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

Disability Rights Groups Urge Supreme Court to Uphold Protections Against Disability Discrimination

Disability rights organizations filed friend-of-the-court briefs today urging the Supreme Court to uphold disability rights by rejecting CVS’s attempt to dismantle non-discrimination protections under Section 504 of the Rehabilitation Act.

The case, CVS v. Doe, involves a CVS-managed prescription drug plan that requires people who need “specialty medications” to receive them by mail, instead of at their local pharmacy. Five individuals living with HIV sued over the requirement, arguing that it effectively prevents them from receiving adequate care for their condition and represents discrimination based on their disability.

CVS is arguing in the case that Section 504 of the Rehabilitation Act does not protect against claims of “disparate impact,” or when neutral policies or practices have disproportionate impacts on a protected class, in this case people with disabilities.

In one of the amicus briefs filed today by 17 disability and civil rights organizations, including the American Civil Liberties Union, the American Association of People with Disabilities, The Arc of the United States, the Civil Rights Education and Enforcement Center, Public Justice, and the Disability Rights Education & Defense Fund, the groups argue that long-standing Supreme Court precedent makes clear that most discrimination against people with disabilities comes from “benign neglect” or thoughtlessness — and that removing the ability to get relief from such discrimination would undermine the entire purpose and history of Section 504. The court explained in Alexander v. Choate that congressional intent would be decimated if Section 504 were interpreted to require intent to discriminate.

In the other amicus brief, filed by the Paralyzed Veterans of America, Bazelon Center for Mental Health Law, National Disability Rights Network, and eight other disability rights organizations, the brief argues that the Supreme Court should not decide the issue of whether disparate impact claims are permitted under Section 504 in this case because the claims brought are, at their core, claims concerning differential treatment and failure to make reasonable accommodations rather than disparate impact claims.

“People with disabilities continue to experience widespread discrimination in all areas of life. Congress passed federal disability rights laws to ensure people with disabilities have comprehensive protections to be included in society and have meaningful access to public life. The disability community has fought hard for these rights over the course of decades and we will continue fighting to ensure the broad protections intended by Congress are not undermined,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc of the U.S.

“CVS’s position is not just wrong on the law, it’s dangerous. Disparate impact claims are the backbone of disability rights litigation. If the Supreme Court agrees with CVS, disability rights could be set back decades,” said Susan Mizner, director of the ACLU Disability Rights Program. “CVS cannot in good faith say it supports people with disabilities while simultaneously urging the Supreme Court to gut disability rights. The company should withdraw this case from the Supreme Court docket.”

“The Section 504 regulations were finalized in 1977 after years of serious negotiation between the disability community and government and business representatives,” said DREDF board member Judith Heumann, a leader of the disability rights movement who is featured in the 2020 documentary Crip Camp. “We knew that we had to cover neutral policies — we are so often excluded that way. So that’s what we did. It was foundational.” Heumann was a key witness during the hearings leading up to the Americans with Disabilities Act, and testified about her many experiences with discrimination based on paternalism, restrictive criteria, and stereotypes that were couched in neutral terms.

“The protections of the Rehabilitation Act have existed for almost 50 years. Disabled people rely on the protections within the Rehabilitation Act and section 1557 of the Affordable Care Act to assert our right to demand accountability and recourse when we experience discrimination,” said Maria Town, President and CEO of the American Association of People with Disabilities. Despite the progress spurred by both disability community advocacy and the presence of these civil rights laws, discrimination is still a daily occurrence for most disabled people. If the Supreme Court sides with CVS, people with disabilities will lose one of the primary avenues we have to defend our rights and seek justice.”

The Rehabilitation Act was passed in 1973, and alongside the Americans with Disabilities Act, established safeguards against disability discrimination. As a result of these laws, society has become increasingly accessible for people with disabilities. Before the Rehabilitation Act, people with disabilities had no resource to challenge discriminatory practices. A decision in favor of CVS would eviscerate the ability to challenge policies and practices that have a disproportionate impact on people with disabilities.

