The United States Capitol Building

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

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

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.

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

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 (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.

The Arc Announces Grant from The Coca-Cola Foundation

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.

Eviction Moratorium Welcome Step, Further Action Needed

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.

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

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

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

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

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

  • No Exclusions or Deprioritizing Based on Resource Intensity or Disability Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because they have a disability diagnosis or functional impairment. Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence
  • No Long-Term Survivability Considerations: Utah has eliminated long term survivability as a consideration in treatment decisions, changing its Guidelines to allow medical personnel to consider only “short-term mortality.” Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.
  • Reasonable Modifications Required: Utah’s Guidelines now require hospitals to make reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)—the tool used to prioritize access to medical treatment—to avoid penalizing people with underlying conditions that are unrelated to their ability to benefit from treatment. The Guidelines note that other reasonable modifications may also be required to provide equal access to treatment for patients with disabilities.
  • Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment.

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

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

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

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

For more information about today’s resolution, contact:

Nate Crippes, Utah Disability Law Center

ncrippes@disabilitylawcenter.org or 801-910-5815

Alison Barkoff, Center for Public Representation

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

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

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

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

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

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

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

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

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

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

New HUD Rule Weakens Fair Housing Protections for People With Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

A woman and her son smile for the camera.

Planning Can’t Wait: Preparing for Life’s Emergencies

Thinking about your child’s future after you’re gone is hard for most parents. For the parents of people with disabilities, the topic can be so daunting that it can feel impossible to broach.

The result? Families all over the country shelve this conversation as long as possible. But the COVID-19 pandemic has been a stark reminder that planning can’t wait. The hard truth is that reactive instead of proactive planning means that people and their families have little to no control over the supports and life choices available to people with disabilities in emergencies. 

Mapping a secure and independent future for loved ones with disabilities is both necessary and possible. It can be done step by step over time…just like financial and life planning for anyone else. Creating a future plan looks different for everyone:

  • Does the person want to live in a group home? On their own? With a sibling or other family member? How much support do they need to achieve the most independence possible?
  • What do they like to do in their free time? What support do they need to do those activities?
  • What public benefits are they currently receiving? Are they covered under insurance policies or trusts? Do they have a job or savings, or will they in the future?

Delores Sallis is no stranger to planning. Not only has she made it a priority to set up her son Albert for success, but she is working hard in her community to ensure other families feel confident doing the same.

Delores and Albert’s Journey

A woman and her son smile for the camera.

Sallis’ inspiration is her son Albert, her “pride and joy.” Albert, 30, has intellectual and developmental disabilities and lives at home with Delores.

Delores worked in a group home for 35 years, and saw many residents suffer because things didn’t go according to plan when parents passed away. Siblings that were supposed to become guardians didn’t show up. Residents didn’t have families to go home with for the holidays. Many missed their old routines and declined. Delores would often bring home multiple residents so they would not spend the holidays alone.

Delores resolved to ensure Albert never encountered the same pain: “I didn’t want my son to decline because of that.”

As Delores began to contemplate what his future would be like without her in it, she devised a plan for several “practice runs” where Albert’s sibling would assume responsibility of him for 24-hour periods. After several difficult situations throughout the exercise that highlighted the flexibility and fortitude required, plans for his sibling to become the primary caregiver were revisited.

Instead, one of his old teachers named Laurie stepped in. She lived two blocks away, and Albert was one of her favorite students in high school. When COVID-19 hit, she became his emergency contact in case Delores contracted the virus. Laurie also recruited two other teachers to back her up if she needed to take over his care. Delores’ friend volunteered to manage his assets, and Albert’s sister would cover safety and wellness checks. This network of support would also enable Albert to remain in his existing home, which already had the benefit of familiarity as well as modifications in place for him.

Seeing both the benefits of a robust plan and the dangers of not having one, Delores decided to put her passion for helping families navigate their personal journey into action. After years of informally supporting families, Sallis founded Parent University in the Wisconsin African American Women’s Center in 2017.

She encourages her families to create a vision board. Watching them chart a path to the future brings her tears of joy. “I start at the bottom where they’re at and we climb a ladder together,” Delores said. “Sometimes people think they have failed. The problem is they just didn’t know how to do something.” She also continues to provide these valuable opportunities to local families even during COVID-19, recently coordinating a “drive-through” resource fair.

Families also benefit from the community Delores has created. Many had never opened up about their family before, but once they were surrounded by others who shared their fears and experiences, it became the highlight of their week to meet. Parent University isn’t just a place to learn—it’s a support group and community that helps every family member tackle the fear of future planning by remembering they’re not alone.

As for Delores? Her successful planning for Albert’s future is based on one core principle: planning is a process that never ends. Being truly prepared means continually pivoting with the inevitable changes that life brings over time. With determination, Delores notes “He has a great life and I’m gonna try to keep it that way.”

So how can families that have a loved one with a disability be proactive, rather than reactive? Start by learning more about future planning to ensure your loved one has the housing, decision-making, financial, and social supports they need—gradually and piece by piece. The most important thing is to take the first step and start.