April 16, 2020
The Honorable Alex Azar
Secretary
U.S. Department of Health and Human Services
200 Independence Avenue S.W. Washington, DC
20201
Roger Severino
Director
Office for Civil Rights
U.S. Department of Health and Human Services
200 Independence Avenue S.W.
Washington, DC 20201
Dear Secretary Azar and Director Severino:
Representing millions of patients, people with disabilities and older adults, our organizations are writing to express our strong and urgent support for the Department’s Office for Civil Rights to issue additional guidance to ensure that schemes to ration scarce health care resources during the coronavirus disease 2019 (COVID-19) pandemic comply with federal nondiscrimination laws.
As you are aware, many states and hospitals plan to rely on Crisis Standard of Care plans to inform providers how to make decisions on the allocation and re-allocation of scarce medical resources. Too many of these plans, however, discriminate based on disability and age, devaluing the lives of people with disabilities and older adults. If implemented, they would deny life-saving treatment to people based on disabilities or age that have nothing to do with their ability to benefit from care and survive COVID-19. This violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act, and the Age Discrimination Act.
It is essential that the federal government provide guidance to states and health care providers setting forth clear requirements to ensure that the health care rationing decisions comply with federal nondiscrimination laws. We greatly appreciate the guidance that has already been issued by the Office of Civil Rights (OCR) in its March 28, 2020 bulletin. But significant confusion remains in the health care provider community. As states move forward with rationing plans in the face of imminent shortages of ventilators and other supplies, hospital beds, and staff, it is urgent that you issue additional guidance.
Additional guidance should clarify that federal law prohibits treatment allocation decisions from being made based on assumptions that a person’s disability or age will diminish the person’s prospect of survival beyond the immediate term or require the use of greater treatment resources. It should clarify that allocation decisions based on “life years,” life expectancy, or prognosis beyond short-term survival discriminate against disabled people and older adults. It should clarify that reasonable modifications must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment. These may include interpreter services, modifications such as increased baseline times for responsiveness to treatment, or additional services needed due to a disability.[1] Similarly, OCR guidance should clarify that federal law prohibits age-based categorizations that penalize older adults by making them automatically ineligible for life-saving care without any individualized assessment.
We agree with the National Council on Disability, which urged OCR to issue clear guidance on these issues and “to maintain robust enforcement activities, including investigations of complaints, and to remind the public in every one of OCR’s communications how they can file such complaints,” and recommended that HHS, “at every opportunity and through each one of its divisions and offices, include standardized language in each of its communications, no matter the topic, regarding civil rights obligations and the steps by which an individual may file a complaint if they believe their civil rights have been violated.”[2]
We also strongly recommend that OCR advise states and healthcare entities of their obligation to maintain data concerning the administration of health care rationing, including accurate tracking of the numbers of persons admitted to hospital, the number who receive ICU for COVID-19 treatment, the number who are denied care or transferred to palliative care only, the number who recover, and the number who die, including disaggregated information about these individuals’ racial, ethnic, gender, and disability status, and whether they were receiving life-sustaining care or palliative care only based on rationing at time of death. Lives have been and will be lost to COVID-19. We owe it to those lives to learn how to better our society and healthcare system’s response to a pandemic, and we cannot achieve improvement without accurate data.
We are pleased that Congress shared its intent that civil rights laws be upheld in this crisis in a bipartisan and bicameral manner in a March 25, 2020 letter to Secretary Azar and Attorney General Barr, stating:
In light of the COVID-19 pandemic, we urge your Department to act quickly to notify states that as they review and create their "crisis standards of care," they must not authorize or promote any form of disability discrimination that would violate the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. This would include incorporating denials of care, lower prioritization of care, or denial of or limitation of healthcare resources on the basis of one's disability, severity of disability, need for resource-intensive services and supports, or the perception of a lower quality of life on the basis of disability.[3]
The policies and guidelines in a significant number of states deny or give lower priority for life-saving treatment to the people with disabilities and older adults that we represent, including those that are the subject of complaints filed with OCR.[4] Policies across the country give people with disabilities and older adults good cause for alarm.[5] We rely on you and your leadership to ensure that the United States lives up to its promise of equal opportunity, nondiscrimination and civil rights of all human beings, especially during times of crisis. Therefore, we look forward to your further guidance and continued enforcement of our civil rights laws.
