A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

Care During COVID-19: An “Essential” Working Family’s Story

By Sethany Griffin

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

I am a member of The Arc and both a provider for adults and children with disabilities and a mother of an adult with autism and an intellectual delay. My son Karl is 19, and he typically attends an adult transition program five days a week where he learns vocational skills in the hopes of someday finding him a paying job. He also focuses on social interactions, self-advocacy, problem solving, self-care skills and strength building through physical therapy. 

My son’s transition program, like so many others, closed temporarily and without notice in the early months of the coronavirus pandemic. Like many families, we were left scrambling to ensure his needs were being met and that he wasn’t left alone, grappling with the unknown timetable of when things would be back to normal.

I work as the Director of Family supports for a large non-profit agency for families like myself, with children and adult family members with disabilities. My husband, Dana, had just started a new job and was not yet eligible for leave time. Our older son DJ, who is also Karl’s co-guardian, works as a direct service professional at a day program for the same non-profit as I do. All three of us are considered “essential workers.” We are also the only people who can effectively support Karl at home.

It has been—and continues to be—a huge struggle trying to juggle the work schedules of three “essential” adults while ensuring someone is staying with my son who can both understand and meet his needs. Karl is a wonderful young man. He loves all things Marvel and can tell you anything you ever wanted to know about Marvel heroes and the TV show “Supernatural.” He likes to ride his adult tricycle around the neighborhood and swim, and he wants to make money to buy all the Marvel Legends action figures in existence. When he is anxious, which is almost always, he knits his brows and rocks in place. For the unfamiliar onlooker, he can appear terrifying. He is also 6’6 and 330 pounds and can become aggressive when he is frustrated or scared. This isn’t something that just anyone could handle.
  
Ultimately, we decided that DJ would take an unpaid leave of absence to care for his brother. DJ is still living with us, so we covered his rent and paid for his food. But, going without a paycheck meant that he was no longer able to purchase non-essentials or save any money. By covering his bills, we have made our family financial situation even more precarious.

It is unfair to all of us that he had to make this sacrifice, but we weren’t left with any other choices.

Now that our state has started to re-open, we find the struggle even harder. All four of us are in one form or another back to work. When Karl returned to his program, he did it in a hybrid fashion, He doesn’t do well with “remote teaching” so those times were essentially useless and required a full-time caregiver. I am lucky enough to be able to work some hours from home, and my husband has started earning his paid time off. We are making it work, but this isn’t what “vacation time” was supposed to be used for. Right now, if Karl were to spike a fever for any reason, he would be required to stay home for two weeks. I don’t know what we are going to do when that happens, but we are a strong and resilient family, so we will continue to brainstorm and try to find viable solutions.

For people with disabilities and their families, it is so important that paid leave policies include all caregivers—not just parents. Siblings, cousins, Godparents, aunts, uncles, and grandparents have all stepped in and tried to help us. Paid leave for all caregivers would remove so much pressure from families who are already struggling with the expenses of caring for an individual with additional emotional and healthcare needs. A paid leave option for all caregivers is long overdue.

Resolution of Federal Complaint Amidst Nationwide COVID-19 Surge Raises Bar in Prohibiting Blanket DNRs, Medical Discrimination Against People With Disabilities

WASHINGTON, D.C. – Today, amidst rampant spread of COVID-19 infection throughout the country, the U.S. Department of Health & Human Services Office for Civil Rights (OCR) announced the resolution of a federal complaint filed against Utah. The complaint, brought by the Utah Disability Law Center and a coalition of national groups—The Arc of the United States, Center for Public Representation, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund and Samuel Bagenstos—is one of nearly a dozen complaints that the groups have been brought nationwide challenging states’ plans for rationing medical care during the COVID-19 pandemic as discriminating against people with disabilities. Today’s resolution sets a national precedent, with OCR building off earlier resolutions of complaints regarding plans in Alabama, Pennsylvania, and Tennessee and weighing in on the discriminatory impact of a number of provisions common in many states’ rationing plans.

