COVID-19 Medical Rationing & Hospital Visitor Policies

Update: June 26, 2020

Today, in response to a complaint filed by CPR and partners alleging that Tennessee’s “Guidance for the Ethical Allocation of Scarce Resources During a Community-Wide Public Health Emergency” illegally limited people with disabilities’ access to care during the COVID-19 pandemic, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution that for the first time addresses the discriminatory impact of a number of provisions common in many states’ rationing plans. 

You can read more about today’s resolution here.

The resolution follows another complaint filed last week in Nebraska by CPR and partners challenging the inaccessibility of the state’s COVID-19 testing system, TestNebraska. More information on yesterday’s complaint can be found here and for more on the complaints filed in Nebraska, Tennessee, and other states, click here.

Overview
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.

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 Plan (Updated June 26, 2020).

  • Developed by CPR, The Arc, Bazelon Center, Autistic Self Advocacy Network, Visiting Scholar Ari Ne’eman, 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

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)

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)
  • 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)
    • HHS Office of Civil Rights Resolution announcement (6/26/20)
    • CPR press release and news item re resolution (6/26/20)
    • Disability Rights TN, CREEC and TN orgs press release (6/26/20)
  • 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)
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)
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:

  • Massachusetts
    • 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)
  • Arizona
    • 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)
  • Arkansas
    • Letter from Disability Rights Arkansas to Governor Hutchinson regarding medical rationing (4/2/20)
  • California  
    • 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)
  • Colorado
    • 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)
  • Connecticut
    • Letter from Disability Rights Connecticut to Governor Lamont and Attorney General Tong regarding medical rationing (4/2/20)
  • Delaware
    • 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)
  • Florida
    • Letter from Disability Rights Florida to Governor DeSantis regarding medical rationing (3/30/20)
  • Georgia
    • 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)
  • Illinois  
    • 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)
  • Kentucky
    • 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)
  • Louisiana
    • Letter from Disability Rights Louisiana and supporters to Governor John Bel Edwards regarding medical rationing (3/30/20)
  • Michigan
    • 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)
  • Mississippi
    • Letter from Disability Rights Missippi to Governor Reeves regarding medical rationing and other issues (4/9/20)
  • Montana 
    • 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)
  • Nebraska
    • Letter from Disability Rights Nebraska to Governor Ricketts and other state officials regarding medical rationing (3/27/20)
  • 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 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)
  • Ohio
    • Letter from Disability Rights Ohio to Governor DeWine regarding medical rationing (4/3/20)
  • Oklahoma
    • Letter from Oklahoma Disability Law Center to Governor Stiff regarding medical rationing (3/31/20)
  • Oregon
    • 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)
  • Pennsylvania  
    • 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)
      Guidelines
  • Texas
    • Letter from Disability Rights Texas and TX advocates to Governor Abbott and state leadership re medical rationing of care (4/6/20)
  • Utah
    • 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)
  • Wisconsin
    • 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 Visitor Policies

Strict no-visitor policies put in place at hospitals 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)

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)
  • 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)
  • Oregon:  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)

Other resources regarding hospital visitor policies:

Media on Rationing