Resolution of Federal Complaint Amidst Nationwide COVID-19 Surge Raises Bar in Prohibiting Blanket DNRs, Medical Discrimination Against People With Disabilities

WASHINGTON, D.C. – Today, amidst rampant spread of COVID-19 infection throughout the country, the U.S. Department of Health & Human Services Office for Civil Rights (OCR) announced the resolution of a federal complaint filed against Utah. The complaint, brought by the Utah Disability Law Center and a coalition of national groups—The Arc of the United States, Center for Public Representation, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund and Samuel Bagenstos—is one of nearly a dozen complaints that the groups have been brought nationwide challenging states’ plans for rationing medical care during the COVID-19 pandemic as discriminating against people with disabilities. Today’s resolution sets a national precedent, with OCR building off earlier resolutions of complaints regarding plans in Alabama, Pennsylvania, and Tennessee and weighing in on the discriminatory impact of a number of provisions common in many states’ rationing plans.

The complaint against Utah alleged that the state’s plan illegally excluded certain people with disabilities from accessing life-saving treatment like ventilators based on their disabilities and deprioritized others based on their disabilities. In response to the complaint and engagement with OCR, Utah has revised its Crisis Standard of Care Guidelines to comply with federal disability rights laws and ensure that people with disabilities are not discriminated against even when public health emergencies, such as the COVID-19 pandemic, necessitate the rationing of scarce medical resources.

Most notably, hospitals must now provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket Do Not Resuscitate (DNR) policies for reasons of resource constraint. Physicians may not require patients to consent to a particular advanced care planning decision in order to continue to receive services from the hospital. This is the first time OCR has weighed in on this issue.

The following are additional key changes in Utah’s policy to avoid discrimination against people with disabilities:

  • No Exclusions or Deprioritizing Based on Resource Intensity or Disability 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 they have a disability 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
  • No Long-Term Survivability Considerations: Utah has eliminated long term survivability as a consideration in treatment decisions, changing its Guidelines to allow medical personnel to consider only “short-term mortality.” Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.
  • Reasonable Modifications Required: Utah’s Guidelines now require hospitals to make reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)—the tool used to prioritize access to medical treatment—to avoid penalizing people with underlying conditions that are unrelated to their ability to benefit from treatment. The Guidelines note that other reasonable modifications may also be required to provide equal access to treatment for patients with disabilities.
  • 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.

“COVID-19 cases are rising nationwide and the threat of care rationing is real. This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Peter Berns, Chief Executive Officer, The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”

“We are very pleased that our state has worked with OCR to end this immoral and illegal practice of rationing care for people with disabilities,” said Laura Henrie, Associate Legal Director of the Utah Disability Law Center. “Utah has seen cases surge over the last several weeks, which puts pressure on our healthcare system. The fear of not getting life-saving treatment was very real for people like our client, Jacob. We are thankful for OCR’s efforts in protecting the rights of people with disabilities, so that folks like Jacob have equal access to care.”

“Today’s resolution sends a clear message during a dire time: people with disabilities must have equal access to life-saving treatment during the COVID-19 pandemic,” says Alison Barkoff, Director of Advocacy at the Center for Public Representation. “Many states’ medical rationing plans have discriminatory provisions similar to those in Utah.  We urge states across the country to heed this warning and revise their plans now to comply with federal disability laws.”

In addition to filing complaints with OCR, the national disability organizations have created resources at the Center for Public Representation and The Arc to assist stakeholders across the country in evaluating and advocating for non-discriminatory medical rationing plans.

For more information about today’s resolution, contact:

Nate Crippes, Utah Disability Law Center

ncrippes@disabilitylawcenter.org or 801-910-5815

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-854-1270

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Congress Adjourns for Recess, Failing to Address Needs of People With Disabilities

WASHINGTON – The negotiations around a fourth COVID relief package have reached a stalemate and people with disabilities will be worse off for it. Despite the House passing a comprehensive relief package on May 15, 2020, the Senate has not brought that bill to a vote. They adjourned last night for August recess, which will only make the struggles facing people with disabilities, their families, and support system infinitely worse.

Negotiations have collapsed, and by walking away from the table, our leaders have failed to address the dire needs of people with disabilities, their families, and direct support workforce in the middle of a pandemic. We are outraged that Senators are returning home to their districts for recess without passing coronavirus relief legislation to help the millions of people who are suffering.

“This political standoff is at the expense of millions of people with disabilities, their families, and service providers like our chapters scrambling to make sure that people with disabilities have the care they need. Three months of inaction are inexcusable, and now, they’ve left town without a resolution. The Senate must return and take up the House bill and provide solutions to the millions of people who do not know how they will get through this national crisis,” said Peter Berns, CEO, The Arc.

This impasse means that the very systems that people are relying on to address the crisis and that provide the services that many people with disability rely on, such as Medicaid, are in jeopardy. Without proper funding, these systems will face massive budget cuts and people with disabilities will be the ones who lose.

