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@thearcwebdev.wpengine.com

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

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@thearcwebdev.wpengine.com 

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://thearcwebdev.wpengine.com/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf 

 

The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

/in , , , /by The Arc

By: Nicole Jorwic, Senior Director of Public Policy, The Arc

After being all but ignored in the first three legislative packages that Congress has passed to address the COVID-19 pandemic, the disability community must rise up. We are once again fighting for our lives in Congressional negotiations—this time during a global pandemic. And the outcome will impact the services people with disabilities rely on, severely strain systems that provide those services, and may close down service providers all over the country that support people with disabilities to live the lives they choose.

This is far from the first time in my five years in Washington, DC, that I have watched Congress overlook the disability community. In 2017, the year Congress tried again and again to cut funding to Medicaid, a program that people with disabilities rely on for supports and services, we made them pay attention. But it took people with disabilities and their families coming forward to share their most personal stories, and some literally putting their bodies on the line, to show Congress that Medicaid means life and death. Together we were strong enough to hold off the full repeal of the Affordable Care Act, protect the integrity of the Medicaid program, and show the power of our community.

And, again, it seems the issues that matter to the disability community are being ignored. Our chapter network is on the front line of this pandemic: some of the people with disabilities they serve have passed away from COVID-19, and others don’t have the supplies for staff to safely serve or quarantine. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can’t be done from six feet away, yet the personal protective equipment (PPE) necessary to do these tasks safely is scarce. And in the coming weeks and months, we know that some service providers will be forced to close, leaving families like mine with nowhere to go.

But the fight to save Medicaid in 2017 showed that when we band together as one voice, we can make things happen.

Despite the magnitude of what we are facing as a country, this is the time we must once again share our stories. We must demand that Congress address the needs of the disability community in legislation to combat COVID-19.

Here is what Congress MUST do to support the disability community:

  • Funding for a Medicaid grant program to support access to home and community-based services (to minimize the risk of people with disabilities being forced into institutions) and to support the DSP workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Paid leave for 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.
  • Help for people on Supplemental Security Income (SSI) to access Recovery Rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities, their family members, or the DSP workforce, #WeAreEssential.

Ready to act with us? Here are three easy ways:

Call CongressEmail Congress Tweet Congress

Small Victories, but Stimulus Bill Overlooks Many Critical Needs of People With Disabilities, Their Families, and Workforce in COVID-19 Crisis

/in , , , /by The Arc

Washington, D.C. – While the legislation passed by Congress this week to address the COVID-19 pandemic will help in some ways, many of the grave issues facing people with intellectual and developmental disabilities (IDD), their families, and workforce, were ignored.

“This is an unprecedented crisis for everyone, and everyone includes people with disabilities and their families. While this bill does provide some important support in this pandemic, there are huge risks facing people with disabilities, their families, and the direct support professional workforce that were largely ignored in this response,” said Peter Berns, CEO, The Arc.

The big missing pieces in this $2 trillion bill are:

No new funds for in-home supports. As we have seen in nursing homes in Washington state and on cruise ships, COVID-19 is particularly dangerous in congregate settings. To address the needs of people with IDD who need care at home, Congress must approve funding to expand home and community-based services and minimize the risk of people with disabilities being forced into institutions. States need these additional, new dollars to minimize waiting lists for home and community-based services, and to hire enough workers, provide wage increases and overtime pay to the workforce.

Doesn’t address the shortage of personal protective equipment, and other medical supplies, needed for direct support professionals and providers to be safe. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can’t be done from six feet away, yet the gear necessary to do these tasks safely is scarce, and Congress did not expand access to personal protective equipment for DSPs. This will lead to illness and death.

No paid time off for family caregivers of people with disabilities. A family caregiver who has to take off from work to care for a loved one with disabilities is not guaranteed paid time off.  Their employer, if they provide time off, will not be eligible for the tax credits Congress provided for employers to cover the costs of paid sick days and expanded Family and Medical Leave Act. As disability service providers have been ordered by government agencies to stop some services, families are scrambling to provide care to their family members with a disability, often at the expense of their job.

