Update: May 25, 2021: Today, CPR along with a coalition of Arizona and national civil rights groups who worked in close collaboration with the Arizona Department of Health Services (ADHS) and the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) announce the federal approval of revised crisis standards of care. Read more.
Update: March 31, 2021: On March 30, 2021, CPR joined Disability Rights Nebraska, the Arc, the National Federation for the Blind, and a coalition of Nebraska stakeholder organizations in filing a supplemental complaint with the federal Health and Human Services Office of Civil Rights (OCR) concerning TestNebraska, the State’s COVID-19 testing program. This supplemental complaint details the continuing legal violations and accessibility problems caused by the State testing program, and first raised with OCR in June of 2020. Read more.
Update: February 23, 2021: The Department of Health & Human Services Office for Civil Rights (HHS OCR) has resolved a disability discrimination complaint against the MedStar hospital system, which operates in Washington, DC, Maryland and Virginia. Complainant William King is a 73-year-old man with communications-related disabilities, who was refused access to his designated support person during a lengthy hospital stay. Read more.
Update: February 12, 2021: The Center along with a coalition of civil rights groups and legal scholars have released a new report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.” The report explores and addresses how crisis standards of care may perpetuate medical discrimination against people with disabilities, older adults, higher weight people, as well as Black, Indigenous, and other people of color, in hospital care.
Update: January 15, 2021: The US Department of Health & Human Services Office for Civil Rights (OCR) resolved a federal complaint filed by Disability Rights North Carolina (DRNC) and The Arc of North Carolina alleging that North Carolina’s scarce medical resource plan illegally deprioritized people with disabilities in the allocation of lifesaving care. DRNC and The Arc of North Carolina were joined by CPR as well as The Arc of The United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network and Samuel Bagenstos. In response to the complaint and engagement with OCR, North Carolina revised its “Protocol for Allocating Scarce Inpatient Critical Care Resources in a Pandemic” to comply with federal disability rights laws and ensure that people with disabilities will not face discrimination through public health emergencies such as COVID-19.
Update: January 14, 2021: CPR, Disability Rights Texas, The Arc and Justice in Aging collaborated with two Texas regional health groups, North Texas Mass Critical Care Guideline Task Force (NTMCCGTF) and Southwest Texas RAC, along and the Office for Civil Rights (OCR), resulting in the approval of revised crisis standards of care. The revised guidelines comply with federal disability rights laws and ensure the nondiscriminatory treatment against individuals with disabilities and older adults, even when public health emergencies such as the COVID-19 pandemic necessitate the rationing of scarce medical resources. In addition to the revision, CPR along with The Arc and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.
Update: November 30, 2020: CPR, along with The Arc, Bazelon Center, Autistic Self Advocacy Network, and Professor Sam Bagenstos, has updated our Evaluation Framework for Crisis Standards of Care Plans which was developed to assist stakeholders in evaluating Crisis Standards of Care in their states. You can read the updated framework here and can find more resources on Crisis Standards of Care Plans below.
Update: November 12, 2020: Utah, in collaboration with HHS Office for Civil Rights, revised its August 2020 Crisis Standards of Care (CSCs) to remove the age-based tie breaker. The new standards are here. With this recent change (along with the changes Utah made in August), Utah has addressed the provisions that CPR and our partners alleged were discriminatory. Read our August news item here.
Update: September 17, 2020: The Centers for Medicare & Medicaid Services (CMS) at the U.S. Department of Health and Human Services issued a new guidance document about visitation in nursing homes. Among other things, it describes circumstances when in-person supports are required under federal disability laws. CPR is advocating for CMS to issue similar guidance about other congregate settings. You can read the full guidance here.
Many communities are feeling overwhelmed by the novel COVID-19 pandemic, with many state and local governments declaring a state of emergency. As the number of COVID-19 cases increase, health care professionals predict that there will be a lack of acute care services & equipment, notably ventilators, to meet the increasing demand. As a result of this fear, some states and medical professionals have begun developing guidance protocols for rationing acute medical care, meaning guidelines to determine who will have access to life-saving treatment. Many of these plans rely on disability-based distinctions, illegally discriminating against people with disabilities. In addition, some states and hospitals have put in place no-visitor policies that illegally deprive people with disabilities of support they need to get equal access to treatment.
