Sexual Violence and Disability: How Health Care Providers Can Respond Better

/in , /by The Arc

People with intellectual and developmental disabilities (IDD) face disproportionately high rates of sexual assault, yet too many health care providers are still not trained to respond well when survivors come forward. The Arc’s Transforming Health care Project is working to change that.

April is Sexual Assault Awareness Month, a time to confront a reality that doesn’t get nearly enough attention: people with IDD are sexually assaulted at seven times the rate of people without disabilities. Health care settings should be places where survivors are met with safety, clarity, and support. Too often, they’re not.

When health care providers aren’t trained to communicate accessibly, recognize abuse, or respond in trauma-informed ways, survivors with disabilities can be dismissed, misunderstood, or left without the support they need. That’s not just a training gap. It’s a health care access gap.

That’s where The Arc’s Transforming Health Care Project comes in. Through The Arc’s National Center on Criminal Justice and Disability, in partnership with the World Institute on Disability (WID) and chapters of The Arc in Massachusetts, Oregon, and Philadelphia, the project is examining how health care training can better prepare providers to respond to sexual violence against people with IDD. The project is also seeking to ensure that people with lived experience are leading training efforts within health care. The goal is straightforward: help build health care systems where people with disabilities are believed, respected, and supported.

Why Health Care Response Matters

Sexual violence is already underreported. For people with disabilities, the barriers can be even higher. Some survivors may not have been taught what sexual violence is. Some may not have the language to describe what happened. Some may fear they won’t be believed. And some may have already experienced a lifetime of being talked over or dismissed in medical settings. When providers are unprepared, those barriers grow.

This isn’t about blaming individual clinicians. Most providers enter health care because they want to help people. But they work in systems shaped by short appointments, productivity demands, and uneven training. In those conditions, signs of abuse can be missed. Disclosure can be mishandled. A survivor may finally speak up and still leave without real support because the system wasn’t built to meet the moment.

For survivors with disabilities, that failure can have lasting consequences. A health care visit may be one of the few places where someone has the chance to disclose abuse, ask for help, or begin to feel safe. When that moment is missed, the harm doesn’t end with the appointment.

What The Arc’s NCCJD Is Doing

The Transforming Health Care Project is focused on changing how providers are trained, so they’re better equipped to respond when patients with disabilities disclose sexual violence. The project is assessing existing health care training programs and developing recommendations grounded in three priorities: cultural humility, sexual violence awareness, and leadership by self-advocates. The project is developing guidelines that will promote cultural humility, people with IDD as co-trainers, and safe, respectful, inclusive health care.

That matters because better care starts with better preparation. Providers need tools that help them communicate clearly, slow down when needed, respond without assumptions, and create conditions where patients with IDD can share sensitive experiences safely. They also need to understand that people with disabilities are the experts in their own lives and should direct their own care.

As Dawn Skaggs, Chief Programs Officer at the World Institute on Disability, shares, “This work centers the leadership and lived expertise of people with disabilities and moves us closer to a health care system that is truly accessible and inclusive.”

Led by People With Disabilities and Survivors

Taylor Woodard, on the far left, poses with three other women at a table during a professional event, smiling at the camera.What sets this project apart isn’t just the subject matter. It’s the leadership model.

People with IDD aren’t being treated as subjects of reform. They’re helping lead it. The Transforming Health Care Project is guided by a 12-member advisory board co-led by two people with disabilities, including a person with IDD who is a sexual assault survivor. The board brings together people with IDD, survivors of sexual abuse, and health care professionals. Advisory board members with IDD are compensated for their time and expertise, reinforcing a simple but too often overlooked truth: lived experience is expertise.

Members do much more than review materials. They are shaping recommendations, challenging assumptions, and helping define what respectful care should actually look like in practice. That means the final guidance will not be built around theory, but around actual lived experience. It will reflect the experiences of people who know firsthand what it means to seek care, disclose abuse, and navigate systems that were not designed with them in mind.

Taylor Woodard sits on a mobility scooter on a city sidewalk, smiling over her shoulder at the camera. She's wearing a denim jacket and blue headphones, with a floral tote bag hanging from the scooter

Taylor Woodard

One of the project’s co-facilitators is Taylor Woodard, Manager of Information & Referral at The Arc of the United States. Taylor, who has a developmental disability, explains the significance of that space: “I truly value being part of a team bringing the health care challenges and concerns of a community that has historically been overlooked by the medical profession to the forefront. I leave each meeting knowing our members feel listened to, some for the first time in their lives.”

For many advisory board members, being heard in a setting where decisions are actively being shaped is new. Taylor emphasizes that leadership must remain central to lasting change: “Disability justice initiatives must be directed by people with disabilities. Centering disabled leadership is the only way we will obtain equality alongside our fellow citizens without disabilities.”

What Change Could Look Like

The long-term goal of this project is better care when it matters most.

When the final guidelines reach the health care community, the hope is that providers will be better prepared to listen, respond appropriately, and respect the autonomy of patients with IDD who disclose sexual violence. That includes communicating clearly, taking disclosures seriously, and recognizing that survivors with disabilities shouldn’t have to fight to be believed or to direct their own care.

Fran Hladysz stands in front of a brick wall with colorful graffiti, leaning casually and smiling slightly at the camera.

Fran Hladysz

Taylor puts it this way: “When medical professionals read the guidelines and realize how much people with disabilities want to direct their health care, I hope they will quickly integrate the advisory board’s recommendations into their practice. I also hope they will listen to and respect people with IDD, or anyone for that matter, who comes forward to report sexual violence.”

Advisory board member Fran Hladysz, a person with IDD and a survivor of sexual abuse, also points to the importance of inclusion across disability experiences: “Just because I have a disability, that doesn’t mean you should treat me differently or less. I like that [the Transforming Health Care Project] involves all different types of disabilities because we need to make sure that we get the best treatment that’s possible for us and the best health care.”

The Transforming Health Care Project advisory board is also being positioned as a public-facing force in health and hospital coalition work, offering a model other organizations can learn from. As Taylor noted, “The Arc has provided a model for elevating leaders with IDD that other organizations can and should replicate.”

Why This Work Cannot Wait

Sexual Assault Awareness Month shines a light on sexual violence each April, but this work can’t begin and end with one month of attention. People with disabilities deserve health care systems that are ready to meet them with dignity all year long. They deserve providers who know how to respond. They deserve to be heard the first time.

The Transforming Health Care Project guidelines are expected to be released in fall 2026. They will reflect the leadership, expertise, and lived experience of the people most directly impacted and lay the groundwork for more responsive health care practices.

Meaningful change in health care will take more than awareness. It will take training, accountability, and a willingness to rethink who gets treated as an expert. This project starts from the right lens: people with disabilities and survivors are not at the margins of the solution. They’re leading it.

Need help now? The Arc’s NCCJD offers resources on talking about sexual violence with people with IDD. Please contact us by filling out this form or email us at NCCJDinfo@TheArc.org. If you or someone you know has experienced sexual assault, RAINN’s National Sexual Assault Hotline is available at 800-656-HOPE (4673) and an online chat is available 24/7.

