During a Crisis and Beyond, Congress Must Provide Paid Leave to Caregivers of People with Disabilities

By Peter Berns and Debra L. Ness

Before this pandemic, far too many people with disabilities and their families were on shaky financial ground, with little to no savings for a crisis. Workers with disabilities and workers whose families include people with disabilities were fearful of the consequences to their job if they faced a significant illness. Let’s be honest – before COVID-19 became a constant in our lives, disability equaled inequity in many aspects of American life.

And here we are, several months into a worldwide pandemic, yet Congress has failed to address the critical needs of people with disabilities and their families, especially when it comes to access to paid leave.

Access to paid sick days and paid leave are key to our country’s health and well-being, especially during this time of crisis. The coronavirus relief packages that have been signed into law fail to provide paid leave for millions of family caregivers of people with disabilities. Many employers, if they provide time off, will not be eligible for the tax credits to cover the costs of paid sick days and expansions to the 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 disabilities, often at the expense of their job.

Brandi and Caiden

Take Brandi Wetherald. Brandi’s 18-year-old son, Caiden, has disabilities – including autism and a chromosomal disorder. Brandi, a single mother, has always struggled to be there for Caiden without paid leave and has lost jobs because she has taken time off to be a caregiver and fight for her son.

“I was looking for better. I was looking for more understanding. I was looking for what would serve him best and people just weren’t getting it,” Brandi said.

In her early 40s, she had to drop out of college to make sure that Caiden was getting the support he needed, putting off her goal of furthering her education and opportunities. But in August 2019, she started taking classes again, and she and Caiden are hoping to graduate together next year.

Those plans feel like they’re slipping away. Caiden has lost almost all of the services he usually receives in school due to the disruption caused by this pandemic. The isolation and loss of routine is affecting Caiden’s mental health and Brandi is trying to keep both of them on track to graduate. But Brandi’s remaining paid sick time is in the negative. She had the flu last year and Caiden was hospitalized. And now she’s running out of vacation days. So while Brandi can work from home, she doesn’t have the time she needs to provide the supports that Caiden was getting in school to reach his goals and to be present for him.

“It is overwhelming,” said Brandi, adding that Caiden needs her now more than ever. “When you talk about kids who are isolated already and don’t have a large network of friends, they are even more isolated during this pandemic.” Brandi fears what’s next because she is unable to invest enough time in Caiden or her job. “It has been terrible because there have just been some days where I haven’t been able to get my work done and I worry about that,” she said.

This reality is all-too-familiar for people with disabilities and their families, who experience every day the hardship that can result from a lack of paid leave for caregivers. The fact is 1 in 4 adults in the United States lives with a disability. And more than 65 million people in the United States are providing care for family members who are ill, aged or living with a disability – including parents, grandparents, siblings and others.

Almost all caregivers for people with disabilities have had to go into work late, leave early, or take time off during the day to support their family members. Many have been forced to take a leave of absence, retire early, or give up work entirely to provide care. This is because only 19 percent of all workers have access to paid family leave through an employer. This imposes a huge economic burden on families: it’s estimated that workers lose $22.5 billion in wages annually when they have to take leave without pay to care for a family member, income they cannot afford to lose. And we can expect this to get worse as additional supports families rely on, such as day programs, daycare centers, and school services, face closures due to outbreaks.

The struggles of families like Brandi and Caiden were the focus of two hearings in the U.S. House of Representatives on paid family and medical leave earlier this year. And Congress did pass limited provisions in March, providing some caregivers with 10 days of emergency paid sick time and an additional 10 weeks of paid family leave.

But they didn’t go far enough. Congress didn’t cover millions of workers like Brandi. The new emergency law left out workers for employers with more than 500 employees and limits access to paid family leave to only parents whose child’s school or child care is closed. This emergency paid leave needs to be expanded to cover all family caregivers and their reasons for leave. And then we have to go further – we need to ensure that family caregivers are protected by a permanent, comprehensive, inclusive, national paid family and medical leave program that would support all of our families, including families with members with disabilities. It would guarantee that workers are not just entitled to time, but that they have the income and job security needed to take that time. So that Brandi can work and be there to support Caiden when he needs her. “I owe it to him. He’s my purpose,” said Brandi.

By helping caregivers stay in the workforce and improve financial stability, paid leave helps businesses reduce the high costs of turnover and supports the economy in our local communities. The evidence is overwhelming that paid leave is not just good for families, it also benefits businesses and our economy.  

