In the current COVID-19 health crisis, people with disabilities are at double risk. The virus itself hits people with underlying conditions harder, and long-standing discrimination in our healthcare system means that people with disabilities are most likely to bear the burden of “rationing” measures that hospitals and providers will put into place as patient needs strain the resources of the U.S. healthcare system.
Let’s not forget that people with disabilities have historically experienced discrimination in the provision of medical treatment. Long-standing triage protocols in other states such as Alabama and Colorado already exclude many people with developmental disabilities or neuromuscular disease. Studies collected by the National Council on Disability document that a large segment of the medical community refuses even to treat patients with disabilities; a quarter of doctors in one study refused to schedule an appointment with potential patients who used wheelchairs. Disabled patients “experience health care disparities, such as lower rates of screening and more difficulty accessing services, compared to people without disabilities.”
- Do not deny or limit care to people with disabilities based on existing disabilities. The lives of people with disabilities are equally valuable to the lives of people without disabilities.
- Do not deny or limit care to people with disabilities because a disabled person has a lower likelihood of survival or may require more intensive care.
- Do not impose quality of life judgements when deciding to deny or limit COVID-19 treatment.
- Do not deny or limit treatment to people with disabilities who may require reasonable accommodation during or after treatment
- Guidance Relating to Non-Discrimination in Medical Treatment for Novel Coronavirus 2019 (COVID-19) – Governor J.B. Pritzker of Illinois took an important first step forward by announcing new guidance regarding non-discrimination in emergency healthcare situations. This is the direct result of concerns expressed by more than 140 Illinois organizations in a March 30 letter to the State coordinated by Access Living (see this link for the letter).
Alabama Withdraws Discriminatory Ventilator Rationing Policy and Issues Directive About Non-Discrimination in Accessing Life-Saving Treatment – in response to a complaint filed with the U.S. Department of Health and Human Services Office for Civil Rights (OCR) by the Alabama Disability Advocacy Program (ADAP) and other disability rights advocates, the state of Alabama has withdrawn its discriminatory ventilator rationing policy and instructed hospitals across the state that they cannot discriminate against people with disabilities in accessing treatment.
Complaints Filed with HHS Office of Civil Rights
- Complaint filed by CPR and WA and national partners regarding Washington State Department of Health & the Northwest Healthcare Response Network’s rationing scheme (3/23/20)
- Complaint filed by CPR and AL and national partners regarding Alabama’s ventilator rationing scheme (3/24/20)
- Press release
- CPR news item
- HHS Office of Civil Rights Resolution announcement
- Press release from CPR and AL and national partners re resolution
- Complaint filed by CPR and KS and national partners regarding Kansas’ Toolkit for COVID-19 (3/27/20)
- Complaint filed by TN advocates, together with CPR and national partners, regarding Tennessee’s “Guidelines for the Ethical Allocation of Scarce Resources” (3/27/20)
- Complaint filed by PA advocates regard Pennsylania’s rationing standards of care (4/3/20)
- Complaint filed by CPR and Utah and national partners regarding Utah’s crisis standards of care (4/6/20)
- Complaint filed by Disability Rights New York re ventilator rationing policy (4/7/20)
Letters from National Organizations
- Letter from NCD to HHS OCR Director Roger Severino (3/18/20)
- Letter from CCD to HHS Secretary Alex Azar and HHS OCR Director Roger Severino (3/20/20)
- Letter from thirty-two members of Congress to HHS Secretary Alex Azar and U.S. Attorney General William Barr asking them to issue guidance to states (3/25/20)
Letters to Governors and Other State Advocacy
Local advocacy groups have been sending letters to governors on medical treatment rationing and discrimination. Those letters and related responses from governors are included below:
- Letter from CPR and local partners to Governor Baker on the need for statewide guidelines preventing discriminatory allocation of life-saving medical care (3/26/20)
- Letter from CPR and local partners to the Massachusetts Health and Hospital Association, the College of Boston Teaching Hospitals, and the Massachusetts Medical Society recommending non-discriminatory triage assessment criteria for use in MA hospitals (4/3/20)
- Letter from Colorado Cross-Disability Coalition and CO organizations to Governor Polis regarding needs of the disability community, including non-discrimination in rationing care (3/25/20)
