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.

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:

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.


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.


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

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


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:


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 


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


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

Lawsuit Filed Challenging New Texas Law Targeting Voting Rights

Today, the NAACP Legal Defense and Education Fund, Inc. (LDF), Reed Smith LLP, and The Arc filed a federal lawsuit on behalf of the Houston Area Urban League, Houston Justice, Delta Sigma Theta Sorority, Incorporated, and The Arc of Texas challenging S.B. 1, a new Texas law targeting voting rights. S.B. 1 includes a series of suppressive voting-related provisions that will make it much harder for Texas residents to vote and disenfranchise some altogether, particularly Black and Latino voters and voters with disabilities.

The lawsuit, which was filed in the United States District Court for the Western District of Texas, argues that S.B. 1 violates the First, Fourteenth, and Fifteenth Amendments of the United States Constitution and Section 2 of the Voting Rights Act by intentionally targeting and burdening methods and means of voting used by voters of color.

The Plaintiffs also claim that the law violates the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 and Section 208 of the Voting Rights Act by imposing voting barriers that will discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s voting programs.

The lawsuit challenges multiple provisions in SB 1, including:

  • Limitations on early voting hours and a ban on 24-hour voting.
  • The elimination of drive-thru voting centers.
  • The prohibition of mail-in ballot drop-boxes.
  • Limitations on the distribution of mail-in ballot applications.
  • Limitations and possible penalties for voter assistants, including criminal felonies.

Read the lawsuit challenging S.B. 1.

“Despite Texas legislators’ repeated and disingenuous attempts to cite ‘voter fraud’ as their reasoning for implementing S.B. 1, it is clear as day that this law was created to suppress votes,” said LDF Assistant Counsel Georgina Yeomans. “Rather than expand voting access, elected officials are making it harder for Texans to vote – especially voters of color, who will be disproportionately burdened. S.B. 1 was intentionally designed to have that effect.”

“Democracy should make it easier for eligible voters to vote, not harder,” said Ken Broughton, managing partner of Reed Smith’s Houston office. “Democracy should also increase voter turnout, not inhibit it. This legislation will prevent many qualified voters from voting because these laws are anti-voter.”

“Voter suppression is a disability rights issue. People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied. S.B. 1 disenfranchises voters with disabilities and denies them equal access to voting in violation of federal disability rights laws,” said Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel at The Arc.

“The Houston Area Urban League has a long history of supporting the disenfranchised. Any law that makes it harder for them to have their voices heard under the cloak of rampant voter fraud is disingenuous and contrary to our democracy,” said Houston Area Urban League President and CEO Judson Robinson III.

“The law at its core is anti-democratic and clearly designed to suppress the vote,” said Tina Kingshill, Coordinating Director of Houston Justice. “It will further hinder voting rights of low-income, pre-trial defendants of color unable to post bail who comprise over 70% of local and county jail populations. By prohibiting the expenditure of public funds to facilitate third-party distribution of applications to vote by mail, the law burdens non-profit voter outreach organizations with funding the printing costs of the applications. Many organizations will not have the funds for printing, so essentially the right to request and cast a ballot while incarcerated is taken away.”

“Delta Sigma Theta Sorority, Incorporated has been fighting for the rights of all U.S. citizens to vote for 108 years. It is our honor and responsibility to continue the fight against oppressive voting laws started by our Founders,” said Delta Sigma Theta President and CEO Beverly E. Smith. “S.B. 1 directly threatens the right to vote of over 20,000 members of Delta Sigma Theta Sorority and their family and friends in Texas, and we are committed to fight against S.B. 1 on their behalf.”

“Texas voters with disabilities are proud to participate in the democratic process and deserve equitable access to the polls, not more barriers,” said The Arc of Texas CEO Jennifer Martinez. “Unfortunately, these same Texans are accustomed to fighting for their civil rights and must continue to do so against the latest voter-suppression measures passed by the Texas Legislature.”

Texas is among more than 40 other states that have enacted legislative efforts to substantially restrict voting access. LDF and The Arc are also involved in litigation challenging Georgia’s restrictive voting law that also discriminates against voters of color and voters with disabilities. Read more here.

a young boy in a hospital bed with medical equipment on his face. He is smiling.