It’s past time for Congress to prioritize the needs of the people with disabilities and their families—both in emergency legislation in response to the pandemic and in a permanent, national solution. Brandi, Caiden, and millions of other Americans need the stability and security of a system set up to ensure that all families and caregivers have the ability to care for themselves and loved ones without risking their job, their health, or their family’s security.

Peter Berns is the Chief Executive Officer of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (I/DD), with 600 state and local chapters across the country.

Debra L. Ness is president of the National Partnership for Women & Families, a nonprofit, nonpartisan organization that works to achieve equality for all women.

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The Arc Condemns the Department of Health and Human Services Releasing a Final Rule Weakening the Nondiscrimination Protections of the Affordable Care Act

This week, the U.S. Department of Health and Human Services (HHS) will issue a final rule that strips important protections of the Affordable Care Act (ACA) and limits access to health care coverage. The Arc is deeply troubled that HHS has chosen to issue a final rule weakening the nondiscrimination protections in health care, particularly during an international public health crisis and at a crucial crossroads for civil rights in this country.

The ACA’s Section 1557 prohibits discrimination in health care programs based on race, color, national origin, language proficiency, sex, sex stereotypes, gender identity, age, or disability. The protections of Section 1557 have never been more important than they are now. This rule narrows the application of all of the protections under Sec. 1557 by exempting certain types of activities and insurance coverage from the rule as a whole. In addition to other troubling changes, the final 1557 rule also specifically dismantles protections for people with limited English proficiency and people seeking reproductive and sexual health care.

“We cannot tolerate a public policy that permits discrimination based on disability, ethnicity, race, sex, gender identity and expression and sexual orientation, or other protected status.

It is unconscionable that the Administration is rolling back protections of the ACA and access to coverage in the midst of a pandemic. People with disabilities are already fighting discrimination in the health care system and extreme disparity as a result of COVID-19. HHS is taking steps that will deepen discrimination and create greater obstacles for people in our society who are marginalized – and at a time of historical hardship. It is unacceptable,” said Peter Berns, CEO, The Arc. “The Administration is once again attempting to destroy the promises of the ACA. We will continue our ongoing fight to defend it in the courts and through our advocacy on the ground.”

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

State and National Groups File Federal Complaint Against Nebraska for Inaccessibility of COVID-19 Testing Program

Lincoln, NE – Today, The Arc of the United States, Disability Rights Nebraska, and Center for Public Representation filed a complaint with the U.S. Department of Health and Human Services’ Office for Civil Rights over the State of Nebraska’s ongoing failure to provide access for Nebraskans with disabilities to TestNebraska. The State’s COVID-19 testing program currently requires the ability to access and use the internet and then the ability to drive to a testing site. TestNebraska began operations on May 4, 2020 but as of today’s filing, no plan has been made for Nebraskans who do not have the ability to drive or use the internet due to a disability.

The complaint charges that TestNebraska discriminates by leaving behind Nebraskans with disabilities in violation of Title II of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act (Section 504).

“People with intellectual and developmental disabilities are at higher risk of contracting COVID-19 and at a higher risk of dying from it than people without disabilities. As Nebraska and other states put into place plans for testing, it is imperative that the civil rights of people with disabilities be at the forefront. People with disabilities must have equal access to health care under federal law and by no means, should they be left behind during a life or death public health crisis,” said Peter Berns, CEO, The Arc.

“For months, Disability Rights Nebraska and other advocates have been calling for the state to create a plan for Nebraskans who cannot drive,” said Eric Evans, CEO of Disability Rights Nebraska. “We were very disheartened to hear Governor Ricketts’ recent comment that TestNebraska was designed for DHHSS’ ‘regular customers.’ Perhaps this is merely a poor choice of words on the Governor’s part, but it certainly suggests that people with disabilities are second-class citizens in this case and we have fought against this perception for decades. All Nebraska citizens deserve equal access to this important and potentially life-saving program. Unfortunately, it appears we have to point out that people with disabilities are ‘regular people.’”

Alison Barkoff, Director of Advocacy for the Center for Public Representation, said “COVID-19 is disproportionately affecting people with disabilities nationwide. This is especially true for people living in congregate settings like nursing homes and group homes, where most residents lack transportation and cannot drive themselves to a mobile testing site. We hope this complaint ensures Nebraska finally makes its testing program accessible to all Nebraskans, especially those who are most at-risk.”

