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.

As the COVID-19 pandemic sickens and kills thousands of Americans in every corner of our country, The Arc is alarmed that the needs of people with disabilities and the undervalued workforce supporting them are still not adequately addressed.

Today, Congress passed new emergency COVID-19 relief legislation that replenishes funding for federal loan programs for small businesses and provides additional funding for hospitals and federal agencies. The measure benefits the economy and helps support businesses and organizations that provide services to people with disabilities, including state and local chapters of The Arc. However, the bipartisan deal falls short of meeting the urgent needs of people with intellectual and developmental disabilities (I/DD), who are dying from COVID-19 and face grave danger.

In the next COVID-19 response package, it is crucial that Congress creates grants for states to expand home and community-based services (HCBS) to help keep people with I/DD in their homes and communities – and out of institutions and other dangerous congregate settings, where people are dying in greater numbers due to exposure to the virus.  If Congress doesn’t provide this critical funding immediately, even more preventable deaths may occur. By investing in HCBS, we can also pay the workforce that supports people with I/DD to live as independently as possible in communities. Our workforce is risking its personal health and safety to provide supports to people with I/DD, often without adequate personal protective equipment.

“While the COVID-19 legislation passed by Congress this week provides short-term relief for our economy, it fails to address the looming, long-term crisis facing people with disabilities, direct support professionals, and families. The Arc and our persistent grassroots advocates urge Congress to remember the needs of all Americans –not just some – by including state grants to expand HCBS in the next coronavirus relief package. We fear this pandemic could undo years of progress for people with disabilities, and we can’t let that happen. Sustaining and strengthening access to supports for a life in the community is one of our best defenses against this relentless virus,” said Peter Berns, CEO, The Arc.

Today, the Center for Public Representation, The Arc of the United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education & Defense Fund, and Professor Samuel Bagenstos released critical guidance to states and healthcare providers about how to avoid discriminating against people with disabilities if rationing access to COVID-19 treatment becomes necessary. The guidance is endorsed by 90 national disability and health advocacy organizations.

As COVID-19 cases increase and spread throughout the country, U.S. health officials are predicting that there will not be enough ventilators, medical equipment, hospital beds, and health care personnel to meet the demand of patients with the virus who require intensive treatment. Some states and cities are already experiencing a shortage, and health care professionals and state officials have begun developing and updating protocols to determine who will and will not have access to life-saving COVID-19 treatment in the event care rationing becomes necessary. Last week, advocates filed four complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (HHS-OCR) challenging the treatment rationing plans of Washington State, Alabama, Kansas, and Tennessee as discriminatory against people with disabilities in violation of federal disability rights laws and expressing grave concerns about the threat such plans pose to the lives of people with disabilities. The Consortium for Citizens with Disabilities, National Council on Disability, and members of Congress also sent letters to HHS-OCR, asking it to issue guidance about the application of disability rights laws to rationing plans.     

In response to these complaints and letters, HHS-OCR issued a Bulletin on March 28, 2020 entitled “Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19),” that makes clear that federal disability laws prevent people with disabilities from being “put at the end of the line for health services during emergencies” and “protect the equal dignity of every human life from ruthless utilitarianism.” The HHS-OCR Bulletin explains the obligations of states and health care providers to comply with federal disability rights laws in developing treatment rationing plans and administering care in the event of a shortage of medical equipment.  The guidance released today by advocates elaborates on the requirements in the HHS-OCR Bulletin and explains how states and health care providers can take concrete steps to modify policies and practices so that people with disabilities aren’t denied medical treatment based on their disability and stereotypes and biases about whether they are fit to live or die.

We are committed to ensuring that people with disabilities have equal access to life-saving treatment during the COVID-19 pandemic.  We expect that today’s guidance will assist states and medical providers in collaborating with disability stakeholders in their communities to develop fair, non-discriminatory policies. 

“During times of crisis, we see who we really are. The nationwide strain COVID-19 is putting on our health system puts to the test the legal and moral promises our country has made to treat people with disabilities in a way that is fair and just – that means providing life-saving treatment when it is needed and possible. We urge states and health care providers to take this guidance very seriously,  we expect nothing less and will continue to work aggressively to protect the inalienable civil rights of people with disabilities,” said Peter Berns, CEO, The Arc.

For more information on our guidance and advocacy regarding medical rationing, contact:

Center for Public Representation:  Cathy Costanzo, ccostanzo@cpr-ma.org or Alison Barkoff, abarkoff@cpr-us.org

The Arc of the United States:  Shira Wakschlag, wakschlag@thearc.org 

Bazelon Center for Mental Health Law:  Jennifer Mathis, jenniferm@bazelon.org

Autistic Self Advocacy Network:  Samantha Crane, scrane@autisticadvocacy.org

Disability Rights Education & Defense Fund:  Claudia Center, ccenter@dredf.org

Professor Samuel Bagenstos:  sbagen@gmail.com

Link to today’s guidance: https://thearc.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf