close up of medical form with stethoscope

The Affordable Care Act: What’s at Risk?

/in , , , , /by Pam Katz

The Affordable Care Act (ACA) made significant progress in expanding access to health care for individuals with intellectual and/or developmental disabilities (IDD). Access to consistent and reliable healthcare is critical for individuals with IDD, and the ACA created much-needed reforms to health insurance, addressed systemic discrimination, and expanded coverage. Yet it will all be at risk on November 10 when the U.S. Supreme Court hears a case seeking to overturn the law. Leading up to the ACA’s day in court, here is a primer on what the ACA does for people with IDD, and what’s at stake if the law goes away.

The ACA:

  • Helps people get health insurance
  • Requires that plans can’t exclude you or charge you more based on preexisting conditions
  • Bans benefits caps (annual and lifetime caps)
  • Requires all plans to cover “essential benefits”
  • Provides financial assistance for low-income people to access healthcare 

Loss of Health Coverage: Without the ACA, millions of adults and children may lose their health coverage, or it may become unaffordable. Millions of families may be left with limited and expensive options, with inadequate coverage. 

Pre-existing Conditions: We are concerned about the possible loss of protections for people with pre-existing medical conditions, including people with IDD. Millions of Americans have “pre-existing” medical conditions that could disqualify them from buying a health insurance policy if the ACA is dismantled. A “pre-existing condition” is any health problem a person has before new health coverage starts. It includes a broad range of common conditions such as diabetes, high blood pressure, cancer, or seizure disorders, including all types of disabilities. 

Without the protections of the ACA, any “pre-existing condition” could mean a person or family buying insurance would pay much more for a policy, if they could get one at all. Before the ACA, an insurer could outright deny people coverage for a specific pre-existing condition, charge them more, cancel a policy after the fact for utilizing needed health care, or deny health insurance coverage overall. Without the ACA, employers could drop coverage for any or all of the conditions they are now required to cover. The Trump Administration publicly committed to “protecting individuals with pre-existing conditions” but there are no specifics on how this would be accomplished.  

COVID Connection: Some of the millions of Americans infected by COVID-19 will have long-term health conditions that are “pre-existing conditions.” This new reality could make it challenging to find health insurance.  And millions of Americans are now also without jobs and without employer-provided health insurance, so the need for affordable care is even greater.

Lifetime and Annual Limits: Before the ACA, lifetime and annual caps were permitted. Even with insurance, this meant enormous out-of-pocket costs or losing your insurance if medical bills cost more than the capped amount. Individuals and families face going without needed treatment or bankruptcy when the caps are exceeded.

Essential Benefits: Before the ACA’s passage, many plans did not cover important services, like maternity care or mental health treatment. The ACA requires all plans to cover 10 “essential health benefits,” including rehabilitative and habilitative services and devices that are vital to people with IDD.

Preventive Care: If we lose the ACA, we also lose preventive care with no out-of-pocket cost. This means adults and children would no longer be able to access important services including immunizations, preventive screenings, well baby and well child visits without cost-sharing. Fewer people may get preventive exams to catch medical issues before they became serious or life-threatening (and more difficult and expensive to treat).

Expanded Coverage for Children until age 26: Prior to the ACA, many health plans removed adult children from their parents’ coverage, regardless of whether they were a student or lived at home with their parents. Under the ACA, plans that offer coverage for children must cover them until they turn 26. It’s been an important coverage expansion for millions of young adult children who have been able to stay on their family health insurance plan.

Affordability Provisions and Loss of Federal Subsidies: The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to millions of people, including individuals with IDD and other disabilities who were not otherwise eligible for Medicaid. If we lose the ACA, States would be forced to cover the 90% of the cost of the Medicaid expansion that the federal government currently pays, which may be all but impossible in the current economic situation. We may also lose refundable tax credits and cost-sharing assistance that helps reduce the burden on lower-income individuals and families.

Long Term Supports and Services: Several provisions of the ACA were designed to assist states to rebalance their long termsupports systems and invest in the community instead of costly and outdated institutions. States who expanded these options could face a devastating blow if the ACA is struck down. For example, with Community First Choice or 1915(k), 392,7000 individuals in 8 states (California, Connecticut, Maryland, Montana, New York, Oregon, Texas and Washington) would lose services totaling $8.7 billion per year. With respect to the State Plan Home and Community-Based Services Option or 1915(i), 81,000 individuals in 10 states and DC (California, Connecticut, Delaware, DC, Idaho, Indiana, Iowa, Mississippi, Nevada, Ohio, Texas) would lose services totaling $641 million per year.  This change would hurt people with IDD and curtail their opportunity for a full life in their community.