The complaint outlines examples of Nebraskans unable to access TestNebraska, including Nebraskans who are blind, who do not drive due to a developmental disability, and who do not drive due to age related disabilities. “Since the beginning of the pandemic, we’ve been interviewing Nebraskans across the state who have been left behind without any plan,” said Evans. “Other states have modified their testing to include people with disabilities. Nebraska has waited long enough and we hope today’s filing pushes the state to finally start protecting everyone from COVID-19.”

The filing was joined by The Arc of Nebraska, Brain Injury Alliance, Paralyzed Veterans of America Great Plains Chapter, ADAPT NE, People First of Nebraska, Nebraska Statewide Independent Living Council, and American Council of the Blind of Nebraska.

Press Contacts:

Name:  Kristin Wright

Title:    Senior Communications Manager, The Arc

Phone:  202-617-3271

Email:  wright@thearc.org

 

Name:  Amy Miller

Title:    Staff Attorney, Disability Rights Nebraska

Phone:  402-210-9098

Email:  amy@drne.org

 

Name:  Alison Barkoff

Title:    Director of Advocacy, Center for Public Representation

Phone:  202-854-1270

Email:  abarkoff@cpr-us.org

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Protecting Medicaid: Why the Oklahoma Waiver Proposal Is a Threat

Webinar: Protect Medicaid: Learn More About Why the Oklahoma Waiver Proposal Is a ThreatWhat is happening in Oklahoma?

Oklahoma is proposing to be the first state to implement a block grant or per capita cap based on the Center for Medicaid Services’ (CMS) recent guidance. The state planned to expand Medicaid by submitting a proposal to CMS, however the State legislature has not funded the expansion. There is a vote in Oklahoma on June 30 on whether or not to expand Medicaid so the state process is unclear. However, CMS is considering their proposal and is accepting comments on its contents. No matter what happens in the state, CMS will make a decision on whether to approve the state’s block grant/per capita cap proposal following the comment period that closes June 27.

TAKE ACTION NOW to tell the federal government: No cuts to Medicaid in Oklahoma or anywhere!

Why should advocates be concerned?

One in five people rely on Medicaid for health care. Over 10 million people with disabilities rely on it for health care services and to live independently. Additionally, Medicaid is critical to fighting the impacts of the global health pandemic. As a result of the pandemic, states will face budget crises, leaving Medicaid in great peril during a time when Medicaid should be strengthened to help more people access health care.

Instead, CMS’ guidance and Oklahoma’s proposal represent a drastic restructuring of Medicaid financing that would weaken the program. If approved, CMS would be allowing a per capita cap, a permanent restructuring of the Medicaid program in Oklahoma.

Approval of the waiver would set a dangerous precedent by allowing a potentially unlawful financing system to move forward that could cause great harm to people with disabilities and chronic health conditions. If approved, other states would be interested in advancing similar plans that would cut or cap Medicaid funding and reduce access to health care.

Approval of the waiver also signals to other states that they could similarly submit incomplete and vague proposals that do not fully explain how the state would operationalize the waiver including definitions, processes, and explanations. The lack of information makes it impossible to fully analyze the impact on people with disabilities, families, service providers and other interested stakeholders.

Oklahoma’s proposed waiver includes work requirements, increased premiums, and other harmful provisions that would reduce coverage and access to care. The proposal contains many of the same proposals that the courts have repeatedly found illegal since 2018. Below is a brief description of the harmful provisions of the Oklahoma waiver proposal.

Work Requirements

Oklahoma’s proposed plan would require enrollees to complete at least 80 hours of work or work-related activities per month to maintain Medicaid coverage. Enrollees who do not complete and report their work hours monthly would lose their coverage. In addition, individuals who fail to complete work requirements could not re-enroll in the Medicaid program unless they complete the work requirements or met one of the stated exemptions, meaning many people would not be able to re-enroll.

The proposal includes an exemption for people with disabilities but does not provide information about how the state plans to implement the exemption process or what the person would need to do to claim the exemption.

Per-Capita Caps

The waiver proposal provides almost no information about the funding overhaul the State seeks. The proposal does not explain how the transformation will affect stakeholders from enrollees to health care providers. There is an no explanation of what happens if Medicaid spending exceeds the federal caps and states must make up the difference.