Forcing people with disabilities receiving Social Security and Supplemental Security Income (SSI) to jump through needless hoops to access stimulus payments. People with disabilities were included in the stimulus payments, Recovery Rebates, which are exempt from asset and income limits. But to access payments, 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.

“We know that thousands of people with disabilities and family members implored their Members of Congress to include these needs in this bill. We are going to have to be a lot louder in the coming weeks, as we face the grim reality of this virus spreading further, putting the health, wellbeing, and lives of people with disabilities, their family members, and direct support professionals on the line,” said Berns.

The stimulus package does respond to some critical needs of people with IDD and their families by:

Including non-profit organizations that receive Medicaid funds in the small business loan assistance. At first left out of the package, this inclusion is incredibly important for people with disabilities, family members, and service providers because without access to small business loans, some service providers may not survive.

Allowing direct support professionals to accompany and assist the people they support when they are in the hospital. Prior to this bill, this level of support was not allowed. This will assist individuals who end up hospitalized with their transition home after they recover.

Funding for special education and some protections for students. Additional funds that can be used for various education programs, including the Individuals with Disabilities Education Act, or IDEA. The bill does not grant the Department of Education any authority to waive the IDEA, but it does include a directive for the Secretary of Education to make recommendations for waivers for education laws, including IDEA.

Funding for housing. The bill provides $12 billion in funding for U.S. Department of Housing and Urban Development programs, and important eviction and foreclosure protections.

Extending, but not permanently putting in place, a successful program which moves people with disabilities out of segregated settings and into the community. Money Follows the Person program, or MFP, provides flexibilities and funds to support states to continue transitions to the community and away from congregate settings. However, at a time when the risk for institutionalization is high, instead of permanently extending MFP, Congress opted for its fifth short term extension, which now expires November 30, 2020. We will continue to seek permanent reauthorization of this program.

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

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

The Arc logo

Disability Discrimination Complaint Filed Over COVID-19 Treatment Rationing Plan in Washington State

/in , , /by Pam Katz

SEATTLE – As COVID-19 cases increase, the experience in other countries and predictions of U.S. health officials is that there will not be enough acute care services or equipment, such as ventilators, to meet the demand of patients with the virus who require intensive treatment.  Health care professionals in the United States are already developing protocols for responding to COVID-19, including treatment rationing that will determine who will and will not have access to life-saving treatment.   

Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), and The Arc of the United States (The Arc) filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights (OCR) about their grave concerns that the plans being put in place discriminate against people with disabilities in violation of federal disability rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504) and Section 1557 of the Affordable Care Act (ACA) and place their lives at serious risk.  We call for OCR to take immediate action to address this discrimination and assist local jurisdictions and providers to develop non-discriminatory approaches before there are lethal consequences to application of these illegal policies.

The complaint focuses specifically on the plan released Friday by the Washington Department of Health and the Northwest Healthcare Regional Network that even those who developed the plan admit “is not going to be pretty.”

“I know already that intellectually disabled people get denied care because of being seen as lacking value,” said Ivanova Smith, Chair of Self Advocates in Leadership and individual complainant in the letter filed today with HHS OCR. “I deserve the same rights as anyone else. These policies discriminate against me and put my life at risk.”

Published descriptions of the goals and flow charts in the WA DOH and NHRN plan mirror the existing policy of the state-run University of Washington Medical Center (UWMC), which gives priority to treating people who are younger and healthier and leaves those who are older and sicker—people with disabilities—to die.    

