A woman and her son standing close together. The woman has short brown hair, glasses, and a pink shirt on. The young man has a blue polo shirt and a green hat. They are standing in front of a brick building.

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

/in , , , /by Pam Katz

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 (IDD), 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

/in , , /by Pam Katz

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

Three people standing outside at a wedding. On the left is a bridesmaid wearing a strapless purple dress and holding a bouquet of yellow and purple flowers. In the middle is a man with Down syndrome. he is wearing grey pants with blue suspenders, a light blue short sleeve button up shirt and is wearing a purple flower pinned to his shirt. On the right is the bride, dressed in a white, lacey, bridal gown and holding a bouque of purple and yellow flowers. They are standing on gravel and behind them are stairs leading up to a stone and log cabin.

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

/in , /by Pam Katz

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 (IDD) 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 IDD, 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.

The United States Capitol Building

House Passes COVID-19 Relief Bill That Helps People With Disabilities, Families, and Support Staff; Now the Senate Must Act

/in , , , , /by The Arc

Today, the House of Representatives passed a COVID-19 relief bill that finally includes many elements that will provide critical assistance to people with disabilities, their families and the direct support workforce during this pandemic.

“This is an acute crisis for people with disabilities, their families, and support staff across the country. And this response legislation finally addresses many of our critical problems and dangers due to the pandemic. Now, we need the Senate to act quickly. Until they do, the lives of people with disabilities, their families, and support staff will continue to be precariously on the edge of disaster,” said Peter Berns, CEO, The Arc.

The House-passed bill includes these provisions reflecting our highest priorities:

Critical new dedicated funds for Medicaid home and community-based services, personal protective equipment (PPE) and workforce. As we have seen in nursing homes and institutions for people with disabilities, COVID-19 is particularly dangerous in congregate settings. To address the needs of people with intellectual and developmental disabilities (IDD) who need care at home and in their communities, the House has included funding to sustain and expand home and community-based services while also minimizing the risk of people with disabilities being forced into large dangerous settings. States need these additional, new and dedicated dollars to expand access to services for those on waiting lists, and for providers to use the resources to hire enough workers, purchase much-needed PPE, and provide wage increases and overtime pay to the workforce.

Paid time off for family caregivers, including grandparents and siblings, of people with disabilities.  As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress passed limited paid time off in March, but this bill ensures that all family members, including siblings and grandparents, can be there for their loved ones with disabilities.

Stability of benefits for low-income adults and kids with disabilities despite employment changes. The bill ensures that low-income adults and children with disabilities have the resources and support they need from programs such as SNAP for food assistance and Supplemental Security Income, or SSI, regardless of changes to their or parental employment related to COVID-19.

Funds for essential personnel, including direct support professionals, to cover childcare expenses and care for adult loved ones with disabilities at home. This $850 million in funding is critical for this workforce, which is juggling supporting those with disabilities and caring for their own families while their usual childcare options aren’t available.

Expanded access to health care for the uninsured, by creating a new enrollment period for health insurance in the Affordable Care Act exchanges and subsidies for people who lose employer provided health care to be able to afford continuing coverage. The bill also eliminates cost sharing for Medicaid beneficiaries, Medicare Parts A and B, and group and individual health plans for COVID-19 treatment and vaccines during this public health emergency.

“This virus is upending life as we know it, and until we get additional resources into our service system, paid time off for all caregivers, and other relief from the pressure of this crisis, we won’t stop advocating until it’s all addressed. We encourage the Senate to move ahead with this COVID-19 relief package,” said Berns.

Please join us by taking action.
Tell Congress that people with disabilities, their families, and direct support professionals need to be included in the next COVID-19 relief bill.
man in hospital bed comforted by friend as doctor looks on

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

/in , , /by Pam Katz

By Nicole Jorwic, Senior Director of Public Policy

At an institution in Denton, Texas, where 400 people with disabilities live, 54 have COVID-19, and 50 employees are infected.

At a state run facility in Danvers, Massachusetts, 40% of residents are infected, plus 55 nurses who work at the facility.

In Illinois, two institutions are experiencing such extreme outbreaks that the National Guard is being called in to help with temperature checks.