Frequently Asked Questions

What is The Arc’s Transforming Healthcare Project?
It is a project led by The Arc’s National Center on Criminal Justice and Disability, in partnership with the World Institute on Disability and several Arc chapters, to improve how healthcare providers respond to sexual violence against people with IDD.

Why does this project matter?
People with IDD face disproportionately high rates of sexual assault, but healthcare systems are often not prepared to respond well when survivors disclose abuse.

Who is shaping the recommendations?
Self-advocates, survivors of sexual violence, and healthcare professionals are helping lead the work through a 12-member Advisory Board.

What will the project produce?
The project will produce guidelines to help healthcare professionals respond in safer, more respectful, and more accessible ways.

When will the guidelines be released?
They are expected in fall 2026.

Red, white, and blue stickers that say "I Voted."

The SAVE America Act Threatens Accessible Voting for People With Disabilities

/in /by Jackie Dilworth

As Congress debates the SAVE America Act, people with disabilities have reason to be alarmed. The bill would require in-person proof of citizenship to register to vote in federal elections, government-issued photo ID that matches current name and address for in-person voting, and copies of photo ID with mail-in ballots. For voters with disabilities, that means new barriers at every stage of the voting process.

The reality is that too many people with disabilities face real barriers to voting. A Government Accountability Office study found that 60% of polling places had barriers for voters with disabilities, and 65% had voting stations that weren’t set up to allow a private and independent vote. Federal law mandates that voters with disabilities must have a full and equal opportunity to vote, including during registration, at the polling place, and through early or absentee voting.

Mail voting and accessible voting technology aren’t simply conveniences for people with disabilities. They’re civil rights. In the 2020 election, more than half of voters with disabilities cast their ballot by mail. The SAVE America Act would severely restrict mail registration and force online voter registration systems to be overhauled to meet its new requirements. Millions of Americans rely on those options to make their voices heard. Federal guidance makes clear that vote by mail must be accessible. When lawmakers add new in-person paperwork, photo ID requirements, or other hurdles to mail voting and registration, they risk shutting out voters who can’t easily travel, print, copy, scan, or navigate inaccessible systems.

Courts have ruled that systemic barriers preventing voters with disabilities from casting ballots are illegal. The Americans with Disabilities Act covers voter registration, polling places, and absentee voting. The Help America Vote Act requires accessible voting systems so voters with disabilities can cast a ballot with the same privacy and independence as others. The Voting Rights Act protects the right of voters with disabilities to use an assistor of their choice. The Arc has fought and won challenges against laws that restricted in-person and mail-in voting, and we’ll continue to challenge attempts to suppress the disability vote.

But statistics and legal protections only tell part of the story. Voters with disabilities live these barriers every election.

  • Lydia, who has muscular dystrophy, told us: “I think it really boils down to whether people believe that disabled people or any people from marginalized groups are deserving of the full benefits of democracy. We’re all interconnected. And I think that’s the promise of democracy—we all get to enjoy the same basic human rights and privileges as everyone else.” Lydia prefers to vote in person but needs the option to vote by mail when her specialized mobility equipment isn’t working properly.
  • Danielle, who has autism, dyslexia, and dysgraphia, has difficulty voting because she is sensitive to abrupt changes or alterations to routine. As Danielle’s mother, who assists her with voting, shared: “My daughter just needs a little more help, but she can vote. It’s her constitutional right… She wants to practice her civic duty, and she should be able to vote… People with disabilities are a part of our community and the fabric of our lives. They need to be heard.”
  • Ralph has Chronic Inflammatory Demyelinating Polyneuropathy and was hospitalized due to this condition for 6 months. Vote by mail was the only option available to him because he couldn’t leave the hospital during treatment.
  • Laura has Limb Girdle muscular dystrophy and chronic muscular respiratory failure. It’s important for her to have access to different methods of voting because her ability and energy levels fluctuate daily. It’s also much safer for her to vote by mail since she’s immunocompromised.

People with disabilities are one of the largest voting blocs in the country. One in 6 eligible voters has a disability, and 1 in 3 eligible voters has a disability or lives with someone who does. When voting is accessible, participation rises. When it’s not, people with disabilities are pushed out of decisions that shape their health care, education, housing, transportation, employment, and community living. Their votes aren’t optional, and their participation isn’t secondary.

If a bill makes it harder for people with disabilities to register, vote by mail, or cast a ballot privately and independently, it’s moving this country in the wrong direction and violating federal laws. The Arc will continue to fight in courtrooms, Congress, and communities nationwide until every voter with a disability can cast a ballot that’s accessible, private, and counted.

SAVE America Act FAQ: What Voters With Disabilities Need to Know

What is the SAVE America Act?
The Safeguard American Voter Eligibility (SAVE America) Act is the federal voting bill now being debated in Congress. It would require in-person proof of citizenship to register to vote in federal elections, government-issued photo ID for in-person voting, and copies of photo ID with mail-in ballots. Some people may still refer to an earlier version of this proposal as the SAVE Act.

How would the SAVE America Act affect voters with disabilities?
It would add new steps to registration, in-person voting, and vote by mail in a system that is already too inaccessible for many voters with disabilities. The bill includes an accessibility provision, but it is limited and does not include a clear enforcement mechanism. Federal law requires equal access to all parts of voting, including absentee voting.

Does the SAVE America Act affect mail-in voting?
Yes. The bill would require copies of photo ID with mail-in ballots, and the current debate around the bill has also included proposals to narrow mail voting further. That matters because voters with disabilities are more likely to rely on voting by mail, and mail voting must be accessible.

Why are election officials and disability advocates concerned about implementation?
The SAVE America Act would take effect immediately, gives the Election Assistance Commission just 10 days to issue guidance, and provides no funding for states to make the required changes. That rushed timeline raises serious concerns about confusion, administrative errors, and whether accessible systems would be implemented well enough to protect voters with disabilities.

Why do voters with disabilities rely on mail voting and accessible voting machines?
Because many polling places still present physical and technological barriers, and accessible voting systems plus mail voting can be the difference between having a private, independent vote and not being able to vote at all.

What laws protect the voting rights of people with disabilities?
Key protections include the Americans with Disabilities Act, the Help America Vote Act, the National Voter Registration Act, the Voting Accessibility for the Elderly and Handicapped Act, and the Voting Rights Act.

A man with disabilities stands indoors at a busy event space holding a sign that reads “I’M VOTING BECAUSE… it’s my voice!” The sign has The Arc logo in the top left and the hashtag #REVUP in the bottom right.

Voter 101: Why Voting Matters to People With Disabilities

/in /by The Arc

What Is Voting?

Voting is how people make choices together. When you vote, you say what you want. We vote for people who want to lead our country, state, and city. These people are called candidates. When they win, they become elected officials.

Elected officials make choices about our lives. They decide how programs work. This includes Medicaid, Supplemental Security Income (SSI), education, housing, and transportation. When you vote, you help choose who will speak for the disability community.

