A smiling man with a disability sits in a power wheelchair indoors. He is wearing an orange polo shirt, gray pants, and black shoes. Shelves, electronics, and household items are visible in the room behind him.

When Social Security Mistakes Become a Burden: Chad’s SSI Story

/in /by The Arc

A smiling man with a disability sits in a power wheelchair indoors. He is wearing an orange polo shirt, gray pants, and black shoes. Shelves, electronics, and household items are visible in the room behind him.Chad is doing everything he can to follow the rules, but mistakes by the Social Security Administration (SSA) are putting his financial security at risk.

When Chad started a six‑month, part‑time internship, he immediately notified SSA that he was earning income. He knew his Supplemental Security Income (SSI) payment would go down while he was working. But that didn’t happen. SSA kept paying Chad his full SSI benefit.

Chad didn’t want this extra money. He knew it was wrong, and he knew what it could mean later. If SSA decides to collect the overpayment, he could face a large debt. Chad also worries about what will happen when his internship ends and he needs his SSI payments to return to their typical amount.

Chad keeps trying to fix the problem, but the overpayments continue.

He has spent hours on the phone with SSA, sometimes waiting several hours just to have a 10- to 15-minute conversation with someone. He has also reached out to other professionals for help, making sure his records are correct and that SSA knows about the mistake.

SSA has told Chad and the people helping him that it acknowledges the overpayments. Still, the extra payments keep coming each month. For Chad, the stress keeps growing as the months go on and he keeps trying to correct an error he did not cause.

SSI rules can make overpayments even harder to manage.

On top of everything, Chad also has to stay under SSI’s $2,000 asset limit to keep his SSI benefits. That means he has to be careful about how much money he has, even as SSA keeps sending him money that he knows he should not be receiving.

Chad is doing everything he can to avoid going over the limit.

What troubles Chad most is not just what’s happening to him. He also worries about what the system means for other people with disabilities.

He sees people being asked to prove themselves over and over again to keep the benefits they need to survive. He hears leaders talk about “fraud, waste, and abuse,” but his experience has shown him how difficult it can be to navigate the system even when someone is trying to follow the rules.

As Chad put it, “I just don’t understand how these perceptions can go through leaders of Congress… and then create these barriers so that people can’t do things to alleviate the necessity of these programs.”

The fear of losing benefits can make work feel risky.

Chad knows many people with disabilities want to work and do more. But complicated rules, reporting requirements, and the fear of losing benefits can make it feel dangerous to try.

“The stressful part of it is like, okay, I’ll just stay where I’m at because I don’t want to deal with this any more than I already am,” he said.

The system doesn’t just slow people down. It holds them in place, making it difficult for people to take steps toward greater financial independence.

Outdated Social Security systems add to the burden.

Chad also sees how SSA’s own challenges make things worse. Staffing cuts mean long waits and slow responses. As Chad explained, “It’s an administrative burden… they just don’t have the staff to keep up with these things anymore.”

He has also found that SSA’s website doesn’t let him do everything he needs to do. Some tasks still require sending a fax, which he sees as outdated, hard to access, and not secure. From Chad’s point of view, these problems have only gotten worse in recent years.

Removing the SSI asset limit could give people more financial security.

Chad often thinks about how different his life would be if the asset limit were removed. He could save money without fear. He could take on more work without risking his healthcare. He could build a small safety net instead of living month to month.

Removing the SSI asset limit would give him room to breathe, plan, grow, and move forward without being punished for trying.

Chad’s story shows how Social Security’s errors, delays, and outdated systems shift the burden onto the very people the program is supposed to support. It shows why Social Security needs systems and rules that give people with disabilities, like Chad, the possibility to live with dignity, financial security, and hope.

A young girl with Down syndrome stands holding a bouquet of flowers in front of a colorful celebration backdrop with pink and gold balloons, metallic streamers, a horse mascot, and large gold “25” balloons. She wears a bright coral dress and poses with one hand on her hip.

Why the Department of Education Matters for Students With Disabilities

/in /by The Arc

For families of students with disabilities, it can be challenging to make sure their children get the support they need at school. Parents may spend countless hours navigating evaluations, attending meetings, following up on services, and advocating for their children’s rights.

When a school doesn’t follow the law, families need a clear path to get help. The U.S. Department of Education has long played an important role in that process by helping to oversee federal laws and programs that protect the rights of students with disabilities.

  • The Department’s Office of Special Education and Rehabilitative Services distributes federal special education funding, provides guidance to states and schools, supports teacher training, funds research on effective instruction, and helps ensure students receive the services they are legally entitled to receive.
  • The Department’s Office for Civil Rights investigates discrimination in schools, including disability discrimination involving accommodations, accessibility, harassment, restraint and seclusion, and discriminatory discipline.

Changes to how the federal government carries out this work could make it harder for families to know where to turn when they need help.

Families Rely on Special Education Protections

A young girl with Down syndrome stands holding a bouquet of flowers in front of a colorful celebration backdrop with pink and gold balloons, metallic streamers, a horse mascot, and large gold “25” balloons. She wears a bright coral dress and poses with one hand on her hip.Families like Betsy and Katie’s know firsthand how important federal protections are for students with disabilities. Both have spent years advocating for their children’s educational rights and making sure their children get the support they need to succeed in school.

Betsy’s daughter, Kayleigh, was blocked from attending her local public elementary school in kindergarten. After years of advocacy, Kayleigh is now thriving in general education with supports.