And in New York, Maryland, Washington State, Georgia, and most likely in every state – people with intellectual and developmental disabilities, or IDD, have lost their lives to this vicious virus.

People with IDD face grave danger in the face of the COVID-19 pandemic – with underlying health conditions, many are at a higher risk. Then why aren’t you hearing about it? Nursing homes and cruise ships, overflowing emergency rooms and makeshift hospitals set up in Central Park fill our television screens and headlines.  Why are people with disabilities far too often ignored when we are focusing on who is impacted by this crisis? Who is counting – and revealing – the dangers facing people with intellectual and developmental disabilities, particularly those living in large, congregate settings?

You see, in 2020, in 36 states, tens of thousands of people with IDD live in institutions. These settings are called many things, like Intermediate Care Facilities for People with Intellectual and Developmental Disabilities (ICFs), “state schools,” “state operated developmental centers” or “state hospitals.” And, thousands of people with IDD live in nursing homes too.

COVID-19 is running through these large facilities in every state like a wildfire, but where is the outrage?  Does the general public believe that these places shut down decades ago? Or is it because these institutions are not publicly reporting what is happening to the residents and staff?

Information about the tremendous risks posed by this pandemic to people with disabilities, whether they live in an institution or nursing homes, must be captured. The Centers for Medicare and Medicaid Services just announced that they are requiring nursing homes to report cases and deaths from COVID-19 to the Federal government. But that requirement was not extended to ICFs or institutions for people with disabilities, nor does it require data from nursing homes that tracks whether or not a sick or deceased individual had a disability. CMS must extend these same requirements to all institutional settings, including ICFs, institutions, and nursing homes, and require that people with disabilities are specifically tracked in this data collection.

For my entire life, the disability community has been fighting to complete what began decades ago with the families and individuals with disabilities fighting to get people out of institutions. We must create the capacity for a home and community-based service (HCBS) delivery system to serve all who need supports. We must build up the workforce needed to provide those services and create the flexible supports that people need so that people with disabilities can be safe in their homes and communities.    

We will get there by investing in HCBS. Representative Debbie Dingell and Senator Bob Casey have introduced bills to create grants for states to expand these services during the pandemic, and pay the workforce that provides those services what they should be paid to do the important work they do, providing support for as much independence as possible in the community.

Congress must include those HCBS grants to states in the next COVID-19 response legislation to keep people with disabilities out of dangerous congregate settings and in their homes and communities. And when this is over, I won’t rest until we have the reckoning that this country needs to fully understand where people with disabilities belong: safely integrated in their homes and communities.

If we are all in this together, then we all count.

Tell Congress #WeAreEssentiall today.

A row of empty hospital beds

Over 30 Groups File Amicus Brief in Wisconsin Regarding Heightened COVID-19 Risks to People With Disabilities and Older Adults

/in , , , /by Pam Katz

The Arc, The Arc Wisconsin, and over thirty Wisconsin and national disability and aging advocacy organizations, represented by the law firm Munger Tolles & Olson, have filed an amicus brief with the Wisconsin Supreme Court explaining the significantly heightened risks to people with disabilities and older adults of experiencing life-threatening consequences from COVID-19. These heightened risks are further compounded by race, with African Americans more likely to have a disability than any other group and dying from the virus at twice the rate of the rest of the population. In Wisconsin, African Americans are 6% of the population, but 39% of deaths from COVID-19. Should the state’s stay-at-home order (“order”) be lifted prematurely, the disproportionate harm to people with disabilities and older adults would only worsen, putting thousands of lives in immediate danger, especially those living in group homes and congregate care settings.

“Re-opening cities and states too early against the advice of state public health officials would increase spread of the virus and overwhelm our health care system with a resurgence of COVID-19, with disproportionate and devastating effects on people with disabilities and older adults, who are far more likely to experience life-threatening consequences from the virus. The Arc has been fighting tooth and nail to protect people with disabilities during this pandemic, and any interference with state public health measures significantly undermines the important progress that has been made nationwide, with inevitably tragic results,” said Peter Berns, Chief Executive Officer of The Arc.

