man in hospital bed comforted by friend as doctor looks on

High Risk, Infected, and Dying of COVID-19, but Who Is Counting?

/in , , /by Pam Katz

By Nicole Jorwic, Senior Director of Public Policy

At an institution in Denton, Texas, where 400 people with disabilities live, 54 have COVID-19, and 50 employees are infected.

At a state run facility in Danvers, Massachusetts, 40% of residents are infected, plus 55 nurses who work at the facility.

In Illinois, two institutions are experiencing such extreme outbreaks that the National Guard is being called in to help with temperature checks.

And in New York, Maryland, Washington State, Georgia, and most likely in every state – people with intellectual and developmental disabilities, or IDD, have lost their lives to this vicious virus.

People with IDD face grave danger in the face of the COVID-19 pandemic – with underlying health conditions, many are at a higher risk. Then why aren’t you hearing about it? Nursing homes and cruise ships, overflowing emergency rooms and makeshift hospitals set up in Central Park fill our television screens and headlines.  Why are people with disabilities far too often ignored when we are focusing on who is impacted by this crisis? Who is counting – and revealing – the dangers facing people with intellectual and developmental disabilities, particularly those living in large, congregate settings?

You see, in 2020, in 36 states, tens of thousands of people with IDD live in institutions. These settings are called many things, like Intermediate Care Facilities for People with Intellectual and Developmental Disabilities (ICFs), “state schools,” “state operated developmental centers” or “state hospitals.” And, thousands of people with IDD live in nursing homes too.

COVID-19 is running through these large facilities in every state like a wildfire, but where is the outrage?  Does the general public believe that these places shut down decades ago? Or is it because these institutions are not publicly reporting what is happening to the residents and staff?

Information about the tremendous risks posed by this pandemic to people with disabilities, whether they live in an institution or nursing homes, must be captured. The Centers for Medicare and Medicaid Services just announced that they are requiring nursing homes to report cases and deaths from COVID-19 to the Federal government. But that requirement was not extended to ICFs or institutions for people with disabilities, nor does it require data from nursing homes that tracks whether or not a sick or deceased individual had a disability. CMS must extend these same requirements to all institutional settings, including ICFs, institutions, and nursing homes, and require that people with disabilities are specifically tracked in this data collection.

For my entire life, the disability community has been fighting to complete what began decades ago with the families and individuals with disabilities fighting to get people out of institutions. We must create the capacity for a home and community-based service (HCBS) delivery system to serve all who need supports. We must build up the workforce needed to provide those services and create the flexible supports that people need so that people with disabilities can be safe in their homes and communities.    

We will get there by investing in HCBS. Representative Debbie Dingell and Senator Bob Casey have introduced bills to create grants for states to expand these services during the pandemic, and pay the workforce that provides those services what they should be paid to do the important work they do, providing support for as much independence as possible in the community.

Congress must include those HCBS grants to states in the next COVID-19 response legislation to keep people with disabilities out of dangerous congregate settings and in their homes and communities. And when this is over, I won’t rest until we have the reckoning that this country needs to fully understand where people with disabilities belong: safely integrated in their homes and communities.

If we are all in this together, then we all count.

Tell Congress #WeAreEssentiall today.

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

/in , , , /by Pam Katz

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

/in , , /by The Arc

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

/in , , , /by Pam Katz

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 (IDD), 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 IDD 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 IDD to live as independently as possible in communities. Our workforce is risking its personal health and safety to provide supports to people with IDD, 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.

A row of $20 bills

For Some Social Security Beneficiaries, 48 Hours to File on an Inaccessible Form or Forgo a Stimulus Payment Until 2021

/in , , , , /by The Arc

The Social Security Administration has put a huge hurdle in front of many people with disabilities and their families from accessing a much-needed boost to their economic stimulus payment. Announced Monday, less than 48 hours before a new Wednesday noon deadline, the Treasury Department and the Social Security Administration are now requiring certain Social Security beneficiaries to file taxes or utilize the new web tool to claim economic impact credits for child dependents under the age of 17. This deadline places an urgent and unexpected burden on people with disabilities and their families. In addition to all the challenges facing people with disabilities and their families amidst this pandemic, the web tool that Treasury created to help people meet this deadline, launched just ten days ago, has accessibility problems. If people do not file the necessary paperwork before Wednesday at noon, they will not be able to claim their credits until 2021.