The complaint against Utah alleged that the state’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, Utah has revised its Crisis Standard of Care Guidelines 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.

Most notably, hospitals must now provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket Do Not Resuscitate (DNR) policies for reasons of resource constraint. Physicians may not require patients to consent to a particular advanced care planning decision in order to continue to receive services from the hospital. This is the first time OCR has weighed in on this issue.

The following are additional key changes in Utah’s policy to avoid discrimination against people with disabilities:

  • No Exclusions or Deprioritizing Based on Resource Intensity or Disability Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because they have a disability diagnosis or functional impairment. 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: Utah has eliminated long term survivability as a consideration in treatment decisions, changing its Guidelines to allow medical personnel to consider only “short-term 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: Utah’s Guidelines now require hospitals to make reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)—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. The Guidelines note that other reasonable modifications may also be required to provide equal access to treatment for patients with disabilities.
  • 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.

“COVID-19 cases are rising nationwide and the threat of care rationing is real. 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 Peter Berns, Chief Executive Officer, 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.”

“We are very pleased that our state has worked with OCR to end this immoral and illegal practice of rationing care for people with disabilities,” said Laura Henrie, Associate Legal Director of the Utah Disability Law Center. “Utah has seen cases surge over the last several weeks, which puts pressure on our healthcare system. The fear of not getting life-saving treatment was very real for people like our client, Jacob. We are thankful for OCR’s efforts in protecting the rights of people with disabilities, so that folks like Jacob have equal access to care.”

“Today’s resolution sends a clear message during a dire time: people with disabilities must have equal access to life-saving treatment during the COVID-19 pandemic,” says Alison Barkoff, Director of Advocacy at the Center for Public Representation. “Many states’ medical rationing plans have discriminatory provisions similar to those in Utah.  We urge states across the country to heed this warning and revise their plans now to comply with federal disability laws.”

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

For more information about today’s resolution, contact:

Nate Crippes, Utah Disability Law Center

ncrippes@disabilitylawcenter.org or 801-910-5815

Alison Barkoff, Center for Public Representation

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

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

New HUD Rule Weakens Fair Housing Protections for People With Disabilities

WASHINGTON – The U.S. Department of Housing and Urban Development (HUD) is moving forward with a harmful rule that threatens the protections of The Fair Housing Act for millions of people with disabilities. The new Affirmatively Furthering Fair Housing (AFFH) rule, called the “Preserving Community and Neighborhood Choice,” published today, is a big step backward from efforts to fight housing discrimination and segregation in the U.S.

People with disabilities face a profound and longstanding housing crisis, including the lack of safe, affordable, accessible and integrated housing, and significant housing-related discrimination. These circumstances, based in a history of exclusion and segregation, make it difficult for people with disabilities to live and participate in their community, and puts many people with disabilities at risk of unnecessary institutionalization or homelessness.

Under the new rule, HUD has effectively given up on ensuring that housing agencies and communities receiving HUD funding significantly advance fair housing. It means less oversight, weaker to no standards, and lost opportunities to improve housing for people most in need, including people with disabilities. The new rule strips away the prior regulations and assessment tools, which included relevant data, analysis and public input. It replaces them with a toothless self-certification, where “any action” related to promoting fair housing is sufficient. The final rule also eliminated language requiring steps to expand opportunities for people with disabilities to live in “the most integrated setting appropriate.” And it makes these changes based on a process that ignores the comments received on the earlier, proposed version.

“A home, either rented or owned, is the cornerstone of independence. Living as independently as possible and being part of a community are crucial for people with intellectual and developmental disabilities, but HUD’s new rule could result in many people with disabilities continuing to be stuck in or forced into institutional settings, into housing that is substandard or unsafe, or homelessness, instead of a life they choose in the community,” said Peter Berns, CEO, The Arc. “The Arc will advocate to reinstate this critical tool to desegregate communities and continue to fight for fair housing.”