A woman and young child walk down a sun-filled sidewalk holding hands

Project TENDR Researchers Applaud CDC Action to Protect More Children From Neurotoxic Exposures and Anticipate Sweeping National Change

The Centers for Disease Control and Prevention (CDC) today issued a new value for the level of lead in children’s blood considered to be elevated, tightening the standard from 5 micrograms/deciliter to 3.5 micrograms/deciliter. The CDC announcement coincided with the Biden Administration’s release of a government-wide plan for preventing lead exposure in children, focused on protecting those most at risk.

More than half of U.S. children have detectable lead levels, with children in poverty and Black children more likely to suffer higher lead levels. Black children living below the poverty line have higher blood lead levels than White or Hispanic children living below the poverty line. In 2012, the National Toxicology Program found lasting effects on children’s academic achievement, IQ, attention, and behavior at lead levels below 5 ug/dL. No level of lead is safe in children, according to the CDC.

In August 2021, more than 40 scientists, health professionals, and advocates as part of Project TENDR (Targeting Environmental Neuro-Development Risks) sent a letter urging CDC to revise the children’s blood lead level without further delay. In 2017, Project TENDR experts published recommendations in JAMA Pediatrics for establishing and achieving national goals to eliminate childhood lead exposure, which were then adopted as policy by the American Medical Association.

Dr. David Bellinger, with Project TENDR and a neuropsychologist and epidemiologist at Boston Children’s Hospital and Harvard University, has researched low-level effects of lead on children’s brains for decades. Bellinger states, “Exposure to any amount of lead threatens the developing brain. The new CDC standard should catalyze a sweeping nationwide effort to identify and eliminate all sources of lead affecting children – from aviation gas to housing, from baby food to water pipes.”

Dr. Mark Mitchell with Project TENDR is an expert on environmental health justice at George Mason University and co-chairs environmental health efforts for the National Medical Association. Dr. Mitchell said, “Every agency must leverage the CDC’s revised lead standard toward protecting the children most at risk of harm – those living in poverty and Black children. These exposures are preventable and should not be tolerated in a just society.”

 

Project TENDR is a collaboration of leading scientists, health professionals, and advocates protecting children’s brains from toxic chemicals and pollutants. Project TENDR is a program of The Arc, the largest national organization advocating for and with people with intellectual and developmental disabilities, and serving them and their families.

 

A woman in a motorized chair plays with a small dog on a grassy field in front of a community of houses

New Budget Framework Provides Historic Investment in the Disability Services System

Today, President Biden announced the Build Back Better budget framework that would make significant investments in our nation, people with disabilities, their families, and the direct support workforce. This new deal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers that support them.

For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on, Medicaid, has needed an investment. People are stuck on waiting lists for HCBS, the direct care workforce is underpaid, and too often, unpaid family caregivers are filling in the gaps.

“This proposal is a huge down payment on investing in the futures of people with disabilities and their families. It will expand access to services for people with disabilities on waiting lists and start addressing the direct care workforce crisis, including raising wages and creating more jobs. Without a robust and well paid workforce, the promise of services in the community falls apart – so it was urgent that the direct support workforce be bolstered in this deal,” said Peter Berns, CEO, The Arc.

While the investment in HCBS is major, and includes long fought for funding, even with the most robust investment in these services, families still need paid leave. The Arc has long advocated for a national paid leave program for family caregivers. The pandemic forced millions of people to choose between their own health, the health of their families, and their livelihood. As the BBB package moves forward, The Arc urges Congress to include paid leave as the package moves through the House and Senate.

“We have always known because of the many stories from our network, but the pandemic highlighted for everyone how crucial paid leave is for people with disabilities and their families. Leaving out paid leave is unacceptable, and Congress should include paid leave in this package,” said Berns.

The Arc is also pleased that the framework includes:

  • The extension of improvement to the Child Tax Credit for one year and permanent expansion of the credit to the lowest income families;
  • The expanded Affordable Care Act premium tax credits through 2025; and
  • The extension of improvements to the Earned Income Tax Credit for low-wage workers with disabilities.

“We urge Congress to act quickly on this plan, add more funding for HCBS as negotiations continue, and fulfill the promise on paid leave. Change can’t come soon enough for millions of people with disabilities and their families,” said Berns.