Sincerely,
National Organizations
| ACCSES |
| ACORN8 |
| African Services Committee |
| Aging Life Care Association |
| Albie Aware Breast Cancer Foundation |
| Alliance for Aging Research |
| Allies for Independence |
| ALPHA-1 FOUNDATION |
| ALS Association |
| American Academy of Physical Medicine & Rehabilitation |
| American Association of People with Disabilities |
| American Association on Health and Disability |
| American Association of Kidney Patients |
| American Autoimmune Related Diseases Association |
| American Behcet's Disease Association |
| American Congress of Rehabilitation Medicine |
| American Council of the Blind |
| American Geriatrics Society |
| American Kidney Fund |
| American Music Therapy Association |
| American Music Therapy Association |
| American Network of Community Options & Resources (ANCOR) |
| American Physical Therapy Association |
| American Psychological Association |
| American Therapeutic Recreation Association |
| Association of Academic Physiatrists |
| Association of Programs for Rural Independent Living |
| Association of University Centers on Disabilities (AUCD) |
| Asthma and Allergy Foundation of America |
| Autism Society of America |
| Autistic Self Advocacy Network |
| Autistic Women & Nonbinary Network |
| Autistic Women and Nonbinary Network |
| Axis Advocacy |
| Bazelon Center for Mental Health Law |
| Black AIDS Institute |
| Bloom's Connect |
| Brain Injury Association of America |
| Bridge the Gap - SYNGAP Education and Research Foundation |
| California Chronic Care Coalition |
| Cancer and Careers |
| Cancer Support Community |
| CancerCare |
| Caregiver Action Network |
| Center for Autism and Related Disorders |
| Center for Disability Rights |
| Center for Independence |
| Center for Public Representation |
| CFC International |
| Christopher & Dana Reeve Foundation |
| Chronic Care Policy Alliance |
| Chronic Disease Coalition |
| Civil Rights Education and Enforcement Center |
| Coelho Center for Disability Law, Policy and Innovation |
| CommunicationFIRST |
| Community Access Center |
| Community Options, Inc. |
| COPD Foundation |
| Cure SMA |
| cutaneous lymphoma foundation |
| Cystic Fibrosis Lifestyle Foundation |
| Cystic Fibrosis Research, Inc. (CFRI) |
| Davis Phinney Foundation |
| Depression and Bipolar Support Alliance |
| Diabetes Patient Advocacy Coalition (DPAC) |
| Disability Action for America |
| Disability:IN |
| Disability Justice |
| Disability Law Center |
| Disability Power & Pride |
| Disability Resource Center |
| Disability Rights Advocates |
| Disability Rights Education and Defense Fund |
| Down Syndrome Affiliates in Action |
| Dreamsickle Kids Foundation |
| Easterseals |
| Epilepsy Foundation |
| EveryLife Foundation for Rare Diseases |
| Friends of Cancer Research |
| Global Liver Institute |
| GO2 Foundation for Lung Cancer |
| Healthcare Rights Coalition |
| Heart Valve Voice US |
| Hepatitis Education Project |
| HIGH IMPACT Mission-based Consulting & Training |
| Huntington's Disease Society of America |
| Immune Deficiency Foundation |
| Independence Empowerment Center |
| Independent Lifestyles, Inc. |
| International Foundation for Autoimmune & Autoinflammatory Arthritis |
| Justice in Aging |
| Lakeshore Foundation |
| Linking Employment, Abilities and Potential (LEAP) |
| Little Lobbyists |
| Living Beyond Breast Cancer |
| Livpact |
| LUNGevity Foundation |
| Lupus and Allied Diseases Association, Inc. |
| Lutheran Services in America |
| Medicare Rights Center |
| Men's Health Network |
| Mental Health America |
| MLD Foundation |
| Multiple Sclerosis Foundaiton |
| Muscular Dystrophy Association |
| NASTAD |
| National Academy of Elder Law Attorneys |
| National ADAPT |
| National Alliance for Hispanic Health |
| National Alliance on Mental Illness |
| National Assocation of Councils on Developmental Disabilities |
| National Association of Rehabilitation Research and Training Centers |