Small orange icons of people arranged to form a map of the United States

The Census Must Go On: The Futures of People With Disabilities and Hard-to-Count Populations Are at Stake

WASHINGTON – The Arc is distressed that the U.S. Census Bureau is cutting short efforts to count all persons living in the country for the 2020 Census. Ending the self-response phase and critical door-knocking efforts of the census one month early on September 30th risks severely undercounting already hard-to-count populations like people with disabilities, immigrants, people of color, those who are low-income or experiencing homelessness, and other communities. An undercount means the loss of important federal funding for programs like Medicaid, food assistance, housing vouchers, education services, and more – across communities in every state.

“The Arc condemns last-minute plans to essentially cut short the 2020 Census, particularly at a time when people with disabilities and other hard-to-count populations are experiencing unprecedented crisis and indefinite hardship. People with intellectual and developmental disabilities are full members of society and we count. The Administration must not limit our chance to participate in our democracy and be counted,” said Peter Berns, CEO, The Arc. “We urgently call on Congress to act immediately to extend the legal deadline for reporting census data so that there is more time to finish the survey and include everyone.”

Data collected in the decennial census is the foundation for the next decade and must be as accurate as possible for allocating federal funding and ensuring that communities are not shortchanged. Furthermore, the Constitution’s enumeration clause of the 14th Amendment makes it clear that dividing representation and seats in the U.S. House of Representatives must be based on a count of all persons living in the U.S. Abandoning the adjusted timeline for the 2020 Census will unfairly skew Congressional representation and redistricting for the next decade.

The pandemic has brought unprecedented challenges to executing the census. In April, the Census Bureau determined that additional time was needed to safely collect data and to protect the health of the public and census workers who will soon be going door to door to households that have not yet responded. The Census Bureau’s new hastily expedited timeline creates confusion, disrupts the planned public education efforts, and makes the job of counting everyone even more difficult.

The Arc also opposed the Administration’s directive issued last month to exclude undocumented immigrants in the 2020 Census count as it applies to Congressional representation.

“This action to rush the census further undermines the ability of the Census Bureau to complete a fair and accurate count. We will continue to push back against attempts to undercut an accurate count and dismiss people with disabilities and other hard-to-count populations. The Arc and our coalition partners have long advocated for the importance of people with disabilities participating in the census and we will not stop here,” said Berns.

A woman and her brother take a selfie in a car. The woman is smiling and the man has his eyes closed and a neutral expression.

Three Years to the Day Since Senator John McCain’s Thumbs Down: Congress Is Still Forgetting #WeAreEssential

By: Nicole Jorwic, JD, Senior Director of Public Policy

I was up at midnight when the clock turned over to July 28, 2017, my brother Chris’ 28th birthday. My brother has autism and is the person I have on my shoulder, in my heart, and in my head when I advocate every day. I watched Senator McCain come to the Senate floor to give his infamous thumbs down with tears streaming down my face, realizing that it was the end of the fight that the disability community just won.

And now we sit three years later, and that win feels so long ago. We have been waiting two months to see what the Senate will do with the $3 trillion HEROES Act that passed the House on May 15, 2020, a bill that included many priorities for the community.

Individuals with disabilities, their families, the workforce, and allies have been diligently reaching out to their Senators since May. And yesterday when Senate Republicans unveiled their plans, it appears that almost nothing of what the disability community needs is part of the new proposals. In fact, the HEALS Act—introduced the day after the 30th Anniversary of the Americans with Disabilities Act (ADA)—would gut the civil rights protections of the ADA in the face of the pandemic. The HEALS Act is a non-starter, while the HEROES Act that passed the House in May had many proposals that recognize the needs of people with disabilities.

The HEROES Act in the House included the top priorities of the disability community:

  • $13 billion in funding for Medicaid Home and Community Based Services (HCBS). Funds that will help keep people with disabilities out of dangerous congregate settings, support recruitment and retention of the direct support professional (DSP) workforce, and prevent rate cuts for service providers.
  • Access to PPE and supports for the DSP workforce.
  • Stimulus payments without limitations for people with disabilities.
  • Paid leave provisions to support family caregivers who must miss work to support their family members with disabilities.
  • Broad FMAP increased to 14% to stabilize the Medicaid program, one of the only funding sources for Long-Term Services and Supports.

