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.

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.

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

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

• Donate to The Arc to strengthen advocacy and programs that expand inclusion
• Volunteer with your local chapter of The Arc and support community-based efforts
• Share stories and resources using #DDAM2026 #DDawareness

“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.

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

• New York Times: More Disabled People Can Open Special Savings Accounts. Do You Qualify?
• Yahoo Finance: Newly Expanded ABLE Accounts Create ‘Powerful Retirement’ Tool for Millions of Disabled Americans
• The Arc: Financing the Future
• ABLE National Resource Center

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

Every child with a disability deserves the chance to learn, belong, and thrive in school. The federal special education law, the Individuals with Disabilities Education Act (IDEA), guarantees a free, appropriate public education to eligible children with disabilities. To be eligible, a child must have a disability and need specialized instruction in order to benefit from education.

Under IDEA, the child’s parents and the public school develop an Individualized Education Program (IEP). The IEP is a contract between the school and parent that details the specific services and supports the child will receive to address the child’s unique needs.

Today, nearly 8.2 million children with disabilities, about 16.5% of public school students, receive special education and other services that are designed for each child to make academic progress. These children have disabilities such as intellectual disabilities, learning disabilities, blindness, hearing loss, and physical disabilities.

IDEA became law in 1975 because parents of children with disabilities demanded access to their public schools. Before federal protections existed, states could exclude children with disabilities from public schools, and many did. Millions were denied an education, not because they couldn’t 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.

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

What is an IEP and why does it matter?

An IEP is a written plan that details how a school will meet a student’s individual learning needs. It sets clear, measurable goals and includes details of the support your child 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.

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 both a disability and needs specialized instruction. To qualify, the student must fall into one of 13 disability categories. An IEP includes individualized goals, special education services, and related supports like therapy or assistive technology. For example, a child with a specific learning disability may need specialized instruction to learn to read.

Not every child with a disability needs specialized instruction, though. Some children just need accommodations at school. A child with diabetes must be able to check her insulin and eat at unscheduled times in order to manage her blood sugar. For this child, her needs are protected by Section 504 of the Rehabilitation Act of 1973. A Section 504 plan requires public schools to provide equal access to education through reasonable accommodations, such as modified assignments, flexible testing, adaptive equipment, or changes to the learning environment.

What are a student’s rights under IDEA?

Every student has the right to a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). These rights ensure that students with disabilities receive the supports they need at no cost to families and, whenever appropriate, learn alongside their non-disabled peers.

“IDEA ensures every child with a disability receives an appropriate public education,” says Katy Neas, CEO of The Arc of the United States. “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, but flexible enough to meet each child where they are.

Supports and services should make learning accessible and engaging, whether that means assistive technology, alternative materials, or extra time for assignments.

“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, 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 succeed as their peers.

What is the Least Restrictive Environment (LRE)?

The Least Restrictive Environment means that students with disabilities should learn in general education settings whenever appropriate. Schools must first provide supports that make inclusion successful, such as paraprofessionals, sensory tools, assistive technology, or co-teaching, before considering more specialized settings.

The goals are growth, inclusion, and progress, not separation, and 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, and teacher input, and be conducted by qualified professionals. The results determine eligibility for services and guide the IEP team’s decisions.

You do not need a medical diagnosis to request an IEP, though a diagnosis can sometimes strengthen the request for services.

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, and when they deny a parent request.

The notice must explain what the school plans to do, why it made that decision, what data it used, what options were considered, and what your rights are.

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 education evaluation. 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 is not resolved, you can file a complaint with the U.S. Department of Education’s Office for Civil Rights.

Document every step and keep copies of all correspondence.

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

The IEP team includes the parent or guardian, general and special education teachers, a school representative, and someone who can interpret evaluation results. It must also include someone who can make decisions on behalf of the school. Other people, such as therapists or advocates, may also be invited. Parents can also bring anyone they want to the IEP team, whether it is a friend or advocate.

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 happens if my child’s behavior leads to discipline?

Behavior is a form of communication. If a child is suspended for any amount of time, parents should work with the school to explore whether the behavior was linked to the child’s disability or a failure to follow the IEP. If so, the student must return to their placement, and the school must fix the problem and develop a Behavior Intervention Plan. If a student is suspended for more than 10 consecutive school days, parents should request a meeting with the IEP team.

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

“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.”

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.

How do I start planning for life after school?

Planning for life after high school, often called transition planning, must begin by age 16, though many schools start earlier. The student should be invited to these meetings, which focus on goals for education, employment, and independent living.