The Arc logo

Members of Congress Join Parents, Caregiving Advocates to Demand Urgent Care Infrastructure Investments in Build Back Better Budget Reconciliation

WASHINGTON, DC — Speaker Nancy Pelosi, U.S. Senators Cory Booker (D-NJ), Maria Cantwell (D-WA), Robert Casey (D-PA), Tammy Duckworth (D-IL), Kirsten Gillibrand (D-NY), Patty Murray (D-WA) and Ron Wyden (D-OR), Reps. Rosa DeLauro (D-CT), Debbie Dingell (D-MI), Lloyd Doggett (D-TX), Sara Jacobs (D-CA), Jackie Speier (D-CA) and Bobby Scott (D-VA) joined parents, caregivers, care workers, and advocates Thursday to express support for care infrastructure investments in the Build Back Better budget reconciliation package.

Specifically, members of Congress voiced their support and explained why workers, families, businesses and our economy need care infrastructure investments immediately, including paid family and medical leave, in-home-and community-based services for elders and people with disabilities, a fully refundable Child Tax Credit (CTC), living wages and a path to citizenship for all care workers.

“All over the country people with disabilities, and their families are going without the support that they need due to decades of lack of investment in Home and Community-Based Services, resulting in stagnant pay for direct care worker wages, for a workforce doing life-giving work,” said Nicole Jorwic, Senior Director of Public Policy, The Arc of the United States. “The dedicated funding for HCBS will raise wages for these workers, create more and better direct care jobs, provide more services for those going without, and support family caregivers who are currently filling the gaps that the service system leaves behind. Now is the time to build back better to support people where they want to live, in their homes and communities.”

“The time to build a care infrastructure that lifts our economy, our families and our country is now. America’s moms, dads, and caregivers are rising across the nation to let Congress know that care can’t wait, and neither can our economy,” said Kristin Rowe-Finkbeiner, Executive Director and CEO of MomsRising. “We must end the days when moms, dads, and caregivers lose their jobs when a baby comes or critical illness strikes, when families can’t afford quality child care, when care workers don’t earn living wages, when people with disabilities and the aging can’t access or afford in-home care, and when tens of millions of America’s children are raised in poverty. A care infrastructure will lift families, enable moms and parents to work, support businesses, boost our economy, and create millions more good jobs. It will allow for a just recovery from the pandemic and make our country more successful.”

“Small businesses are demanding programs like paid leave and child care that will help ease the burden of high costs on working families and support entrepreneurs. It’s past time to level this playing field,” said Main Street Alliance Co-Executive director Chanda Causer. “An investment in our overall care economy is an investment in small businesses, and our local community. It is important to move both pieces of infrastructure legislation together. One without the other will limit an equitable or sustainable recovery. Small businesses are watching closely to make sure any investments in our economy are truly investments in an equitable recovery and future.”

“Home and community based services literally keeps myself and millions of Americans alive and at home with our families. Fully funding home and community-based services, would allow seniors and people with disabilities to receive the care they need at home to live with dignity and respect with their families and loved ones,” said Ady Barkan, Co-Founder of Be A Hero. “Not only will fully funding home and community based services allow for seniors and people with disabilities to live at home with dignity and respect, but it will finally give caregivers the respect they deserve through a living wage.  The historic investments in HCBS will have an outsized impact on the nation’s overall employment, and the employment of women and women of color. Millions of Americans are counting on Members of Congress to seize this moment, be heroes, and fully fund home and community based services.”

“Home care workers no matter where we work or live need the right to form a union,” said Latonya Jones-Costa, a home care worker from Atlanta. “I’m an expert in my field with specialized skills and advanced certifications. I have just as much training and qualifications as other healthcare workers; however, I don’t earn a family-sustaining wage, have healthcare. I have to work two jobs just to keep the lights on. It’s hard to fight for those basic benefits when I don’t have an opportunity to join a union, and unfortunately in our industry that was done by design. Now we have a better chance to undo these injustices and fight for our basic benefits so we can better provide essential care to our clients.”