From the summaries, the Senate proposals only ensure that people with disabilities are eligible for stimulus payments. The proposals do nothing to support HCBS, Medicaid, PPE and supports for DSPs, or paid leave for family caregivers. Already five pieces of COVID-19 relief legislation have moved, including three large relief packages, and the needs of the disability community have been overlooked in each. We will not be ignored again. The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities like my brother Chris, family members, or the DSP workforce, #WeAreEssential. On the anniversary of Senator McCain’s bold and brave thumbs down, we must all act and tell the Senate to protect the Medicaid programs that people with disabilities rely on.

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

ADA 30: Carrying on the Legacy

“I think we made great strides when it came to all the advocacy that went into the ADA. I do think if we didn’t do all of the advocacy for the ADA, we might not be where we are today in regards to people with disabilities.” – Joseph Damiano, Self-Advocate.

Joseph Damiano of Belfast, New York has never known life without the Americans with Disabilities Act, the ADA.

“The ADA was in place when I was born, so the ADA has been my viewpoint with everything that has gone on in my life,” Damiano said.

Damiano, 25, is a determined self-advocate who graduated from Alfred State College in June.

“I myself was able to go to college and you never heard about a lot people with disabilities going to college prior the ADA,” said Damiano.

As we mark 30 years since President George H.W. Bush signed the Americans with Disabilities Act into law, we reflect on the momentous fight for rights for people with disabilities, like Joseph Damiano and millions more. We give thanks to advocates everywhere who never gave up. We consider how the ADA can be improved and we envision what we want the future of the law’s promise to be, as advocates continue to demand better.

“We need to get more allies who know about the ADA and people to teach them it has lots of improvements still to be made such as accessible restrooms not always being accessible,” said Katie Griffith, a 34-year-old self-advocate from Gilbert, Arizona, who served as Ms. Wheelchair Arizona in 2016. “We need more advocates to unite.”

The Arc was instrumental in the fight for the ADA. The Arc’s Senior Policy Advisor Marty Ford served as one of many champions of the legislation. While Justin Dart, Jr. was the recognized leader of the substantial coalition effort to pass the law, Ford noted that former leaders of The Arc Elizabeth Boggs and Paul Marchand were integral in its passage. In addition, the grassroots actions from chapters and members of The Arc and other coalition organizations were critical to passage.

“One thing that is really important about the advocacy around the ADA is that everyone joined together. All of the advocacy organizations were in it together. One for all and all for one – no special deals,” said Ford reflecting back on the unified front to advance the rights of people with disabilities. “We didn’t allow ourselves to be pulled apart.”

Ford, whose brother Jud had intellectual disability, credits the ADA with laying critical groundwork.

“Through the success of ADA advocacy, the disability community became much more visible. Congress was much more aware of our issues and had more respect for the needs and the rights of people with disabilities. They started listening,” said Ford. “My brother lived most of his life before the ADA passed. I’m thrilled to see young self-advocates take leadership and take advantage of the ADA’s opportunities.”

“I look up to and have high respect for all the people who worked so hard to put the ADA in effect, as well as other disability laws,” said Griffith.

But thirty years later, our work is not done.

“It seems like they refuse to understand the ADA,” said Anthony Nash, a self-advocate from Richland, Washington, who was a little boy when the law passed. Nash says he regularly encounters businesses that are not in compliance with ADA regulations.

“We are fighting for respect and the right to live our lives,” said Nash, who is chairman of the Washington State Developmental Disabilities Council Public Policy Committee, “The ADA needs to be improved by being enforced in all businesses and schools. Respect what we want and not what they want. They are supposed to be supporting us in what we want in our lives.”

Nash is also a board member of The Arc of Washington State and Disability Rights Washington. He is also the web coordinator of Self-Advocates in Leadership.

As the ADA turns 30, Joseph Damiano is preparing for a new chapter of his life. He’s making plans to start in an employment training program while continuing his advocacy as chairman of self-advocacy group the Collaborative of New York.