A Seattle area patient of the University of Washington Medical Center explained that “I am concerned that a doctor will see my diagnosis of cystic fibrosis in my chart and make lots of erroneous assumptions about me. Cystic fibrosis often comes with significant breathing difficulties and a life expectancy of 30 years,” said Rose, not her real name due to fear of retaliation. “However, tests show that I have better breathing capacity than most people without cystic fibrosis and although I’m 28 years old, I have never been hospitalized and I am not anywhere close to dying. If I get COVID-19 and need intensive treatment like a ventilator, I fear the person making decisions about who gets treatment and who doesn’t will see my file among dozens or even a hundred or more people all competing for limited spots and my diagnosis will stand out and be used to exclude me from getting treatment despite what my individual medical tests and record say.”

Rose’s case shows how this plan will have a heavy impact on people with disabilities.  While medical knowledge of COVID-19 is constantly evolving, it is known that having an underlying medical condition heightens the effect of the virus. The conditions frequently mentioned include compromised immune, respiratory, cardiovascular and endocrine systems. All of these are common symptoms of many different physical disabilities and when significant enough form the basis of the disability on their own.

“The disability community is a broad, inclusive community where individuals with a variety of unique life experiences join forces to fight the many ways they are similarly discriminated against. We will not sit by as members of our community are left for dead. We stand up for those with preexisting disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR to rein in and provide urgently needed guidance to the health care professionals who are prepared to relegate members of our community to die,” said David R. Carlson, Director of Advocacy, Disability Rights Washington.

“As COVID-19 sweeps our country, we are reminded once again that for far too long, the lives of people with disabilities have been undervalued. It is cruel that a person with a disability seeking medical treatment during this pandemic may not receive the care they need or they may be left to suffer or die because they are seen as less than or other. It is urgent that the federal government make very clear right now, on the front end of this health emergency, that it will swiftly enforce federal laws that protect against medical rationing plans discriminating against people with disabilities. We know this is just the beginning, and that there are many more days and months to come. The federal government must get it right, now, from the start. The lives of millions of people with disabilities across the nation are at stake – and those lives do have value,” said Peter Berns, CEO, The Arc.

The complaint stresses that OCR has a very brief moment to intercede. “If OCR fails to act swiftly to clearly and firmly articulate the violation of civil rights implicated by the rationing plan about to be unveiled in Washington, there will be no way to undo the lethal outcome of the discriminatory plans that have been formulated without OCR’s guidance. We request that you enforce the obligations of the healthcare professionals in Washington to develop non-discriminatory approaches to the delivery of care before it is too late.”

“Even in the midst of the current crisis, Washington State must abide by its obligation to not discriminate against people with disabilities. The complainants are on the front lines of a vital civil rights struggle. Their lives are at stake. I urge the HHS Office for Civil Rights to take swift action to protect them,” said Ari Ne’eman, Visiting Scholar with the Lurie Institute for Disability Policy at Brandeis University.

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

David Carlson, Disability Rights Washington

davidc@dr-wa.org

Shira Wakschlag, The Arc of the United States

Wakschlag@thearcwebdev.wpengine.com

Sam Crane, Autistic Self Advocacy Network (ASAN)

scrane@autisticadvocacy.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

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

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

/in , , , , , /by The Arc

Washington, D.C. – People with intellectual and developmental disabilities (IDD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with IDD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with IDD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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

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

Close up of a microscope

Coronavirus Relief Bill: The Arc Fights for Disability Community

/in , , , /by Pam Katz

The Arc is pleased that Congress is recognizing the unique and vital needs that people with disabilities have when facing the COVID-19 pandemic. The emergency relief bill introduced in the U.S. House of Representatives today includes important and specific measures that would help mitigate the potentially catastrophic impacts of the novel coronavirus on millions of people with disabilities.

As we grow increasingly concerned over the threat of COVID-19 to people with disabilities, their families, and the workforce that supports them, we are encouraged that the House bill includes increased federal reimbursement for state Medicaid programs, which will help the uninsured gain access to COVID-19 testing, emergency requirements for all health insurers to cover testing, expanded nutrition assistance, and paid sick days and paid leave.

We are glad to see that the paid sick time and paid leave provision could be used to care for loved ones who are “otherwise in need of care.” That would cover workers who take time off to care for a loved one with a disability who has lost their primary source of care due to the new coronavirus.