Surviving on a GoFundMe Campaign: How a Hospital Stay Without Paid Leave Forced One Family Into a Crisis No One Should Face

A selfie of a young boy with his father. They are laying in a hospital bed together and the son has a hospital gown on and medical equipment on his face and neck.

For Kerri, Ken, and their family, Father’s Day weekend 2019 started out as planned—peaceful and filled with quality family time. But early Saturday morning, Kerri and Ken awoke to their 17-year-old son, Yosh, screaming in pain. His stomach had swollen so badly overnight that it looked like a beach ball.

They were terrified for their son. Yosh, who has Down syndrome and autism, is not able to express himself well with verbal language and struggles to understand what is going on around him. However, even without words to explain what he was experiencing, it was clear his pain was severe.

Over the next several days, Yosh was placed in an induced coma as the hospital staff performed tests—and unfortunately found blockages throughout his intestines. For Kerri and Ken, the news was devastating. Yosh had never had any stomach issues. They grappled with trying to understand what was happening—all the while, never leaving Yosh’s side. They barely left the hospital as Yosh received treatment, taking turns watching him while the other rested.

They ended up at their local hospital, where Yosh is considered a VIP because of his frequent visitor status and is well-known to the hospital staff. But even as familiar with Yosh as the hospital staff are, Kerri and Ken know him best. To diagnose Yosh, Kerri says “you have to look for flying hippos with pink and purple spots” and she and Ken knew they needed to be there to help.

However, as the days turned to weeks, Kerri and Ken had to deal with something no parent should have to imagine: choosing between being with your seriously ill child and working.

Kerri and Ken are self-employed. While New Jersey has paid leave, it only covers workers who receive W2s, so both Kerri and Ken were left without help.

Kerri and Ken lived with a fear no parent should have to experience: that not only could each day be their son’s last, but that they would also lose their home in the process.

While they knew that Yosh’s Medicaid would pay for his hospital bills, without income coming in, they were terrified they would have no place to return to when the hospital stay ended. It was the scariest time of their lives. Both still experience post-traumatic stress from the situation, and Kerri shakes every time she passes the hospital.

A selfie image of a mom and her teenage son. She is wearing a white t shirt, green lanyard, glasses, and a bandana. He is wearing a yellow shirt and has medical tape and equipment on his face and neck.

While they were in the hospital, a GoFundMe campaign was set up for Yosh and his parents. Family, friends, friends of friends, and strangers donated to Kerri, Ken, and their family that summer.

And, through their help, they were able to pay for their mortgage, utilities, and other essentials.

Kerri and Ken are so grateful for the generosity of others—but also angry that when they were at their lowest point, there were no resources for their family. In addition to advocating for their son, Kerri advocates for and with other families in her work.

“There are so many families that are out there that don’t even know there are resources for them… When a family is in crisis, there needs to be some place for them to go and call in someone who has the knowledge and resources to help them.”

Kerri and Ken don’t want anyone else to ever go through what they did. Paid leave shouldn’t depend on the kind of tax form you get from your job. And no one should have to choose between being there for loved ones and their homes and livelihood.

Learn more and act now to help families like Kerri and Ken’s nationwide.

Visit to learn more.

A close up of a speaker at a podium.

The Impact of Student Loan Debt Forgiveness for the Disability Community

My name is Nicole LeBlanc.

I live in Silver Spring, Maryland. I am on the autism spectrum and have anxiety, ADD, seizures, and a learning disability. I am writing to talk about the importance of helping people with disabilities get their student loans discharged, including ending the 3 year monitoring period. As the Biden Administration works to address student loan debt for people with disabilities, it is critically important that the application process be easier and we eliminate the 3 year monitoring period for work earnings. Student loans create a major financial hardship on people like me and many others with disabilities, especially those who live on their own in expensive areas. The amount of loans that I had discharged was around $1,177 which is just slightly less than what I pay in monthly rent for my studio apartment. No one with a disability should have to choose between paying for rent or basic needs and student loans. Many of us in the disability community struggle with finding jobs that pay livable wages where we make enough to live comfortably off public benefits. Benefit cliffs often force us to make big trade-offs between working and needing to stay eligible for public benefits. Some people with disabilities have their Social Security benefits cut to pay their student loans and that isn’t fair.