Students with disabilities have the right to special education services through age 21 under IDEA. Transition planning ensures that the final years of schooling prepare them for what comes next, including continuing education, work, or 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 enforces IDEA, monitors compliance, and provides funding and oversight. Without it, there is no national consistency or accountability, and families risk losing vital protections.

Read the op-ed: Department of Education helps students with disabilities. Don’t let it disappear (Newsweek)

The Arc continues to fight to protect the Department’s role so that every child, in every state, can count on 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 was suspended for two weeks.”
   1. Request an IEP meeting within 10 school days. At this meeting, the team will explore whether the child’s behavior was a result of his disability.
   2. Ask to review data and the IEP. If behavior is a manifestation or the IEP wasn’t implemented, request a return to placement, a Functional Behavioral Assessment, and a Behavior Intervention Plan. These protections prevent punishing the child for having a disability and require supports to address behavior.
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.

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

Learn more and take the next step

• Build your advocacy skills with The Arc@School Advocacy Curriculum
• Stay informed through Education Policy & Advocacy

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 Director of National Program Initiatives, who oversees The Arc@School

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.

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.

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

• Your local or state chapter of The Arc. Find a chapter here.
• Protection & Advocacy (P&A) system in your state. Find it here.
• Legal aid or legal services office. Get help here.

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.

Today, that promise is under strain. Funding shortfalls, teacher shortages, and policies that divert resources away from public schools threaten the foundation of inclusive education. For families of students with disabilities, those challenges are deeply personal.

Stories of families like Amanda’s, Christina’s, Kristen’s, and Susannah’s remind us why public schools and special education services must be protected and strengthened, not dismantled or defunded.

Reaching Her Potential: Kristen’s Journey to Graduation

As a former special education student, Kristen knows firsthand how a strong public education can shape a person’s future. Kristen credits her Individualized Education Program (IEP) team and family for helping her meet her goals and graduate high school, something that might not have been possible without that support.

Now an adult, Kristen advocates for reinvesting in public education so that every student, with or without disabilities, has the same opportunity to succeed.

“This is not the time to take money from public schools but rather to put more money into public schools and services so all students have the opportunity to achieve their goals and reach their full potential, like I was given.”

Building Confidence and Hope: Amanda’s Family Finds Support

When Amanda’s son was diagnosed with ADHD, her family worried about how he would manage in school. But public education gave them more than academic success; it gave them hope.

“Thanks to dedicated special education teachers and an individualized support plan, [my son] received the guidance and attention he needed. The school helped him build confidence, develop important skills, and feel supported every step of the way. These services didn’t just help him do better in class; they gave our whole family hope and relief.”

The Only Door That Opens: Susannah’s Fight for Inclusion

For Susannah, the promise of public education isn’t theoretical—it’s the only thing standing between her child and exclusion. Her 12-year-old son has a rare genetic disorder, Turnpenny-Fry syndrome, and requires significant support to learn safely and effectively.

Private schools turned him away, even with tuition assistance through a voucher. Public school was the only place willing and equipped to meet his needs, with specialized staff, accommodations, and a commitment to serve every child.

“More vouchers for private schools would directly harm my child,” Susannah said. “Federal funding is vital to ensure his constitutional right and access to a free, appropriate education.”

Starting Early: Christina’s Story of Hope and Early Intervention

For Christina’s son, the public education system’s support began before preschool. Through the North Carolina Infant-Toddler Program, he receives critical early intervention services, made possible through federal law under the Individuals with Disabilities Education Act (IDEA).

“It was clear early on that [my son] had global delays. He wasn’t making eye contact and was having a hard time lifting his head during tummy time. After a medically complex diagnosis, it was important to get interventions and therapies in place. By 6 months old, [my son] already had an individualized family service plan put in place under IDEA. With these plans, a team is able to assist in ensuring that he gets the interventions he needs through physical therapy, occupational therapy, vision therapy and speech. This plan will help him has he enters the school system at the age of 3 and beyond.”

Early intervention can change the course of a child’s life. These programs not only prepare children for school but help families understand how to support their development from the very beginning.

Protecting a Promise and Strengthening a System We All Depend On

These stories remind us that public education and special education are not optional extras. They are essential civil rights and the foundation of an inclusive society.

The current public school system isn’t perfect. It needs more funding, more staff, and more understanding. The answer isn’t to pull resources away or funnel them into systems that exclude the very students who need support most.

We must strengthen public schools by investing in teachers, therapists, and aides; expanding early intervention; and honoring our collective promise that every child deserves a chance to learn.

Public education is not just a service. It’s a commitment to fairness and inclusion. It’s how we, as a society, say to every child: You belong here, you matter, and we will help you succeed.

Take Action Today: Tell Congress to Protect this Promise for All Students.