Visit TheArc.org/Vote for more information about voting, including resources about guardianship and voting, tips for helping someone vote, what to do if your voting rights are denied, and more.

Why Does Voting Matter?

Laws and rules affect people with disabilities every day. Voting helps make sure leaders hear you.

People with disabilities vote less often than people without disabilities. This is called the voting gap. The gap exists because voting can be hard. Polling places may not be accessible. Rules can be confusing. Some people do not get the help they need.

When people with disabilities get clear information and support, more people vote. When more people vote, leaders pay attention. Voting helps close the gap.

Your Right to Vote

People with disabilities have the right to vote. You can vote privately and independently. Laws like the Americans with Disabilities Act and the Help America Vote Act support this right. These laws help make polling places accessible. They allow voting tools and help from a person you trust or a poll worker if needed.

Who Can Vote?

You can vote if you:

  • Are a U.S. citizen
  • Are 18 or older by Election Day
  • Live in the state where you vote
  • Register by your state’s deadline

Some people think people with disabilities cannot vote. That is not true. People with disabilities can and do vote.

Some people may not be able to vote, like non-citizens, some people with guardians, or some people with past convictions. Rules vary by state. If you are not sure, check with your local election office.

How Do You Register to Vote?

Each state has its own rules. You must register by your state’s deadline. You may need your name, address, Social Security number, and/or a state or government identification (ID).

You can check or update your registration on The Arc’s online Election Center. If you move or change your name, make sure to update your registration.

You can ask for help. A friend, family member, or support worker can help you register.

Remember: Voting is powerful. When you vote, you help shape your future and your community.

Three people with and without disabilities stand outdoors in front of the US Capitol, smiling and holding protest signs. The signs read "We Vote!," "Equity," "Disability Rights Are Human Rights," and "Stop Discrimination Now."

2026 Disability Advocacy: What We’re Watching & How to Help

/in , /by The Arc

Important decisions about programs for people with disabilities are happening right now. Congress is closely divided, so every action and message can make a difference. Here’s what we’re watching this spring and how you can help.

Federal Funding for Disability Programs

Every year, Congress decides how much money federal programs get.

Our policy team watches what Congress and the President want to spend money on. This includes:

  • Developmental Disability Act programs
  • Special education
  • Housing
  • Other important services

We want to make sure that the programs that people with disabilities and their families rely on stay strong.

Key Bills to Watch

Some bills in Congress could make a big difference for people with disabilities:

  • SSI Savings Penalty Elimination Act: This bill would update the rules for Supplemental Security Income (SSI) and end marriage penalties for people who get SSI. These rules haven’t changed in almost 40 years.
  • Direct Support Professional (DSP) Recognition: This bill would improve federal data on DSPs, the people who help individuals with disabilities at home and in the community. Better data could help solve workforce shortages.
  • Money Follows the Person: This program helps people move from institutions into community homes. It must be renewed to continue. We want it to keep helping people live in their communities.
  • Keeping All Students Safe Act (KASSA): This bill would ban seclusion and dangerous restraints in schools. It now has support from both parties in the House, which is an important step forward.

Education: A Critical Issue in 2026

Education policy is a major focus this year.

  • Lawmakers are talking about moving the Office of Special Education Programs (OSEP) out of the Department of Education. This could weaken how the government enforces the Individuals with Disabilities Education Act (IDEA). We are working with officials to keep strong oversight.
  • A new federal voucher program lets states choose to participate. Students who use vouchers may lose IDEA protections. Families need clear information before making decisions.

State-Level Changes to Medicaid and SNAP

Federal changes to Medicaid and SNAP passed last year. Now, each state is deciding how to put them into action. The Arc is working with our chapters to:

  • Track what happens in each state
  • Share state-specific information
  • Support local advocacy
  • Local decisions can affect communities quickly, so getting involved at the state level is important.

Ways to Get Involved in 2026

Start advocating early and often this year. Acting early is especially important because many decisions will happen by July due to midterm elections.

Here are a few ways you can help:

  • Use our Action Center to advocate for federal issues.
  • Connect with your state or local chapter of The Arc to address Medicaid and SNAP changes.
  • Contact your members of Congress or state lawmakers in person or online. Use this toolkit to make it easier.
  • Vote! One of the biggest ways to advocate is by voting for leaders who will make the decisions you want them to make about schools, jobs, health care, and daily life. Make sure you register and are ready to vote.

Every action matters. Together, we can protect rights, services, and opportunities and make sure the disability community is strengthened in 2026.

Written by: Jenny Alexander, Director, National Initiatives

A diverse group of young adults with disabilities stand together in a circle with their heads close, smiling. The view point is looking up at them from inside the circle.

Developmental Disabilities Awareness Month: 2026 Theme & Ways to Act

/in /by The Arc

Developmental Disabilities Awareness Month is observed every March to recognize people with developmental disabilities, celebrate inclusion, and spotlight the barriers that still block full participation in community life. The month traces back to a 1987 presidential proclamation calling the nation to increase awareness of the needs and potential of Americans with developmental disabilities.

Key Takeaways

  • Developmental Disabilities Awareness Month happens every March.
  • The 2026 theme is “We’re Here: Then, Now, Always.”
  • You can take action by donating, volunteering, and sharing accurate information and stories (with consent).

What Is a Developmental Disability?

A developmental disability is a lifelong condition that can affect learning, language, mobility, or independent living. Developmental disabilities occur in every community and across all backgrounds.

The Big Picture

Here’s what drives us at The Arc: the fundamental belief that everyone deserves to write their own life story. That means real access to education, meaningful employment, quality health care, and genuine community connections. Too many barriers still stand in the way of these basic rights. This month, we’re making more space for self-advocates and families to share what needs to change, and what real inclusion looks like.

History

The roots of Developmental Disabilities Awareness Month trace back to 1987, when President Ronald Reagan proclaimed March 1987 as National Developmental Disabilities Awareness Month.

2026 Theme: “We’re Here: Then, Now, Always”

This year’s national theme from the National Association of Councils on Developmental Disabilities (NACDD) is “We’re Here: Then, Now, Always.” It connects past, present, and future, recognizing progress, naming what’s still at risk, and reinforcing that community living and inclusion must be protected and funded.

What We’re Doing

Change happens when people come together, and that’s what The Arc’s nationwide network does every day. This month, we’re sharing stories from people with developmental disabilities and their families that reflect real life: goals, barriers, pride, and the supports that make inclusion possible.

There’s Marcus, whose job search shows how talented, dedicated workers face discrimination. Lawrence, who’s showing the world what’s possible for athletes with disabilities. Ashley, who’s revolutionizing how we think about diversity and inclusion. Steve, who shows us that people with disabilities thrive when they can live independently in their communities, not institutions. Carlos, who persevered through immigration, bullying, and discrimination to graduate college and build his accounting career. And Mitch, whose voice on our board helps shape how we support people with disabilities.