The application process for student loan discharge needs to be easier and more accessible to fill out, especially for someone with autism or other disabilities who does not get any HCBS services to help complete complex paperwork and navigate government bureaucracy. All government applications should allow us to submit info online without incurring the cost and hassle of printing and mailing stuff. I am glad the Biden Administration started to do that for some people with disabilities, but all people with eligible disabilities should be included.

By letting people with disabilities discharge loans and eliminating the 3-year income monitoring period, it will go a long way towards eliminating the stress and anxiety that comes with the financial challenges of living with a disability. There is no better time like the present to embrace a commitment to creating a stress and anxiety-free world for people with disabilities and their families. Making these changes is one of the best ways the Biden Administration can fulfill President Biden’s campaign promises to the disability community.

A crowd of graduating students against a black backdrop. They are all raising their right arm and turning the tassels on their caps to the other side.

New U.S. Department of Education Regulation Provides Relief to People With Disabilities

Washington, D.C. – The Arc is pleased that the U.S. Department of Education announced a major step in removing barriers in the path of people with disabilities who pursue an education and career goals. The Arc advocated relentlessly for these changes in response to the outcry from people with disabilities across the country.

The Department’s new regulation will provide important relief to more than 323,000 people with disabilities who have outstanding student loans. These borrowers will receive more than $5.8 billion in automatic student loan forgiveness, without having to jump through bureaucratic barriers to access loan forgiveness. The new policy removes these barriers by automating the process and eliminating burdensome paperwork.

“We are encouraged that The Department of Education is implementing recommendations made by The Arc and other advocates to better serve people with disabilities and get rid of these obstacles to financial stability and achieving goals. This is also a huge step toward making sure that people with disabilities do not risk losing their Social Security benefits if they cannot navigate the bureaucratic discharge process. This change helps ensure that government systems work for people with disabilities,” said Peter Berns, Chief Executive Officer of The Arc of the U.S.

The United States Capitol Building

During Congressional Recess, We Must Raise Our Voices for Care!

By: Nicole Jorwic, Senior Director of Public Policy

After a slight delay, both Senators and Representatives are back in their states and districts for August recess, but in fact, it goes until mid-September. That means it is a key time to engage, reach out, and share your stories about why Medicaid home and community-based services (HCBS) matter in the lives of people with disabilities, their families, direct care workers, and the care infrastructure.

Every year, The Arc sends out t-shirts and signs to support advocates and encourage them to get out and ask their members of Congress to support the legislative priorities of people with disabilities. Those boxes were sent out to chapters this year, but with the ongoing pandemic, it is clear that in-person events may not be the best option. Moreover, we know that accessibility issues at town halls, even virtual ones, are a constant barrier to access.

While The Arc staff continues the work to increase access to the political process for all people with disabilities, an alternative way for ALL people with disabilities to participate fully in recess, and have their stories known had to be created.

That is why today, The Arc is launching the “Raise Our Voices for Care” campaign. Even if you can’t get to DC, your state capital, or a local town hall, your story still matters and must be shared. Our story tool is easy to use. At the end of recess, we will put all of those stories together to show the strength of all the voices rising up to support the $400 billion investment in Medicaid Home and Community-Based Services.

As a sister to my brother Chris, who doesn’t use his voice to speak, I know how incredibly important it is that we ensure that every person has the ability to communicate, and that includes with their legislators. Join us, share your HCBS story, and help us Raise Our Voices for Care because #CareCantWait!


The Arc logo

The Arc Celebrates Senate Passage of the $3.5 Trillion Budget Resolution to Invest in Crumbling Care Infrastructure

Washington, D.C. – The Arc is encouraged that the U.S. Senate took an important step in favor of respecting the human dignity of people with disabilities and aging adults. Wednesday, the Senate passed a $3.5 trillion budget resolution triggering the start of the reconciliation process.

The vote paves the way for Congress to pass a comprehensive spending package that would provide generational investments in our nation’s crumbling care infrastructure and groundbreaking benefits that could reshape the future for millions of people with intellectual and developmental disabilities, American families and their children.

