Phoenix, AZ – Today Arizona and national civil rights groups, 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 approval of revised crisis standards of care. These standards determine who does and does not receive care in the event of a shortage of health care resources. The revisions announced today ensure that the standards comply with federal civil rights laws and prevent discrimination in the provision of health care during this pandemic.

The following are the critical updates that were made to prevent discrimination in health-care decision-making:

• Health care decisions that discriminate against protected groups are prohibited. Triage decisions will be made without discrimination on the basis of individuals’ disability, age, race, ethnicity, color, national origin, religion, sex, veteran status, genetic information, sexual orientation, or gender identity.
• No Exclusions or Deprioritizing Based on Resource Intensity or Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because of a person’s diagnosis or functional impairment. Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence.
• Resource Decisions Based Only on Short-Term Survivability: Determinations about treatment can only be based on short-term survivability. Since long-term predictions of the outcome of treatment is fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of older adults and people with disabilities, they are explicitly prohibited.
• Reasonable Modifications Required: Hospitals must make reasonable accommodations to the support needs and communication styles of persons with disabilities, and reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)— or other tools that may be used to prioritize access to medical treatment—to correct against the impact prior conditions may have on the assessment of organ failure scoring. Other reasonable modifications, including modifications to no-visitor policies, may also be required to provide equal access to treatment.
• Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment.
• Blanket Do Not Resuscitate (DNR) Policies Prohibited: Hospitals must provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket DNR policies. Physicians may not require patients to complete advance directives in order to continue to receive services from the hospital.

“Individuals with disabilities have a right to equal access to life-saving treatment. These revised crisis guidelines protect this right, and require that hospitals provide support to exercise this right,” said Steven Schwartz, the Legal Director of the Center for Public Representation.

“Advocates diligently worked for more than a year to ensure older adults are treated with dignity during the pandemic,” said Regan Bailey, Litigation Director for Justice in Aging. “This most recent policy out of Arizona further recognizes that discrimination against older adults has no place in the decision of who gets limited life-saving treatment.  Arizona’s new policy is an important step in eliminating ageism, ableism, racism, and all other forms of discrimination in health care.”

“Today’s resolution makes major progress toward ensuring that people with disabilities have equal access to medical care during the pandemic and beyond,” said Peter Berns, Chief Executive Officer for The Arc. “We will keep fighting for revisions to policies that could mean the difference between life and death for people with disabilities.”

Those involved in the resolution included Arizona and national advocacy groups for persons with disabilities, communities of color, and older individuals: Arizona Center for Disability Law, The Arc Arizona, Arizona Center for Law in the Public Interest, Native American Disability Law Center, Justice in Aging, Center for Public Representation, The Arc of the United States, Disability Rights Education and Defense Fund, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, and the American Civil Liberties Union of Arizona.

In addition to working with OCR and other entities to revise crisis standard of care policies nationwide, The Arc, the Center for Public Representation, and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.

Washington, D.C. – Today, a coalition of civil rights groups and legal scholars announce the release of a new report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.” Crisis standards of care are used to decide who should receive priority for treatment when there are not enough resources to serve everyone. 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. Many face pervasive negative biases and inaccurate assumptions about their value, quality of life, capacity to communicate and make decisions, and likelihood of survival. During this pandemic, these biases can have deadly consequences when hospitals must make decisions about which critically ill patients should receive treatment.

The report provides an explanation of crisis standards of care policies implemented by states and hospital systems and how they may discriminate against marginalized individuals and communities, the principles that should apply to prevent discrimination, the relevant civil rights legal framework, and recommended strategies to ensure that crisis standards do not discriminate during the pandemic or in the future. The report highlights the deaths of Michael Hickson—a Black father of five with multiple disabilities—and Sarah McSweeney—a white woman with significant disabilities—who were denied life-sustaining treatment by physicians who expressed clear biases regarding the value of their lives.

“This pandemic has highlighted existing health inequities and deeply entrenched medical biases that threaten the lives of marginalized individuals and communities,” said Peter Berns, CEO of the Arc. “The Arc has worked hard to advocate for individuals with disabilities during this pandemic and we hope that this report will educate a variety of stakeholders on how to prevent bias and stereotypes from seeping into the medical decision-making process.”

“This Report contextualizes our current historical moment and offers clear directives to ensure that race and disability remain at the forefront of short-term responses and long-term reforms,” said Professor Jasmine Harris with the University of California, Davis School of Law and a member of The Arc’s Board of Directors and Legal Advocacy Committee. “The current pandemic brought to the fore longstanding systemic inequities in healthcare, employment, and socio-political participation. Underlying health conditions—such as respiratory impairments like asthma, high blood pressure, and obesity—leave People of Color, disabled people, and BIPOC with disabilities particularly at risk for contagion and complications, including death. Yet these ‘underlying health conditions’ are not inherently personal, rather, they reflect institutional choices about access to healthcare, housing, food and environmental hazards—that, in turn, increase the risk for People of Color, disabled people, and BIPOC.”