“The pandemic has exacerbated the care crisis most women — especially Black and Brown women — in this country have been facing for decades. Millions of women have been forced out of the labor market as women-dominated industries were hit the hardest by the pandemic and caregiving needs at home increased,” said Monifa Bandele, Interim President and CEO at TIME’S UP Now. “The system is broken and women and families are suffering, and so is the economy. Women’s labor force participation has reached its lowest point in 30 years. We can’t achieve family economic security or safe, healthy, thriving communities if women can’t productively engage in the workforce because they don’t have access to quality child care or care for their elderly relatives or family members with disabilities. We are the only wealthy nation that doesn’t guarantee paid family leave, which undermines our workers’ productivity. Care can’t wait and the time to care is now.”

“Here’s the bottom line: Babies’ growing brains can’t choose between the things they need. Neither should Congress,” shared Dr. Myra Jones-Taylor, ZERO TO THREE’s Chief Policy Officer. “Millions of parents in this country are forced to make impossible decisions every single day about caring for and supporting their babies. Today, we are on the cusp of shoring up our crumbling care infrastructure and supporting families and parents in providing for their children. The Build Back Better Act answers the call for a baby agenda that provides elements essential for healthy development with paid family and medical leave; a comprehensive child care system that addresses both the high costs and limited supply of quality care that plagues parents with young children; and an enhanced Child Tax Credit that could cut child poverty in half. This is a once-in-a-generation opportunity to respond to families’ needs today and to build a strong foundation for generations to come. Babies and families need a care infrastructure that paves the way for healthy development and strengthens families, communities, and our country.”

“We have the opportunity to do something meaningful—and truly transformational—to help every working family in this country but particularly the women of color hit hardest in an ongoing crisis,” said Dawn Huckelbridge, Director of Paid Leave for All. “We have the opportunity to pass policies that would yield millions of jobs, billions in wages, and trillions in GDP and to leave a powerful, profound legacy—to finally make history by passing paid leave in the United States. Care must be the cornerstone of our recovery, our rebuilding, and this package.”

“Families can’t thrive, and the economy can’t recover, until we have the policy solutions that support all of us in caring for the people we love,” said Olivia Golden, executive director of the Center for Law and Social Policy (CLASP). “That’s why we urge Congress to ensure the Build Back Better Act includes provisions to address our nation’s long-standing failure to support care for children, seniors, and people with disabilities—problems, which the pandemic has magnified, that disproportionately affect women, children, and communities of color. Significant investments in child care, pre-K, paid family and medical leave, continuation of the expanded child tax credit and Earned Income Tax Credit, and a pathway to citizenship are essential for our economic recovery.”

“People across the country are waiting for the Build Back Better agenda to pass, including robust investments in the care work that allows all other work to happen,” said Ai-jen Poo, executive director of National Domestic Workers Alliance and Caring Across Generations. “We all deserve an economy that gets women back to work, and we’ll get there when our leaders invest in home and community-based services, expand care services for our elderly and our loved ones with disabilities, lower care costs for families, and raise wages for the essential workers who do the work that make it all possible. It’s time for Congress to deliver and ensure that all of us, especially care workers themselves, can access the care we deserve.”

“Comprehensive, universal paid family and medical leave is essential for workers now more than ever,” said Lelaine Bigelow, Vice President for Social Impact and Congressional Relations at the National Partnership for Women & Families. We are grateful to our Congressional leaders who understand this, and who continue to fight for legislation that truly builds back better and provides support for women and families at this time when they need it most. Without robust care policies, our economy will only continue to suffer. At a time when many Americans are worried about their health and their economic stability, care simply cannot wait.”