Regardless of the lack of details, Oklahoma’s request for a per capita cap is potentially harmful. The Social Security Act constrains what provisions of the Medicaid Act states can seek to waive.1 It only permits waivers of sections of the Medicaid Act included in 42 U.S.C. § 1396a. Medicaid’s funding mechanism is not included in this section. Thus, the very structure of the Social Security Act makes it very clear that Congress did not grant CMS the authority to authorize a per capita cap or block grant funding.

Non-Emergency Medical Transportation

Oklahoma proposes to exclude coverage of non-emergency medical transportation (NEMT) for the Medicaid expansion population. NEMT is essential for many individuals enrolled in the Medicaid program including people with disabilities and chronic health conditions. Transportation barriers pose a significant problem for many low-income individuals and families to access care to maintain function and manage health conditions.  While the state assures that exemptions can be made based on an individualized assessment, it creates a barrier to accessing this critical service.

Prescription Drug Coverage

Oklahoma reserves the right to limit the list of preferred drugs and medications in the future and asks for flexibility to make future changes. The waiver proposal did not explain what process it would use to make changes, gather input from stakeholders or protect access to necessary medications.

Premiums

Oklahoma proposes to impose premiums on Medicaid enrollees in the expansion population. Individuals with household income that falls d below 100% of the Federal Poverty Level (FPL) would pay $5 every month ($7.50 for families). Individuals with household income from 100-133% FPL would pay $10 a month. ($15 for families). Coverage would not begin until an individual has paid the first premium. Individuals who successfully enroll in coverage but fail to pay subsequent premiums will lose their Medicaid coverage after a ninety-day grace period.

Heightened Copayments for Non-Emergency Use of the Emergency Room

Oklahoma also proposes to implement copayments for various types of health services, including non-emergency use of the Emergency Department. Initially, this would be $8. The state wants to be able to increase the copay in the future. Charging individuals a heightened copay for use of the emergency department is not permissible under the Medicaid statute.

Retroactive Coverage

Oklahoma proposes eliminating retroactive coverage for enrollees in the Medicaid expansion population. This would likely result in medical bills that would be difficult for beneficiaries to afford. Retroactive coverage also helps ensure the financial stability of health care providers and reduces uncompensated hospital care.

Early and Periodic Screening, Diagnostic and Treatment Program (EPSDT)

Oklahoma proposes to eliminate EPSDT services for nineteen and twenty year olds in the expansion population. Congress included EPSDT in the Medicaid program to provide comprehensive coverage of screening, diagnosis and treatment for individuals under the age of 21.

Please join The Arc for a live webinar on Monday, June 22 at 4:00 p.m. ET.
“Protect Medicaid: Learn More About Why the Oklahoma Waiver Proposal Is a Threat”

Register Here

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Demands Full Pardon for Neli Latson, a Young Black Man With Autism, to Rectify Injustice

WASHINGTON – As our country faces a critical reckoning of the systemic racism and racial injustice that have plagued our society and systems for generations, The Arc is seeking long overdue legal and moral justice for a young Black man with disabilities who has suffered irreparable harm.

Today, we call on Virginia Governor Ralph Northam to #FreeNeli and immediately grant Reginald “Neli” Latson a full pardon. Latson is Black and has autism and intellectual disability, identities which have led to his continued persecution in the criminal justice system.

“At this critical turning point in history, we believe the Commonwealth of Virginia must do more to hold itself morally responsible and accountable in the case of Neli Latson and the continuing injustice of his prosecution and horrifying mistreatment in the criminal justice system. We urge Governor Northam to issue Mr. Latson a full pardon and an apology on behalf of the Commonwealth,” said Peter Berns, CEO, The Arc.

Sadly, Latson’s case represents the discrimination people with intellectual and developmental disabilities (I/DD) experience in the criminal justice system and how that discrimination is compounded for Black people with I/DD. Latson’s nightmare began in 2010 when someone called police reporting a “suspicious” Black male possibly with a gun outside of a public library in Stafford County, Virginia, outside of Washington. Latson, at the time an 18-year-old special education student who had committed no crime and was not carrying a gun or weapon, was just waiting for the library to open. Latson was confronted by a Stafford County deputy, who quickly found that he was unarmed. Latson tried to walk away but was grabbed by the deputy several times. Latson reacted with a fight-or-flight response, a response even more common for people with autism, and in the resulting altercation, both Latson and the Deputy were hurt. Latson was later convicted of assaulting the deputy, setting in motion the next troubling decade of his young life.

