WASHINGTON – The Arc is once again fighting to defend the Affordable Care Act (ACA) from repeated attacks in the courts. This time, during a global pandemic that has underscored the importance of the ACA and the need to preserve all of its provisions for the many people with intellectual and developmental disabilities who rely on the law for access to health care.

The Arc, with a coalition of disability and civil rights organizations, has joined an amicus brief filed in the U.S. Supreme Court today in the case California v. Texas. We are urging the court to uphold the ACA in its entirety. However, if the court should decide to invalidate the ACA’s minimum-coverage provision, it is critical that the rest of the ACA’s protections remain in place. A declaration that the ACA as a whole is unconstitutional would have devastating impacts on people with disabilities generally and particularly during the COVID-19 pandemic and beyond, since they face higher risk of COVID-19 infection and disproportionately poorer long-term health outcomes from the disease.

“Removing the ACA’s Congressionally-enacted protections would reverse the progress that people with disabilities have realized since the ACA became law. We would return those with disabilities to a cruel reality in which affordable insurance lacks the breadth and depth of coverage for vital services or is denied out right. During this unprecedented pandemic, we simply cannot afford to go back to a time when people with disabilities and their families lived in fear of losing the coverage they had or went without access to the health care services that made life in the community possible,” said Peter Berns, CEO, The Arc.

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 be able to afford health insurance without the ACA, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

The amicus brief outlines the substantial benefits that Congress intentionally extended to people with disabilities in enacting the ACA and argues that the breadth of these benefits, and their critical importance to the lives of millions of people with disabilities should weigh heavily in the Court’s analysis. The ACA has been essential to overcoming the disproportionate impact that America’s health care crisis, even before COVID-19, has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite relying on health care services more than those without disabilities.

The ACA has provided long-denied access to health insurance and health care and explicitly prohibits discrimination in access to care. It has allowed people with disabilities to obtain health care and supports that are critical to their health and independence. The ACA protects against coverage limitations based on preexisting conditions or lifetime limits and guarantees coverage of services for psychiatric and developmental disabilities. It also provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions.

“The Arc has fought vigorously to protect the ACA. In enacting the law, Congress intentionally extended protections to people with disabilities, and would not want to see these protections undermined, especially now, given all we have at stake in this pandemic,” said Berns.

Nineteen national disability and civil rights organizations joined the amicus brief, represented by the law firms Dentons and Baker Hostetler and the Bazelon Center for Mental Health Law, Disability Rights Education and Defense Fund, and the American Civil Liberties Union. The Arc previously joined an amicus brief in this case before the Fifth Circuit and has fought against discrimination in medical care—prohibited by the ACA—since the COVID-19 pandemic began.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

WASHINGTON – Today, 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.  The previous policy placed the lives of disabled adults and children at serious risk, in violation of federal law, by ordering hospitals to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.” The complaint was filed by the ADAP and The Arc of the United States, together with counsel from the Center for Public Representation, Bazelon Center for Mental Health Law, and Sam Bagenstos.

After receiving the complaint, OCR took swift action to reach a resolution.  With today’s announcement, OCR has made clear to Alabama and states and hospitals across the country that excluding people with disabilities from access to life-saving treatment is illegal and intolerable.

“We are pleased that the state of Alabama has rescinded this illegal policy and given notice to hospitals across the state that they may not rely on this policy and cannot discriminate against people with disabilities in accessing lifesaving care,” said Peter Berns, CEO, The Arc. “We call on other states and health care providers to immediately examine their treatment policies to ensure that people with disabilities who need ventilators to breathe or other life-saving treatment have equal access to care.”

“States and hospitals across the country should heed OCR’s warning and take affirmative steps to ensure their policies do not discriminate against people with disabilities,” said Cathy Costanzo, Executive Director of the Center for Public Representation.

In addition to withdrawing the discriminatory policies, Alabama has put in place new Crisis Standards of Care (CSC) Guidelines that contain important non-discrimination provisions.  The new Guidelines do not, however, address how ventilators will be rationed in the event it becomes necessary to do so.

“Today’s actions are an important first step, and we appreciate that the state of Alabama acted quickly to withdraw its discriminatory policy,” said Rhonda Brownstein, Legal Director of the Alabama Disabilities Advocacy Program.  “We call on the Governor to work with ADAP and others in the disability community to develop transparent and clear guidance on how to implement these non-discrimination requirements in the event that rationing of ventilators becomes necessary.”

Matthew Foster is an example of how Alabama’s previous ventilator rationing policy could have impacted people with intellectual and cognitive disabilities. Matthew, who is 37 years old and has Down syndrome, might have been excluded from access to a ventilator under the previous policy.  When Matthew was told that the state rescinded the discriminatory policy, he was relieved: “I have Down syndrome. It’s not going away. But I have a right to live. I’m worth it.” Matthew, who has held a job for the past twenty years, has “had a positive impact on our family and community. The idea that his life is not worthy because of his intellectual disability is devastating and wrong,” says his mother, Susan Ellis. “In this time of crisis, we cannot devalue the lives of others in our community based on their disabilities. It’s morally wrong, and it violates the law. We are grateful that OCR acted quickly on the complaint and that the state of Alabama ended its previous policy.  I can now breathe a sigh of relief.”

ADAP and the other organizations involved in the OCR complaint will be vigilant in ensuring that hospitals across Alabama comply with the new non-discrimination requirements.  “We will not hesitate to take further legal action if any discrimination against people with disabilities in accessing COVID-19 treatment occurs,” said Jennifer Mathis of the Bazelon Center for Mental Health Law.

Complainants are represented by their counsel, who are available for comment:

Rhonda Brownstein, Alabama Disabilities Advocacy Program

rbrownstein@adap.ua.edu

Shira Wakschlag, The Arc of the United States

Wakschlag@thearc.org

Jennifer Mathis, The Bazelon Center for Mental Health Law

jenniferm@bazelon.org

Cathy Costanzo and Alison Barkoff, Center for Public Representations

ccostanzo@cpr-ma.org; abarkoff@cpr-us.org

Samuel Bagenstos

sbagen@gmail.com