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

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

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

The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

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

Here we are 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, 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 gear 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 should do:

  • COVID-19 is particularly dangerous in congregate settings, and too many people with disabilities are currently in those settings, or at risk of unnecessarily ending up in those settings if there are not enough supports for services at home and in the community. Congress should ensure that legislation includes funds ($10-$15 billion) to support delivery of safer home and community-based services AND funding to support the hiring and hazard pay for the community workforce.
  • COVID-19 is requiring heroic work from health care professionals from around the country. Those professionals include DSPs and home health workers who do not have the personal protective equipment that they need to keep themselves and the people with disabilities that they serve safe. This will lead to illness and death. Congress should ensure that DSPs and home health aides have the supplies they need.
  • COVID-19 is closing programs all over the country, leaving people with disabilities and their families scrambling to come up with alternate supports. In many cases family caregivers won’t be able to work so that they can provide those services and supports. Right now, the legislation passed will not cover paid leave or paid sick leave for family members, like me, who may need to miss work to provide care for adults with disabilities and aging family members.
  • The COVID-19 pandemic economic impact is causing Congress to consider cash payments to individuals. People with disabilities should receive an equal amount of stimulus as everyone else without it impacting their access to Medicaid and other social support programs with strict asset limits. Congress should also boost Social Security and Supplemental Security Income payments to ensure that people with disabilities have the resources to protect themselves.

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:

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

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@thearc.org

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

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

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

Close up of a microscope

Coronavirus Relief Bill: The Arc Fights for Disability Community

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’

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

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 (I/DD) 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 I/DD.

Close up of U.S. dollar bills

The Arc Strongly Opposes Administration’s Budget Proposal

Washington, D.C. – The Arc strongly opposes President Trump’s 2021 federal budget request announced this week that includes sweeping cuts to programs that are lifelines for people with intellectual and developmental disabilities (I/DD). The President’s budget proposal is a clear threat to people with I/DD who need and rely on programs like Medicaid and other social service safety nets for basic survival and life in the community. The budget proposal reaffirms that the Administration’s priorities are not aligned with the well-being of millions of people with I/DD in the U.S., including children and families seeking quality and fair education.

TOP THREATS TO PEOPLE WITH I/DD IN WHITE HOUSE BUDGET PROPOSAL:

  1. Cuts to Medicaid and Social Security – President Trump promised to protect these programs on the campaign trail in 2016, but once again he is proposing to cut them – this time by about $1 trillion over the next decade. Medicaid, the primary health insurance program for people with I/DD, would bear the brunt of this cut. The Administration proposes taking away health care from low-income working adults, a group that also includes many direct support workers for people with I/DD, and encourages states to select per capita caps or block grant models to fund Medicaid for fewer people, limit services and supports under the program, and reduce eligibility.
  2. Cuts to Other Important Programs – President Trump’s budget request sharply reduces, or even eliminates, several programs that improve the quality of life for people with I/DD, and help provide food and shelter:
    • Supplemental Nutrition Assistance Program (SNAP) or food stamps cut by nearly 30% over ten years.
    • Department of Housing and Urban Development cut by 15%, including zeroing out the Community Development Block Grant program and the National Housing Trust Fund, making it harder for people with I/DD to find affordable housing.
    • Developmental Disabilities Act programs are also on the President’s chopping block. His budget proposes cutting Projects of National Significance (PNS) by 92%. PNS provide grants, contracts, and agreements for projects that create opportunities for people with I/DD to participate in the community. The budget also requests cuts to State Councils on Developmental Disabilities by almost 30%. State Councils conduct advocacy and training and also promote the self-determination and inclusion of people with I/DD.
    • Community Services Block Grant and the Social Services Block Grant are eliminated in the budget proposal. Both provide grants to communities to fund a wide range of services, including resources for people with I/DD.

    Click here to see a listing of discretionary programs and their proposed percentage cuts.

  3. Discriminatory Education Programs – President Trump’s budget proposes a $5 billion school voucher program to support parents to choose any school for their children using public funding. But for students with disabilities, there is often no choice at all. Voucher programs allow schools to circumvent the Individuals with Disabilities Education Act (IDEA), forcing students with I/DD to forego the rights and protections they would have attending public school. Moreover, private schools are free to choose not to accept students with disabilities, or not to accommodate the disabilities of children they accept, which history has taught us is likely to occur.
  4. Left Out of Paid Leave– The Administration proposes a new benefit for states to provide at least six weeks of paid family leave to new mothers and fathers, including adoptive parents. It leaves out the vast majority of people who take leave in the U.S. for family caregiving and medical reasons, including people with disabilities who need leave to address their own health and people who need leave to care for a family member with a disability or illness. We need paid leave policies that are inclusive of the needs of people with disabilities and their family members.
  5. Extending Tax Cuts – The President’s budget would permanently extend the 2017 tax cuts and the challenges they have created for people with I/DD. Under current law, most individual income tax and estate tax provisions from the 2017 Tax Cuts and Jobs Act are scheduled to expire after 2025. Since the law passed, the bulk of the tax savings has gone to the wealthiest 10% of Americans and, rather than paying for themselves, the tax cuts have blown a huge hole in the revenue side of the federal budget, contributing to a projected $1 trillion deficit this fiscal year, and prompted calls to cut Medicaid, Social Security, and other programs vital to people with I/DD.

