A young man with autism standing in front of trees wearing an orange shirt that says "Disability Rights Are Human Rights"

The ADA at 35: A Legacy Worth Celebrating and Defending

/in , /by Jackie Dilworth

Statement from Katy Neas, CEO of The Arc of the United States on the 35th Anniversary of the Americans with Disabilities Act

The Americans with Disabilities Act reshaped this country for the better. For the first time, people with disabilities had legal protections against discrimination and exclusion. It created a framework for access and sent a clear message: disabled people belong in every part of community life.

I was a young Senate staffer in 1990 and had the opportunity to work on the ADA. I’ve spent the last 35 years working to uphold its promise. And I’ve never seen a more urgent moment than this one.

In the same month we mark this milestone, the federal government passed a budget that cuts nearly $1 trillion from Medicaid, a program that is the very foundation for inclusion. It helps people live at home, go to school, get basic health care, and contribute to their communities. At the same time, the Department of Education is being dismantled, leading to fewer staff enforcing special education laws. The Department of Energy is eliminating a longstanding rule that ensures new federally funded buildings are physically accessible. And slurs like the R-word are back in mainstream conversation, a huge step backward in basic decency and respect.

These are not isolated developments. Together, they show a national, coordinated pattern of erosion. Protections are being stripped. Services are being cut. And people with disabilities are being pushed back out.

This is exactly what the ADA was meant to prevent. When Congress passed the law in 1990, it found that “discrimination against individuals with disabilities persists in critical areas.” The ADA’s purpose was clear: to provide “a clear and comprehensive national mandate for the elimination of discrimination.” It also set a vision, one that is still relevant today: “equality of opportunity, full participation, independent living, and economic self-sufficiency.”

Yet 35 years later, those goals remain out of reach for far too many. And the very systems meant to protect them are being weakened. It’s no coincidence that disabled people are still fighting for access to education, employment, health care, and opportunity. This world wasn’t built with them in mind—so they’ve had to lead, build, and demand what others take for granted.

So we must ask: Who are we designing our society for? Who do we include, and who do we keep leaving behind? And what are we all missing because of it?

When people with disabilities are not at the table, we lose out on leadership, insight, and solutions. Inclusion is how we build stronger schools, smarter policy, more responsive workplaces, and communities that work for everyone.

The ADA was never the finish line; it was the floor. And right now, that foundation is being weakened by budget cuts, deregulation, stigma, and silence. It’s our job to bring it to life in ways that include everyone.

The Arc and our nearly 600 chapters nationwide are working every day to defend the ADA and build the future it promised. We are fighting for civil rights, community services, inclusive schools, access to health care, and respect. We were there when the ADA was written, advocating side-by-side with self-advocates and families to demand equal rights. And we’ve been there every step of the way since, holding the line, advancing progress, and insisting that the law’s promise becomes real in people’s lives.

Disability is a natural and valuable part of human diversity. It is also the one group any of us can join at any time. That means this fight is not just about disabled people, it is about all of us.

We cannot afford to turn away from these threats. A society that excludes people with disabilities will eventually exclude many more. Inclusion is one of the clearest ways we show who matters in our society. Let’s make sure our actions match our values.

A woman holding a sign that says "I am Medicaid. Don't cut me!" while standing in front of the U.S. Capitol in Washington, DC

An Important Update on the Medicaid Fight

/in /by Jackie Dilworth

The Senate just passed the budget bill, and it’s bad. The bill includes:

  • Nearly $1 trillion in Medicaid cuts. That’s about 20% of the federal Medicaid budget. It would cause nearly 17 million people to lose coverage.
  • Nearly $200 billion in cuts to SNAP. Less food assistance means more people will go hungry, including millions of kids.
  • A new private school voucher program that redirects public education funding to private schools. This will make it even harder for children with disabilities to access essential special education services.

Take action now to help us protect the very foundation of care and services!

What’s next? The Senate and the House must agree on a final bill to send to the President for his signature.

“This isn’t over yet, but this is serious, and we need your help,” said Katy Neas, CEO of The Arc of the United States. “With your calls, emails, and texts, we can still reach the hearts and minds of members of Congress on what these cuts will mean for people with disabilities and their families.”

We must stop these devastating cuts before it’s too late!

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.

The Arc logo

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

/in /by The Arc

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 – direct from Dr. Aditi Mallick, Acting Director of the CMS Office of Minority Health.

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

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.