CPR is fighting to ensure that people with disabilities have equal access to life-saving COVID-19 treatments. CPR, together with other disability rights organizations, has filed a number of complaints with U.S. Department of Health and Human Services’ Office of Civil Rights (OCR) regarding states’ discriminatory treatment rationing protocols and hospital no-visitor policies. Details on those complaints can be found below.
In response to the disability community’s strong advocacy, the U.S. Department of Health and Human Services’ Office of Civil Rights (HHS OCR) published a bulletin on March 28, 2020 to ensure that covered entities follow civil rights laws, including Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which “prohibit discrimination on the basis of disability in HHS funded health programs or activities.” The guidance explains that entities funded by HHS cannot deny people with disabilities medical care “on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities.” It is also discusses the obligations of hospitals to ensure equal access and effective communication. Access the bulletin here.
Below, you can find analyses, filed complaints and advocacy letters, and related media. We and our partners have created this 50 state overview to track state-level policies and advocacy.
HHS Bulletin and Related Advocacy Documents
HHS Office of Civil Rights Bulletin “Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)” (March 28, 2020)
Guidance to States and Health Care Providers On Avoiding Disability-Based Discrimination in Accessing COVID19 Treatment (April 3, 2020).
- Developed by CPR, The Arc, Bazelon Center, Autistic Self Advocacy Network, DREDF, and Professor Sam Bagenstos and endorsed by 90 national disability and healthcare advocacy organizations explaining the requirements in the Bulletin and how states and health care providers can take concrete steps to modify policies and practices to avoid disability discrimination.
Evaluation Framework for Crisis Standards of Care Plans (Updated November 30, 2020).
- Developed by CPR, The Arc, Bazelon Center, Autistic Self Advocacy Network, and Professor Sam Bagenstos to assist stakeholders in evaluating Crisis Standards of Care in their states.
Evaluation Framework for Hospital Visitor Policies (6/9/20)
- Developed by CPR, CommunicationFirst, The Arc, Autistic Self Advocacy Network, Bazelon Center and DREDF to assist stakeholders in evaluating state and individual hospital visitor policies
“COVID-19: Considerations, Strategies, and Resources for Crisis Standards of Care in Post-Acute and Long-Term Care (PALTC) Facilities,” HHS, FEMA and DHS COVID-19 Healthcare Resilience Working Group (9/20/20)
“Crisis Standards of Care and Civil Rights,” HHS’ Assistant Secretary for Preparedness and Recover (4/16/20)
“Ensuring Civil Rights During the COVID-19 Response,” FEMA (4/13/20)
” Civil Rights Protections Prohibiting Race, Color and National Origin Discrimination During COVID‐19” HHS Office of Civil Rights (7/20/20)
Complaints Filed with HHS Office of Civil Rights and Resolutions
- 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)
- 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 Pennsylvania’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)
- Complaint filed by CPR and Oklahoma and national partners regarding OK’s crises standards of care (4/21/20)
- Complaint filed by CPR, Disability Rights Connecticut and partners regarding CT’s hospital visitor policy (5/3/20)
- Complaint filed by CPR, Disability Rights North Carolina and partners regarding protocol for allocating scarce inpatient critical care resources (5/5/20)
- Complaint filed by Disability Rights Oregon and supporters, including CPR, challenging the state’s 2018 Crisis Standard Guidance (5/8/20)
- Complaint filed by CPR, Disability Rights Nebraska, and partners, challenging Nebraska’s ongoing failure to provide access for Nebraskans with disabilities to TestNebraska (6/17/20)
- Complaint filed by CPR, Arizona Center for Disability Law, Native American Disability Law Center, and other AZ and national partners, challenging Arizona’s crisis standards of care (7/17/20)
- Complaint filed by CPR, Disability Rights Texas, and other TX and national partners, challenging the North Texas Mass Critical Care Guidelines issued by the North Central Trauma Regional Advisory Council (7/22/20)
- Complaint filed by CPR, Disability Rights Texas and other TX and national partners, challenging Texas’ statewide hospital visitation policy (11/23/20)
- Complaint filed by Disability Rights D.C. and joined by CPR and partners challenging MedStar Hospital’s visitor and designated support person policies.