As the legislation moves through Congress, we are advocating for specific funding to support the direct support professional workforce that supports people with disabilities, whose wages largely come from Medicaid, and that they are covered by both paid sick days and paid leave policies put in place by this legislation. Further, people with disabilities must be able to have access to a 90-day supply of medication and medical supply re-fills.

“This bill addresses many of the needs of people with disabilities in this global crisis. As the coronavirus relief bill moves through Congress, the paid sick days and paid leave policy must include funding to cover our direct support workforce,” said Peter Berns, CEO, The Arc. “We fear that without appropriate action by Congress and President Trump, the coronavirus pandemic could lead to further exacerbation of the workforce crisis and the unnecessary placement of people with disabilities and aging adults into institutions and other congregate settings in violation of their rights and posing risk to their health.”

The Arc logo

The Arc, Allies, and Self-Advocates Finally ‘Stop the Shock’

/in , , , , , /by Kristin Wright

WASHINGTON – After too long of a wait, The Arc celebrates a victory in our seemingly never-ending fight to underscore the value and human dignity of the lives of people with disabilities. After years in limbo, the Food and Drug Administration announced Wednesday it will finally ban the use of the electric shock device that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents.

“The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to ‘stop the shock’ and to end abusive and cruel practices masquerading as ‘behavioral treatments.’ People with disabilities deserve to live free from fear and torture. The FDA’s decision, years in the making, to ban the use of the electric shock device is a hard-fought victory and a testament to what is possible when disability advocates fight their hardest for change and for the civil rights of people with disabilities. We hope the ban is a significant step in ending the use of all aversive procedures on people with disabilities, who deserve to be supported with dignity,” said Peter Berns, CEO, The Arc.

The Arc logo

Public Charge Rule Discriminates Against People With Disabilities

/in , , /by The Arc

Washington, D.C. – The Arc is deeply concerned that the Department of Homeland Security’s discriminatory public charge rule is now in effect.

The new policy could have terrible impacts on people with intellectual and developmental disabilities (IDD) by allowing the federal government to deny admission into the U.S. or an application for a green card based solely on a person’s disability and the use or expected use of public benefits like Medicaid. Medicaid is the only funding source that covers long-term services and supports for many people with disabilities. Home and community-based services are not covered by private insurance. The rule also dramatically expands the list of public benefits the Administration considers a strike against you, and the negative consequences start at a much lower level of assistance.

The new policy also creates fear among immigrant families already in the U.S. that rely on public services – fear of jeopardizing their immigration status by utilizing the critical benefits they are legally entitled to. This is not only unfair and counter to the purposes of these programs, but can create bad economic outcomes and harm public health. We have already seen evidence of the intimidation and harmful consequences  of the new regulations. The Kaiser Family Foundation says nearly half of community health centers report that many immigrant families declined to enroll in Medicaid in the past year, and nearly a third of centers report that some patients dropped or decided not to renew coverage – even for their children.

“People with any type of disability should have equal opportunity to enter and live legally in the U.S. The public charge rule is cruel – and amounts to clear cut discrimination. We call on Congress to immediately intervene,” said Peter Berns, CEO, The Arc. “The Arc and our allies have been fighting for a long time against exclusion and bias based on disability and we will continue to do so on the ground and in the courts.”

The Arc and a large coalition of national disability advocacy groups filed multiple amicus briefs in support of several cases to block the Administration from implementing the public charge rule, arguing that it would prevent people with disabilities from entering the country or becoming legal residents in violation of federal disability laws.

While implementation of the rule had been halted by preliminary injunctions in various courts across the country, the U.S. Supreme Court has now stayed both the nationwide and state injunctions in two decisions, the most recent issued last Friday. Though the rule is now in effect across the country, litigation is ongoing, and The Arc will continue our work to honor and protect the human and civil rights of all people with IDD.