Protecting Civil Rights in Health Care: The ACA also includes the fundamentally important Section 1557 nondiscrimination provision, that prohibits discrimination on the basis of disability (and other protected categories) in health programs and activities.

Impacts on the Health Care System: Overall, a court decision that strikes down the ACA (or important parts of it) could have a broad, harmful impact on the health care system, especially during a pandemic when resources and staff are already strained. It would also increase uncompensated-care costs for hospitals. Health care systems and hospitals that serve disproportionately high numbers of low-income people will be the most at risk, and could be forced to cut services.

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.

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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.

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 (I/DD) 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 woman sitting in a black leather chair and smiling. She has short curly brown hair, glasses, a white watch on, and is wearing a short-sleeve coral t-shirt. There is a wall behind her with orange wallpaper on it.

New HUD Rule Weakens Fair Housing Protections for People With Disabilities

/in , , , , /by The Arc

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

/in , , , /by The Arc

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.

The Arc logo

COVID-19 Hotspots Arizona and Texas Crisis Standard of Care Plans Challenged by State and National Groups in Federal Complaints

/in , , , /by The Arc

WASHINGTON – A coalition of state and national disability and civil rights advocacy groups have filed complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) challenging the crisis standard of care plans in Arizona and Texas, two states hit hard by the COVID-19 pandemic.  These crisis plans are used to decide who receives life-saving treatment. Along with state partners, the national groups—The Arc, the Center for Public Representation, Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, and Justice in Aging—argue that the plans discriminate against people with disabilities, older adults, and people of color, placing these communities at risk of substantial and imminent harm—and the real risk of being denied basic and emergency treatment—during the pandemic.

The COVID-19 situation in both states is dire. Arizona is ranked at the top of the list for the highest number of confirmed COVID-19 cases per million residents in the world. In Texas, COVID-19 cases continue to set new records with each passing day, with Dallas County recently reporting over 1,000 new cases for six days in a row. Based on the unprecedented spread of the virus, medical officials in both states have warned that some hospitals have reached capacity and the crisis plans have been activated. While decision-making in these scenarios is bound to be challenging, it is unacceptable and illegal for the guidelines for decision-making in life-or-death situations to be discriminatory.

Since Texas has never adopted statewide crisis standards despite repeated requests from the disability community, the Texas complaint challenges the North Texas Mass Critical Care Guidelines issued by the North Central Texas Trauma Regional Advisory Council. This Regional Advisory Council is responsible for overseeing the provision of emergency medical services for 8 million Texans or 30% of the state. The Arizona complaint challenges the statewide Crisis Standard of Care guidelines along with the recently-issued COVID-19 Addendum.

The complaints allege that, among other things, the plans categorically exclude people with certain disabilities from life-saving treatment; fail to modify policies and procedures that discriminate against people with disabilities, including no-visitor policies and the use of assessment instruments; and fail to prohibit treatment decisions that are based on discriminatory assumptions regarding future medical resources the patient may require. In addition, denying life-saving treatment to people who have certain illnesses or underlying conditions, as well as those with life-expectancy of less than five years will inevitably have a further discriminatory impact on Black, Native, and Latinx communities who are more likely to have certain underlying conditions and a shorter life expectancy than whites. These communities also face a disproportionate risk of COVID-19 infection and hospitalization, putting them at greater risk of being subject to these discriminatory plans. As such, the plans reinforce current and historical inequities in access to health care, and risk importing quality of life criteria and unconscious bias into the triage process, which will inevitably lead to inconsistent and subjective decision-making, higher rates of clinical error, and discriminatory allocation of care.

“People with intellectual and developmental disabilities are at higher risk of contracting COVID-19 and at a higher risk of dying from it than people without disabilities,” said Peter Berns, Chief Executive Officer, The Arc. “As states like Texas and Arizona see alarming new surges in the spread of the virus, it is imperative that the civil rights of people with disabilities be at the forefront. People with disabilities must have equal access to health care under federal law and cannot be left behind during a life-threatening public health crisis.”

“Right now, given the limited supply of hospital beds and life-saving equipment, the medical rationing plans in Arizona and Texas could result in a death sentence for some persons with disabilities, older adults, and people of color.  They are clearly discriminatory in light of OCR’s recent guidance and resolutions,” said Steven Schwartz, Legal Director of the Center for Public Representation. “We call on OCR to take urgent action to protect the lives of people with disabilities, whose lives are at imminent risk as these discriminatory plans are being activated.”

In addition to filing complaints with OCR, the national disability organizations have created resources at 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 these complaints, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Alison Barkoff, Center for Public Representation

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