| National Association of Social Workers (NASW) |
| National Association of State Directors of Developmental Disabilities Services |
| National Association of State Head Injury Administrators |
| National Center for Learning Disabilities |
| National Center for Transgender Equality |
| National Coalition for LGBT Health |
| National Council on Independent Living |
| National Diabetes Volunteer Leadership Council |
| National Disability Rights Network |
| National Down Syndrome Congress |
| National Health Council |
| National Health Law Program |
| National Hemophilia Foundation |
| National Infusion Center Association |
| National Minority Quality Forum |
| National MPS Society |
| National Multiple Sclerosis Society |
| National Organization for Rare Disorders |
| National Pain Advocacy Center |
| National Respite Coalition |
| National Sickle Cell Disease Association of America |
| Native American Disability Law Center |
| NCMHR |
| NMD United, Inc. |
| Not Dead Yet |
| NTM Info & Research |
| Paralyzed Veterans of America |
| Parent Project Muscular Dystrophy |
| Partnership for Inclusive Disaster Strategies |
| Partnership to Fight Chronic Disease |
| Partnership to Improve Patient Care |
| Patient Advisor |
| Patient Services Inc. |
| Pulmonary Hypertension Association |
| Rare Army |
| RASopathies Network |
| Resource Center for Accessible Living |
| RespectAbility |
| SeniorLAW Center |
| Sickle Cell Anemia Foundation |
| Sickle Cell Asociation |
| Sickle Cell Foundation Incorporated |
| Solve ME/CFS Initative |
| Spina Bifida Association |
| TASH, Inc. |
| The Advocacy Institute |
| The AIDS Institute |
| The Arc of the United States |
| The Bonnell Foundation: Living with cystic fibrosis |
| The Center for HIV Law and Policy |
| The Center for Independence of Individuals with a Disabilities |
| The Coelho Center for Disability Law, Policy and Innovation |
| The Gerontological Society of America |
| The Hepatitis C Mentor and Support Group-HCMSG |
| The Migraine Diva |
| The National Kidney Foundation |
| The Well Project |
| Treatment Action Group |
| U.S. Pain Foundation |
| United Cerebral Palsy National |
| United Spinal Association |
| United States International Council on Disabilities |
| VetsFirst |
| Whistleblowers of America |
| Williams Syndrome Association |
| Yad HaChazakah-The Jewish Disability Empowerment Center Inc. |
State Organizations
| Ability360 |
| Access Alaska, Inc. |
| Access Living |
| Accessible Resources for Independence Incorporated |
| ADAPT Montana |
| ADAPT of Boston |
| ADAPT of Texas |
| Aging Services Collaborative of Santa Clara County |
| AIDS Law Project of Pennsylvania |
| AIM Independent Living Center |
| Alabama Disabilities Advocacy Program |
| Alliance Center for Independence |
| Aloha Independent Living Hawaii |
| American Nurses Association\California |
| Arizona ADAPT |
| Arizona Center for Disability Law |
| Arizona Epilepsy Foundation |
| Autism Insurance for Oregon |
| BIAA-KY |
| Boston Center for Independent Living |
| Boston Commission for Persons with Disabilities |
| Brain Injury Association of Delaware |
| Brain Injury Association of Georgia |
| Brain Injury Association of Illinois |
| Brain Injury Association of Kansas and Greater Kansas City |
| Brain Injury Association of Massachusetts |
| Brain Injury Association of New York State |
| Brain Injury Association of SC |
| Brain Injury Association of VA |
| Bronx Independent Living Services |
| Brooklyn Center for Independence of the Disabled |
| CA SILC |
| California Access Coalition |
| California Disaster Strategies Coalition |
| California Foundation for Independent Living Centers |
| Cape Organization for Rights of the Disabled (CORD) |
| Catskill Center for Independence, Inc. |
| Center for Disability Rights - CT |
| Center for Independence of the Disabled, NY |
| Center for Independent Living of Central PA |
| Center for Living & Working, Inc. |