The event was organized by MomsRising and Care Can’t Wait in partnership with Better Balance, Advocates for Children of NJ, American Association of People with Disabilities, American Federation of Teachers, Be a Hero, Building Back Together, Campaign for a Family Friendly Economy, CAP Action, Caring Across Generations, Center for American Progress, Center for Law and Social Policy (CLASP), Child Care Services Association, Coalition of Labor Union Women, AFL-CIO, Community Change Action, DC Action, Equal Rights Advocates, Family Values @ Work, Family Voices NJ, First Focus on Children, Institute for Women’s Policy Research, Kansas Breastfeeding Coalition, Low Income Investment Fund, Main Street Alliance, NARAL Pro-Choice America, National Asian Pacific American Women’s Forum (NAPAWF), National Association for Family Child Care, National Council of Jewish Women, National Domestic Workers Alliance, National Organization for Women, National Partnership for Women & Families, National Women’s Law Center, NCBCP/Black Women’s Roundtable, Oxfam America, Paid Leave for All, PL+US: Paid Leave for the U.S., SEIU, Stand for Children, Supermajority, The Arc of the United States, TIME’S UP Now, UltraViolet, United for Respect, United State of Women, We Demand More Coalition, Women’s March, and ZERO TO THREE.

September 11 Day of Service Grantees Give Back and Help Prepare Their Communities

This past September marked the 20th anniversary of the September 11 attacks. To honor all who were lost, The Arc joined forces with local chapters of The Arc and other community organizations to develop inclusive volunteer projects centered around the September 11 National Day of Service and Remembrance (9/11 Day).

These projects aimed to strengthen and prepare communities for all types of emergencies. Their goal was also to challenge the perception that individuals with disabilities are only service recipients by demonstrating that volunteers with and without disabilities can and do serve their communities side-by-side.

The Arc’s 2021 9/11 Day grantees spent much of the past year preparing for their keynote September 11 weekend events. This year’s grantees included Egyptian Area Agency on Aging, Ridge Area Arc, The Arc of Hanover, The Arc Central Chesapeake Region, Athletes for Hope, Greater Susquehanna Valley United Way, The Arc of Palm Beach County, The Arc Nature Coast, and The Arc Tennessee.

These dedicated organizations served their communities in a variety of ways, including:

  • Hosting community-wide artistic events, which provided a space for community members to create collaborative art that honors those lost on 9/11 and promotes collective strength, resiliency, and remembrance
  • Designing handmade cards of appreciation for local first responders
  • Assembling and distributing emergency kits to local families
  • Distributing emergency preparedness information and templates to community members
  • Installing fire alarms for homeowners living in high-risk neighborhoods

Together, our grantees recruited over 1,000 volunteers, who spent close to 5,000 hours leading a variety of emergency planning activities that benefited over 4,100 individuals.

We would love for your organization to join us next year by building an emergency preparedness volunteer program in your community. We are currently accepting grant applications for the 2022 September 11 National Day of Service and Remembrance – and the deadline to apply is November 4. Learn more and apply here!

Rows of empty desks in a classroom

Mask Mandate Preliminary Injunction Continues to Protect Iowa Children

A federal district court today granted a preliminary injunction in our mask mandate lawsuit, blocking enforcement of Iowa’s law prohibiting schools from requiring facemasks.

Previously, the court had issued and then extended a Temporary Restraining Order (TRO), which also blocked enforcement of this harmful law. A preliminary injunction will stay in place as the lawsuit progresses and until the court makes a final decision on the merits of the case.

The court recognized that COVID-19 rates in Iowa continue to pose a risk of severe illness or death to children with disabilities or immunocompromised children represented in the lawsuit who are too young to qualify for the vaccine. The order continues to recognize that the law prohibiting masking requirements at school is likely to violate the civil rights of children with disabilities, including children with underlying conditions that make them more vulnerable to severe illness or death as a result of COVID-19.

With the law blocked, schools remain free to require masks in school. This is something we urge schools to do, in order to meet their obligations to all students as required by the Americans with Disabilities Act (ADA) and Rehabilitation Act.

“The court is making it clear, once again, that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc.

“With the continuation of this crucial injunction blocking HF847’s masking prohibition, schools are able to require masking in order to meet the needs of kids in their district who have disabilities, including underlying conditions that make them vulnerable to serious illness, hospitalization, or death from COVID-19.  They should continue those masking requirements they’ve put in place, and if they haven’t already, take steps now to adopt masking in school in order to comply with disability rights obligations,” said Rita Bettis Austen, Legal Director at ACLU of Iowa.

