Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

The Arc Reviews Judge Amy Coney Barrett’s Record on Issues Impacting People With Disabilities: What Is at Stake

/in /by Pam Katz

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]

[1] See, e.g. Equal Employment Opportunity Commission v. AutoZone (7th 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 (7th 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”

The Arc@Work logo

The Workplace in 2020: Getting People With Disabilities Back to Work Safely During COVID-19

/in /by Pam Katz

This year’s National Disability Employment Awareness Month arrives at a precarious time in our country’s history: we continue to face the ravages of the COVID-19 pandemic and one of the direst economic recessions in recent memory. The coronavirus pandemic has caused more than 200,000 deaths and infected more than 7 million people, while also creating immense challenges for the American business community and workforce. Despite some signs that the economy is beginning to pick back up again, the Bureau of Labor Statistics still reports that more than 11.5 million jobs were lost since the beginning of the pandemic in February.

When you dig into the numbers, the research shows that this recession has not been felt evenly across the labor force, and that systematically marginalized communities—such as communities of color, immigrants, women and others—have experienced higher unemployment than average. Jobseekers with disabilities are among the groups that have been hit the hardest. Research conducted by Global Disability Inclusion suggests that close to 40% of people with disabilities were laid off or furloughed as a result of the pandemic.

The struggles for people with intellectual and developmental disabilities (IDD) to gain access to employment were already apparent: research indicates between 80 – 90% of people with IDD of working age were unemployed in the years leading up to 2020. This is the first of a two-part series that The Arc@Work will publish this month to speak on the new and emerging challenges faced by workers with IDD and how employers, disability services agencies, and individuals with IDD can work together on creating solutions that create inclusion and workplace equity.

Negative Impact and New Barriers for Job Seekers With IDD

For jobseekers with IDD, the safety threat posed by the coronavirus—coupled with pre-existing barriers to employment and a now struggling national economy—creates compounding barriers that now make finding a job in the community extremely difficult. Industries such as brick and mortar retail, hospitality, and others that have historically been open to hiring people with IDD have suffered tremendous losses. Many small businesses in the community have shut down either temporarily or permanently.

  • Barriers in public transportation and ridesharing: Many individuals with disabilities—especially those living in urban or suburban settings—rely on public transportation to get to work. There are very few public transportation networks around the country that are fully accessible to people with disabilities, and this problem is only further compounded by the threat of contracting the coronavirus in transit.
  • Increased competition: Millions of work-eligible Americans are out of jobs and are competing for the same jobs as people with IDD, many of whom are first-time job seekers and risk being overlooked in favor of more experienced applicants. This means that the hourly jobs that were previously available to people with IDD have now become harder to obtain as the demand for jobs drastically outweighs the supply.
  • Disappearing supports: Many individuals with IDD require the support of direct support professionals and job coaches to live independently and be successful in their jobs. The pandemic has hit the disability services industry hard, where many agencies have either been forced to close or have cut staff.

In a survey conducted by The Arc in May 2020 to gauge the effect of the pandemic on our network of chapters and affiliates, 44% of our agencies reported having to lay-off or furlough staff due to funding cuts. Nearly a third reported having trouble hiring and retaining staff due to prevailing economic conditions and fear of the virus.

  • One-size-fits-all approach to workplace safety: Safety should not come at the cost of inclusion in the workplace. For some, abiding by COVID-19 safety protocols is difficult, especially as it relates to social distancing and using personal protective equipment (PPE). Many people with IDD have sensory difficulties that make it difficult to wear masks or gloves at all times, while others may have difficulties observing social distancing etiquette. This may impact an employee’s ability to interface with customers in person or be in the workplace at all.

Individuals with disabilities face these barriers—and more—in their efforts to get back to work, but these are all challenges that employers and disability services agencies can work together to solve. In the next part of this two-part series, we will go over some of the things that employers can do right now and in the future to support individuals with IDD to overcome these challenges and return to work.

The Arc logo

Comcast NBCUniversal and The Arc Team up to Support Local Disability Agencies and Digital Literacy for People With Disabilities

/in , /by Pam Katz

The Arc of the United States and Comcast NBCUniversal today announced a three-year renewal of their national partnership to expand digital technology opportunities for people with intellectual and developmental disabilities (IDD). Comcast NBCUniversal is providing $400,000 to The Arc’s Tech Coaching Centers, which operate their national digital literacy program, as well as chapters that have been negatively impacted by the COVID-19 pandemic.

“We are immensely grateful for Comcast NBCUniversal’s continued support for individuals with intellectual and developmental disabilities and their families, and the work we do to protect their human rights and support their participation in society,” said Peter Berns, CEO of The Arc. “Many of our chapters have been hit incredibly hard during the COVID-19 pandemic. We are truly fortunate to have such a longstanding and steadfast partner in Comcast NBCUniversal in our work to support our chapters and expand access to digital technology that will open up doors online and offline for people with disabilities.”