- Letter from Colorado Cross-Disability Coalition and CO organizations to Governor Polis regarding rationing medical care (4/1/20)
- Letter from Disability Rights Florida to Governor DeSantis regarding medical rationing (3/30/20)
- Letter from Georgia Council on Developmental Disabilities, Georgia Advocacy Office and other stakeholders to Governor Kemp, including about non-discrimination in medical rationing (3/28/20)
- Letter from Access Living to Governor Pritzker regarding medical rationing (3/26/20)
- Letter from Kentucky Protection & Advocacy and stakeholders to Governor Beshear regarding medical rationing (4/7/20)
- New Jersey
- Letter from Disability Rights New Jersey to Governor Murphy re medical rationing (4/3/20)
- New York
- Letter from Disability Rights New York to Governor Cuomo regarding medical rationing (3/26/20)
- North Carolina
- Letter from Disability Rights North Carolina to NC HHS Secretary Cohen regarding medical rationing (4/3/20)
- Letter from Disability Rights Ohio to Governor DeWine regarding medical rationing (4/3/20)
- Letter from Oklahoma Disability Law Center to Governor Stiff regarding medical rationing (3/31/20)
- Letter from Disability Rights Oregon to Governor Brown (3/24/20)
- Letter from Disability Rights Texas and TX advocates to Governor Abbott and state leadership re medical rationing of care (4/6/20)
- Letter from The Disability Law Center to Governor Herbert regarding rationing policies as well as housing, criminal justice, and other programs affected by COVID-19 (3/25/20)
- Open letter from Disability Rights Wisconsin to health care policy makers in the state (3/26/20) https://www.centerforpublicrep.org/
- FEATURED – Safeguard against Disability Discrimination under COVID-19 – a great one Page Handout on non-discrimination practices for healthcare workers to post and share.
COVID-19 Medical Rationing – Center for Public Representation – great resource on legal and public policy actions
- 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.
- Center for Dignity in Healthcare for People with Disabilities Fact Sheet: Safeguard Against Disability Discrimination During COVID-19 https://www.ucucedd.org/wp-content/uploads/2020/04/Center-for-Dignity-in-Health-Care-fact-sheet-on-rights-for-people-with-disabilities.pdf
- Consortium for Citizens with Disabilities letter on basic legal principles of nondiscrimination in healthcare http://www.c-c-d.org/fichiers/Letter-re-COVID-19-and-Disability-Discrimination-final.pdf
- 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/
- DREDF Know Your Healthcare Disability Rights factsheet (available in multiple languages) https://dredf.org/covid-19-advocacy-and-resources/
- “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/
- Guidance from Disability Legal Groups on non-discrimination in medical rationing related to the HHS Guidance: http://www.bazelon.org/wp-content/uploads/2020/04/4-3-20-Guidance-to-States-Hospitals_FINAL.pdf
- 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
- “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/
- Public Integrity: State Policies May Send People with Disabilities to the Back of the Line (4/8/20)
- New York Times: At the Top of the Covid-19 Curve, How Do Hospitals Decide Who Gets Treatment? (3/31/20)
- WTVC Chattanooga News: TN disability rights advocates: State regulations discriminate by rationing critical care (3/31/20)
- Boston Globe: Those With Disabilities Have a Right to Survive the Coronavirus Pandemic (3/30/20)
- The Hill: Trump officials say people with disabilities must not be denied lifesaving coronavirus care (3/28/20)
- NPR: HHS Warns States Not To Put People With Disabilities At The Back Of The Line For Care (3/28/20)
- New York Times: S. Civil Rights Office Rejects Rationing Medical Care Based on Disability, Age (3/28/20)
- NBC News: Ventilators limited for the disabled? Rationing plans are slammed amid coronavirus crisis (3/27/20)
- ProPublica: People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads (3/27/20)
- com:Alabama limit on ventilators discriminates against intellectually disabled, advocates claim (3/26/20; updated 3/27/20)
- The Appeal: The Coronavirus Pandemic Has Brought Out Society’s Alarming Disregard for People With Disabilities (3/25/20)
- Bloomberg Law: Alabama’s Virus Ventilator Plan Latest to Draw Ire of Disabled (3/25/20)
- MyNorthwest: Advocacy group says people with disabilities could get denied COVID-19 treatment (3/25/20)
- New York Times: Will Disabled People Be at a Disadvantage for Scarce Coronavirus Treatment? (3/23/20)
- U.S. News and World Report: Rights Groups: Coronavirus Treatment Plan Discriminates (3/23/20)
- Bloomberg Law: Virus Stokes Discrimination Concerns From Disability Groups (2) (3/23/20)
- NPR: Disability Groups File Federal Complaint About COVID-19 Care Rationing Plans (3/23/20)
- NPR: People With Disabilities Say Rationing Care Policies Violate Civil Rights (3/23/20)
- Seattle Times: People with disabilities would suffer if coronavirus care is rationed, advocates say in civil-rights complaint (3/23/20)