While behind bars in Virginia, Latson was subjected to mistreatment and abuse for behaviors connected to his disability, including long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end. Latson was granted a conditional pardon by then Governor Terry McAuliffe in 2015. It allowed him to move from prison to less restrictive facilities, but the conditions of that pardon, in effect until 2025, mean that Latson remains under supervision by criminal justice authorities and experiences the constant threat of reincarceration. Any misinterpreted behavior by Latson, who also now lives with mental health disabilities due to his traumatic experiences with law enforcement and correctional officers, could send the 28-year-old back to prison, resetting the cruel cycle.

It’s estimated that one third to half of all people in the U.S. killed by police have a disability – the majority of these are people of color.

As today’s national conversation intensifies over the clear need for criminal justice reform and an end to the murders of Black people at the hands of police, Neli Latson recently wrote to The Washington Post: “I hope there will finally be change and there will be equality for black people.” He also shared: “I understand how fortunate I am to be alive.”

Governor Northam has an opportunity to remove a major obstacle from Neli Latson’s path to healing. The Arc and The Arc of Virginia, alongside Latson’s attorneys, have been fighting for justice for Latson since 2011 and will not stop until he is free.

“Mr. Latson is a human being. He was criminalized for the color of his skin and his disability. He deserves justice. Governor Northam, #FreeNeli now,” said Berns.

Federal Civil Rights Resolution Makes Clear Hospital Visitor Policies Nationwide Must Accommodate Patients With Disabilities During COVID-19 Pandemic

WASHINGTON, D.C. – Today, in response to the first federal complaint challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.

Strict no-visitor policies put in place at hospitals have prevented patients with disabilities from safely receiving support from family members or staff necessary for them to effectively communicate with medical personnel or otherwise receive equal access to medical treatment. No-visitor policies have disproportionately impacted Black people with disabilities, who have higher rates of infection and hospitalization. Accommodations to these policies are required by federal civil rights laws.  

The complaint was filed against the State of Connecticut by national disability organizations The Arc of the United States, Center for Public Representation, and CommunicationFIRST, together with Connecticut-based organizations Disability Rights Connecticut, The Arc of Connecticut and Independence Northwest: Center for Independent Living of Northwest CT. The groups alleged that Connecticut’s COVID-19 no-visitor policy denied people with disabilities equal access to medical care and effective communication, deprived them of their right to make informed decisions and provide informed consent, and resulted in harms such as unnecessary physical and chemical restraints. The groups filed a separate complaint against Hartford Hospital  regarding its discriminatory treatment of 73-year-old “Patient G.S.,” who has speech and short-term memory disabilities but was not allowed access to in-person supports necessary for her to communicate, which was also recently resolved and publicly announced today.

“We are thrilled that this resolution will help prevent other patients around the country from having to experience the discrimination, physical pain, and emotional harm endured by Patient G.S.,” said Tauna Szymanski, Executive Director of CommunicationFIRST. “Ensuring states and hospitals safely balance public health concerns with the obligation to ensure patients with disabilities can communicate effectively has been a top priority for CommunicationFIRST during the pandemic.”

“Today’s resolution sets a national precedent for how states and hospitals can ensure their policies comply with federal disability laws,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “The COVID-19 crisis has laid bare the discrimination that people with disabilities face in accessing healthcare. We appreciate OCR’s leadership and collaboration with us to ensure people with disabilities can access the care they need.”

Highlights from the hospital policy announced by OCR and Connecticut include that it:

  • Requires all hospitals and other health care facilities to allow designated persons (family members, staff, or others) to support any disabled patient that may need such support;
  • Requires hospitals to provide available personal protective equipment (PPE) to support persons to keep them safe;
  • Includes procedures for screening support persons for COVID-19 symptoms and for supporters to safely take breaks and leave and re-enter the hospital; and
  • Encourages hospitals to mitigate the risk associated with support persons supporting COVID-19-positive patients.

“Many with intellectual and developmental disabilities are being deprived of basic rights during the COVID-19 pandemic, and we have already seen dire consequences from this discriminatory treatment. We thank OCR for today’s resolution and will continue to fight for the health and well-being of all people with disabilities,” said Peter Berns, CEO, The Arc.