Three Ways to Take Action

“Segregation and discrimination still cast an ugly shadow over the lives of millions of people with disabilities. This month, we must elevate the leadership and priorities calling for true inclusion—in our schools, workplaces, and communities. When we follow self-advocates’ lead and remove unfair barriers, communities get stronger for everyone.” – Katy Neas, CEO of The Arc

Frequently Asked Questions

What is Developmental Disabilities Awareness Month?
It’s observed every March to recognize people with developmental disabilities, celebrate inclusion, and highlight barriers that still exist.

When is Developmental Disabilities Awareness Month?
Every March.

What is the 2026 DDAM theme?
“We’re Here: Then, Now, Always.”

What is a developmental disability?
A lifelong condition that can affect learning, language, mobility, or independent living.

How can I support DD Awareness Month?
Learn, share accurate resources, support disability-led leadership, volunteer locally, and donate if you’re able.

A picture of coins spread out on a table with a green plant growing out of it

ABLE Accounts Expanded on January 1, 2026: New Age 46 Eligibility, Higher Limits, and How to Open One

/in /by Jackie Dilworth


If you get Medicaid, Supplemental Security Income (SSI), or other supports tied to income and assets, saving money can feel risky.

An Achieving a Better Life Experience (ABLE) account is a tax-advantaged savings account for people with disabilities. It lets you save for disability-related expenses and, in most cases, keep benefits like SSI and Medicaid. It can also help protect access to other means-tested supports, like SNAP.

Major changes took effect on January 1, 2026. If your disability began before age 46, you may now qualify. The annual contribution limit also increased to $20,000.

In this guide, you’ll learn what changed, who qualifies, what you can spend the money on, and how to open an ABLE account.

Start here: Do I qualify for an ABLE account in 2026?

You may qualify if:

  • Your disability or blindness began before age 46, and
  • It has lasted, or is expected to last, at least one year

Good to know:

  • There are no income limits to open an ABLE account.
  • You can be any age now. What matters is when your disability began.
  • You can only have one ABLE account per person.

What is an ABLE account?

ABLE stands for Achieving a Better Life Experience. ABLE accounts were created by a federal law passed in 2014, thanks in part to The Arc’s advocacy.

An ABLE account is designed for one main purpose: so people with disabilities can save money and build assets without losing benefits.

How do ABLE accounts work?

People usually want to know three things: Is it tax-free? Will it affect my benefits? What can I use it for? Here’s what you should know:

  • You put money into the account after taxes.
  • Your savings can grow tax-free.
  • You can take money out tax-free when you spend it on qualified disability expenses.
  • ABLE savings are generally treated differently than a regular bank account for SSI and Medicaid.

Why this matters: To qualify for need-based federal benefits like SSI, a person often can’t have more than $2,000 in countable resources outside limited exceptions. That makes it hard to plan for a more stable life.

ABLE accounts are one way to save without triggering the same rules as a regular savings account.

Read more: Social Security and Income Maintenance

What changed on January 1, 2026?

  1. The age rule expanded
    As of January 1, 2026, you may open an ABLE account if your disability began before age 46. This is an increase from the original threshold age of 26.The National Disability Institute projects about 6 million more people will qualify. Recent reporting has also cited estimates that eligibility may grow to about 14 million people, up from about 8 million.Key takeaway: People of any age can open an ABLE account, as long as the disability began before age 46.
  2. The annual contribution limit increased
    The annual contribution limit in 2026 is $20,000. Anyone can contribute, including family, friends, and employers.

Who qualifies for ABLE accounts in 2026?

You may qualify if:

  • You have a disability or blindness that has lasted, or will last, at least one year, and
  • Your disability began before age 46

Only one ABLE account per person is allowed.

How is eligibility documented?

Many people qualify in one of these ways:

  1. You receive Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) or Disabled Adult Child (DAC) benefits
    If you receive SSI or other Social Security disability benefits, the path is often simpler.
  2. You don’t receive SSI, SSDI, or DAC
    You can qualify with a signed certification from a licensed physician stating your disability began before age 46 and meets program rules. The ABLE National Resource Center provides a sample form you can share with a doctor.

How much can you contribute in 2026?

Standard annual limit: $20,000

Can I contribute more if I work?

Maybe. ABLE-to-Work lets some working account owners contribute above the standard annual limit. Under recent updates, this feature is now permanent.

Eligible employed account owners may contribute up to $34,064 annually. The extra amount varies by state and work situation, and is higher in Alaska and Hawaii. Income counts towards Substantial Gainful Activity (SGA) and affects benefits the same as it always has, even when it is directly deposited into an ABLE account.

How much money can I keep in my ABLE account?

States set overall limits on how much can be in an ABLE account, ranging from about $235,000 to $675,000.

If you receive SSI, there is an important cap to know: Up to $100,000 in an ABLE account is excluded from SSI asset limits. If an ABLE account exceeds $100,000, when combined with all countable resources, your SSI benefits will be suspended until funds are spent down to under the resource limit.

What ABLE account features became permanent in 2026?

These changes were made permanent under recent updates:

  1. ABLE-to-Work
    Some working account owners can contribute above the standard annual limit.
  2. Saver’s Tax Credit
    ABLE account owners who work and contribute to their own account may be eligible for the Federal Saver’s Tax Credit.
  3. 529 Rollovers
    Funds from a 529 Education Savings Account can roll over into an ABLE account, within annual limits.

What can you spend ABLE money on?

ABLE funds can be used for qualified disability expenses, including:

  • Housing (rent, mortgage payments, utilities)
  • Basic living costs, including groceries
  • Health and medical expenses
  • Transportation, public transit, and car repairs
  • Education and employment training
  • Personal support services
  • Assistive technology (including mobility equipment)
  • Legal fees
  • Wellness programs

There is no age limit on withdrawals.

If distributions are used for non-qualified expenses, the earnings portion may be taxable and may face a 10% penalty.

How do I open an ABLE account?

Most ABLE accounts are opened through state programs. Many plans accept out-of-state residents, but not all do.

Step 1: Confirm the age-of-onset rule

Did your disability begin before age 46?

Step 2: Gather what you need

  • If you receive SSI, SSDI, or DAC, have your information ready.
  • If you don’t, schedule a visit with a doctor who can complete the required certification.

Step 3: Choose a plan

Start with your own state plan, if your state offers one. Some states don’t have ABLE programs, including:

  • North Dakota
  • South Dakota
  • Wisconsin

Many plans are open to out-of-state residents. You can also transfer your account between state plans.

Step 4: Pick the features that fit your life

When comparing plans, look for:

  • A debit card option, if you need easy access for everyday spending
  • A mobile app
  • Cash account interest rates
  • Investment options if you are saving for longer-term goals

Step 5: Open the account

Most plans open accounts online. Some plans allow mail-in applications. Some plans don’t require an initial deposit, but the average initial deposit is about $25.

Are there any downsides to an ABLE account?

ABLE accounts can be powerful, but they’re not perfect.

  • Some plans are online-only. If internet access or forms are a barrier, look for plans with paper applications or ask a trusted person to support you through the steps.
  • Withdrawals can take time. If you plan to use ABLE money for monthly bills, plan ahead.
  • Medicaid payback rules may apply in some states. In some states, remaining funds after the account owner dies may be subject to Medicaid recovery. Several states have passed laws that exempt ABLE accounts from Medicaid recovery. Still, check your plan’s rules.