Who is impacted by this rush? Parents with disabilities receiving Social Security Disability Insurance, along with widows and widowers with children with disabilities, and the retiree grandparents who have disabilities or have adopted grandchildren with disabilities. Many will be forced to wait until 2021 to claim the $500 per dependent child credits.

“This new deadline doesn’t take into account the challenges that many people will face in filling out this paperwork–they need access to the internet, to deal with electronic accessibility issues, and many people with disabilities may need assistance understanding what is required. It’s an absurdly tight turnaround for people who need this financial boost more than many others,” said Peter Berns, CEO, The Arc.

The agency should learn from the past – in 2008, the last time Treasury issued economic stimulus payments, it faced major challenges reaching Social Security, Supplemental Security Income, and other low-income people with disabilities. Ultimately, seventeen percent of this population missed out on the benefit.

“We understand and support the agencies’ desire to issue Economic Impact Payments as quickly as possible, but this solution does not take into account the serious outreach efforts that are necessary to reach these populations. We urge the government to give people longer than two days to file the necessary paperwork right now and to adopt other future deadlines this year so that individuals can submit their information over the course of the year and be paid, and not have to wait until 2021,” said Berns.

A woman smiles from a rooftop with the Washington Monument in the background

Giving Back During COVID-19: Finding Solace in Volunteering

/in /by Pam Katz

By Taylor Woodard

COVID-19 has shaken our world, leaving thousands struggling with anxiety and stress. On a smaller scale, I know what those emotions feel like. Growing up with a disability, I encountered a lot of anxiety: Will I ever live independently? What will my employment options look like? These fears nearly overwhelmed me.

Fortunately, I discovered a way to lessen the anxiety swirling in my head. In my family, helping others was a priority. My mom regularly cooked dinner for a neighbor recovering from surgery. On any given week, we were collecting cans for yet another food drive. I thought the only beneficiary was the recipient. Then I started implementing my own service projects, and I saw an added beneficiary: myself.

In high school, I partnered with local businesses to pack shoeboxes of toys and socks for children. The money from the bake sales I administered helped a family purchase a goat and become self-sufficient. In college, I led a campaign giving 5,000 books to local foster children. Focusing on others was like a balm for my stress—allowing me to both keep perspective on my own life as well as temporarily shelve my own worries.

With COVID-19 wreaking havoc on our health, our jobs, and our future, many are facing relentless anxiety. But there is hope. Research has shown us how: volunteering. Most importantly, volunteering helps relieve the anxiety we are all feeling. Other benefits are combatting depression, keeping us mentally alert, and giving a sense of purpose.

Here are ways to help right now while helping yourself stay mentally well.  

  1. Pack boxes at a food pantry
  2. Deliver groceries to an older adult
  3. Give blood
  4. Organize a mutual-aid network 
  5. Volunteer virtually

The Corporation for National and Community Service also offers additional ideas.

How are you helping your community during this time?

The Arc logo

Victory for People With Disabilities: Recovery Rebate Checks Automatically on the Way

/in , , , , /by Pam Katz

Thanks to the advocacy of people with disabilities and their families and friends, the Treasury Department announced today that it would automatically issue Recovery Rebate payments to people with disabilities who receive Supplemental Security Income (SSI) via the method by which they usually receive their SSI benefits. This change ensures that people with disabilities on SSI will automatically receive the Recovery Rebate payments authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act. This money will help millions of the lowest income people with disabilities deal with the economic strain of the COVID-19 pandemic.

 “The personal consequences of this public health and economic disaster are dire for many people with disabilities. From paying rent, to getting groceries safely, to sheltering in place, it all costs more than what many people have on hand. These stimulus payments are incredibly important to people with disabilities, and now, they won’t have to jump through needless hoops to have some breathing room in their bank accounts,” said Peter Berns, CEO, The Arc.