The lawsuit is brought by the American Civil Liberties Union, ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, and law firms Arnold & Porter and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities.

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

Senator Bob Casey Meets Disability Rights Advocates From 24-Hour Storytelling Vigil, Urges Congress to Pass the Build Back Better Plan

Activists From Across the Nation Deliver 7,500 Stories from Individuals Impacted by Dearth of Home and Community-Based Services

Photos of the Vigil and Rally: https://bit.ly/3ahKPN9

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

WASHINGTON, DC – OCTOBER 07: Sen. Bob Casey (D-PA) speaks at a 24-hour vigil outside of the U.S. Capitol building, Sen. Bob Casey (D-PA) joins people with disabilities and advocates to demand funding for home care services in President Biden’s “Build Back Better” package before Congress on October 07, 2021 in Washington, DC. (Photo by Paul Morigi/Getty Images for Unbendable Media)

Senator Bob Casey met disability rights activists and care workers who participated in a 24-hour storytelling vigil and reiterated his commitment to fully fund services critical for the health and well-being of people with disabilities and aging adults. Flanked by dozens of ADAPT activists in wheelchairs, SEIU members in purple shirts and other prominent caregiving advocates, Senator Casey closed out the vigil outside the Capitol Thursday by imploring his colleagues in Congress to vote “yes” on the transformative Build Back Better plan that could “put the country on the road to having the best caregiving in the world.”

Advocates from the diverse “Care Can’t Wait” coalition of disability rights, labor, health, aging and caregiving groups also shared the steep health and financial costs that families pay as a result of poverty wages paid to care workers and long waitlists for home and community-based services (HCBS).

“I came here today because I am literally fighting for my life and freedom,” said Latoya Maddox, a mother from Philadelphia who has used HCBS for the past 17 years and is active in Philly ADAPT. “Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.”

Earlier in the vigil, advocates traveling from states hard hit by COVID-19—including Tennessee, Texas and Kansas—continuously read stories collected from thousands of impacted individuals—disproportionately people of color— across the country who were unable to travel to D.C., in part because they do not have access to paid leave, childcare or long-term services.

More than 800,000 people with disabilities are on waiting lists for HCBS, such as in-home care, meal delivery, transportation services and respite care. The Better Care Better Jobs provisions in the budget reconciliation seeks to eliminate long standing HCBS waitlists and allow states to expand the number of people who are eligible to receive these essential services.

“We need Congress to pass the Better Care Better Jobs Act and invest the proposed $400 billion in Medicaid HCBS funding,” said Nicole Jorwic, Senior Executive Officer of Public Policy at The Arc and one of the advocates who participated in the 24-hour vigil. “Together, we must recognize this unprecedented opportunity to begin fixing our nation’s inadequate care systems and transform the way we treat people served, and those providing the care, who deserve dignity, respect, and opportunity. Our nation must finally recognize the value of all people and significantly invest in care during this historic moment.”

Even as negotiations around the biggest jobs plan since the New Deal have stalled, the long-term care provision in the Build Back Better plan is still popular with the overwhelming majority of people across the country.

“People across the political spectrum overwhelmingly want Congress to invest in the care infrastructure that is the backbone of our economy and our lives,” said Ai-jen Poo, Executive Director of Caring Across Generations and National Domestic Workers Alliance. “Increasing wages for care workers will ensure that they can care for themselves and their own families. Increasing wages will also make care work more sustainable in the long-run and ensure a more robust workforce that can meet the rising demand for these services.”

The event was co-hosted by ACLU, ADAPT, The Arc of the United States, Autistic Self Advocacy Network, AAPD, Bazelon Center for Mental Health Law, Be A Hero, Care Can’t Wait Coalition, Caring Across Generations, Little Lobbyists, Justice in Aging, National Council on Independent Living, National Domestic Workers Alliance, National Council on Aging, National Health Law Program, and SEIU.

A group of activitists poses in front of the US Capitol at night, holding light up signs that say Care Can't Wait

The United States Capitol Building

Disability Rights, Care Workers to Hold 24-Hour Vigil at the U.S. Capitol to Hold the Line on Care Funding

As negotiations around the biggest jobs plan since the New Deal stall, care advocates from across the country will hold a 24-hour vigil outside the U.S. Capitol to urge elected leaders to hold the line on caregiving funding in the Build Back Better plan.

People with disabilities, direct care workers, older adults, and caregivers will share the steep health and financial costs that families pay as a result of poverty wages paid to care workers and long waitlists for home and community-based services (HCBS). Advocates traveling from states hard hit by COVID-19—including Tennessee, Texas and Kansas—will continuously read stories collected from thousands of impacted individuals—disproportionately people of color— across the country who aren’t able to travel to D.C. in part because they don’t have the paid leave, child care or long-term services that enable them to do so. Overwhelming majorities of people across the country want Congress to invest in long-term care and support the Build Back Better’s plan to do so.

WHAT:

A 24-hour vigil in front of the Capitol during which advocates will continuously read stories of those struggling to access home and community based services and to make enough money to care for themselves and their families. The vigil will culminate in a closing ceremony with advocates delivering boxes of printed out stories to members of Congress.

The event is co-hosted by ACLU, ADAPT, The Arc of the United States, Autistic Self Advocacy Network, AAPD, Bazelon Center for Mental Health Law, Be A Hero, Care Can’t Wait Coalition, Caring Across Generations, Little Lobbyists, Justice in Aging, National Council on Independent Living, National Domestic Workers Alliance, National Council on Aging, National Health Law Program, and SEIU.

WHEN: 

Vigil: Wed, Oct 6 at 7 pm to Thurs, Oct 7 at 7 pm

Closing Program: Thurs, Oct 7 from 6-7 pm

WHERE: 

Union Square in front of Capitol Reflecting Pool

The area is bounded by Pennsylvania Avenue, NW; First Street, NW/SW; Maryland Avenue, SW; and Third Street, SW/NW

Live Stream: https://fb.me/e/3WaL3atkg

WHO:

Closing ceremony speakers:

  • Bob Casey, S. Senator representing Pennsylvania
  • Maria Town, President and CEO, AAPD
  • Mike Oxford, National Organizer, ADAPT
  • Nicole Jorwic, Senior Executive Officer of State Advocacy and Public Policy, The Arc
  • April Verrett, President of SEIU, Local 2015

Vigil speakers available for media interviews:

  • Domonique Howell, a Black and disabled advocate from Philadelphia. She is an independent living specialist and co-chair of ADAPT’s housing work group.
  • Latoya Maddox, a Philadelphia-based Black disabled mother who has used home and community-based services for the past 17 years
  • Lydia Nunez, Ombudsman and organizer with Gulf Coast ADAPT in Texas. She is white and disabled and fights for home and community-based services for other people with disabilities and older adults.
  • Josue Rodriguez, a Latino organizer with El Paso ADAPT who uses HCBS for attendant services.
  • Family caregivers and care workers 

VISUALS:

People holding posters and banners featuring portraits of care workers, family caregivers, aging adults and people with disabilities. Miniature houses featuring portraits of care recipients, caregivers and care workers

BACKGROUND:

More than 800,000 people with disabilities are on waiting lists for home and community-based services (HCBS), such as in-home care, meal delivery, transportation services and respite care. The Better Care Better Jobs Act—introduced in the Senate by lead sponsor Sen. Bob Casey and in the House by lead sponsor Rep. Debbie Dingell and supported by over 480 organizations—provides a blueprint for how $400 billion investment in HCBS could support a profoundly undervalued and underpaid workforce and get hundreds of thousands of people off waitlists by helping to:

  • Increase access to HCBS: expanding financial eligibility criteria for HCBS and supports for family caregivers, and adopting programs that help people navigate enrollment and eligibility.
  • Make permanent “Money Follows the Person,” a federal demonstration program that helps aging individuals and people with disabilities transition back to their homes and communities from institutions by providing federal matching funds that incentivizes HCBS in states
  • Support oversight and monitoring of the quality of HCBS
  • Increase HCBS payment rates to promote recruitment and retention of care workers