How do I get the most out of an ABLE account?

  • Start with a clear goal (rent buffer, accessible vehicle repairs, support worker hours).
  • Set a small monthly contribution on autopay, if you can.
  • Share the account link with trusted family and friends who ask how to support you.
  • If you work, check whether ABLE-to-Work could raise your contribution amount.
  • If you have a 529 plan that is no longer needed for school, ask whether a rollover makes sense for your situation.

Even a small amount saved can mean fewer emergencies and more choices.

More Resources

Informed by: Darcy Milburn, Director of Social Security & Healthcare Policy at The Arc of the United States
Reviewed by: Mike Nagel, Policy Manager at The Arc of the United States

An Asian woman with short hair is helping a young Black girl color a picture on a green and yellow desk

What Is an IEP? Rights, Services, and Supports Explained

/in /by Jackie Dilworth

Updated July 17, 2026

Every child with a disability deserves the chance to learn, belong, and thrive in school. The Individualized Education Program, or IEP, is one of the strongest tools to make that possible.

An IEP turns disability rights into action. It ensures that students with disabilities receive the individualized support, instruction, and opportunities they need to grow and reach their potential.

Today, nearly 8.2 million children with disabilities receive special education and related services through the Individuals with Disabilities Education Act (IDEA). IDEA is the federal law that protects the education rights of eligible students with disabilities in public schools.

IDEA became law in 1975 because parents of children with disabilities demanded access to public education. Before federal protections existed, states could exclude children with disabilities from public schools, and many did. Millions were denied an education, not because they could not learn, but because society did not believe they were worth educating. That changed because of federal action. Parents, led by The Arc, fought in court and won. Their victory laid the foundation for IDEA and generations of opportunity.

For decades, The Arc has helped shape national special education policy, train families and educators, and defend students’ rights in courts, legislatures, and schools across the country.

This guide draws directly from The Arc@School Advocacy Curriculum and The Arc’s education policy experts. The Arc@School is a top national program helping families and educators navigate special education systems with confidence.

Quick answer: What is an IEP?

An IEP, or Individualized Education Program, is a legally required plan for a student with a disability who needs specialized instruction in school.

The plan explains:

  • What the student’s educational goals are
  • What services and supports the school will provide
  • How progress will be measured
  • Where services will take place
  • How often services will happen

The IEP is developed by parents, educators, and specialists. It must be reviewed at least once a year and updated when the student’s needs change.

Why does an IEP matter?

An IEP is the plan that makes a student’s rights real during the school day. A strong IEP sets clear, realistic, measurable goals and includes the supports a student needs to reach them. Teachers and service providers must implement the plan and monitor progress throughout the year. IEP services are provided at no cost to the child’s family.

“An IEP is the blueprint for how we uphold every child’s right to a quality education,” says Katy Neas, CEO of The Arc of the United States and former top official at the U.S. Department of Education’s Office of Special Education and Rehabilitative Services. “It’s the document that turns a child’s strengths and needs into concrete goals, services, and accountability.”

Signs your child may need an IEP

A child may benefit from an IEP if they:

  • Struggle to make progress even with extra help
  • Have difficulty reading, writing, speaking, focusing, or communicating
  • Need therapy or specialized instruction during the school day
  • Experience sensory, behavioral, or communication challenges that affect learning
  • Often face discipline related to disability-related needs
  • Need significant support to participate in class or school routines

A diagnosis alone doesn’t guarantee an IEP. The key question is whether the child needs specialized instruction to make progress in school. You don’t need a medical diagnosis to request an evaluation, though a diagnosis can sometimes support the request for services.

How is an IEP different from a 504 Plan?

Both IEPs and 504 Plans provide supports for students with disabilities, but they serve different purposes.

An Individualized Education Program (IEP) is prepared for a student who has a disability and needs specialized instruction. To qualify for IDEA services, the student must meet criteria under one of the disability categories recognized by the law. An IEP includes individualized goals, special education services, and related supports like therapy or assistive technology.

For example, a child with a learning disability may need specialized instruction to learn to read. A child with intellectual disability may need instruction that is adapted to support communication, daily living skills, academics, or independence.

A 504 Plan is a written plan under Section 504 of the Rehabilitation Act of 1973. It supports students who need accommodations to access school but may not need specialized instruction.

For example, a student with diabetes may need to check insulin, eat at unscheduled times, or carry medical supplies during the school day. A student with anxiety may need a quiet testing space or breaks during the day.

If a student needs specialized instruction to make progress, an IEP is likely the better fit. If a student mainly needs accommodations to access school, a 504 Plan may be more appropriate. Learn more about 504 Plans in this explainer by Parents.com.

What are a student’s rights under IDEA?

Every eligible student has the right to a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE).

These rights mean students with disabilities must receive the supports they need at no cost to families. They also mean students should learn in general education settings whenever appropriate, with supports in place.

“IDEA ensures every child with a disability receives an appropriate public education,” says Katy Neas. “Students are general education students first, but the way they access learning looks different for each child. Some master grade-level content with the right supports. Others make meaningful progress toward individualized goals. Both are success stories under IDEA.”

Learn more about how The Arc defends these rights: Education Policy & Advocacy

What does “appropriate” mean for a child’s education?

An appropriate education helps a child make measurable and meaningful progress based on their abilities and needs. It must be ambitious enough to promote growth and flexible enough to meet each child where they are.

Supports and services should make learning accessible and engaging. That might include assistive technology, alternative materials, visual supports, communication tools, extra time, or adapted instruction.

“Every child learns in their own way and at their own pace,” says Robyn Linscott, Director of Education & Family Policy at The Arc of the United States. “An appropriate education honors that individuality. When a student discovers a new skill or takes a step toward independence, that success is every bit as meaningful as test scores or grades.”

What is FAPE in practice?

A Free Appropriate Public Education means schools cannot deny or delay services because of cost or convenience. It ensures your child receives specialized instruction and supports designed to help them succeed in school and in daily life.

If your child needs speech therapy, occupational therapy, a one-to-one aide, counseling, transportation, or assistive technology, those services must be written into the IEP and provided without charge.

FAPE exists so children with disabilities have the same chance to learn, grow, and prepare for life beyond school.

What is the Least Restrictive Environment (LRE)?

The Least Restrictive Environment means students with disabilities should learn in general education settings whenever appropriate.

Schools must first provide supports that make inclusion successful. These may include paraprofessionals, sensory tools, assistive technology, adapted materials, communication supports, or co-teaching.

The goals are growth, inclusion, and progress, not separation. The key is flexibility. As children gain skills, their needs and environments should evolve with them.

How do I start the IEP process? (Child Find and evaluation)

Schools must identify and evaluate any child who may need special education services. This is known as Child Find.

If you suspect your child has a disability, send a written request to the principal or special education coordinator asking for a comprehensive evaluation. Keep a copy of your request.