The Arc’s national network of more than 600 chapters provide vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community. With the support of Comcast NBCUniversal, The Arc will continue the important work of connecting its clients with digital skills to enhance their paths to independence through digital literacy training and financial support. Since 2017, more than 1,800 clients have received basic digital skills training at 16 sites around the country. Additionally, for the next year, Comcast will help fund general operating costs for some chapters of The Arc that face financial challenges as a result of the pandemic.

“Through the Tech Coaching Centers and our long-standing partnership with The Arc, we’ve witnessed so many examples of individuals gaining employment, learning digital skills, navigating the internet, and more,” said Dalila Wilson-Scott, EVP & Chief Diversity Officer, Comcast Corporation. “We believe it is vital to continue supporting these efforts to help create economic mobility for people with disabilities.”

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company with three primary businesses:  Comcast Cable, NBCUniversal, and Sky.  Comcast Cable is one of the United States’ largest video, high-speed internet, and phone providers to residential customers under the Xfinity brand, and also provides these services to businesses.  It also provides wireless and security and automation services to residential customers under the Xfinity brand.  NBCUniversal is global and operates news, entertainment and sports cable networks, the NBC and Telemundo broadcast networks, television production operations, television station groups, Universal Pictures, and Universal Parks and Resorts.  Sky is one of Europe’s leading media and entertainment companies, connecting customers to a broad range of video content through its pay television services.  It also provides communications services, including residential high-speed internet, phone, and wireless services.  Sky operates the Sky News broadcast network and sports and entertainment networks, produces original content, and has exclusive content rights.  Visit www.comcastcorporation.com for more information.

The United States Capitol Building

The Arc Supports National Coronavirus Commission Act to Assess Response to Pandemic for People With Disabilities

/in , , /by Pam Katz

Today, Members of the U.S. House and Senate introduced the bipartisan National Coronavirus Commission Act of 2020. The proposed legislation seeks to create an independent, non-partisan commission to assess the nation’s preparedness and response to the COVID-19 pandemic. The Commission would also make recommendations to improve readiness in the future. The Commission has a specific charge to review the impact of COVID-19 on people with disabilities.

The Arc supports the bipartisan bill and believes establishing a National Coronavirus Commission is important to ensure that as a country we fully understand the extraordinarily detrimental impacts the pandemic has had on millions of people with disabilities across the country. The pandemic continues to disproportionately harm them. Recognizing where the country’s response has fallen short and committing to doing better in the future is key to truly moving forward in a way that is intentional and inclusive of people with disabilities.

“We are pleased to support this important bi-partisan effort to ensure that we have a full accounting of the National response to the COVID-19 pandemic. We specifically thank Senators Menendez and Collins for ensuring that the Commission is charged with reviewing the health and economic impacts of the pandemic on people with disabilities, a population that is far too often overlooked in the face of crises, this information will be vitally important,” said Nicole Jorwic, Senior Director of Public Policy at The Arc.

We are hopeful the bill will move swiftly through Congress as people with disabilities work to rebuild their lives.

The Arc logo

The Arc on Passing of Justice Ruth Bader Ginsburg and Her Mark on the Disability Rights Movement

/in , , /by Pam Katz

The Arc released the following statement on the passing of U.S. Supreme Court Justice Ruth Bader Ginsburg:

“Often lost in the day to day of life are the big moments in history that make today possible. Today, a life in the community for millions of people with disabilities is possible because of the actions of those who came before them, that led to justice. We mourn the loss of one of those champions, U.S. Supreme Court Justice Ruth Bader Ginsburg, who wrote the opinion in the landmark ruling affirming that unjustified segregation of people with disabilities is discrimination.

“Thirty years ago, the Americans with Disabilities Act transformed the country in important ways, changing expectations for the lives of people with disabilities. Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. Two advocates that carried the promise of the law all the way to the Supreme Court were Lois Curtis and Elaine Wilson. Their bravery and refusal to live behind the dark walls of institutions led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.

“In the opinion, Justice Ginsburg focused on the fact that ‘institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.’

“This big moment, and her staunch affirmation of the human dignity of people with disabilities and their rightful place in the community of their choice, fundamentally changed the course of the lives of hundreds of thousands of people with disabilities. With this history in our hearts, we will carry on our fight for inclusion and justice for all people with disabilities,” said Peter Berns, CEO, The Arc.

A cop standing in front of his cop car outside at night.

Unacceptable Police Shooting of Teenager With Autism: The Arc Calls for Transparent Investigation and Reform

/in , /by The Arc

Washington, D.C. – Yet another unnecessary police shooting of a person with a disability has occurred, this time in Salt Lake City, Utah, where 13-year-old Linden Cameron was shot by officers multiple times on Friday night while he was in crisis. His mother had called police for assistance when Linden, who has autism, was experiencing behaviors related to his disability likely due to a disruption in his routine. Linden needed an intervention but instead, police responding to the situation shot the teenager multiple times, causing significant injuries.

“How this call for help escalated, and so quickly, into a tragic shooting of a 13-year-old is incomprehensible. A thorough, swift, and transparent investigation must be done for Linden, his family, and the community.

