A picture of a mom and her son with IDD

Medicaid Expansion Saved Their Lives, Now Congress Wants to Cut It

/in /by Jackie Dilworth

For millions of people with disabilities and their families, Medicaid isn’t optional. It’s the glue holding everything together. It’s the health care and therapies that help children grow. The prescriptions that manage chronic conditions. The daily support that helps adults with disabilities get out of bed, work, and participate in their communities. The safety net that allows caregivers to keep going day after day.

But now, Medicaid expansion, a part of the Medicaid program that offers insurance coverage for certain people, including people with intellectual and developmental disabilities, is under threat. A federal budget bill moving through Congress proposes nearly $800 billion in Medicaid cuts, with Medicaid expansion directly in the crosshairs.

What Is Medicaid Expansion and Why Does It Matter?

Medicaid expansion, introduced under the Affordable Care Act (ACA), gave states the option to extend coverage to more low-income adults, including people with disabilities, chronic health conditions, and caregivers who had long fallen through the cracks. Many of these people have very low incomes but make just enough to be outside of the Medicaid income requirements. Others have developmental disabilities that do not meet Medicaid’s disability-specific requirements. In the 41 states (including Washington, DC) that adopted it, Medicaid expansion opened the door to health care for millions who had nowhere else to turn.

Who Benefits From Medicaid Expansion?

Some lawmakers claim Medicaid cuts won’t hurt people with disabilities. But these real people share how Medicaid expansion has impacted their lives.

Eri From Massachusetts
A mom and daughter with disabilities“My mother, an early childhood educator who worked with kids with developmental disabilities, died in 2012 because she couldn’t afford her asthma inhalers. By 2014, I was a teenager experiencing homelessness after losing my only caregiver. I had asthma, a severe mood disorder, and undiagnosed autism and ADHD, but I couldn’t afford health care or medication. Once Medicaid expansion happened, everything changed. I was finally able to receive care, go to college, and rebuild my life. Today, I’m employed, commercially insured, and still receive some Medicaid as a working adult with disabilities. I lost my mom before she could be helped, but expansion gave me a second chance. I’m living proof that it works.”

Monika From California
“I’ve never had a job that offered health insurance. And I never earned enough to pay for the high cost of insurance coverage or deductibles. Then Medicaid expansion came, and I finally got answers: my fatigue and severe joint pain were untreated lupus and rheumatoid arthritis. Now I get the care I need, and can keep caring for my dad, who has advanced Alzheimer’s and a brain tumor. My life and my family’s literally depend on Medicaid.”

What Happens If Congress Cuts Medicaid Expansion?

If Congress moves forward with these cuts, millions will lose access to care. Medicaid expansion has helped people:

  • Get diagnosed and treated
  • Access therapies that support their development
  • Learn, work, and contribute to their communities
  • Live safely at home instead of being institutionalized

Without it, we’ll see more uninsured people and more families pushed to the brink. And the people hit hardest? People with disabilities, caregivers, and low-income adults who are already navigating the most.

Is Medicaid Popular?

Yes, and public support is growing. New polling shows that 83% of Americans have a favorable view of Medicaid, up from 77% just months ago. That support only grows when people understand what’s at stake.

Medicaid Is Not a Handout. It’s a Lifeline.

When lawmakers say people with disabilities won’t be affected, they’re ignoring real people like Eri and Monika. People whose lives and futures depend on Medicaid expansion.

Their stories aren’t the exception. They’re reality.

We can’t afford to go backward—not now, not ever. Too much is on the line.

Read. Share. Take action before it’s too late. Urge Congress to protect Medicaid now.

A white man in a wheelchair on the sidewalk smiling while facing the camera

Disability Pride Month 2026: What It Is, the 2026 Theme, and How to Celebrate

/in /by The Arc

Updated July 22, 2026

Quick answer: Disability Pride Month is observed every July to celebrate disability identity and community, mark the anniversary of the Americans with Disabilities Act (ADA), and push for full inclusion in everyday life. The 2026 theme is “The World Works Better With Us.”

Key Facts

  • More than 1 in 4 U.S. adults, over 70 million people, have a disability.
  • Disability Pride Month happens in July and is tied to the ADA anniversary, signed on July 26, 1990.
  • The Disability Pride Flag was created by Ann Magill, a writer with cerebral palsy, and later updated based on community feedback.

2026 Theme: The World Works Better With Us

Selected by The Arc’s National Council of Self-Advocates (NCSA), a disabled-led national council, the 2026 Disability Pride Month theme is “The World Works Better With Us.”