| Center on Disabilities and Human Development |
| Central Iowa Center for Independent Living |
| Central PA ADAPT |
| Community Legal Services of Philadelphia |
| Community Resources for Independence |
| Consortium of Idahoans with Disabilities |
| Consumer Directed Personal Assistance Association of New York State |
| CRIL |
| DAWN Center for Independent Living |
| Democratic Disability Caucus of Florida |
| Designer Genes of North Dakota, Inc. |
| DIRECT Center for Independence |
| Disabilities Law Program of Community Legal Aid Society, Inc. |
| Disabilities Resource Center of Siouxland |
| Disability Action Center - NW, Inc. |
| Disability Community Hub |
| Disability Community Resource Center, Inc. |
| Disability Empowerment Center |
| Disability Law Center |
| Disability Law Center of Alaska |
| Disability Law Colorado |
| Disability Policy Consortium |
| Disability Resource Center |
| Disability Rights Arkansas |
| Disability Rights California |
| Disability Rights Center - New Hampshire |
| Disability Rights Center of Kansas |
| Disability Rights Florida |
| Disability Rights Idaho |
| Disability Rights Iowa |
| Disability Rights Louisiana |
| Disability Rights Maine |
| Disability Rights Mississippi |
| Disability Rights Montana |
| Disability Rights Nebraska |
| Disability Rights New Jersey |
| Disability Rights North Carolina |
| Disability Rights of West Virginia |
| Disability Rights Ohio |
| Disability Rights Oregon |
| Disability Rights TN |
| Disability Rights Vermont |
| Disability Rights Wisconsin |
| Disability:IN Greater Kansas City |
| Disability:IN North Carolina |
| Disability:IN Ohio |
| Disabled Resources Center, Inc. (DRC) |
| Down Syndrome Alliance of the Midlands |
| Down Syndrome Association of Brevard |
| Down Syndrome Association of Connecticut |
| Down Syndrome Awareness Group of East TN |
| Down Syndrome Indiana |
| El Paso Desert ADAPT |
| ENDependence Center of Northern Virginia |
| Epilepsy Fondation New England |
| Epilepsy Foundation Arizona |
| Epilepsy Foundation Central & South Texas |
| Epilepsy Foundation Greater Los Angeles |
| Epilepsy Foundation Iowa |
| Epilepsy Foundation Maryland |
| Epilepsy Foundation Nebraska |
| Epilepsy Foundation of Colorado |
| Epilepsy Foundation of Kentuckiana |
| Epilepsy Foundation of Long Island |
| Epilepsy Foundation of Michigan |
| Epilepsy Foundation of Middle and West TN |
| Epilepsy Foundation of Minnesota |
| Epilepsy Foundation of Nevada |
| Epilepsy Foundation of Northern California |
| Epilepsy Foundation of San Diego County |
| Epilepsy Foundation of Virginia |
| Epilepsy Foundation Ohio |
| Epilepsy Foundation Oregon |
| Epilepsy Foundation Texas - Houston/Dallas-Fort Worth/West Texas |
| Epilepsy Foundation Utah |
| Epilepsy Foundation Washington |
| Epilepsy Foundation West Virginia |
| Family Voices of CA |
| Finger Lakes Independence Center |
| Florida Association of Centers for Independent Living |
| Freedom Valley Disability Enablement, Inc. |
| GDC Lifespan |
| Granite State Independent Living |
| Gulf Coast ADAPT |
| Houston Center for Independent Living |
| Idaho Anti-Trafficking Coalition |
| Idaho Council on Developmental Disabilities |
| Idaho State Independent Living Council |
| ILRCSF |
| IMAGE Center of Maryland |
| IndependenceFirst |
| Independent Living Center of the Hudson Valley, Inc. |
| Independent Living Resource Center San Francisco |
| Independent Living, Inc. |
| Indiana Disability Rights |
| Indiana Statewide Independent Living Council |
| Intermountain Fair Housing Council |
| Iowa Chapter of United Spinal Association |
| Iowa SILC |
| Kansas ADAPT |
| Lake County Center for Independent Living |
| Legal Clinic for the Disabled, Inc. |
| Life, A Center for Independent Living |
| LINC- Living Independence Network Corporation |
| Living River: A Retreat on the Cahaba |
| Long Island Center for Independent Living |
| LVCIL (Lehihg Valley Center for Independent Living, (Inc.) |
| Mass Families Organizing for Change |
