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.

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People With Disabilities During COVID-19 Pandemic

Today, the U.S. Department of Health & Human Services Office for Civil Rights (OCR) announced the resolution of a federal complaint filed against Tennessee, one of nearly a dozen complaints filed by a coalition of national disability advocates – the Center for Public Representation, The Arc of the United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund and Samuel Bagenstos — challenging states’ plans for rationing medical care during the COVID-19 pandemic as discriminating against people with disabilities. Medical rationing policies have disproportionately impacted Black people with disabilities, who have higher rates of COVID-19 infection and hospitalization. Today’s resolution sets a national precedent, with OCR building off earlier resolutions of complaints regarding Alabama’s and Pennsylvania’s plans and weighing in for the first time on the discriminatory impact of a number of provisions common in many states’ rationing plans. 

The complaint against Tennessee, brought by the coalition of national disability advocates together with Tennessee advocates led by Disability Rights Tennessee and the Civil Rights Enforcement and Education Center (CREEC), alleged that Tennessee’s plan illegally excluded certain people with disabilities from accessing life-saving treatment like ventilators based on their disabilities and deprioritized others based on their disabilities.  In response to the complaint and engagement with OCR, Tennessee has revised its “Guidance for the Ethical Allocation of Scarce Resources During a Community-Wide Public Health Emergency” to comply with federal disability rights laws and ensure that people with disabilities are not discriminated against even when public health emergencies, such as the COVID-19 pandemic, necessitate the rationing of scarce medical resources.

The following are key precedent-setting changes in Tennessee’s policy to avoid discrimination against people with disabilities: 

  • No Categorical Exclusions Based on Disability or Resource Intensity:  An individual can no longer be excluded from medical treatment based solely on a diagnosed disability or the fact that an individual might require more time or resources to recover because they have a disability.  This is the first time OCR has addressed resource intensity as a factor.  Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence.
  • No Long-Term Survivability Considerations: Due to this resolution,Tennessee is now the first state to explicitly eliminate longer-term survivability as a consideration in treatment decisions, changing its Guidance to allow medical personnel to consider only “imminence of mortality.” Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.
  • Reasonable Modifications Required: Tennessee’s Guidance now requires hospitals to make reasonable modifications to the Sequential Organ Failure Assessment (SOFA)—the tool used to prioritize access to medical treatment—to avoid penalizing people with underlying conditions that are unrelated to their ability to benefit from treatment. This is the first time OCR has weighed in on modifications to assessment tools. It also requires hospitals and other long-term care facilities (such as nursing homes) to reasonably modify no-visitor policies when necessary to ensure equal access to care.
  • Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment. This is the first OCR resolution addressing this issue.  

“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation.  “We hope that states will revisit their policies in light of today’s resolution.” 

“This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”

In addition to filing complaints with OCR, the national disability organizations have created resources to assist to assist stakeholders across the country in evaluating and advocating for non-discriminatory medical rationing plans at Center for Public Representation and The Arc

For more information about today’s resolution, contact:

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-841-7562

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Martie Lafferty, Civil Rights Education and Enforcement Center

mlafferty@creeclaw.org or 615- 913-5099

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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.

Sibling Perspectives: Helping My Sibling With a Disability Navigate COVID-19

The COVID-19 pandemic continues to leave us all navigating a very uncertain and disruptive moment in our world. However, the pandemic has presented uniquely challenging experiences for people with intellectual and/or developmental disabilities (I/DD) and their family caregivers. 

Caitie Jones and Cameron Kell are members of The Arc’s National Sibling Council and share how they each have been able to support their sibling navigate this unprecedented crisis.

Caitie Jones’ brother Chris is 31 years old and lives in a group home in Alaska.

Chris has severe sleep apnea, which puts him in the high-risk population. Caitie has been unable to visit Chris—and the lack of communication from his service provider brought a lot of fear and anxiety about his health. Although Caitie was able to rely on regular updates from Chris himself, she and her family remained anxious about the level of safety precautions and the health statuses of residents and staff at the group home.

To better support Chris, Caitie requested a meeting with leadership at the group home to address challenges with the lack of communications. Caitie and her family now receive weekly updates from the group home and continue to stay in touch with Chris by leaving him gifts and activities so he can stay active safely. Caitie is also a resource to the group home staff by sending them information about activities they can do to keep residents active while practicing social distancing. Caitie also notes that it’s been important for her to stay informed about legislation related to COVID-19 and advocating for the inclusion of provisions that will support people with I/DD, caregivers, and disability support professionals.


Cameron Kell’s brother Nathan is 29 years old and lives in an apartment on his own in St. Louis.

Nathan works at a concession stand at the National Museum of Transportation and attends the local community college. After living on his own for nearly eight years, the pandemic has meant a life of less independence for Nathan. He was furloughed from his job at the museum and the support workers that typically helped Nathan at his apartment have not been available. Although Nathan can spend time with his family at the current family home, he feels stuck and as Cameron notes, “(Nathan) just wants to be at his own apartment.”

To better support Nathan, Cameron has been mindful about communicating with Nathan on a regular basis. Cameron sets aside time to talk to Nathan about the stress of the pandemic and to help him understand why there has been a dramatic shift in his daily routine. Since Cameron is a medical student at Creighton University, Nathan also looks to his brother as a resource about the importance of social distancing and hand washing. Cameron wants to make sure Nathan understands without scaring him and providing assurance that everything will be ok.


Visit thearc.org/covid to view COVID-19 information for people with disabilities, families, and service providers.

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

The Arc logo

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.