It’s a clear statement about inclusion. When people with disabilities are included, respected, and supported, communities work better for everyone. That includes schools, workplaces, healthcare, transportation, and public life.

You can experience this in everyday life. Disability-led advocacy and design have helped create changes many people now rely on, like curb cuts, closed captioning, audiobooks, and voice dictation. What began as access often becomes a better experience for everyone, including caregivers pushing strollers, viewers who prefer captions, commuters listening to books, and anyone who uses voice-to-text while multitasking.

What Is Disability Pride Month?

Disability Pride Month is an annual observance in July that:

  • celebrates disability identity and community
  • recognizes disability culture and leadership
  • marks the ADA anniversary and the ongoing work to make civil rights real in daily life

The first Disability Pride celebration was a Disability Pride Day that took place in Boston in 1990. Chicago hosted the first Disability Pride Parade in 2004. Now there are events nationwide that help people with disabilities take pride in who they are.

Disability Pride Month is distinct from LGBTQ+ Pride Month in June. They are separate observances, each with their own history and community-led meaning.

Why Celebrate Disability Pride Month?

Many people with disabilities still face barriers to being fully included and valued. Ableism is often ignored, but its effects are real. It limits access to education, jobs, healthcare, and respect.

Disability Pride Month challenges that. At its core, Disability Pride is about being accepted on our own terms. It means disability isn’t something to hide or fix. It’s part of who we are. Everyone deserves inclusion, rights, and respect, without having to earn them.

Disability Pride Month also reinforces a basic principle: people with disabilities belong in the decisions that shape school, work, health care, and community life.

What Is Disability Pride?

Disability pride means different things to different people.

For some, pride is celebration and joy. For others, it means not carrying shame and expecting basic dignity, like equal access, needed accommodations, and fair treatment. Pride can be public or private. At its core, it’s about belonging.

Disability Looks Different for Everyone

Disability is part of human diversity, and people experience disability in different ways.

Some people feel proud and connected to disability identity and culture. Others live with daily symptoms that are painful, exhausting, or unpredictable and may seek treatment, technology, personal supports, or medical care that brings relief. Both realities can be true. Respecting disability identity and pushing for access doesn’t require pretending disability never comes with physical or mental challenges.

Why Disability Pride Month Matters Right Now

Disability Pride Month is a celebration, but it’s also a reality check.

Many people with disabilities and families are navigating a difficult mix of:

This month is a chance to celebrate and to be honest about what people are up against. It also matters because major decisions are being made about services, education, and benefits. Outcomes are stronger and fairer when people with disabilities are included early and meaningfully.

How to Celebrate Disability Pride Month

Whether you’re a person with a disability, a family member, an educator, an employer, or a neighbor, here are practical ways to celebrate and support inclusion in your community.

  1. Connect With People With Disabilities: Spend time with people with disabilities in your life and community, at events, at work, at school, and online.
  2. Learn Disability History and Culture: Understand the roots of Disability Pride by learning the history of disability rights and cultural contributions.
    • Learn about key moments in the disability rights movement from UC Berkeley’s archive and The Arc’s history.
    • Learn from people with disabilities through media like Crip Camp, CODA, Demystifying Disability, and Disability Visibility.
    • Follow people with disabilities on social media to learn from their experiences and perspectives.
  3. Advocate for Disability Rights and Inclusion: Disability rights are under attack, from cuts to Medicaid to threats to special education to the resurgence of the R-word. Here’s how to take action and make a difference:

Share Your Disability Pride Month Story

If you want to share what pride means to you, post a photo, video, or written reflection using #DisabilityPride and #DisabilityPrideMonth. If you share images, add alt text. If you share videos, include captions. Accessibility is part of belonging.

Join The Arc’s conversations around disability pride by finding us on Instagram, LinkedIn, and Facebook.

Disability Pride Month Events (updated for 2026!)

Last verified: July 22, 2026. Event details may change. Please check the event links for current information.

Meet and show your support for the local disability community by attending one of these events. This is the largest database for Disability Pride Month events available.

Know an event we should add? Email Jackie Dilworth at dilworth[at]thearc.org.

Disability Pride Month Themes Archive

  • 2026: The World Works Better With Us
  • 2025: We Belong Here, and We’re Here to Stay
  • 2024: We Want a Life Like Yours

Disability Pride Month FAQs

What is Disability Pride Month?