While many people with disabilities on SSI were deemed eligible to receive Recovery Rebates, and the payment would have been exempt from asset and income limits, there was a catch.

To access payments, Treasury initially said people must have filed 2018 or 2019 taxes, or now file them, even people with IDD who receive SSI who earn too little to file taxes. The Arc led efforts to ensure that these payments were automatic, working with allies across the disability community and on Capitol Hill, to ensure that Treasury knew how critical it was that these payments be made to people with intellectual and developmental disabilities and their families without the burden of filling out unnecessary paperwork.

“In the middle of a pandemic, when people are being told to stay home and away from other people to protect their health, the government was asking people with disabilities to take on unnecessary burden and waste time by filing taxes. It was a commonsense fix that had bipartisan support because it was just the right thing to do. We are delighted that Treasury has acted, and now urge them to do the same for some populations not captured in this announcement, including many of the lowest income veterans with disabilities,” said Berns.

The Arc logo

Alabama Withdraws Discriminatory Ventilator Rationing Policy and Issues Directive About Non-Discrimination in Accessing Life-Saving Treatment

/in , , , /by The Arc

WASHINGTON – Today, in response to a complaint filed with the U.S. Department of Health and Human Services Office for Civil Rights (OCR) by the Alabama Disability Advocacy Program (ADAP) and other disability rights advocates, the state of Alabama has withdrawn its discriminatory ventilator rationing policy and instructed hospitals across the state that they cannot discriminate against people with disabilities in accessing treatment.  The previous policy placed the lives of disabled adults and children at serious risk, in violation of federal law, by ordering hospitals to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.” The complaint was filed by the ADAP and The Arc of the United States, together with counsel from the Center for Public Representation, Bazelon Center for Mental Health Law, and Sam Bagenstos.

After receiving the complaint, OCR took swift action to reach a resolution.  With today’s announcement, OCR has made clear to Alabama and states and hospitals across the country that excluding people with disabilities from access to life-saving treatment is illegal and intolerable.

“We are pleased that the state of Alabama has rescinded this illegal policy and given notice to hospitals across the state that they may not rely on this policy and cannot discriminate against people with disabilities in accessing lifesaving care,” said Peter Berns, CEO, The Arc. “We call on other states and health care providers to immediately examine their treatment policies to ensure that people with disabilities who need ventilators to breathe or other life-saving treatment have equal access to care.”

“States and hospitals across the country should heed OCR’s warning and take affirmative steps to ensure their policies do not discriminate against people with disabilities,” said Cathy Costanzo, Executive Director of the Center for Public Representation.

In addition to withdrawing the discriminatory policies, Alabama has put in place new Crisis Standards of Care (CSC) Guidelines that contain important non-discrimination provisions.  The new Guidelines do not, however, address how ventilators will be rationed in the event it becomes necessary to do so.

“Today’s actions are an important first step, and we appreciate that the state of Alabama acted quickly to withdraw its discriminatory policy,” said Rhonda Brownstein, Legal Director of the Alabama Disabilities Advocacy Program.  “We call on the Governor to work with ADAP and others in the disability community to develop transparent and clear guidance on how to implement these non-discrimination requirements in the event that rationing of ventilators becomes necessary.”

Matthew Foster is an example of how Alabama’s previous ventilator rationing policy could have impacted people with intellectual and cognitive disabilities. Matthew, who is 37 years old and has Down syndrome, might have been excluded from access to a ventilator under the previous policy.  When Matthew was told that the state rescinded the discriminatory policy, he was relieved: “I have Down syndrome. It’s not going away. But I have a right to live. I’m worth it.” Matthew, who has held a job for the past twenty years, has “had a positive impact on our family and community. The idea that his life is not worthy because of his intellectual disability is devastating and wrong,” says his mother, Susan Ellis. “In this time of crisis, we cannot devalue the lives of others in our community based on their disabilities. It’s morally wrong, and it violates the law. We are grateful that OCR acted quickly on the complaint and that the state of Alabama ended its previous policy.  I can now breathe a sigh of relief.”