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)
- Letter from Senators to HHS Secretary Azar, CMS Administrator Verma, and OCR Director Severino regarding non-discrimination in rationing of care to people with disabilities and older adults (4/10/20)
- Letter from CPR, AAPD and 400 disability, aging and patient groups to HHS OCR regarding the need for additional guidance (4/17/20)
- Letter from CPR and other advocacy groups regarding CMS guidance on nursing home visitation (9/30/20)
Legal, Ethical & Medical Analyses re Medical Rationing
“May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-Existing Disabilities? Notes on the Law and Ethics of Disability-Based Medical Rationing,” by law professor Sam Bagenstos in Yale Law Review (4/12/20)
“Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability,” by Disability Rights Education & Defense Fund (DREDF) (3/25/20)
“COVID-19 Triage and Disability: What NOT To Do,” by Professor Joseph Stramondo, a philosophy and bioethics professor at San Diego State University (3/30/20)
“Non-Discrimination in the Stewardship and Allocation of Resources During Health System Catastrophes Including COVID-19,” by the American College of Physicians. The policy states that resource allocation decisions must not be based on unjust or prejudicial criteria that result in discrimination, but should be made based on patient need, prognosis, and effectiveness, and allocation of treatments must maximize the number of patients who will recover, not the number of ‘life years.’ (3/26/20)
“When It Comes to Rationing, Disability Rights Law Prohibits More than Prejudice,” by Ari Ne’eman in The Hastings Center (4/10/20)
“Disability Discrimination in the Rationing of Life Saving COVID Treatment: Who Gets Left Behind?” ABA Civil Righs & Social Justice webinar (4/14/20)
American Academy of Developmental Medicine and Dentistry, Ventilator Policy Statement (Updated May 2020)
Life Expectancy Estimates: A Survey of Research on the Relability of Prognosis by the Center for Public Representation (6/30/20)
Letters to Governors and Other State Advocacy re Medical Rationing
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. We and our partners have also created this 50 state overview to track state-level policies and advocacy.
- 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 (4/1/20)
- CPR follow-up letter re: triage (4/11/20)
- Letter from CPR and a coalition of interested organizations and individuals, to Governor Baker and State officials, responding to the revised Massachusetts Crisis Standards of Care (4/22/20)
- Letter from CPR and local partners to the Massachusetts Health and Hospital Association and others regarding the revised Standards of Care and triage protocols (4/24/20)
- Resource from CPR and MA Disability Law Center regarding what Massachusetts patients with disabilities need to know about rationing and accommodations during the COVID-19 pandemic (6/20)
- Letter from CPR to Secretary Sudders re: July 8th coalition meeting on Crisis Standards of Care (6/30/20)
- Letter from disability advocates to Governor Dunleavy regarding medical rationing (4/2/20)
- Letter from disability advocates to Governor Ducey regarding medical rationing (6/26/20)
- Letter from AZ AARP to Governor Ducey regarding medical rationing (6/26/20)
- Letter from Disability Rights Arkansas to Governor Hutchinson regarding medical rationing (4/2/20)
- Letter from Disability Rights California to Governor Newsom (3/16/20)
- Letter from Disability Rights Education & Defense Fund (DREDF) to Governor Newsom (3/20/20)
- Governor Newsom’s guidance relating to non-discrimination in medical treatment (3/30/20)
- Letter from DREDF and other CA orgs to Governor Newsom re CA’s crisis standards of care (4/22/20)
- 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 Connecticut to Governor Lamont and Attorney General Tong regarding medical rationing (4/2/20)
- Letter from Disabilities Law Program of Community Legal Aid Society to Governor John Carey regarding rationing medical care (4/3/20)
- Letter from Disabilities Law Program to Secretary Walker of DHSS regarding alterations and additions to Standards of Care (4/14/20)
- Delaware Crisis Standards of Care, revised based on input from disability advocates (4/29/20)
- 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)
- Georgia statement “Non-Discrimination in Medical Treatment for Novel Coronavirus 2019 (COVID19)” (4/22/20)
- Letter from Disability Rights Idaho to Office of the Governor regarding medical rationing (4/14/20)
- Letter from Access Living to Governor Pritzker regarding medical rationing (3/26/20)
- Guidance Related to Non-Discrimination in Accessing Medical Treatment from Governor Pritzker and Illinois state leadership (4/10/20)
- Letter from Kentucky Protection & Advocacy and stakeholders to Governor Beshear regarding medical rationing (4/7/20)
- Letter from Kentucky Protection & Advocacy and stakeholders to Secretary Friedlander regarding recommendations to the Crisis Standards of Care and Strategies for Scarce Resource Situations (4/20/20)
- Letter from Kentucky Protection & Advocacy and stakeholders to Secretary Friedlander recommending additional changes to the Crisis Standards of Care and Strategies for Scarce Resource Situations (7/15/20)
- Letter from Disability Rights Louisiana and supporters to Governor John Bel Edwards regarding medical rationing (3/30/20)
- Letter from Disability Rights Maine to Commissioner Lambrew of Maine Department of Health and Human Services regarding medical rationing (4/7/20)
- Letter from disability organizations to Governor Hogan regarding medical rationing (4/9/20)
- Letter from Michigan P&A and other disability rights organizations to Governor Whitmer regarding rationing (4/24/20)
- Executive Order from Governor Whitmer, “Affirming anti-discrimination policies and requiring certain health care
providers to develop equitable access to care protocols” (4/29/20)
- Letter from Disability Rights Mississippi to Governor Reeves regarding medical rationing and other issues (4/9/20)
- Letter from Missouri P&A, DD Council and UMKC Institute for Human Development to Missouri Hospital Association re: comments on state’s ‘Framework for Managing the 2020 COVID-19 Pandemic Response’ (12/2/20)
- Letter from Disability Rights Montana to Governor Steve Bullock regarding medical rationing, quarantine capacity, congregate care settings, Medicaid/DD/Mental Health services, monitoring of service delivery and housing (3/31/20)
- Letter from Disability Rights Nebraska to Governor Ricketts and other state officials regarding medical rationing (3/27/20)
- Letter from Nevada Disability Advocacy and Law Center to Governor Steve Sisolak re medical rationing (4/7/20)
- New Hampshire
- Letter from Disability Rights Center to Commissioner Lori Shibinette of the NH Department of Health and Human Services regarding medical rationing (3/24/20)
- New Jersey
- Letter from Disability Rights New Jersey to Governor Murphy regarding medical rationing (4/3/20)
- New Mexico
- Letter from Disability Rights New Mexico to Governor Lujan Grisham regarding medical rationing (4/22/20)
- 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)
- North Dakota
- Letter from disability organzations to Governor Burgum regarding medical rationing (4/2/20)
- 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 Oregon to OCR Director, Roger Severino regarding crisis care guidance (5/8/20)
- Letter from Disability Rights Pennsylvania to Governor Wolf regarding medical rationing (3/27/20)
- Governor Wolf’s response (3/30/20)
- Disability Rights PA, Health Care Rationing: What Patients with
Disabilities Need to Know During the COVID-19 Pandemic (4/17/20)
- Rhode Island
- Letter from Disability Rights Rhode Island to Governor Raimondo regarding medical rationing (3/30/20)
- Letter from Disability Rights Rhode Island to RI Department of Health regarding Crisis Standards of Care (CSC) (5/19/20)
- Hospital Visitation Guidance, Transitioning from Level 2 to Level 3, Effective 11/2/20
- Letter from Disability Rights RI (DRRI) to Governor re: Access to Care (12/2/20)
- DRRI Press Release: Federal Disabilities Partners Demand Access to Health Care for People with Disabilities (12/3/20)
- Letter from Disability Rights Texas and TX advocates to Governor Abbott and state leadership re medical rationing of care (4/6/20)
- Follow up letter from Disability Rights Texas and TX advocates to Governor Abbott re medical rationing of care (7/1/20)
- 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)
- Washington, DC
- Letter from Disability Rights DC to Mayor Bowser and Deputy Mayor Turnage regarding medical rationing for people with disabilities and PPE for health care providers (4/3/20)
- West Virginia
- Letter from Disaiblity Rights West Virginia to Governor Justice regarding medical rationing (3/27/20)
- Open letter from Disability Rights Wisconsin to health care policy makers in the state (3/26/20)
- Letter from WI Secretary of Health re development of crisis standards of care, appointing a disability expert to the committee and requiring transparency and input from the community
Hospital and Facility Visitor Policies
Strict no-visitor policies put in place at hospitals afacilities have prevented patients with disabilities from safely receiving support from family members or staff necessary for them to effectively communicate with medical personnel or otherwise receive equal access to medical treatment. HHS’ OCR guidance makes clear that states and hospitals have legal requirements to provide reasonable accommodations to ensure people with disabilities have equal access to medical treatment.
CPR, Disability Rights Connecticut, and partners filed the first OCR complaint regarding discriminatory hospital policies. On June 9, 2020, OCR announced a resolution of the complaint, making clear that hospitals and the state agencies that oversee them must modify their visitor policies to ensure people with disabilities have equal access to treatment. Documents below:
- Complaint filed by CPR, Disability Rights Connecticut, and partners regarding CT’s hospital visitor policy (5/3/20)
- HHS OCR press release announcing resolution of the complaint (6/9/20)
- Order from the Connecticut Department of Public Health (6/9/20)
- CPR news item and press release on the resolution (6/9/20)
- DRCT press release on the resolution (6/9/20)
Other OCR complaints re hospital visitor policies:
- Complaint filed by CPR, Disability Rights DC, and other advocacy organizations against MedStar (9/16/20)
- Complaint filed by CPR, Disability Rights Texas and other TX and national partners, challenging Texas’ statewide hospital visitation policy (1/13/21)
No visitor policies at long-term care facilities like nursing homes and Intermediate Care Facilities have also led to denials of in-person supports necessary for equal access and for resident health and safety. Due to advocacy from CPR and other disability and aging organizations, the Centers for Medicare & Medicaid Services (CMS) recently issued this guidance about visitation in nursing homes, including the circumstances where accommodations to no visitor policies are necessary to comply with federal law: Nursing Home Visitation — COVID19 (9/17/20). The COVID-19 Healthcare Resilience Working Group of HHS, FEMA and DHS issued this guidance document discussing legally required in-person support and visitation in all long-term care facilities: COVID-19: Considerations, Strategies, and Resources for Crisis Standards of Care in Post-Acute and Long-Term Care (PALTC) Facilities.
To assist stakeholders in evaluating their state or individual hospital visitor policies, CPR, together with CommunicationFIRST, The Arc, Autistic Self Advocacy Network and other partners, put together this Evaluation Framework for Hospital Visitor Policies (6/9/20)
The Autistic Self Advocacy Network and Green Mountain Self Advocates have put together this plain language booklet, “Know your Rights: Bringing a Supporter to a Hospital or a Doctor’s Office” (6/9/20)
Below are state policies that provide exceptions to “no visitor” policies when necessary for people with disabilities:
- Alabama: Order of the State Health Office, Hospital visitor policy at paragraph 11 (4/28/20)
- Letter from AL Advocates re hospital visitor policies (8/10/20)
- California: California Department of Public Health, Visitor Limitations Guidance (5/2/20)
- Connecticut: Order from the Department of Public Health (6/9/20)
- Delaware: Department of Health and Social Services Hospital Guidance (5/8/20)
- Illinois: Illinois Department of Public Health, Support Persons in Health Care Facilities (including hospitals) (5/15/20)
- Maryland: Department of Disabilities & Department of Health, Access to Support for Patients with Disabilities in Hospital Settings (5/11/20)
- Massachusetts: Office of Attorney General, Rights of Disabled Persons to Accommodations During COVID-19 Crisis (4/27/20) and Department of Public Health, Patient Visitors in Hospitals during the COVID19 Outbreak (6/9/20)
- New Jersey: Department of Health, Support Person(s) Permitted for Patient with a Disability (Updated 5/12/20)
- New York: Department of Health, COVID-19 Updated Guidance for Hospital Operators Regarding Visitation (4/10/20)
- North Carolina: Department of Health and Human Services, Title II Americans with Disabilities Act (ADA) and Section 504 Rehabilitation Act (RA) Protections during the COVID-19 Pandemic (6/5/20)
- Ohio: Departments of Health, Medicaid & Developmental Disabilities Services, Guidance: COVID-19 Standards of Care for Vulnerable Populations (5/6/20) (updated 6/29/20)
- Oregon: Oregon state law (7/2020 ); Oregon Health Authority, Revised COVID-19 Visitation Guidance for Acute Care Facilities (4/23/20)
- Pennsylvania: Department of Health, Guidance on Hospitals’ Responses to COVID-19 (Updated 5/23/20)
- Rhode Island: Department of Health, Healthcare Facilities Visitation Policy (5/8/20)
- Virginia: Letter from VA advocates to Governor Northam (7/17/20)
Other resources regarding hospital visitor policies: