A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People With Disabilities During COVID-19 Pandemic

Today, the U.S. Department of Health & Human Services Office for Civil Rights (OCR) announced the resolution of a federal complaint filed against Tennessee, one of nearly a dozen complaints filed by a coalition of national disability advocates – the Center for Public Representation, The Arc of the United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund and Samuel Bagenstos — challenging states’ plans for rationing medical care during the COVID-19 pandemic as discriminating against people with disabilities. Medical rationing policies have disproportionately impacted Black people with disabilities, who have higher rates of COVID-19 infection and hospitalization. Today’s resolution sets a national precedent, with OCR building off earlier resolutions of complaints regarding Alabama’s and Pennsylvania’s plans and weighing in for the first time on the discriminatory impact of a number of provisions common in many states’ rationing plans. 

The complaint against Tennessee, brought by the coalition of national disability advocates together with Tennessee advocates led by Disability Rights Tennessee and the Civil Rights Enforcement and Education Center (CREEC), alleged that Tennessee’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, Tennessee has revised its “Guidance for the Ethical Allocation of Scarce Resources During a Community-Wide Public Health Emergency” 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.

The following are key precedent-setting changes in Tennessee’s policy to avoid discrimination against people with disabilities: 

  • No Categorical Exclusions Based on Disability or Resource Intensity:  An individual can no longer be excluded from medical treatment based solely on a diagnosed disability or the fact that an individual might require more time or resources to recover because they have a disability.  This is the first time OCR has addressed resource intensity as a factor.  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: Due to this resolution,Tennessee is now the first state to explicitly eliminate longer-term survivability as a consideration in treatment decisions, changing its Guidance to allow medical personnel to consider only “imminence of 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: Tennessee’s Guidance now requires hospitals to make reasonable modifications to the Sequential Organ Failure Assessment (SOFA)—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. This is the first time OCR has weighed in on modifications to assessment tools. It also requires hospitals and other long-term care facilities (such as nursing homes) to reasonably modify no-visitor policies when necessary to ensure equal access to care.
  • 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. This is the first OCR resolution addressing this issue.  

“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation.  “We hope that states will revisit their policies in light of today’s resolution.” 

“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 Shira Wakschlag, Director of Legal Advocacy and General Counsel at 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.”

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

For more information about today’s resolution, contact:

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-841-7562

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Martie Lafferty, Civil Rights Education and Enforcement Center

mlafferty@creeclaw.org or 615- 913-5099

The Arc logo

The Arc Condemns the Department of Health and Human Services Releasing a Final Rule Weakening the Nondiscrimination Protections of the Affordable Care Act

This week, the U.S. Department of Health and Human Services (HHS) will issue a final rule that strips important protections of the Affordable Care Act (ACA) and limits access to health care coverage. The Arc is deeply troubled that HHS has chosen to issue a final rule weakening the nondiscrimination protections in health care, particularly during an international public health crisis and at a crucial crossroads for civil rights in this country.

The ACA’s Section 1557 prohibits discrimination in health care programs based on race, color, national origin, language proficiency, sex, sex stereotypes, gender identity, age, or disability. The protections of Section 1557 have never been more important than they are now. This rule narrows the application of all of the protections under Sec. 1557 by exempting certain types of activities and insurance coverage from the rule as a whole. In addition to other troubling changes, the final 1557 rule also specifically dismantles protections for people with limited English proficiency and people seeking reproductive and sexual health care.

“We cannot tolerate a public policy that permits discrimination based on disability, ethnicity, race, sex, gender identity and expression and sexual orientation, or other protected status.

It is unconscionable that the Administration is rolling back protections of the ACA and access to coverage in the midst of a pandemic. People with disabilities are already fighting discrimination in the health care system and extreme disparity as a result of COVID-19. HHS is taking steps that will deepen discrimination and create greater obstacles for people in our society who are marginalized – and at a time of historical hardship. It is unacceptable,” said Peter Berns, CEO, The Arc. “The Administration is once again attempting to destroy the promises of the ACA. We will continue our ongoing fight to defend it in the courts and through our advocacy on the ground.”

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

State and National Groups File Federal Complaint Against Nebraska for Inaccessibility of COVID-19 Testing Program

Lincoln, NE – Today, The Arc of the United States, Disability Rights Nebraska, and Center for Public Representation filed a complaint with the U.S. Department of Health and Human Services’ Office for Civil Rights over the State of Nebraska’s ongoing failure to provide access for Nebraskans with disabilities to TestNebraska. The State’s COVID-19 testing program currently requires the ability to access and use the internet and then the ability to drive to a testing site. TestNebraska began operations on May 4, 2020 but as of today’s filing, no plan has been made for Nebraskans who do not have the ability to drive or use the internet due to a disability.

The complaint charges that TestNebraska discriminates by leaving behind Nebraskans with disabilities in violation of Title II of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act (Section 504).

“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. As Nebraska and other states put into place plans for testing, 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 by no means, should they be left behind during a life or death public health crisis,” said Peter Berns, CEO, The Arc.

“For months, Disability Rights Nebraska and other advocates have been calling for the state to create a plan for Nebraskans who cannot drive,” said Eric Evans, CEO of Disability Rights Nebraska. “We were very disheartened to hear Governor Ricketts’ recent comment that TestNebraska was designed for DHHSS’ ‘regular customers.’ Perhaps this is merely a poor choice of words on the Governor’s part, but it certainly suggests that people with disabilities are second-class citizens in this case and we have fought against this perception for decades. All Nebraska citizens deserve equal access to this important and potentially life-saving program. Unfortunately, it appears we have to point out that people with disabilities are ‘regular people.’”

Alison Barkoff, Director of Advocacy for the Center for Public Representation, said “COVID-19 is disproportionately affecting people with disabilities nationwide. This is especially true for people living in congregate settings like nursing homes and group homes, where most residents lack transportation and cannot drive themselves to a mobile testing site. We hope this complaint ensures Nebraska finally makes its testing program accessible to all Nebraskans, especially those who are most at-risk.”

The complaint outlines examples of Nebraskans unable to access TestNebraska, including Nebraskans who are blind, who do not drive due to a developmental disability, and who do not drive due to age related disabilities. “Since the beginning of the pandemic, we’ve been interviewing Nebraskans across the state who have been left behind without any plan,” said Evans. “Other states have modified their testing to include people with disabilities. Nebraska has waited long enough and we hope today’s filing pushes the state to finally start protecting everyone from COVID-19.”

The filing was joined by The Arc of Nebraska, Brain Injury Alliance, Paralyzed Veterans of America Great Plains Chapter, ADAPT NE, People First of Nebraska, Nebraska Statewide Independent Living Council, and American Council of the Blind of Nebraska.

Press Contacts:

Name:  Kristin Wright

Title:    Senior Communications Manager, The Arc

Phone:  202-617-3271

Email:  wright@thearc.org

 

Name:  Amy Miller

Title:    Staff Attorney, Disability Rights Nebraska

Phone:  402-210-9098

Email:  amy@drne.org

 

Name:  Alison Barkoff

Title:    Director of Advocacy, Center for Public Representation

Phone:  202-854-1270

Email:  abarkoff@cpr-us.org

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Demands Full Pardon for Neli Latson, a Young Black Man With Autism, to Rectify Injustice

WASHINGTON – As our country faces a critical reckoning of the systemic racism and racial injustice that have plagued our society and systems for generations, The Arc is seeking long overdue legal and moral justice for a young Black man with disabilities who has suffered irreparable harm.

Today, we call on Virginia Governor Ralph Northam to #FreeNeli and immediately grant Reginald “Neli” Latson a full pardon. Latson is Black and has autism and intellectual disability, identities which have led to his continued persecution in the criminal justice system.

“At this critical turning point in history, we believe the Commonwealth of Virginia must do more to hold itself morally responsible and accountable in the case of Neli Latson and the continuing injustice of his prosecution and horrifying mistreatment in the criminal justice system. We urge Governor Northam to issue Mr. Latson a full pardon and an apology on behalf of the Commonwealth,” said Peter Berns, CEO, The Arc.

Sadly, Latson’s case represents the discrimination people with intellectual and developmental disabilities (I/DD) experience in the criminal justice system and how that discrimination is compounded for Black people with I/DD. Latson’s nightmare began in 2010 when someone called police reporting a “suspicious” Black male possibly with a gun outside of a public library in Stafford County, Virginia, outside of Washington. Latson, at the time an 18-year-old special education student who had committed no crime and was not carrying a gun or weapon, was just waiting for the library to open. Latson was confronted by a Stafford County deputy, who quickly found that he was unarmed. Latson tried to walk away but was grabbed by the deputy several times. Latson reacted with a fight-or-flight response, a response even more common for people with autism, and in the resulting altercation, both Latson and the Deputy were hurt. Latson was later convicted of assaulting the deputy, setting in motion the next troubling decade of his young life.

While behind bars in Virginia, Latson was subjected to mistreatment and abuse for behaviors connected to his disability, including long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end. Latson was granted a conditional pardon by then Governor Terry McAuliffe in 2015. It allowed him to move from prison to less restrictive facilities, but the conditions of that pardon, in effect until 2025, mean that Latson remains under supervision by criminal justice authorities and experiences the constant threat of reincarceration. Any misinterpreted behavior by Latson, who also now lives with mental health disabilities due to his traumatic experiences with law enforcement and correctional officers, could send the 28-year-old back to prison, resetting the cruel cycle.

It’s estimated that one third to half of all people in the U.S. killed by police have a disability – the majority of these are people of color.

As today’s national conversation intensifies over the clear need for criminal justice reform and an end to the murders of Black people at the hands of police, Neli Latson recently wrote to The Washington Post: “I hope there will finally be change and there will be equality for black people.” He also shared: “I understand how fortunate I am to be alive.”

Governor Northam has an opportunity to remove a major obstacle from Neli Latson’s path to healing. The Arc and The Arc of Virginia, alongside Latson’s attorneys, have been fighting for justice for Latson since 2011 and will not stop until he is free.

“Mr. Latson is a human being. He was criminalized for the color of his skin and his disability. He deserves justice. Governor Northam, #FreeNeli now,” said Berns.

Federal Civil Rights Resolution Makes Clear Hospital Visitor Policies Nationwide Must Accommodate Patients With Disabilities During COVID-19 Pandemic

WASHINGTON, D.C. – Today, in response to the first federal complaint challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.

Strict no-visitor policies put in place at hospitals have prevented patients with disabilities from safely receiving support from family members or staff necessary for them to effectively communicate with medical personnel or otherwise receive equal access to medical treatment. No-visitor policies have disproportionately impacted Black people with disabilities, who have higher rates of infection and hospitalization. Accommodations to these policies are required by federal civil rights laws.  

The complaint was filed against the State of Connecticut by national disability organizations The Arc of the United States, Center for Public Representation, and CommunicationFIRST, together with Connecticut-based organizations Disability Rights Connecticut, The Arc of Connecticut and Independence Northwest: Center for Independent Living of Northwest CT. The groups alleged that Connecticut’s COVID-19 no-visitor policy denied people with disabilities equal access to medical care and effective communication, deprived them of their right to make informed decisions and provide informed consent, and resulted in harms such as unnecessary physical and chemical restraints. The groups filed a separate complaint against Hartford Hospital  regarding its discriminatory treatment of 73-year-old “Patient G.S.,” who has speech and short-term memory disabilities but was not allowed access to in-person supports necessary for her to communicate, which was also recently resolved and publicly announced today.

“We are thrilled that this resolution will help prevent other patients around the country from having to experience the discrimination, physical pain, and emotional harm endured by Patient G.S.,” said Tauna Szymanski, Executive Director of CommunicationFIRST. “Ensuring states and hospitals safely balance public health concerns with the obligation to ensure patients with disabilities can communicate effectively has been a top priority for CommunicationFIRST during the pandemic.”