ADAP and the other organizations involved in the OCR complaint will be vigilant in ensuring that hospitals across Alabama comply with the new non-discrimination requirements.  “We will not hesitate to take further legal action if any discrimination against people with disabilities in accessing COVID-19 treatment occurs,” said Jennifer Mathis of the Bazelon Center for Mental Health Law.

Complainants are represented by their counsel, who are available for comment:

Rhonda Brownstein, Alabama Disabilities Advocacy Program

rbrownstein@adap.ua.edu

Shira Wakschlag, The Arc of the United States

Wakschlag@thearc.org

Jennifer Mathis, The Bazelon Center for Mental Health Law

jenniferm@bazelon.org

Cathy Costanzo and Alison Barkoff, Center for Public Representations

ccostanzo@cpr-ma.org; abarkoff@cpr-us.org

Samuel Bagenstos

sbagen@gmail.com

Black and white photo of people holding signs that say "I Count. Count me in. Census 2020"

Spotlight on Self-Advocacy at The Arc of Sedgwick County

/in /by Pam Katz

The Arc of Sedgwick County in Kansas has something many chapters do: a self-advocacy program. And their program is wildly successful, in part because of its focus on volunteerism. Members don’t just learn how to advocate for themselves effectively—they take an active role in constantly giving back to their community. As a result, they have built lasting relationships and helped the programming of the entire chapter grow stronger. Read more from their Executive Director Kevin Fish about how Sedgwick’s “Shooting Stars” are changing their community for the better.

Tell us about the self-advocacy programs you run at The Arc of Sedgwick County.

The “Shooting Stars” self-advocates started as the Young Employable Adults (YEAs) back in 1972.  The focus was to help them develop self-confidence and independence and reach their fullest potential.  Early efforts were to encourage and promote community employment. Over time it was expanded as we explored what it meant to advocate for yourself.

A large group of people sits and stands posing for a photo.

The “Shooting Stars” focus heavily on volunteerism and giving back to the community. What types of activities do they do and what are some of the positive results you’ve seen of this approach?

Our self-advocates will help with our Youth Activity Days for our Circle of Friends program. They run games and other activities and help prepare lunch for 1100 students attending our annual wildlife park day. 

They sponsor and run a free Halloween trick or treat event for neighborhood kids. They sponsor photos with Santa and help with preparations for The Arc’s Lights drive-through Christmas display. They host and help run an Easter egg hunt for children with IDD and their siblings. They assist with almost every special event The Arc does each year.

The community’s appreciation for the work they do helps them gain confidence and feel connected. They enjoy the happiness they give others and how kids look up to them. Many self-advocates have gone to advocate at the state capitol and presented to the City Council and the County Commission. Members have served on The Arc’s board, presented monthly reports to the Board, and served on various committees, boosting their pride in themselves.

What is the involvement level of your staff in supporting the efforts of your self-advocates? How does the group decide what types of activities they do and how they structure their events?

Our staff help lead monthly discussion forums and help organize monthly potlucks and quarterly appreciation events for our self-advocates. During our forums and potlucks, we will discuss upcoming events and activities and what they want to do. Many of the activities have become a tradition! They are invested and feel a sense of ownership and pride in what they are doing. For the forums, staff will also prepare some interactive educational components on topics like finance, work expectations, relationships, and daily living.

It’s hard not to mention the current health crisis affecting us all and the importance that supporting each other has taken on in the last few weeks. Does the group have any plans to volunteer in your community the coming days, and if so, what? Has the self-advocacy programmatic structure you’ve set up helped provide any stability, socially or otherwise?

For a group that is so active, not only with The Arc, but within our community, the current pandemic has made life a challenge. Most all of them are no longer working with the state-wide stay at home order.  Most every event and activity at The Arc has been cancelled or postponed for the next month.  Many of the entertainment facilities and churches are all closed, eliminating places they like to go or volunteer after work. This change in routine is difficult. What they see and hear is creating anxiety in many. The isolation is creating loneliness. Within our self-advocate group, we have been trying to encourage them to call a friend, send a note an email, or reach out through social media. Especially for those who live alone, we want to make sure people are connecting regularly. 