“The history of medicine has long discarded the lives of disabled Black, Indigenous and other People of Color, and disabled BIPOC who live at the intersection of other marginalized identities,” said Professor Natalie Chin with the City University of New York School of Law and a member of The Arc’s Legal Advocacy Committee. “This Report provides medical professionals with a strategic roadmap to confront bias and ultimately improve healthcare outcomes so that we can firmly say, ‘Yes, all bodies are valued.’”

The authors of the report include the Bazelon Center for Mental Health Law, the Lawyers’ Committee for Civil Rights Under Law, The Arc of the United States, the Center for Public Representation, Justice in Aging, Disability Rights Education and Defense Fund, the National Disability Rights Network, the Autistic Self Advocacy Network, Professor Jasmine Harris of the University of California, Davis School of Law, and Professor Natalie Chin of the City University of New York School of Law.

Many of the advocates who authored this report have been involved in filing a number of complaints with the U.S. Department of Health and Human Services, Office for Civil Rights challenging medical discrimination by states and hospitals, including discriminatory crisis standard of care plans, no-visitor policies, and inaccessible COVID-19 testing sites. Through this work, advocates have reached resolutions with a number of states and hospitals that make significant progress toward preventing medical discrimination during COVID-19. However, as outlined in this report, much work remains to be done to ensure every individual, regardless of their identity, receives equal access to care during this pandemic and in the future.

 

By Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel

On September 26, President Donald Trump announced his nomination of Judge Amy Coney Barrett of the Seventh Circuit Court of Appeals for a seat on the U.S. Supreme Court following the passing of Justice Ruth Bader Ginsburg. Judge Barrett’s confirmation hearing before the Senate Judiciary Committee began today. The Arc is not taking a position on Judge Barrett’s nomination. As the confirmation process for this lifetime appointment unfolds, here we provide an overview of Judge Barrett’s disability and civil rights record to ensure our members and constituents in the disability community are fully informed about issues that impact people with disabilities.  

Judge Barrett was nominated by President Trump to the Seventh Circuit Court of Appeals on May 8, 2017 and confirmed by the Senate on October 31, 2017. Prior to her appointment to the Seventh Circuit, she was a professor at Notre Dame Law School and a judicial clerk for Justice Antonin Scalia on the U.S. Supreme Court. Given her relatively short time on the bench, this overview includes sources such as law review articles and public speeches, in addition to key opinions from her judicial record. 

Health Care

Background: The Arc has long fought for the rights of people with disabilities to have timely access to high quality, comprehensive, accessible, affordable health care that meets their individual needs, maximizes health, well-being and function, increases independence and community participation, and is aligned with principles of non-discrimination and equity. Through its public policy and legal advocacy work, The Arc has vigorously advocated for the Affordable Care Act (ACA) as essential for people with disabilities in providing affordable and necessary health care, Medicaid expansion, and protections for pre-existing conditions and against discrimination. The ACA also protects against lifetime coverage limits, guarantees coverage of services for mental health and developmental disabilities, and provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions. The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not otherwise be able to afford health insurance, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

Judge Barret’s Record: Though Judge Barrett has not ruled in a case involving the ACA, she has been a vocal opponent of the law in a number of public forums. In a Notre Dame law review article discussing various approaches to judicial interpretation of statutes, Judge Barrett criticized the U.S. Supreme Court’s 2012 NFIB v. Sebelius decision upholding the ACA, writing that Chief Justice John Roberts had “pushed the Affordable Care Act beyond its plausible meaning to save the statute. He construed the penalty imposed on those without health insurance as a tax…had he treated the payment as the statute did—as a penalty—he would have had to invalidate the statute as lying beyond Congress’s commerce power.”

In 2015, in King v. Burwell,the U.S. Supreme Court again upheld the ACA, with Chief Justice Roberts writing the majority opinion and noting: “Congress passed the Affordable Care Act to improve health insurance markets, not to destroy them.” Justice Scalia dissented based on his interpretation of the law to prohibit subsidies in states with federal exchanges. Judge Barrett supported Justice Scalia’s interpretation in an interview on public radio. On November 10, the Court will hear oral arguments for California v. Texas, a case in which the constitutionality of the ACA has been challenged, threatening the law’s overall validity. Given Judge Barrett’s previous remarks on ACA-related cases and the shifting makeup of the court, the future of the ACA is under great threat, putting the health care of millions with disabilities in jeopardy.