Evaluations must include multiple tools, such as classroom observations, standardized tests, teacher input, and family input. They must be conducted by qualified professionals. The results determine eligibility for services and guide the IEP team’s decisions.

IEP timeline: What happens after you request an evaluation?

Specific timelines vary by state, but the process often looks like this:

  • A parent or school requests an evaluation
  • The school asks for written consent
  • The evaluation is completed
  • The team meets to decide eligibility
  • If the student qualifies, the IEP team develops the IEP
  • Services begin
  • Progress is monitored and shared with the family
  • The IEP is reviewed at least once a year

Parents should ask their state Department of Education or school district for the exact timelines that apply where they live.

Do I have to give written consent for IEP consideration?

Yes. Schools must get your informed, written consent before the first evaluation and before providing special education services for the first time.

You have the right to review the results and ask questions before signing. You can refuse or withdraw consent, but that may stop services.

Written consent ensures that you understand and agree to what the school proposes.

What is prior written notice (PWN) and when do I get it?

Prior written notice is a document schools must give parents before starting, stopping, or changing eligibility, placement, or services. Schools must also provide it when they deny a parent request.

The notice must explain:

  • What the school plans to do or refuses to do
  • Why the school made that decision
  • What data or records it used
  • What other options were considered
  • What rights parents have

Keep every prior written notice. It creates a clear record of decisions about your child’s education.

What if the school denies my child an IEP?

If your child is found ineligible for an IEP, the school must explain the decision in writing and share the data used.

You can:

  • Request an Independent Educational Evaluation (IEE). This evaluation must be provided at no cost to the family.
  • Request a meeting to discuss the results and possible next steps, including a possible 504 Plan.
  • File a complaint with your state’s Department of Education if you believe the evaluation was incomplete or inaccurate.
  • If the issue isn’t resolved, file a complaint with the U.S. Department of Education’s Office for Civil Rights.

Many parents feel intimidated during this process. Keeping records, asking questions, and putting requests in writing can help families feel more prepared and confident.

Who is on the IEP team and how do parents participate?

The IEP team includes:

  • The parent or guardian
  • At least one general education teacher
  • At least one special education teacher
  • A school representative who can make decisions for the school
  • Someone who can interpret evaluation results
  • The student, when appropriate
  • Other people invited by the family or school, such as therapists, advocates, or support people

Parents can bring someone they trust to the IEP meeting. This can be a friend, family member, advocate, or professional who knows the child.

Schools must schedule meetings at a convenient time and provide language interpreters if needed. If you cannot attend, the school must show it made reasonable efforts to include you.

“IEPs work best when parents and schools can establish a trusting relationship,” Katy Neas explains. “Strong IEPs are built on trust and good information. Share what works at home. Ask for data. Make sure decisions are written clearly so everyone knows who is doing what and when.”

What should parents bring to an IEP meeting?

Parents may want to bring:

  • Evaluation reports
  • Progress reports or report cards
  • Examples of schoolwork
  • Notes about concerns or goals
  • Questions for the team
  • Medical or therapy reports, if helpful
  • A support person, advocate, or family member

It can also help to write down your priorities before the meeting. IEP meetings can move quickly, and written notes can help make sure the most important concerns are addressed.

What happens if my child’s behavior leads to discipline?

Behavior is often a form of communication. If a child is suspended, parents should ask whether the behavior was linked to the child’s disability, unmet support needs, or a failure to follow the IEP.

If a student with a disability is removed from school for more than 10 consecutive school days, the IEP team must hold a manifestation determination meeting.

At that meeting, the team should ask:

  • Was the behavior caused by, or directly related to, the child’s disability?
  • Was the behavior the result of the school not implementing the IEP?
  • Does the child need a Functional Behavioral Assessment (FBA)?
  • Does the child need a Behavior Intervention Plan (BIP), or changes to an existing plan?

If the behavior is connected to the disability or the IEP wasn’t followed, the school must address the problem. The goal should be support, not exclusion.

What happens if the school uses restraint or seclusion practices on my child?

Restraint and seclusion can be traumatic and dangerous. They should never be treated as routine discipline or classroom management.

“Behavior challenges often come from unmet needs, not defiance,” says Robyn Linscott. “Restraint and seclusion are never teaching tools. The focus should always be on understanding triggers, adjusting supports, and helping students feel safe and heard.”

Parents should ask for an IEP meeting, request documentation of what happened, and ask what positive behavioral supports will be put in place to prevent it from happening again.

Read more about why restraint and seclusion harm students: Leah should have never been secluded and restrained

Do schools still provide services during suspension or expulsion?

Yes. Even during suspension or expulsion, a student must continue receiving services that allow progress toward IEP goals.

The IEP team decides how those services are delivered. Education doesn’t stop because a student is disciplined.

How do families start planning for life after school in an IEP?

Planning for life after high school, often called transition planning, must begin by age 16 for students with IEPs, though many schools start earlier. The student should be invited to these meetings.

Transition planning focuses on goals for:

  • Continuing education
  • Job training or employment
  • Independent living
  • Community participation
  • Daily life skills
  • Transportation and decision-making support

Students with disabilities have the right to special education services through age 21 under IDEA. Transition planning helps make sure the final years of school prepare them for what comes next, including continuing education, work, and community life.

As students grow, their needs change. Transition planning helps young people build confidence, skills, and self-advocacy for adulthood. When a student turns 18, educational rights usually transfer from parents to the student.

How is the dismantling of the U.S. Department of Education impacting IEPs?

Efforts to dismantle the U.S. Department of Education are already underway, and the consequences for students with disabilities are serious.

The Department of Education enforces IDEA, monitors compliance, and provides funding and oversight. Without strong federal oversight, families risk losing consistency, accountability, and vital protections. Only 20 states are meeting their requirements for serving students with disabilities ages 3 to 21 under IDEA, so a strong federal Department of Education is more important than ever.

Katy Neas, CEO of The Arc, explains why the Department’s role matters for students with disabilities in her op-ed, Department of Education helps students with disabilities. Don’t let it disappear. in Newsweek.

Recent studies from the U.S. Government Accountability Office and U.S. Senate HELP Committee are already finding that civil rights enforcement is collapsing. What’s more, in June 2026, the Department of Education announced plans to move special education oversight and civil rights enforcement to different federal agencies. Read more in our statement: Moving Special Education and Civil Rights Out of Education Department Risks a Patchwork of Rights for Students With Disabilities.

The Arc continues to fight to protect the Department of Education’s role so that every child, in every state, can count on their needs being met and their rights being enforced.