Disability Pride Month is observed every July to celebrate disability identity and community and to highlight the fight for full inclusion and equal rights.

When is Disability Pride Month?

Disability Pride Month is in July each year. The ADA anniversary is July 26.

Why is Disability Pride Month celebrated?

Disability Pride Month is celebrated to recognize disability culture and leadership and to push back on ableism, exclusion, and low expectations that still limit opportunities and access.

What is the history of Disability Pride Month?

Disability Pride Month history is tied to disability rights milestones and the ADA era, with early Pride events starting in 1990 and expanding to parades and community celebrations nationwide.

What does the Disability Pride Flag mean?

The Disability Pride Flag represents disability identity, solidarity, and the disability rights movement, including the ongoing work to remove barriers and stigma.

How can I celebrate Disability Pride Month?

How to celebrate Disability Pride Month includes learning disability history, supporting disability-led efforts, attending local events, and taking action for access and inclusion in your community.

What is the 2026 Disability Pride Month theme?

The 2026 theme is “The World Works Better With Us.”

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The Arc on Outcome of Election and Path Forward for People With Disabilities and Their Families

/in /by The Arc

With the election of President Trump and a new Congress, The Arc of the United States will continue to partner with all elected officials, advocating and educating that disability is a part of our shared human experience—one that touches every family, every community, and every generation regardless of political party. When people with disabilities have the support they need to live, learn, work, and participate fully in their communities, all Americans benefit.

Yet, every day, people with disabilities and their families face remarkably challenging circumstances. Children with disabilities are being denied educational supports that will ensure they get a strong foundation for their lives ahead. The unemployment rate of adults with disabilities is 2 times higher than the rate of non-disabled people. Nearly 700,000 people are stuck on years-long waiting lists for home and community-based services, which allows them to live independently in their communities. Caregivers are stretched to the breaking point, balancing work, financial stability, and the fight to secure essential services. These aren’t abstract policy issues. They are daily realities that affect families in every neighborhood, town, and state across America.

We have work to do, and The Arc will never stop advocating for the policies that people with disabilities need to thrive.

The Arc has deep roots in communities nationwide. For 75 years, our strong network of self-advocates, families, and professionals has shared their expertise with elected officials to ensure policy decisions reflect the pressing, serious needs of everyday Americans. We’ve seen firsthand that the most enduring progress comes when all leaders recognize disability rights as human rights.

The Arc logo

Medicaid Eligibility Renewals: A Message From CMS Office of Minority Health

/in /by The Arc

Written by: Dr. Aditi Mallick, Former Acting Director of the CMS Office of Minority Health
Reviewed by: The Arc’s public policy experts

States are aggressively evaluating their Medicaid enrollments following the end of the public health emergency, and many are losing coverage. Here’s everything you need to know about the unwinding and what to do if you are a Medicaid beneficiary.

Health care coverage is a critical lifeline for everyone and especially for people with disabilities and people who may be underinsured. Millions of individuals and families rely on Medicaid and Children’s Health Insurance Program (CHIP) to receive access to vital care to support their physical and mental health and, as a result, are likely to be impacted as states conduct Medicaid and CHIP eligibility renewals following the end of the COVID-19 public health emergency. The Centers for Medicare & Medicaid Services (CMS)1 remains committed to ensuring that minority and underserved populations understand this process and how it may impact their enrollment, eligibility, and overall health care.

Medicaid Renewals 101

In March 2020, as part of COVID-19 relief, Congress authorized additional Medicaid funding for states on the condition that they satisfied a “continuous enrollment” condition, which generally prohibited states from terminating most Medicaid enrollees’ enrollment until the end of the COVID-19 public health emergency. This helped to ensure millions of people could remain enrolled in Medicaid coverage without interruption during the pandemic. The continuous enrollment condition ended on March 31, 2023, allowing states to begin to return to normal operations around eligibility and enrollment, including conducting Medicaid renewals, beginning on April 1, 2023.

Medicaid Renewals Impact on People With Disabilities

Medicaid and CHIP renewals are a multi-step process, and states must begin the process by attempting to complete renewal of coverage based on information available to them without contacting the individual. If that is not possible, agencies must send renewal notices and requests for information to enrollees.

These steps have challenges associated with reaching people with intellectual or developmental disabilities who lack sufficient supports to navigate Medicaid enrollment and eligibility. If an enrollee does not receive or reply to renewal notices from the state (for example, because they have moved addresses), their coverage could be interrupted or discontinued altogether. That could mean losing access to essential health care, medication, and services needed as part of ongoing services, supports, and care plans.

States have independent obligations under federal civil rights laws to ensure that individuals and families continue to have access to Medicaid and CHIP as states conduct renewals. For example, states are required to take reasonable steps to provide meaningful language access for individuals with limited English proficiency and ensure effective communication with individuals with disabilities. Ensuring access to information is vital and required. Losing Medicaid also means losing long-term services and support (LTSS) and home and community-based services (HCBS), such as care for people with disabilities who may need more support of age; physical, cognitive, developmental, or chronic health conditions; or other functional limitations that restrict their abilities to care for themselves.

The Road to Renewal

The first and most important step for ensuring continuation of coverage is consistent outreach and communications to those impacted to confirm that they are completing their renewal forms accurately and in a timely manner. Information on the Renew Your Medicaid or CHIP Coverage2 webpage is a great starting point for helping people better navigate renewals. The webpage outlines how to prepare for the renewal process, what to do if you no longer qualify for Medicaid or CHIP, and where to go for more help, including contacts for each state’s Medicaid office.

We Need Your Help!

CMS is also using multiple creative avenues—such as direct partner outreach, monthly stakeholder webinars, social media, and ad placements—to spread awareness about Medicaid and CHIP renewals and to reach those who may have been missed through traditional communication channels. We are also planning communications focused on families with younger children during back-to-school activities in the fall.

Encourage people who lost their coverage to visit HealthCare.gov to see if they are eligible to enroll in a low-cost, quality health plan. Find toolkits, drop-ins, creative assets, and translations on the Medicaid and CHIP Renewals Outreach and Educational Resources webpage and be sure to download the All Hands on Deck Toolkit to get started in your community. Keep the conversation going throughout Open Enrollment! Find your state here to learn more.

Once enrolled, Coverage to Care offers resources to provide anyone information on health care coverage options, understanding their rights, and how to use their benefits. Join CMS in helping people understand and use their health coverage by sharing these tools with your community.

  • The Coverage to Care (C2C)3 campaign helps underserved populations understand health care coverage and connects them to primary care and preventive services that is right for them.
  • The C2C Roadmap to Better Care4 explains what health coverage is and how to use it to get primary care and preventive services. This resource is available in multiple languages, including Spanish5, as well as a Tribal Version6.
  • Getting the Care You Need: A Guide for People With Disabilities is a resource available in multiple languages to explain a person’s rights, how to work with health care providers, and how to take an active role in your health care.
  • Partner resources7 help health care professionals and national and community organizations support consumers as they navigate their coverage. This resource is available in multiple languages, including Spanish8.
  • Braille and additional format resources are available, contact CoveragetoCare@cms.hhs.gov.

By working together, we can reach those most in need of health care coverage as Medicaid renewals continue. Let’s stay committed to our shared vision of finding ways to consistently and creatively reach those who need our support. Together, we can ensure that eligible individuals remain on Medicaid and get the health care they need – a critical step helping individuals with intellectual or developmental disabilities receive the highest quality of health care.

1. (n.d.). Centers for Medicare & Medicaid Services. CMS.gov. https://www.cms.gov/
2. Medicaid (n.d.). Renew Your Medicaid or CHIP Coverage. Medicaid.gov. https://www.medicaid.gov/resources-for-states/coronavirus-disease-2019-covid-19/unwinding-and-returning-regular-operations-after-covid-19/renew-your-medicaid-or-chip-coverage/index.html
3. CMS OMH (n.d.). Coverage to Care. https://www.cms.gov/about-cms/agency-information/omh/health-equity-programs/c2c
4. CMS OMH (n.d.). C2C Roadmap to Better Care. https://www.cms.gov/files/document/c2c-roadmap-better-care.pdf
5. CMS OMH (n.d.). Guía Para Una Mejor Atención. https://www.cms.gov/files/document/roadmap-better-care-spanish.pdf
6. CMS OMH (n.d.). Roadmap to Better Care Tribal Version. https://www.cms.gov/files/document/c2c-roadmap-booklet-tribal.pdf
7. CMS OMH (n.d.). Partner Toolkit Get Involved in Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitenglish.pdf
8. CMS OMH (n.d.). Herramientas para Socios Participe en Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitspanish.pdf

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The Arc’s Statement on the Passing of Senator Lowell Weicker, Jr.