Federal Disability and Civil Rights Laws

Background: The history of living with a disability in the U.S. has largely been one of discrimination, segregation, and exclusion from education, work, housing, and routine daily activities. Over its 70 year history, The Arc has been instrumental in the enactment of federal disability civil rights laws—including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the Individuals with Disabilities Education Act—which have helped society make great strides in protecting the civil rights of people with disabilities. The Arc has fought vigorously against a variety of attempts to narrow the scope of these protections. A robust interpretation and enforcement of federal disability and other civil rights laws is critical to ensuring the right of people with disabilities to live, work, learn, and play in the community, free from discrimination.

Judge Barrett’s Record: In 2019, Judge Barrett joined a decision out of the Seventh Circuit Court of Appeals upholding the state of Wisconsin’s open-enrollment program allowing public school students to apply to transfer from their resident school district to a nonresident district with available space. Plaintiffs—parents of students with disabilities who were denied transfers based on their special education needs—challenged the program as discriminatory.  The program allows districts to distinguish between “regular education and special education spaces” and nonresident districts can deny a student’s transfer application if the district lacks the services or space necessary to meet their disability-related needs.

The court found for the state, holding that: “Differential treatment of special-needs students doesn’t make the program unlawful. Federal law ‘forbids discrimination based on stereotypes about a handicap, but it does not forbid decisions based on the actual attributes of the handicap.’ The program makes decisions based on the actual needs of disabled students, so it complies with federal law.” The ADA was enacted to provide a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” The court’s interpretation that the law is narrowly limited to protecting against “stereotypes” rather than discrimination based on the actual needs of people with disabilities is deeply concerning and inconsistent with the purpose of the statute.

More broadly, outside of the disability realm, Judge Barrett has consistently interpreted civil rights laws extremely narrowly to the detriment of marginalized groups, including people of color, older adults, and the LGBTQ+ community.[1]

Discrimination in Immigration Policy

Background: In 2018, the U.S. Department of Homeland Security announced the “public charge” rule which allows the federal government to deny admission into the U.S. based on the likelihood of an individual relying on public benefits for support. Through public policy and in the courts, The Arc has fought this rule because it discriminates against people with disabilities by allowing the government to deny admission into the U.S. based solely on a person’s disability and the use or expected use of public benefits like Medicaid. It also discourages immigrant families from utilizing critical public services—such as Medicaid, the Supplemental Nutrition Assistance Program, housing assistance, and other important programs—out of fear of harming their immigration status. Overall, the rule unfairly restructures immigration in a way that is detrimental to people based on their disability.

Judge Barrett’s Record: Earlier this year, in Cook County v. Wolf, the Seventh Circuit Court of Appeals upheld a preliminary injunction of the “public charge” rule, holding that it discriminates against people with disabilities by making it more difficult for immigrants with significant disabilities to come to the U.S. because of their increased likelihood of relying on government benefits for support: “The conclusion is inescapable that the Rule penalizes disabled persons in contravention of the Rehabilitation Act.” Judge Barrett dissented, writing that she would vacate the injunction based on her understanding that “DHS’s definition is a reasonable interpretation of the statutory term ‘public charge.’”[2]

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[1] See, e.g. Equal Employment Opportunity Commission v. AutoZone (7^th Cir. 2017) (denying petition for en banc rehearing of a case in which the lower court ruled for the employer where the EEOC claimed that AutoZone had an unlawful practice of segregating employees by race when it assigned Black employees to stores in Black neighborhoods, which the dissent criticized as an unlawful “separate-but-equal arrangement”); Kleber v. CareFusion Corporation (7^th Cir. 2019) (joined majority opinion holding that the Age Discrimination in Employment Act protects only current employees from discrimination due to disparate impact, not outside job applicants. One dissenting judge criticized the opinion, noting: “Wearing blinders that prevent sensible interpretation of ambiguous statutory language, the majority adopts the improbable view that the Act outlawed employment practices with disparate impacts on older workers, but excluded from that protection everyone not already working for the employer in question.”); Amy Coney Barrett, Hesburgh Lecture, Jacksonville University Public Policy Institute, 2016, available at: https://www.youtube.com/watch?v=7yjTEdZ81lI (criticizing Obergefell v. Hodges (U.S. 2015)—Supreme Court decision establishing a constitutional protection for marriage equality for same sex couples—and noting that Title IX should not be interpreted to extend its protections to transgender people.). Judge Barrett also provided paid speeches in 2015 and 2016 to the Alliance Defending Freedom, an organization designated as a hate group by the Southern Poverty Law Center.

[2] For more information on Judge Barrett’s disability record, see The Bazelon Center, “Amy Coney Barrett’s Record on Issues Affecting People with Disabilities”