“We shouldn’t stop advocating for the ADA right now even though the ADA is passed. We still need to fight for that and make sure the ADA stays in place,” said Damiano.

A strong advocate for independent living and home and community-based supports, Griffith has a message for other young people with disabilities who are carrying on the legacy.

“Is this the world we want to live in after your parents are gone? Is this the land of the free? Don’t ever be afraid to listen to that inner voice inside of you that tells you it’s okay to be the light and fight for your rights and the next generation and those with disabilities.”

Griffith, Damiano, and Nash are officers of The Arc’s National Council of Self Advocates

The Arc logo

COVID-19 Hotspots Arizona and Texas Crisis Standard of Care Plans Challenged by State and National Groups in Federal Complaints

WASHINGTON – A coalition of state and national disability and civil rights advocacy groups have filed complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) challenging the crisis standard of care plans in Arizona and Texas, two states hit hard by the COVID-19 pandemic.  These crisis plans are used to decide who receives life-saving treatment. Along with state partners, the national groups—The Arc, the Center for Public Representation, Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, and Justice in Aging—argue that the plans discriminate against people with disabilities, older adults, and people of color, placing these communities at risk of substantial and imminent harm—and the real risk of being denied basic and emergency treatment—during the pandemic.

The COVID-19 situation in both states is dire. Arizona is ranked at the top of the list for the highest number of confirmed COVID-19 cases per million residents in the world. In Texas, COVID-19 cases continue to set new records with each passing day, with Dallas County recently reporting over 1,000 new cases for six days in a row. Based on the unprecedented spread of the virus, medical officials in both states have warned that some hospitals have reached capacity and the crisis plans have been activated. While decision-making in these scenarios is bound to be challenging, it is unacceptable and illegal for the guidelines for decision-making in life-or-death situations to be discriminatory.

Since Texas has never adopted statewide crisis standards despite repeated requests from the disability community, the Texas complaint challenges the North Texas Mass Critical Care Guidelines issued by the North Central Texas Trauma Regional Advisory Council. This Regional Advisory Council is responsible for overseeing the provision of emergency medical services for 8 million Texans or 30% of the state. The Arizona complaint challenges the statewide Crisis Standard of Care guidelines along with the recently-issued COVID-19 Addendum.

The complaints allege that, among other things, the plans categorically exclude people with certain disabilities from life-saving treatment; fail to modify policies and procedures that discriminate against people with disabilities, including no-visitor policies and the use of assessment instruments; and fail to prohibit treatment decisions that are based on discriminatory assumptions regarding future medical resources the patient may require. In addition, denying life-saving treatment to people who have certain illnesses or underlying conditions, as well as those with life-expectancy of less than five years will inevitably have a further discriminatory impact on Black, Native, and Latinx communities who are more likely to have certain underlying conditions and a shorter life expectancy than whites. These communities also face a disproportionate risk of COVID-19 infection and hospitalization, putting them at greater risk of being subject to these discriminatory plans. As such, the plans reinforce current and historical inequities in access to health care, and risk importing quality of life criteria and unconscious bias into the triage process, which will inevitably lead to inconsistent and subjective decision-making, higher rates of clinical error, and discriminatory allocation of care.

“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,” said Peter Berns, Chief Executive Officer, The Arc. “As states like Texas and Arizona see alarming new surges in the spread of the virus, 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 cannot be left behind during a life-threatening public health crisis.”

“Right now, given the limited supply of hospital beds and life-saving equipment, the medical rationing plans in Arizona and Texas could result in a death sentence for some persons with disabilities, older adults, and people of color.  They are clearly discriminatory in light of OCR’s recent guidance and resolutions,” said Steven Schwartz, Legal Director of the Center for Public Representation. “We call on OCR to take urgent action to protect the lives of people with disabilities, whose lives are at imminent risk as these discriminatory plans are being activated.”

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

For more information about these complaints, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Alison Barkoff, Center for Public Representation

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

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.

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