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.

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.

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

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 

 

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
Dozens of small people icons forming a map of the United States

The Census Is Here: Are You Ready to Be Counted?

/in , /by Pam Katz
Dozens of small people icons forming a map of the United States

Did you receive a letter from the census and are wondering what it is and what you need to do? In 2020, it is easier than ever to complete your census from home.

The census seeks to account for every individual living in the United States. But many people with disabilities are left out of the count—harmfully impacting funding, services, and supports. Making sure you and your community are counted in the 2020 Census is an easy and important way to advocate for people with disabilities. After reading this introduction to the census, head to our census page for more resources and information, including information about how group homes are being counted.

What is the census?

Every 10 years, everyone in the United States is counted through the census. This data impacts many things:

  • How much money state and local governments get;
  • Where that money goes, like Medicaid, housing vouchers, the Supplemental Nutrition Assistance Program (SNAP), and education programs; and
  • How many representatives each state gets in the House of Representatives.

Why does it matter?

When the government does not have an accurate count of who is living in communities, they do not know how much money the community needs. When there isn’t enough money, services and programs for people with disabilities can be cut.

When everyone is counted, our communities get their fair share of federal funding to help keep all people safe and healthy—something that even more important now as we navigate COVID-19. Health care, education, and emergency planning all depend on getting an accurate census count.

What types of questions does it ask?

They will ask a short list of questions about everyone in your household, including demographics like age, sex, and race.

How do I complete it?

Even with many self-isolating, it’s easy to complete. It takes just a few minutes to fill out and can be done safely right in the comfort of your home. You can fill out the census in three ways: online, over the phone, or by mail. First they will mail the forms, and later, census workers will visit households who have not yet responded.

For more information and free resources, visit thearc.org/census. Los recursos también son disponibles en español!

People with disabilities count—make sure you’re counted!

sunset view of the U.S. Capitol dome from a distance

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.

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.