Four real-life scenarios and exact steps

  1. Eligibility: “My child is struggling. How do we get tested to see if special education services are needed?”
    1. Email the principal and special education coordinator. State that you suspect a disability and request a comprehensive evaluation. Ask for a reply and a consent form.
    2. Keep a dated copy. Schools must identify and evaluate students who may need services and evaluate in all areas of suspected disability. Consent is required.
    3. If you disagree with the school’s evaluation, request an Independent Educational Evaluation (IEE) at public expense or obtain your own. The school must consider it and issue prior written notice if denying changes.
  2. Services: “My child’s IEP is vague. Supports are not happening.”
    1. Ask for an IEP meeting in writing. Request that supports be specific and written into the IEP.
    2. After the meeting, ask for prior written notice summarizing decisions and the data used.
    3. Only written commitments are enforceable. PWN is required before changes or denials.
  3. Discipline: “My child with an IEP was suspended. What are our rights?”
    1. Request an IEP meeting within 10 school days. Ask whether the behavior was connected to your child’s disability or whether the IEP wasn’t followed.
    2. Ask to review discipline records, behavior data, and the IEP. If the behavior is a manifestation of disability or if the IEP wasn’t implemented, request a return to placement, a Functional Behavioral Assessment, and a Behavior Intervention Plan.
    3. These protections help prevent students from being punished for disability-related behavior and require the school to address support needs.
  4. Transition: “My disabled teen needs a plan for life after high school.”
    1. Ask for transition goals and services at the next IEP meeting. Invite your student.
    2. Talk with your child about what they want to do when they complete school. Your child’s IEP must include a transition plan and corresponding services no later than age 16, but parents and their child should start planning sooner.

Common IEP terms parents should know

IDEA
IDEA is the federal special education law that protects eligible students with disabilities.

IEP
An Individualized Education Program is a written plan for a student who qualifies for special education services.

FAPE
Free Appropriate Public Education is a student’s right to individualized services at no cost to the family.

LRE
Least Restrictive Environment means students should learn in general education settings whenever appropriate.

Child Find
Child Find is a school’s legal duty to identify students who may need special education services.

PWN
Prior Written Notice is a document explaining decisions about a child’s eligibility, services, placement, or supports.

IEE
An Independent Educational Evaluation is an outside evaluation families can request if they disagree with the school’s evaluation.

FBA
A Functional Behavioral Assessment helps identify why a behavior is happening and what supports may help.

BIP
A Behavior Intervention Plan outlines positive supports and strategies to address behavior.

Quick action checklist

  • Put every request in writing
  • Ask for prior written notice after each decision
  • Keep an IEP folder for all records and progress reports
  • Request meetings if problems arise
  • Ask how progress is measured
  • If your child is suspended more than 10 days, request a manifestation determination meeting
  • Ask for transition planning before age 16 if your child needs earlier support

Learn more and take the next step

Written by: Katy Neas, CEO, and Robyn Linscott, Director of Education and Family Policy, The Arc of the United States
Reviewed by: Katy Schmid, Senior Executive Officer of National Programs, who oversees The Arc@School

Picture of the U.S. Department of Education building in Washington, DC

GAO Report Finds Education Department Civil Rights Enforcement Collapsing as Disability Complaints Go Unreviewed

/in /by Jackie Dilworth

Today, the U.S. Government Accountability Office (GAO) released a new report documenting major disruption at the U.S. Department of Education’s Office for Civil Rights (OCR) and a sharp rise in the dismissal of discrimination complaints in schools, including those involving students with disabilities.

From March through September 2025, OCR received more than 9,000 discrimination complaints, and roughly 90% of the resolved cases were closed through dismissal. GAO also found that 247 OCR staff were placed on paid administrative leave starting March 21 and were not allowed to work for nearly nine months, a decision GAO estimates cost taxpayers up to $38 million.

For students with disabilities and their families, this translates into fewer answers, fewer opportunities, and fewer safeguards when schools fail to follow the law.

What GAO Found

The federal system that enforces students’ civil rights is breaking down in plain sight. Families are filing complaints, but far fewer get a real review, and schools get less clarity about what the law requires.

  • Most resolved cases ended without review. GAO reports OCR received 9,269 complaints from March through September 2025 and resolved 7,072. Of those resolved, 6,353 were dismissed, roughly 90%.
  • Taxpayers paid for investigators who were barred from doing their jobs. GAO estimates the cost of paying OCR staff who were placed on administrative leave while not allowed to work was $28.5 million to $38 million from March 21 through mid-December 2025.
  • Transparency dropped as disruption increased. GAO describes reduced public visibility into OCR’s workload and outcomes during this period.

A Disability Rights Perspective

“GAO shows OCR, the federal office families rely on when schools violate students’ civil rights, thrown into turmoil as complaints pile up and outcomes disappear from public view,” said Katy Neas, CEO of The Arc of the United States. “Families have a right to turn to OCR when a child is denied accommodations, pushed out of class, harassed, or disciplined unfairly because of disability. When those complaints aren’t addressed, schools lose clear direction, families lose answers, and students live with the consequences for years. Rights are only meaningful when enforcement exists.”

What This Means for Students with Disabilities and Families

When OCR can’t consistently review complaints, disability rights become harder to enforce in real life, including:

  • Accommodations and accessibility: support under IDEA and Section 504, accessible materials and technology, and physical access to buildings and programs
  • Harassment and hostile environments: bullying and disability-based harassment that schools fail to stop
  • Discipline and exclusion: suspensions, removals, or unequal discipline tied to disability, and students being pushed out of learning time
  • Services that shape adulthood: delays or denials of supports that affect graduation, employment pathways, and independence

Families often turn to OCR when local processes fail, when schools don’t follow the law, or when a student pays the price for repeated failures. GAO’s findings describe a system where many of those families are left without a meaningful federal backstop.

What This Means for Schools and Educators

OCR enforcement creates accountability and clearer expectations.

  • When enforcement is inconsistent, schools lose clear, reliable direction about what compliance looks like.
  • Disputes last longer and are more likely to escalate into conflict, due process, or litigation.
  • Students lose time they can’t get back, and that lost time can change their future.

How OCR Enforcement is Supposed to Work

  • A federal process that can be faster and less expensive than court
  • Outcomes that can be legally binding
  • A pathway that can help families resolve issues without years of litigation

What Should Happen Next

Disability advocates are urging immediate steps:

  • Stabilize staffing and operations so complaints can be reviewed on the merits.
  • Restore transparency so families and schools can see what is being processed and how.
  • Communicate clearly to families about timelines, options, and what happens when OCR dismisses a complaint.
A black and white picture of people with disabilities protesting to get Section 504 signed

Texas and Eight Other States Renew Attack on Section 504 and the Right of Disabled People to Live in Their Communities

/in , /by Jackie Dilworth

On January 23, 2026, Texas and eight other states—Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota—renewed their attack on Section 504 and the integration mandate. The integration mandate is a requirement under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). It allows people with disabilities to receive services in the community rather than in institutions. It was upheld by the U.S. Supreme Court in its landmark Olmstead v. L.C. (Lois Curtis) decision in 1999. We cannot let these states take away that right.

The nine states say that a rule about the integration mandate published by the U.S. Department of Health and Human Services (HHS) is unlawful and unconstitutional and should be blocked. The HHS rule says that state and local governments and any entity that gets HHS dollars must serve people with disabilities in the most integrated setting appropriate. The rule also says that entities may violate Section 504 when they place disabled people at serious risk of unnecessary institutionalization. The U.S. Department of Justice and many federal courts have said the same thing – that an entity can violate Section 504 when it fails to serve disabled people in the most integrated setting appropriate or when it puts them at serious risk of institutionalization.