“Today’s resolution sets a national precedent for how states and hospitals can ensure their policies comply with federal disability laws,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “The COVID-19 crisis has laid bare the discrimination that people with disabilities face in accessing healthcare. We appreciate OCR’s leadership and collaboration with us to ensure people with disabilities can access the care they need.”

Highlights from the hospital policy announced by OCR and Connecticut include that it:

  • Requires all hospitals and other health care facilities to allow designated persons (family members, staff, or others) to support any disabled patient that may need such support;
  • Requires hospitals to provide available personal protective equipment (PPE) to support persons to keep them safe;
  • Includes procedures for screening support persons for COVID-19 symptoms and for supporters to safely take breaks and leave and re-enter the hospital; and
  • Encourages hospitals to mitigate the risk associated with support persons supporting COVID-19-positive patients.

“Many with intellectual and developmental disabilities are being deprived of basic rights during the COVID-19 pandemic, and we have already seen dire consequences from this discriminatory treatment. We thank OCR for today’s resolution and will continue to fight for the health and well-being of all people with disabilities,” said Peter Berns, CEO, The Arc.

The national disability rights groups have created resources to assist stakeholders across the country in evaluating and advocating for non-discriminatory hospital visitor policies, at The Arc; Center for Public Representation; and CommunicationFIRST

For more information, complainants’ counsel can be reached at: 

Alison Barkoff, Center for Public Representation

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

Tauna Szymanski, CommunicationFIRST

tszymanski@communicationfirst.org or 202-556-0573

Shira Wakschlag, The Arc of the United States

wakschlag@thearc.org or 202-534-3708

Cathy Cushman, Disability Rights Connecticut

catherine.cushman@disrightsct.org or 860-469-4461

The Arc logo

The Arc: The Ongoing Violence Against Black and Brown Communities in Our Country Is Unacceptable

The Arc released the following statement on the need for swift and substantial action in our society and from our nation’s leaders to dismantle racism, end discrimination, and to honor, protect, and enforce the civil and human rights of all people.

“The ongoing violence and police brutality against Black and Brown people in our country is unacceptable. We stand in solidarity with every person and community that is appalled by the homicide of George Floyd, and so many others before him. We stand in solidarity too with those who are taking action against the systemic racism that underlies this behavior. Racist attitudes and behavior should have no place in America.

“Tragically, the historical and everyday reality is that the lives and humanity of people of color, and members of other marginalized communities, are too often not valued and respected. The Arc renews its own commitment to social justice and the dismantling of the systems of oppression and discrimination that further this violence and neglect.

“We all must step up and speak out, including our nation’s leaders, to uphold the rights of communities of color to be free from over policing, police brutality, misconduct, harassment, and racism. To be silent is to be complicit,” said Peter Berns, CEO, The Arc.  

The Arc logo

The Arc Joins Supreme Court Amicus Brief Urging Court to Uphold Affordable Care Act, Congressional Protections for People With Disabilities

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

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

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

The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not be able to afford health insurance without the ACA, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

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

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

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

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

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

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

A row of empty hospital beds

Over 30 Groups File Amicus Brief in Wisconsin Regarding Heightened COVID-19 Risks to People With Disabilities and Older Adults

The Arc, The Arc Wisconsin, and over thirty Wisconsin and national disability and aging advocacy organizations, represented by the law firm Munger Tolles & Olson, have filed an amicus brief with the Wisconsin Supreme Court explaining the significantly heightened risks to people with disabilities and older adults of experiencing life-threatening consequences from COVID-19. These heightened risks are further compounded by race, with African Americans more likely to have a disability than any other group and dying from the virus at twice the rate of the rest of the population. In Wisconsin, African Americans are 6% of the population, but 39% of deaths from COVID-19. Should the state’s stay-at-home order (“order”) be lifted prematurely, the disproportionate harm to people with disabilities and older adults would only worsen, putting thousands of lives in immediate danger, especially those living in group homes and congregate care settings.