The national disability rights groups have created resources to assist stakeholders across the country in evaluating and advocating for non-discriminatory hospital visitor policies, at The Arc; Center for Public Representation; and CommunicationFIRST

For more information, complainants’ counsel can be reached at: 

Alison Barkoff, Center for Public Representation

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

Tauna Szymanski, CommunicationFIRST

tszymanski@communicationfirst.org or 202-556-0573

Shira Wakschlag, The Arc of the United States

wakschlag@thearc.org or 202-534-3708

Cathy Cushman, Disability Rights Connecticut

catherine.cushman@disrightsct.org or 860-469-4461

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The Arc: The Ongoing Violence Against Black and Brown Communities in Our Country Is Unacceptable

The Arc released the following statement on the need for swift and substantial action in our society and from our nation’s leaders to dismantle racism, end discrimination, and to honor, protect, and enforce the civil and human rights of all people.

“The ongoing violence and police brutality against Black and Brown people in our country is unacceptable. We stand in solidarity with every person and community that is appalled by the homicide of George Floyd, and so many others before him. We stand in solidarity too with those who are taking action against the systemic racism that underlies this behavior. Racist attitudes and behavior should have no place in America.

“Tragically, the historical and everyday reality is that the lives and humanity of people of color, and members of other marginalized communities, are too often not valued and respected. The Arc renews its own commitment to social justice and the dismantling of the systems of oppression and discrimination that further this violence and neglect.

“We all must step up and speak out, including our nation’s leaders, to uphold the rights of communities of color to be free from over policing, police brutality, misconduct, harassment, and racism. To be silent is to be complicit,” said Peter Berns, CEO, The Arc.  

The Arc logo

The Arc Joins Supreme Court Amicus Brief Urging Court to Uphold Affordable Care Act, Congressional Protections for People With Disabilities

WASHINGTON – The Arc is once again fighting to defend the Affordable Care Act (ACA) from repeated attacks in the courts. This time, during a global pandemic that has underscored the importance of the ACA and the need to preserve all of its provisions for the many people with intellectual and developmental disabilities who rely on the law for access to health care.

The Arc, with a coalition of disability and civil rights organizations, has joined an amicus brief filed in the U.S. Supreme Court today in the case California v. Texas. We are urging the court to uphold the ACA in its entirety. However, if the court should decide to invalidate the ACA’s minimum-coverage provision, it is critical that the rest of the ACA’s protections remain in place. A declaration that the ACA as a whole is unconstitutional would have devastating impacts on people with disabilities generally and particularly during the COVID-19 pandemic and beyond, since they face higher risk of COVID-19 infection and disproportionately poorer long-term health outcomes from the disease.

“Removing the ACA’s Congressionally-enacted protections would reverse the progress that people with disabilities have realized since the ACA became law. We would return those with disabilities to a cruel reality in which affordable insurance lacks the breadth and depth of coverage for vital services or is denied out right. During this unprecedented pandemic, we simply cannot afford to go back to a time when people with disabilities and their families lived in fear of losing the coverage they had or went without access to the health care services that made life in the community possible,” said Peter Berns, CEO, The Arc.

The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not be able to afford health insurance without the ACA, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

The amicus brief outlines the substantial benefits that Congress intentionally extended to people with disabilities in enacting the ACA and argues that the breadth of these benefits, and their critical importance to the lives of millions of people with disabilities should weigh heavily in the Court’s analysis. The ACA has been essential to overcoming the disproportionate impact that America’s health care crisis, even before COVID-19, has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite relying on health care services more than those without disabilities.

The ACA has provided long-denied access to health insurance and health care and explicitly prohibits discrimination in access to care. It has allowed people with disabilities to obtain health care and supports that are critical to their health and independence. The ACA protects against coverage limitations based on preexisting conditions or lifetime limits and guarantees coverage of services for psychiatric and developmental disabilities. It also provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions.

“The Arc has fought vigorously to protect the ACA. In enacting the law, Congress intentionally extended protections to people with disabilities, and would not want to see these protections undermined, especially now, given all we have at stake in this pandemic,” said Berns.

Nineteen national disability and civil rights organizations joined the amicus brief, represented by the law firms Dentons and Baker Hostetler and the Bazelon Center for Mental Health Law, Disability Rights Education and Defense Fund, and the American Civil Liberties Union. The Arc previously joined an amicus brief in this case before the Fifth Circuit and has fought against discrimination in medical care—prohibited by the ACA—since the COVID-19 pandemic began.

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.

man in hospital bed comforted by friend as doctor looks on

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

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 I/DD, have lost their lives to this vicious virus.

People with I/DD 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 I/DD 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 I/DD 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

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