| Massachusetts |
| MassADAPT |
| Metropolitan Center for Independent Living |
| Michigan Protection & Advocacy Service, Inc. |
| Minnesota Disability Law Center/Mid-Minnesota Legal Aid |
| Minnesota Statewide Independent Living Council |
| Multiple Sclerosis Foundation |
| Nebraska Statewide Independent Living Council |
| Nevada Disability Advocacy & Law Center |
| New York Association on Independent Living |
| New York Association on Independent Living |
| New York State Sickle Cell Advoccy Network INC, NYS.SCAN, |
| North Alabama Sickle Cell Foundation, Inc. |
| North Carolina AIDS Action Network |
| North Central Independent Living Services, Inc. |
| North Central PA ADAPT |
| North Dakota Protection & Advocacy Project |
| Northeast Independent Living Program Inc |
| Northern Regional Center for Independent Living, Inc. |
| NW ADA Center-Idaho, Idaho Access Project |
| NYU Law Disability Allied Law Student Association |
| Ocean State Center for Independent Living |
| Options for Independent Living, Inc. |
| PA ADAPT |
| PA Families Need Nurses Now |
| Paraquad |
| Pennsylvania Council on Independent Living |
| Personal Attendant Coalition of Texas |
| Personal Attendant Coalition of Texas |
| Philly ADAPT |
| Placer Independent Resource Services- local organization |
| Protection & Advocacy System, Inc. |
| Protection and Advocacy for People with Disabilities, Inc |
| Resource Center for Accessible Living, Inc. |
| RCIV |
| Roads To Freedom CIL |
| Roads to Independence |
| San Antonio ADAPT |
| Service Center for Independent Life |
| Sickle Cell Anemia Foundation or Oregon, Inc. |
| Sickle Cell Assoc of Houston |
| Sickle Cell Association - West Alabama Chapter, Inc |
| Sickle Cell Disease Association of America - Mobile Chapter, Inc. |
| Sickle Cell Disease Association of Florida |
| Silicon Valley Independent Living Center |
| SKIL Resource Center |
| SKIL Resource Center |
| Southeast Alaska Independent Living, Inc. (SAIL) |
| Southeastern MN Center for Independent Living |
| Southeastern MN Center for Independent Living, Inc. |
| Southern Tier ADAPT |
| Southern Tier Independence Center |
| Southwest Center for Independence |
| Southwest Louisiana Independence Center |
| Statewide Independent Living Council of Illinois |
| Statewide Independent Living Council of Kansas |
| Stavros Center for Independent Living, inc. |
| Taconic Resources For Independence, Inc. |
| Tennessee Disability Coalition |
| Texas State Independent Living Council |
| The Arc Tennessee |
| The Center for Disability Empowerment |
| The Dayle McIntosh Center |
| The Disability Resource Center of the Rappahannock Area, Inc. |
| The Independence Center |
| The Sickle Cell Association of Kentuckiana |
| The Sickle Cell Association of New Jersey |
| The Sickle Cell Foundation of Tennessee |
| Topeka Independent Living Resource Center |
| Tri-County Independent Living |
| United Vision for Idaho |
| Virginia Board for People with Disabilities |
| Vision for Equality |
| Washington ADAPT |
| West Virginia Statewide Independent Living Council |
| Westchester Independent Living Center |
| Wyoming SILC |
[1] See Letter of March 20, 2020 from Consortium for Citizens with Disabilities Rights and Health Task Force Co-Chairs to Secretary Azar and Director Severino, http://www.c-c-d.org/fichiers/Letter-re-COVID-19-and-Disability-Discrimination-final.pdf.
[2] https://ncd.gov/publications/2020/NCD-letter-response-ocr-bulletin-civil-rights-hipaa.
[3] https://chrissmith.house.gov/uploadedfiles/2020-03-25_bipartisan_bicameral_letter_to_hhs_and_doj_-_covid-19_and_disability_discrimination.pdf. A number of Senators sent a second letter on April 9, 2020 reiterating this view. https://www.warren.senate.gov/imo/media/doc/2020.04.09%20Letter%20to%20HHS%20OCR%20re%20Rationing%20of%20Care.pdf.
[4] https://www.centerforpublicrep.org/covid-19-medical-rationing/.
[5] https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators.