“The historic investment in Medicaid Home and Community-Based Services (HCBS) included in the budget resolution will be transformative for a system that currently leaves almost one million people waiting for services all over this country,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “People with disabilities and aging adults, have struggled, well before the pandemic, with a system that does not include the resources to support them in their homes and communities. The infrastructure of care for these groups currently includes the labor of unpaid family caregivers who fill in the gaps in the service system, and a paid workforce that is not paid a family sustaining wage. The $400 billion included to both expand access to HCBS and raise wages for the direct care workforce will shore up the care infrastructure so that people with disabilities can live independently, aging adults can age in place, and family caregivers can return to the workforce.”

The Arc also strongly supports the inclusion of a national paid leave program and hope to see other priorities such as long-overdue improvements to the Supplemental Security Income program included in the final package.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

Stuck in Time: SSI Desperately Needs Updating

By: Bethany Lilly

My parents celebrated their golden wedding anniversary last year. Fifty years is a long time, and so much has changed—the internet, cell phones, self-driving cars, and we’ve seen so many disability rights victories. Next year, the Supplemental Security Income (SSI) program will also turn 50. But this milestone for SSI is almost disappointing because in those 50 years, the rules of SSI have barely changed. Passed in 1972, SSI was designed to keep the lowest income adults and children with disabilities and older adults from living in poverty. But Congress has ignored this crucial lifeline and failed to update it, instead leaving people with disabilities and older adults trapped in deep poverty, for fear of going over the limits and losing benefits. Rules that haven’t been updated in a half century govern how much money people who rely on SSI can earn, how married couples who receive the benefit are treated by the federal government, the amount of income the program provides, and how much help family and friends are allowed to give to loved ones on SSI. Rules about how much people can save haven’t been updated for almost 40 years!

SSI is supposed to fill in the gaps of other government support programs, paying for housing and other expenses that aren’t covered by Medicaid. But the current rules make that almost impossible. If someone is relying on SSI, the cost of renting a one-bedroom apartment almost anywhere in this country will consume more than the maximum monthly SSI payment of $794, leaving practically nothing for other expenses like groceries and other necessities. And limiting savings to only $2,000 means that many people cannot save enough to even move into an apartment or house. People can end up trapped in institutional settings, with no ability to afford an alternative. Like so many other parts of the disability service system, SSI is crucial infrastructure that is crumbling due to decades of neglect.

Nothing has made that clearer than the pandemic. With a maximum monthly SSI benefit of $794, people with disabilities are struggling to afford the necessities of pandemic life like masks, grocery delivery, and increased prices for so many basic goods. Restricted from saving more than $2,000, no SSI recipient could rely on their savings to get them through the past 17 months and the uncertainty that is ahead during this ongoing pandemic. Accepting help from family, friends, or mutual aid means a benefit cut. And because of marriage penalties, couples face an even harsher financial reality. Even the government’s COVID relief efforts created problems–stimulus checks and unemployment insurance expansions created eligibility issues because the systems used to implement these rules are equally archaic, unable to adjust to new benefits. For the millions of people with disabilities who are eligible for Medicaid because they are eligible for SSI, this was not only an issue with income security, but also put their access to health care and home and community-based services (HCBS) at risk.

Just as the pandemic highlights the need to expand HCBS and finally address the workforce crisis for direct care workers, it also shows us that the program that is supposed to pay for everything else is trapping people with disabilities in poverty. Enough is enough. We must fix these archaic SSI rules.

President Biden acknowledge the need for change during the presidential campaign, calling for five major reforms to the SSI system:

1) increasing benefits to at least the federal poverty line

2) increasing income limits to encourage work

3) eliminating harmful rules penalizing help from family and friends

4) eliminating marriage penalties

5) increasing asset limits

Any one of these changes would dramatically improve the lives of the 8 million people who rely on SSI, including almost 1 million children with disabilities. It would help ensure that people with disabilities can live with their families and friends in their own communities, with the supports they need.

We have a rare opportunity – right now – to fix the crumbling disability service system by fixing SSI, expanding HCBS, and passing a national paid leave program. We must act on this opportunity!


50 years is a long time. Just ask my parents.