“No one should ever be hurt or killed by police because of who they are. But time and time again, interactions between police and marginalized communities, including people with disabilities, end in violence. According to research, almost half of people killed by police have some kind of disability.  The Arc stands in solidarity with all communities that continue to face over-policing and mourn for those lost to police violence.

“To achieve the full participation of people with disabilities in their communities, we must demand recognition and respect for their human dignity, as well as understanding and acceptance of their differences. Whether the call goes to police, or another crisis intervention team, these are the fundamentals that must be ingrained in our society. We must develop systems that support individuals and families in these situations so that law enforcement is not called in.  We have to change our response – not the person with the disability, or the person in crisis. In the meantime, I fear for millions of people like Linden who simply by being who they are, are at risk of tragic violence when they or a loved one call for help,” said Peter Berns, CEO, The Arc.

The Arc is committed to learning from every instance of police violence against marginalized communities in order to advocate effectively for much-needed reform. The Arc’s National Center on Criminal Justice and Disability (NCCJD) is key to this effort. NCCJD promotes safety, fairness, and justice for people with intellectual and developmental disabilities, especially those with hidden disabilities and marginalized identities, as victims, witnesses, suspects, defendants, and incarcerated persons. Without access to justice, individuals with disabilities will continue to be overrepresented in every part of the criminal legal system. Law enforcement must receive effective training to prepare them for situations involving interactions with people with disabilities. To address this critical issue, NCCJD created Pathways to Justice, a comprehensive, community-based program that improves access to justice by creating and building relationships between the disability and criminal justice communities.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD 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.

The Coca-Cola Foundation logo

The Arc Announces Grant From The Coca-Cola Foundation

/in , /by The Arc

WASHINGTON – Students with disabilities and their families are experiencing unprecedented challenges and uncertainties in special education, as the COVID-19 pandemic forces schools and families all over the country to try to figure out the best path forward. But long before the pandemic, students with disabilities and their families faced disparities in education and unmet needs in the classroom. The pandemic underscores the need for vast systemic improvements in special education and more resources for students and families.

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families during this critical time. The funding will allow The Arc@School to develop new online resources for students and families to ensure they receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law.

“We are thrilled to receive support from The Coca-Cola Foundation. It will give The Arc@School the capacity to create new resources that will help students with intellectual and developmental disabilities and their families become empowered during uncertain and challenging times in education, whether they are learning virtually or in the classroom,” said Peter Berns, CEO, The Arc. “The Arc fought hard in the 1960s and 70s to force open the schoolhouse doors and win the right for students with disabilities to attend public schools. But just like other civil rights struggles, the work is far from over. Equal access to education lays important groundwork for people with IDD to have a place in their communities and make meaningful contributions as adults. We thank The Coca-Cola Foundation for understanding the importance of education for people with IDD and for their generous support.”

The Arc@School is The Arc’s National Center on Special Education Advocacy. The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

A close up of keys hanging in a door.

Eviction Moratorium Welcome Step, Further Action Needed

/in , , , /by The Arc

WASHINGTON – The Centers for Disease Control (CDC) has taken vital action to help millions of tenants, including many people with disabilities. The Arc is encouraged that this week the CDC issued a national, broad moratorium on evictions for nonpayment of rent. The temporary halt on evictions authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act has expired. The CDC’s order is crucial to help ensure that people with disabilities who are suffering job loss and economic instability are not forced out of their homes and into homelessness or unsafe living situations during a global pandemic.

“Many people with intellectual and developmental disabilities (IDD) have few financial resources and remain among the country’s poorest. During the pandemic, many people with disabilities and their families face even more economic uncertainty, loss of steady income, and unemployment. It would be deplorable to add homelessness to the list. We are encouraged to see the CDC recognize the potential housing disaster that is upon us,” said Peter Berns, CEO, The Arc. “Keeping people affordably and stably housed during this public health emergency is critical.”

This national moratorium is a welcome step, but we need further action. We continue to call for an extended eviction moratorium into 2021, sufficient emergency rental assistance to help cover back-rent when the moratorium ends, and strengthened foreclosure protections.

“Even before the COVID-19 crisis, people with disabilities and their families faced a national shortage of accessible and affordable housing, particularly low-income renters. Now, the long-term consequences could be dire. Without additional measures to prevent, and not just postpone, evictions and foreclosures, many people will still be at risk of losing their homes, and people with IDD will face even greater obstacles to living in the community rather than segregated institutions and other congregate settings. We must ensure that people with IDD can stay in their homes and remain in the community during a time when our health and safety may depend on it,” said Berns.

A person laying on a hospital bed in a dressing gown with a blanket over him. He is holding hands of a person sitting next to him. In the background is a doctor holding a chart.

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

/in , , /by The Arc

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

A man uses a walker with a basekt it on it holding the walker with one hand and a sign in the other hand. He is standing in front of the Capitol building. The sign has The Arc logo in the top left corner and is blank in the middle.

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

/in , , , /by The Arc

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.