“President Trump’s ‘Budget for America’s Future’ attempts to create an especially challenging future for Americans with intellectual and developmental disabilities. As we have seen in his past budgets, proposed cuts to spending fall disproportionately on people with disabilities who depend on a number of federal programs for their health and well-being and to stay engaged in their communities. We ask that the President and leaders in Washington devise fiscal plans that help make life in America better for people with I/DD, not worse,” said Peter Berns, CEO, The Arc.

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Proposed Medicaid Restructuring Will Harm Disability Community

Washington, D.C. – Today, the Centers for Medicare and Medicaid Services announced guidance to states allowing them to pursue drastic changes in how they administer Medicaid to many program recipients, including people with disabilities, family members, direct support professionals, and other allies of people with disabilities. The guidance encourages states to cap their federal funding for the Affordable Care Act’s (ACA) Medicaid expansion and weaken federal protections for the low-income adults it covers.

The program would block grant or put a per person cap on the federal government’s payment to states with a pre-set formula that may not consider growth in cost or need. A per capita cap would limit the amount spent per enrollee in the program. Both are now options for states to pursue that are harmful to the structure and funding levels of the Medicaid program.

States would be allowed to restrict eligibility, provide limited health care benefits, reduce access to prescription drugs, impose burdensome work requirements, and make other changes that are detrimental to Medicaid beneficiaries.

“Medicaid equals access to health and wellbeing for millions of people, including people with disabilities, their family members, and their direct support professionals. This decision is a blow to the entire disability community. It also begs the question – once they block grant one part of the program, what’s stopping them from moving on to the home and community-based services that make independence and community possible for people with intellectual and developmental disabilities?” said Julie Ward, Senior Executive Officer for Public Policy, The Arc.

This guidance does not appear to directly impact the portion of the Medicaid program that funds home and community-based services for people with intellectual and developmental disabilities (I/DD). However, people with disabilities, including people with I/DD, are part of the Medicaid expansion population and could be directly impacted. In addition, the restructuring of the program will impact all aspects of the Medicaid program if states are not able to operate their programs under the cap.  States would be responsible for any shortfalls in funding, and to make up the difference states may cut eligibility, limit services, reduce provider rates, or other spending reductions that hurt beneficiaries.

The guidance allows states to operate the Medicaid program with limited federal oversight and few beneficiary protections. If harmful or discriminatory policies are implemented by the state, there are few avenues to address the issue. The limited public review and comment ensures that people with disabilities, their family members, providers and other advocates have little influence over how policies are developed and whether they will meet their needs.

“This effort is a major change to the Medicaid program as we know it, and we are very concerned that it’s just the beginning of bad news for Medicaid in 2020,” said Ward.

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

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

Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

Supreme Court Lifts Stay on Public Charge Rule: Implementation Will Have Chilling Impact on People with Disabilities

Washington, D.C. – The Arc is deeply troubled by the decision by the U.S. Supreme Court to grant the Administration’s request for a stay of the nationwide injunction on the discriminatory public charge rule, allowing the implementation of the rule to move forward. The public charge rule will have a dire impact on people with intellectual and developmental disabilities (I/DD) by allowing the federal government to deny admission into the U.S. based on a person’s disability and the use of vital programs like Medicaid, the Supplemental Nutrition Assistance Program (SNAP), housing assistance, and other important benefits. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status.

The policy unfairly restructures immigration in a way that is detrimental to people based on their disability. For immigrants who are already in the United States legally and use public benefits, or have at one time used public benefits, or are deemed likely to someday rely on public benefits, the new rule could impact their immigration process. Many people with disabilities will, solely because of their disability, be kept out. And because of the surrounding fear and confusion the rule will cause, the harm will extend much further.

“This rule essentially tells the world, as an immigrant with disabilities, you are not welcome here. If our country perceives you to be in need of access to vital supports, you will be considered an inadmissible ‘public charge.’ Non-citizens with any type of disability should have a fair opportunity to enter and live legally in the U.S., and we urge Congress to intervene to stop this reckless violation of the civil rights of immigrants with disabilities and their families that several of the lower courts have recognized as such,” said Peter Berns, CEO, The Arc.

Research has already shown harmful consequences of the August announcement of the new regulations. The Kaiser Family Foundation found that nearly half of community health centers report that many immigrant families—fearing deportation or other negative consequences—declined to enroll in Medicaid in the past year, and nearly a third of centers say some patients dropped or decided not to renew their coverage. Kaiser also found that more than a third of health centers report that some immigrant parents were declining to enroll their children in Medicaid over the past year, while nearly 30 percent reported families dropping or not renewing coverage for their children.

The Arc and a large coalition of national disability advocacy groups have 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.

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

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