If the states are successful in their challenge, it may be harder for disabled people to enforce their right to live and participate in the community. As a result, more people with disabilities may be forced into institutions when they can and want to live in the community instead. The disability community has fought long and hard for strong disability rights laws, and we cannot allow them to be weakened.

The states’ latest attack on disability rights is a revised version of the lawsuit Texas v. Kennedy (formerly Texas v. Becerra). In the earlier version of the case, Texas and 16 other states argued that Section 504 itself is unconstitutional and challenged updated Section 504 rules published by HHS in 2024. After outrage and advocacy from the disability community, the states withdrew their claim that Section 504 is unconstitutional. The remaining states continue to challenge the updated rules.

Eight states recently dropped out of the litigation after HHS proposed a package of three regulations aimed at the transgender community, including a regulation categorically excluding gender dysphoria from the protections of Section 504. Many disability groups, including the undersigned, have opposed this change to the Section 504 regulations.

In the new complaint, the states are now asking the court to:

  • declare that the entire Section 504 rule is unlawful,
  • stop HHS from enforcing the entire rule, and
  • stop HHS from telling states they cannot take actions that place people with disabilities at “serious risk” of institutionalization.

What Can I Do to Help?

We call on everyone in the nine states bringing this new attack on our autonomy and independence—Texas, Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota—to urge their governors and attorneys general to withdraw this lawsuit and stop attacking the right of people with disabilities to live and participate in their communities. Information about how to contact the attorneys general in these states can be found at dredf.org/protect-504.

This update was created by The Arc of the United States, Bazelon Center for Mental Health Law, Center for Public Representation, Disability Rights Education & Defense Fund, Justice in Aging, the National Health Law Program, with contributions by Alison Barkoff, Hirsh Health Law and Policy Associate Professor, George Washington University.

Two young people sit side by side at an outdoor picnic table, smiling and looking at a smartphone together. One person sits in a wheelchair, and both wear jackets in a park setting

Medicaid Work Reporting: What Does It Mean for You?

/in , /by The Arc

Congress passed a new law that made cuts to Medicaid, called Public Law 119-21. This law says that some adults with low income who get health coverage through Medicaid will need to report their work or community activities to the state in the future

Public Law 119-21 creates a Medicaid community engagement requirement (often called a Medicaid work requirement). A community engagement requirement makes reporting work, school, or volunteering a condition of staying enrolled in Medicaid for some adults. CMS gives states guidance on how to implement Medicaid community engagement requirements.

This law does not affect you if: you get Supplemental Security Income (SSI) and Medicaid and/or you receive Medicaid home and community-based services.

Nothing is changing right now. The federal law sets the requirement to start by January 1, 2027, unless a state chooses to start sooner. Changes may happen in your state in the next few years.

In this blog, we explain:

  • Who may need to report work or activities.
  • Who does not need to report.
  • What you can do now to protect your Medicaid.

Remember: Medicaid may have a different name in your state.

Who may have to report work or activities for Medicaid?

The new rules will affect adults who:

  • Are 19–64 years old
  • Get Medicaid through Medicaid expansion

Lawmakers may decide certain groups of people are exempt. Exempt adults do not need to report. You can find out more about who is exempt below.

What is Medicaid expansion?

Some states give Medicaid to adults with low income, even if they don’t have children. This is called Medicaid expansion. Check if your state has Medicaid expansion.

What counts as work or community engagement activities?

You may need to report things like:

  • Working at a job (even part-time)
  • Working for yourself
  • Volunteering or helping in the community
  • Going to school or job training

Federal law defines ‘community engagement’ as employment, a work program, community service, or education/training. Many states will use an 80-hours-per-month standard to measure community engagement.

How reporting works:

Your state Medicaid agency runs the reporting process, and your state Medicaid agency sends the notices. Each state will decide:

  • How often you must report
  • How you report (online, by phone, or in person).

Who should NOT need to report work or activities?

Lawmakers have decided that many people with disabilities and caregivers should not need to follow these rules. They are exempt or free from the rules.

People who are exempt include:

  • People who get Medicaid because of a disability, like many people on Supplemental Security Income (SSI).
  • People who have serious health needs or need a lot of help every day. These people are sometimes called “medically frail.”
  • People who get both Medicare and Medicaid.
  • Some family caregivers who provide help to a person with a disability or serious health problem.

Important: Even if you should not need to report, mistakes can happen. Always read your mail from Medicaid. Get help if you get a letter about reporting work or community activities. In past work-reporting programs, people lost Medicaid coverage because paperwork didn’t go through, even when they were eligible or should have been exempt.

What you can do now:

  • Keep copies of any letters that show you get Supplemental Security Income, Social Security Disability Insurance, a Medicaid waiver, or other disability benefits.
  • Keep letters or reports from doctors that explain your disability or the help you need.
  • If you get a notice saying you must report work and you have a disability, contact your local chapter of The Arc or legal aid right away.

Family Caregiver Information

You may not have to report work if you are a family caregiver and you:

  • Give care to a person with a disability or serious health need.
  • Help with things like dressing, eating, bathing, taking medicine, behavior support, getting around, or communicating.

What you can do now:

  • Write down who you care for and how you help.
    • Example: “I help my adult son with dressing, meals, and seizures every day.”
  • Keep papers that show:
    • You are a paid caregiver through Medicaid.
    • A doctor says the person needs your help.
  • If you get a letter about work reporting, ask if you qualify for a caregiver exemption.

What Everyone Can Do Now

Even before these rules start, you can:

  • Update your contact information.
    • Make sure Medicaid has your current address, phone number, and email.
  • Open and read all mail from Medicaid or your health plan.
    • Do not ignore letters, even if they are hard to understand.
    • Ask a trusted person to help you read letters.
  • Get help right away if you get a letter asking about work or activities.
    • Contact your local chapter of The Arc, your Protection & Advocacy (P&A) agency, or legal aid.
    • Say: “I have a disability / I am a caregiver. I think I may not have to follow these new rules. Can you help me?”

Where to Get Help

Quick Answers (Medicaid Work Reporting)

Q: What is Medicaid work reporting?
A: Medicaid work reporting is the process a state uses to document “community engagement” activities for some adults.

Q: Does Medicaid work reporting affect SSI Medicaid?
A: No. People who receive SSI and Medicaid are not the target group in this post’s summary.

Q: When could this start?
A: The law sets an effective date by January 1, 2027, unless a state starts sooner.

Q: Who is most likely to be asked to report?
A: Adults ages 19–64 who receive Medicaid through Medicaid expansion (and certain similar coverage pathways).

Q: What’s the biggest risk for people who should be exempt?
A: Missing paperwork or unclear notices can still trigger coverage problems.

Q: Who can help if I get a letter?
A: Your local chapter of The Arc, your state P&A agency, or legal aid.

Written by Kim Musheno, Director of Medicaid Policy at The Arc of the United States.