What should other chapters know who are interested in starting and growing a self-determined self-advocacy program?

Helping your self-advocates find their voice, take charge of their lives, and advocate for themselves and those around them is part of our mission. A passionate and active self-advocate group can make a big difference in not only your organization, but also your community and state. The development of our self-advocate group to help them reach their fullest potential truly became a way for our chapter to work towards reaching its fullest potential. Countless programs and events were created or evolved based on what our self-advocates wanted, needed, or wished they had. They provide more than manpower. They are invested, passionate, and inspired and help us continue to feel the same way too.

Black and white photo of people holding signs that say "I Count. Count me in. Census 2020"
A row of empty hospital beds

Large Coalition of National Disability and Health Advocacy Organizations Endorse Guidance on Preventing Disability Discrimination in COVID-19 Treatment Rationing

/in , , , /by The Arc

Today, the Center for Public Representation, The Arc of the United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education & Defense Fund, and Professor Samuel Bagenstos released critical guidance to states and healthcare providers about how to avoid discriminating against people with disabilities if rationing access to COVID-19 treatment becomes necessary. The guidance is endorsed by 90 national disability and health advocacy organizations.

As COVID-19 cases increase and spread throughout the country, U.S. health officials are predicting that there will not be enough ventilators, medical equipment, hospital beds, and health care personnel to meet the demand of patients with the virus who require intensive treatment. Some states and cities are already experiencing a shortage, and health care professionals and state officials have begun developing and updating protocols to determine who will and will not have access to life-saving COVID-19 treatment in the event care rationing becomes necessary. Last week, advocates filed four complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (HHS-OCR) challenging the treatment rationing plans of Washington State, Alabama, Kansas, and Tennessee as discriminatory against people with disabilities in violation of federal disability rights laws and expressing grave concerns about the threat such plans pose to the lives of people with disabilities. The Consortium for Citizens with Disabilities, National Council on Disability, and members of Congress also sent letters to HHS-OCR, asking it to issue guidance about the application of disability rights laws to rationing plans.     

In response to these complaints and letters, HHS-OCR issued a Bulletin on March 28, 2020 entitled “Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19),” that makes clear that federal disability laws prevent people with disabilities from being “put at the end of the line for health services during emergencies” and “protect the equal dignity of every human life from ruthless utilitarianism.” The HHS-OCR Bulletin explains the obligations of states and health care providers to comply with federal disability rights laws in developing treatment rationing plans and administering care in the event of a shortage of medical equipment.  The guidance released today by advocates elaborates on the requirements in the HHS-OCR Bulletin and explains how states and health care providers can take concrete steps to modify policies and practices so that people with disabilities aren’t denied medical treatment based on their disability and stereotypes and biases about whether they are fit to live or die.

We are committed to ensuring that people with disabilities have equal access to life-saving treatment during the COVID-19 pandemic.  We expect that today’s guidance will assist states and medical providers in collaborating with disability stakeholders in their communities to develop fair, non-discriminatory policies. 

“During times of crisis, we see who we really are. The nationwide strain COVID-19 is putting on our health system puts to the test the legal and moral promises our country has made to treat people with disabilities in a way that is fair and just – that means providing life-saving treatment when it is needed and possible. We urge states and health care providers to take this guidance very seriously,  we expect nothing less and will continue to work aggressively to protect the inalienable civil rights of people with disabilities,” said Peter Berns, CEO, The Arc.

For more information on our guidance and advocacy regarding medical rationing, contact:

Center for Public Representation:  Cathy Costanzo, ccostanzo@cpr-ma.org or Alison Barkoff, abarkoff@cpr-us.org

The Arc of the United States:  Shira Wakschlag, wakschlag@thearc.org 

Bazelon Center for Mental Health Law:  Jennifer Mathis, jenniferm@bazelon.org

Autistic Self Advocacy Network:  Samantha Crane, scrane@autisticadvocacy.org

Disability Rights Education & Defense Fund:  Claudia Center, ccenter@dredf.org

Professor Samuel Bagenstos:  sbagen@gmail.com

Link to today’s guidance: https://thearc.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf