional resources and federal and state advocacy (including OCR complaints and state advocacy coalition letters): https://www.centerforpublicrep.org/covid-19-medical-rationing/.