“Re-opening cities and states too early against the advice of state public health officials would increase spread of the virus and overwhelm our health care system with a resurgence of COVID-19, with disproportionate and devastating effects on people with disabilities and older adults, who are far more likely to experience life-threatening consequences from the virus. The Arc has been fighting tooth and nail to protect people with disabilities during this pandemic, and any interference with state public health measures significantly undermines the important progress that has been made nationwide, with inevitably tragic results,” said Peter Berns, Chief Executive Officer of The Arc.

“We are gravely concerned for the lives of Wisconsinites with disabilities, older adults, and their support staff. We have heard from many constituents across the state about the fears they have about this virus and anxiety regarding experiencing discrimination in medical care if they end up hospitalized. The Arc Wisconsin and our partner organizations have worked hard over the last month to ensure the best possible outcomes for our constituents during this pandemic and we simply cannot afford to go backwards,” said Lisa Pugh, Executive Director of The Arc Wisconsin.

If the order is lifted against the advice of public health officials, people with disabilities and older adults—already at heightened risk of life-threatening complications from the virus—will face even greater risks of harm due to:

Underlying conditions. People with disabilities of any age are more likely to have underlying health conditions that put them at greater risk of serious complications and death if exposed to the virus.

Lack of Personal Protective Equipment (PPE). People with disabilities and older adults, whether living in congregate or community-based settings, often require assistance from a workforce that cannot maintain social distance while supporting them in their daily lives.  The state and nationwide shortage of PPE puts both staff and those they are supporting at higher risk of contracting the virus, which will only be exacerbated if the order is lifted.

Congregate settings. Many individuals with disabilities and older adults live in congregate settings such as group homes, nursing homes, intermediate care facilities, and psychiatric facilities. Congregate settings like these have seen rampant spread of the disease and alarming death rates.  If the order is lifted, these numbers will only worsen due to greater community exposure of staff coming in and out of the facilities and the potential lifting of visitor restrictions to these facilities.

Discrimination in medical care. People with disabilities and older adults are at greater risk of being denied life-saving medical care treatment if an uncontrolled outbreak forces rationing of medical care, a situation in which people with disabilities and older adults are more likely to be harmed due to a history of discrimination.

Homelessness. People with disabilities and older adults also experience homelessness at a far greater rate than the rest of the population, putting them at even greater risk as the CDC has identified homelessness as an additional risk factor in contracting the virus.

Rows of empty desks in a classroom

Welcome Relief for Students With Disabilities and Families

WASHINGTON – During this time of crisis for families all over the country, The Arc is relieved that the U.S. Department of Education has reaffirmed the rights of students with disabilities to have equal access to education – pandemic or not.

The CARES Act directed Secretary Betsy DeVos to provide Congress with recommended waivers under the Individuals with Disabilities Education Act (IDEA) and other laws. This week, the Department announced it will not request waiver authority to Congress during the COVID-19 pandemic to give school districts the option to forgo critical provisions of IDEA, the core of federal special education law.

“We are pleased that in its recommendation, the Department of Education is on the side of the nearly seven million students with disabilities in the U.S. and their families, struggling together in makeshift classrooms at home to adapt to distance education. Students with disabilities have the right to special education and related services, even during these very difficult times,” said Peter Berns, CEO, The Arc.

In her report, Secretary DeVos points to several vital principals that are central to The Arc’s longstanding advocacy in special education, including that “schools can, and must, provide education to all students, including children with disabilities,” “the needs and best interests of the individual student, not any system, should guide decisions and expenditures,” and that “services typically provided in person may now need to be provided through alternative methods, requiring creative and innovative approaches.”

“We recognize the unique challenges educators, students, and families face right now, and greatly appreciate the many schools and districts that are stepping up and working closely with families to ensure the best educational services under these uncharted circumstances. Now, as we brace ourselves for the long-term financial strain on our education system due to COVID-19, we call on school systems and schools to commit to IDEA and provide appropriate education to all,” said Berns.

The United States Capitol Building

COVID-19 Small Business Bill: Temporary Relief to Service Providers in Need, but Disability Community Needs More in Package 4

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

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

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

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