“We are gravely concerned for the lives of Wisconsinites with disabilities, older adults, and their support staff. We have heard from many constituents across the state about the fears they have about this virus and anxiety regarding experiencing discrimination in medical care if they end up hospitalized. The Arc Wisconsin and our partner organizations have worked hard over the last month to ensure the best possible outcomes for our constituents during this pandemic and we simply cannot afford to go backwards,” said Lisa Pugh, Executive Director of The Arc Wisconsin.

If the order is lifted against the advice of public health officials, people with disabilities and older adults—already at heightened risk of life-threatening complications from the virus—will face even greater risks of harm due to:

Underlying conditions. People with disabilities of any age are more likely to have underlying health conditions that put them at greater risk of serious complications and death if exposed to the virus.

Lack of Personal Protective Equipment (PPE). People with disabilities and older adults, whether living in congregate or community-based settings, often require assistance from a workforce that cannot maintain social distance while supporting them in their daily lives.  The state and nationwide shortage of PPE puts both staff and those they are supporting at higher risk of contracting the virus, which will only be exacerbated if the order is lifted.

Congregate settings. Many individuals with disabilities and older adults live in congregate settings such as group homes, nursing homes, intermediate care facilities, and psychiatric facilities. Congregate settings like these have seen rampant spread of the disease and alarming death rates.  If the order is lifted, these numbers will only worsen due to greater community exposure of staff coming in and out of the facilities and the potential lifting of visitor restrictions to these facilities.

Discrimination in medical care. People with disabilities and older adults are at greater risk of being denied life-saving medical care treatment if an uncontrolled outbreak forces rationing of medical care, a situation in which people with disabilities and older adults are more likely to be harmed due to a history of discrimination.

Homelessness. People with disabilities and older adults also experience homelessness at a far greater rate than the rest of the population, putting them at even greater risk as the CDC has identified homelessness as an additional risk factor in contracting the virus.

The Arc logo

Victory for People With Disabilities: Recovery Rebate Checks Automatically on the Way

/in , , , , /by Pam Katz

Thanks to the advocacy of people with disabilities and their families and friends, the Treasury Department announced today that it would automatically issue Recovery Rebate payments to people with disabilities who receive Supplemental Security Income (SSI) via the method by which they usually receive their SSI benefits. This change ensures that people with disabilities on SSI will automatically receive the Recovery Rebate payments authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act. This money will help millions of the lowest income people with disabilities deal with the economic strain of the COVID-19 pandemic.

 “The personal consequences of this public health and economic disaster are dire for many people with disabilities. From paying rent, to getting groceries safely, to sheltering in place, it all costs more than what many people have on hand. These stimulus payments are incredibly important to people with disabilities, and now, they won’t have to jump through needless hoops to have some breathing room in their bank accounts,” said Peter Berns, CEO, The Arc.

While many people with disabilities on SSI were deemed eligible to receive Recovery Rebates, and the payment would have been exempt from asset and income limits, there was a catch.

To access payments, Treasury initially said people must have filed 2018 or 2019 taxes, or now file them, even people with IDD who receive SSI who earn too little to file taxes. The Arc led efforts to ensure that these payments were automatic, working with allies across the disability community and on Capitol Hill, to ensure that Treasury knew how critical it was that these payments be made to people with intellectual and developmental disabilities and their families without the burden of filling out unnecessary paperwork.

“In the middle of a pandemic, when people are being told to stay home and away from other people to protect their health, the government was asking people with disabilities to take on unnecessary burden and waste time by filing taxes. It was a commonsense fix that had bipartisan support because it was just the right thing to do. We are delighted that Treasury has acted, and now urge them to do the same for some populations not captured in this announcement, including many of the lowest income veterans with disabilities,” said Berns.

The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

/in , , , /by The Arc

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

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

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

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

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

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

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

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

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

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

Call CongressEmail Congress Tweet Congress
The Arc logo

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

/in , , /by Pam Katz

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

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

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

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

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

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

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

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

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

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

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

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

David Carlson, Disability Rights Washington

davidc@dr-wa.org

Shira Wakschlag, The Arc of the United States

Wakschlag@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

Close up of a microscope

Coronavirus Relief Bill: The Arc Fights for Disability Community

/in , , , /by Pam Katz

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

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

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

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

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