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

IEP Rights Explained: What Every Parent and Educator Should Know

/in /by Jackie Dilworth


Updated February 27, 2026

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

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

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.
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Moving to a New State With Medicaid, SSI, and Disability Services: A 2026 Checklist

/in , /by The Arc

Updated: April 3, 2026

Moving is hard. Moving when you rely on Medicaid, Supplemental Security Income (SSI), or disability services can feel risky. One paperwork delay can mean a gap in care, equipment, medication, or supports that keep daily life stable.

This guide is a plain-language checklist to help you plan a move across state lines while protecting benefits and services as much as possible.

Start Here

The most important thing to know: many programs do not “transfer” when you cross state lines. You often have to close, reapply, or re-qualify. This is especially true for:

  • Medicaid and Medicaid home and community-based services (HCBS)
  • Supplemental Nutrition Assistance Program (SNAP), also known as food benefits
  • State disability services and waivers

Some benefits are federal and continue, but details can still change:

  • SSI continues, but your state supplement may change because states set different supplements
  • Social Security Disability Insurance (SSDI) continues and is not state-based, but you still need to update your address with Social Security

A Moving Timeline That Protects you

60 to 90 days before you move

  • Call your new state’s Medicaid office and ask what programs you need to apply for (Medicaid, waiver services, long-term services and supports).
  • Ask the new state if HCBS services have a waiting list and what the intake steps are. States can limit waiver slots and maintain waiting lists.
  • If you receive SSI, plan how you will report your move and any change in living arrangement.
  • If your child has an IEP, request a complete school records packet now.
  • If you have Section 8, contact your public housing authority to ask about portability rules.

30 days before you move

  • Start a “move binder” (paper or digital) with:
  • Award letters and notices (SSI, SSDI, Medicaid)
  • Proof of identity
  • Current address and new address documents
  • Current prescriptions and pharmacy info
  • Provider list and equipment list
  • IEP/504 plan, evaluations, and school contact list
  • Guardianship orders or decision-making documents

Week of the move

  • Confirm you have at least 30 days of medication and backup plans for supplies.
  • Make sure Social Security has the right phone number and you know how to report the address change for SSI.

First week after you arrive

  • Apply for Medicaid in the new state as soon as you have proof of residence.
  • Call Social Security to report your new address if you receive SSI.
  • Contact the new school district special education office in writing and request “comparable services” right away.

Social Security Benefits When You Move

Will SSI or SSDI stop if I move to another state? Usually, no, but you must report your new address.

Supplemental Security Income (SSI)
SSI requires you to report address changes and living arrangement changes. Social Security also states that people who receive SSI generally cannot update their address online and should call or contact their local office. Important: SSI amounts can change when you move because some states add a state supplement and some do not.

Social Security Disability Insurance (SSDI)
SSDI is federal. It is not set by your state. But you still need to update your address. Social Security explains that people receiving Social Security disability benefits can update their mailing address online through a my Social Security account.

Medicaid Waivers When You Move

Does Medicaid transfer to another state?
No. Medicaid is administered by states. When you move, you generally need to end coverage in your old state and apply in your new state.

Good news: states cannot make you “wait” months just because you are new.
Federal rules require states to cover eligible residents and outline residency standards. You generally become a resident based on where you live and intend to remain, and states may not impose a durational residency requirement in key Medicaid-related eligibility rules.

Can Medicaid cover bills during a gap?
Federal regulation generally requires states to allow Medicaid eligibility effective up to three months before the month of application if the person would have been eligible and received covered services during that period. Some states have approved demonstrations that change how retroactive eligibility works, so it is important to ask your new state directly.

What happens to HCBS waivers when you move?
This is where families get hit hardest. Many HCBS services are provided through waivers that can have caps and waiting lists. Moving often means:

  • Reapplying for waiver services in the new state
  • Completing new assessments
  • Potentially joining a waiting list

A 2024 analysis noted that CMS will require states to publicly report HCBS waiver waiting list numbers and average wait times beginning in July 2027, highlighting how serious unmet need can be.

Plain-language reality: Do not assume you can line up the same home and community supports on the day you arrive. Build a backup plan.

Health Insurance When You Move

I have Marketplace insurance. What happens if I move?
Moving can qualify you for a Special Enrollment Period. HealthCare.gov explains that a move to a new ZIP code or county may qualify, and you may need to show proof of the move and that you had qualifying coverage for at least one day in the 60 days before your move.

What about Medicare?
Medicare is federal and does not stop when you move, but plan networks can change. If you have a Medicare Advantage plan or Part D plan, you should check whether your plan works in your new area.

Special Education Services When You Move

If my child has an IEP, does the new school have to follow it?
IDEA requires the new school district to provide comparable services to what is in the current IEP while they decide whether to adopt the IEP or develop a new one.

Best move: request copies of evaluations and the current IEP before you move, then provide them to the new district immediately.

Decision-Making Supports and Guardianship

Will guardianship or other legal authority automatically carry over?
Not always. Guardianship is state law, and transfers can be complicated.

A major tool that helps is the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA), which creates clearer rules for transfer and recognition across states. The Special Needs Alliance reported that 47 states, Puerto Rico, and Washington, DC have enacted UAGPPJA.

Practical guidance: talk to an attorney in both states, especially if there is an existing court order.

SNAP (Food Benefits) When You Move

Can I keep SNAP when I move to a new state?
SNAP is federally funded but run by states. You usually cannot have an active SNAP case in two states at once.

One practical approach is:

  • Close your case in the old state
  • Get a termination letter
  • Apply in the new state as soon as you arrive

The National Council on Aging outlines these steps plainly.

SNAP processing timeliness rules also matter. USDA notes states must generally provide benefits within 30 days for eligible households and within 7 days for people eligible for expedited service.

Housing Assistance When You Move

Can I move with a Section 8 voucher?
Often yes, through “portability.”

HUD explains portability as the process of moving your Housing Choice Voucher subsidy to a new jurisdiction, with rules that can include a one-year requirement in the initial jurisdiction in some cases.

Special Needs Trusts & ABLE Accounts

Do special needs trusts need to be updated when you move?
Often, yes. State rules and Medicaid interactions can vary. Have the trust reviewed by an attorney in the new state soon after the move.

What happens to an ABLE account if I move?
Moving does not cancel your ABLE account, but plan choices and rules vary.

ABLE eligibility expanded as of 1/1/2026 and an eligible person may have only one ABLE account. You may be able to roll over funds into another state ABLE plan once every 12 months.

A Closing Note

This is a lot. And it’s unfair that families have to become experts just to keep services stable.

But planning early can prevent the worst gaps. Build a paper trail, ask direct questions, and do not assume systems will coordinate without you.

If you want local help, contact your nearest chapter of The Arc. They often know the agencies, the workarounds, and the realistic timelines.

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.

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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.