/in /by The Arc

There has never been a more influential and monumental moment in disability rights than when the Americans with Disabilities Act (ADA) passed in 1990. This legislation transformed the lives of millions of people with disabilities and continues to pave the way for anti-discrimination and accessibility. One of the lead Senate sponsors of the ADA, Senator Lowell Weicker, Jr. (R-CT), passed away on June 28, 2023, leaving behind a multigenerational legacy of inclusion. Senator Weicker was a parent of a child with Down syndrome and wanted more for our society and his son’s future than isolation and segregation. He knew firsthand that people with disabilities have diverse and rich perspectives and talents and they deserve a place in society alongside everyone else. He bridged the divides of parties, influencing his fellow members of Congress to consider disability rights as a bipartisan issue, an impact that is felt to this day.

The Arc appreciates the critical role Senator Weicker played in the development and funding of major disability programs through his chairmanship of key Senate subcommittees. He used his position to investigate and hold influential hearings on the treatment of people with intellectual and developmental disabilities, mental illness, and other disabilities in institutions at that time, laying the groundwork for future reforms. As Senator Weicker stressed in his address to Congress, “Disabled persons may represent a minority in this country, but they are a minority any of us may join at any time… you can secure to [my son] and his 43 million peers a happiness that only comes with love equally devised and administered.”

We are in awe of Senator Weicker’s courage and persistence in fighting to get groundbreaking disability rights legislation into law, as well as his ongoing advocacy for the independence and inclusion of people with disabilities.

The Arc logo

Disability and Aging Groups Join Senator Bob Casey and Hundreds of Care Advocates for a Save Medicaid Online Rally

/in /by The Arc

Washington, DC —Disability and aging groups were joined by Senator Bob Casey, care advocates, and nearly 500 activists from around the country for a Save Medicaid Online Rally on May 24. During the rally, attendees sent demands to Congress to stop any cuts to Medicaid, an essential program that 88 million Americans rely on for their health care, including 54 million older adults, children, and people with disabilities.

The rally, hosted by The Arc of the United States, Autism Society of America, Disability and Aging Collaborative (DAC), Consortium for Constituents with Disabilities (CCD), and Caring Across Generations, served as an opportunity for supporters to learn more about the harmful effects of work requirements and program cuts against Medicaid included in the Default On America Act. This rally is one of many actions supporters and care advocates across this country are participating in to save Medicaid, including last week when Caring Across Generations delivered 12,000 petitions and The Arc of the United States delivered 86,000 petitions demanding Congress put a stop to harmful cuts.

“Let’s call it like it is: the Default On America Act will directly harm millions of families across this country. I find it alarming that this extreme proposal will take Medicaid away from millions who do not meet new bureaucratic work requirements, including people who have a hard time finding work, such as family caregivers, older people over 50, and disabled people,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations. “This plan puts a false choice in front of us: take care away from families, children, older adults, and disabled people or force a default that will disrupt Social Security checks and raise interest rates on credit cards, mortgages, and car payments. There is a better way: raise the debt ceiling cleanly and invest in the care we need by making the ultra-wealthy and big corporations pay their fair share.”

“Medicaid is a lifeline for people with disabilities, and its underfunding has already created a crisis of care,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Many people with intellectual and developmental disabilities (IDD) have serious medical needs and already face barriers to accessing safety net programs and our health care systems. Millions of them are falling through the cracks right now because these complex systems have overwhelming red tape and years-long wait lists. Adding work requirements to Medicaid will only exacerbate disparities and discrimination against people with IDD and jeopardize their access to life-sustaining health care and community living.”

“The stakes have never been higher,” stated Christopher S. Banks, President and CEO of the Autism Society of America. “Cutting Medicaid will further exacerbate the current unacceptable waiting lists for services and support for people with Autism. Understandably, aging parents and caregivers have intense anxiety surrounding the fears of what will happen to their family members after they are gone. We must create equitable and accessible health care for Autistic individuals and the greater disability community.”

According to Carol Tyson, Chair of the Consortium for Constituents with Disabilities, “People with all types of disabilities rely on Medicaid for access to critical health care, and services and supports to live in, and contribute to the community. The evidence is clear that Medicaid work requirements are not effective. Medicaid work requirements would create unnecessary barriers and result in millions of the already underserved facing life-threatening cuts to essential coverage. Congress must prioritize the health and well-being of people with disabilities, and all those who rely on Medicaid and essential programs, by rejecting proposals that would cut Medicaid funding, impose work requirements, or restrict access to care.”