In May, the House of Representatives passed legislation that includes many of the things that people with disabilities need, but a recent proposal from some Senators does not address most of the critical needs of people with disabilities and has not even been brought up for a vote. The Senators returning home this week have abandoned the millions of people with disabilities who are relying on them. Congress must pass a bill that includes:

  • Dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will provide better wages and support for the DSP workforce. Access to HCBS will limit the risk of people with disabilities being put in institutions.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. DSPs must be designated as essential workers so that they can get access to the PPE and medical supplies they need.
  • Paid leave for all caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Economic impact payments for all people with disabilities. Stimulus payments need to be available to everyone, including adults with disabilities who are claimed as dependents.

“People with disabilities and those who support them can’t be left behind. #WeAreEssential and it is far past time for Congress to recognize that and act,” said Berns.

New HUD Rule Weakens Fair Housing Protections for People With Disabilities

WASHINGTON – The U.S. Department of Housing and Urban Development (HUD) is moving forward with a harmful rule that threatens the protections of The Fair Housing Act for millions of people with disabilities. The new Affirmatively Furthering Fair Housing (AFFH) rule, called the “Preserving Community and Neighborhood Choice,” published today, is a big step backward from efforts to fight housing discrimination and segregation in the U.S.

People with disabilities face a profound and longstanding housing crisis, including the lack of safe, affordable, accessible and integrated housing, and significant housing-related discrimination. These circumstances, based in a history of exclusion and segregation, make it difficult for people with disabilities to live and participate in their community, and puts many people with disabilities at risk of unnecessary institutionalization or homelessness.

Under the new rule, HUD has effectively given up on ensuring that housing agencies and communities receiving HUD funding significantly advance fair housing. It means less oversight, weaker to no standards, and lost opportunities to improve housing for people most in need, including people with disabilities. The new rule strips away the prior regulations and assessment tools, which included relevant data, analysis and public input. It replaces them with a toothless self-certification, where “any action” related to promoting fair housing is sufficient. The final rule also eliminated language requiring steps to expand opportunities for people with disabilities to live in “the most integrated setting appropriate.” And it makes these changes based on a process that ignores the comments received on the earlier, proposed version.

“A home, either rented or owned, is the cornerstone of independence. Living as independently as possible and being part of a community are crucial for people with intellectual and developmental disabilities, but HUD’s new rule could result in many people with disabilities continuing to be stuck in or forced into institutional settings, into housing that is substandard or unsafe, or homelessness, instead of a life they choose in the community,” said Peter Berns, CEO, The Arc. “The Arc will advocate to reinstate this critical tool to desegregate communities and continue to fight for fair housing.”

Small orange icons of people arranged to form a map of the United States

The Census Must Go On: The Futures of People With Disabilities and Hard-to-Count Populations Are at Stake

WASHINGTON – The Arc is distressed that the U.S. Census Bureau is cutting short efforts to count all persons living in the country for the 2020 Census. Ending the self-response phase and critical door-knocking efforts of the census one month early on September 30th risks severely undercounting already hard-to-count populations like people with disabilities, immigrants, people of color, those who are low-income or experiencing homelessness, and other communities. An undercount means the loss of important federal funding for programs like Medicaid, food assistance, housing vouchers, education services, and more – across communities in every state.

“The Arc condemns last-minute plans to essentially cut short the 2020 Census, particularly at a time when people with disabilities and other hard-to-count populations are experiencing unprecedented crisis and indefinite hardship. People with intellectual and developmental disabilities are full members of society and we count. The Administration must not limit our chance to participate in our democracy and be counted,” said Peter Berns, CEO, The Arc. “We urgently call on Congress to act immediately to extend the legal deadline for reporting census data so that there is more time to finish the survey and include everyone.”

Data collected in the decennial census is the foundation for the next decade and must be as accurate as possible for allocating federal funding and ensuring that communities are not shortchanged. Furthermore, the Constitution’s enumeration clause of the 14th Amendment makes it clear that dividing representation and seats in the U.S. House of Representatives must be based on a count of all persons living in the U.S. Abandoning the adjusted timeline for the 2020 Census will unfairly skew Congressional representation and redistricting for the next decade.

The pandemic has brought unprecedented challenges to executing the census. In April, the Census Bureau determined that additional time was needed to safely collect data and to protect the health of the public and census workers who will soon be going door to door to households that have not yet responded. The Census Bureau’s new hastily expedited timeline creates confusion, disrupts the planned public education efforts, and makes the job of counting everyone even more difficult.

The Arc also opposed the Administration’s directive issued last month to exclude undocumented immigrants in the 2020 Census count as it applies to Congressional representation.

“This action to rush the census further undermines the ability of the Census Bureau to complete a fair and accurate count. We will continue to push back against attempts to undercut an accurate count and dismiss people with disabilities and other hard-to-count populations. The Arc and our coalition partners have long advocated for the importance of people with disabilities participating in the census and we will not stop here,” said Berns.