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About Autism Society of America: The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit autismsociety.org.

About Disability and Aging Collaborative: The Disability and Aging Collaborative (DAC) is a coalition of approximately 40 national organizations that work together to advance long-term services and support policy at the federal level. Formed in 2009, the DAC was one of the first coordinated efforts to bring together disability, aging, and labor organizations.

About Consortium for Constituents with Disabilities: The Consortium for Constituents with Disabilities (CCD) is the largest coalition of national organizations working together to advocate for Federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society free from racism, ableism, sexism, and xenophobia, as well as LGBTQ+ based discrimination and religious intolerance.

About Caring Across Generations: Caring Across Generations is a national organization of family caregivers, care workers, disabled people, and aging adults working to transform the way we care in this country so that care is accessible, affordable and equitable— and our systems of care enable everyone to live and age with dignity. To achieve our vision, we transform cultural norms and narratives about aging, disability and care; win federal and state-level policies; and build power amongst the people touched by care. For more information, visit caringacross.org.

A photo of a woman holding a spoon close to her mouth and laughing

Independence Can’t Wait: New Bill in Congress Championed by The Arc Will Make Home and Community-Based Services Available to All

/in , , , , , , , /by The Arc

Washington, D.C. – As the nation continues to face a pandemic that has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions, today Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with intellectual and developmental disabilities (IDD) and older adults live their lives.

The Home and Community-Based Services Access Act (HAA) is a discussion draft bill that would eventually end waiting lists to receive disability services everywhere and help people with disabilities and older adults access the Medicaid home and community-based services (HCBS) they need in order to live at home in their communities with their friends and family, instead of institutions and nursing homes. Today, there are nearly 850,000 people on waiting lists across the country. People with disabilities and their families often wait years—sometimes decades—to access these services.

“For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports. We believe that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in the institutions that to this day, exist in 36 states. Yet this country has treated access to the services that help people with disabilities gain independence as an option, not a right. As we have seen in the COVID-19 pandemic, this puts people in grave danger. The Arc is leading the charge to change this reality,” said Peter Berns, CEO, The Arc.

People with disabilities and older adults often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are only available through a part of Medicaid called home and community-based services, or HCBS.

Many state Medicaid programs have long waiting lists for HCBS. And these lists don’t capture those who may not know there is a list to be on, or what services are available. Why the wait? Medicaid is required to cover health care services, provided by doctors and hospitals, as well as many institutional services, such as nursing homes and long-term care facilities for people with disabilities without any waiting lists. But states are allowed to treat HCBS as optional – even though they are anything but to people with intellectual and developmental disabilities and their families. This is the “institutional bias” in Medicaid – and The Arc has been advocating to change this for decades.

The bill tackles another decades-long problem – low pay for direct support professionals, or DSPs – the people who provide the services to people with IDD and older adults. DSPs are disproportionately women of color, doing critical tasks that support people with disabilities with taking medications, bathing, eating, getting out into the community, and more.  Due to low wages, there is more than 50% turnover annually, and the average wage is less than $11/ hour, making it difficult to provide continuity in services, provide a family sustaining wage, and threatening the quality of care.  The bill will require states to ensure that the direct care workforce is paid a family sustaining wage.

And finally, this legislation addresses an issue people with disabilities and their families face once they are getting services. Often, they end up stuck in one place, tied to Medicaid-funded services in one state that can’t be transferred over state lines. This lack of portability stops adults with disabilities from moving to be closer to their siblings or other family members, when their parents with whom they live can no longer support them or pass away. It leaves parents and siblings of people with disabilities desperate due to the lack of availability of services and long waiting lists, to get what their loved one need in another state.  The problem is particularly hard for military families that move frequently.

The HAA solves these problems by increasing Medicaid funding to states for HCBS, establishing a basic set of services that all states must provide, and providing other tools to help states build the capacity that they need to serve all people who need HCBS.

“Our goal is for people with intellectual and developmental disabilities to have timely access to the quality supports and services they need and want to achieve a life of personal significance. This legislation provides real solutions to problems that have persisted for decades, and people with disabilities, their families, and the staff that support their lives can’t wait any longer. We thank the bill’s lead sponsors – Senators Hassan, Brown and Casey, and Representative Dingell, for their commitment and persistence in solving these problems that inhibit the lives of millions of people with disabilities and their family members,” said Berns.

For more information on HCBS and resources, visit thearc.org/medicaidcantwait.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.