Betsy shared:

“Ever since our daughter was blocked from attending her local public elementary school in kindergarten, we have fought hard for her access to education, with the essential backstop of the Department of Education. Now, she’s thriving in general education with supports. We can’t afford more barriers or more agencies to navigate.”

A family of seven poses together outdoors in a wooded area. Two adults stand with five boys of different ages, smiling at the camera. One boy wears glasses, and the group is dressed in sweaters, vests, and jeans.Katie is the parent of three children with disabilities who rely on special education services, accommodations, therapies, and supports to succeed in school. She knows how difficult it can be for families when schools don’t follow the law:

“My children have different disabilities and different needs, but each of them depends on the protections provided by federal disability laws. We have spent countless hours advocating for their educational rights, and we know how difficult it can be when schools do not follow the law. Families should not have to guess which federal agency is responsible for protecting their child’s rights.”

Like many parents, Katie has worked hard to ensure her children receive the services they need and are entitled to under the law.

“Every day a child goes without the supports they need is a day of learning that cannot be replaced. My children are students first, not patients or cases to be managed. Their education, civil rights, and futures belong in the Department of Education. Families need a system that makes it easier, not harder, to ensure their children receive a free and appropriate public education.”

Take Action To Help Protect a Promise

A young girl wearing a backpack climbs the steps of a yellow school bus. Another child is ahead of her, and the bus driver is seated at the front.Betsy and Katie’s stories remind us why strong federal protections matter. Special education is not about paperwork or bureaucracy. It’s about ensuring students with disabilities get the supports, opportunities, and protections they need to learn alongside their peers and reach their full potential. And families need a clear path to get help when those rights are not respected.

Take Action Today: Tell Congress to oppose moving special education and civil rights offices out of the Department of Education and protect the supports that students and families rely on every day.

 

man with a disabilities shops for fresh produce in a grocery store, holding leafy greens in one hand and a plastic produce bag in the other. Text in the lower left reads, “What do Medicaid and SNAP cuts look like in real life?”

Medicaid and SNAP Cuts: What’s Happening and What You Can Do

/in , /by The Arc

Recent changes to Medicaid and the Supplemental Nutrition Assistance Program (SNAP) are affecting people in very real ways. For many people with disabilities and their families, these changes can impact access to food, health coverage, and the supports and services they need to live and work in their communities.

At The Arc, we are hearing from people across the country who are losing benefits, facing confusing paperwork, and struggling to get answers when something goes wrong.

For people with disabilities, the biggest risk is not always that they no longer qualify for benefits. The risk can also come from missed notices, paperwork problems, reporting requirements, or conflicting information from an overwhelmed system.

The stories below show what that can look like in real life.

Diane’s Story: When Paperwork Problems Put Medicaid at Risk

Diane’s family is one of those feeling the weight of these changes.

Her son Jonathon has cerebral palsy, a lifelong disability caused by a lack of oxygen at birth. He also has an intellectual disability, a history of seizures, and anxiety. When Jonathon was born, doctors told his family he might never walk or talk.

For years, Medicaid and waiver services helped Jonathon get the support he needs to work and live in his community. Those services included speech, physical, and occupational therapy, as well as behavioral support that helped him succeed.

Then he suddenly lost Medicaid coverage.

Over the last 18 months, Diane has faced repeated paperwork requests, billing errors, clerical mistakes, conflicting information, and long delays. When she contacted Medicaid, she was given different explanations for why her son lost Medicaid. They told her Jonathon earned too much money. They told her his disability was not severe enough. She even received paperwork stating that his cerebral palsy lasted only “from birth to age 5.”

But cerebral palsy is a lifelong disability.

“The communication has been poor, and every time I call or go into the office, I am told different things,” Diane said. “Young adults who require support but want to work are being denied their supportive services that allow them to be successful.”

She worries that without continued support, her son could lose the services that help him remain independent and employed.

Stacy’s Story: Losing SNAP Means Struggling to Afford Food

Stacy is autistic, has ADHD, and lives with serious mental illness. She recently lost her SNAP food benefits because she was considered “able-bodied” and not working. She is applying for disability benefits, but that process takes time.

Now, Stacy relies on her elderly parents to help cover the cost of food. She wants people to understand what losing food assistance really means.

“Taking away our food is the last thing that should be done. We literally cannot survive without it. Please don’t make things even more difficult for the people who need help the most.”

Nancy’s Story: Losing Medicaid Makes Healthcare Harder to Afford

Nancy shared the story of her grandson, who is 21 years old and lives with a difficult-to-control seizure disorder.

He works three part-time jobs, but many jobs are not safe for him because of his seizures. Last year, he lost access to Medicaid.

Now, his family struggles to make up the difference. His seizure medication costs more than $400 per month, and specialist care, lab work, and testing can be expensive.

“Family helps out as much as possible,” Nancy said. “But losing Medicaid has put a tremendous strain on my grandson.”

What These Stories Show

These stories remind us that even if people with disabilities may be protected by certain rules on paper, they can still be harmed by paperwork problems, delays, confusion, and coverage losses.

And Medicaid and SNAP changes don’t just affect the people who receive these benefits. Families, caregivers, service providers, and communities can also feel the effects when people lose access to food, healthcare, and other supports.

What You Can Do Right Now

Changes to Medicaid and SNAP may look different in each state and happen at different times. If you or a family member receives Medicaid, SNAP, or other benefits, here are some steps you can take to stay informed and prepared:

  • Make sure your address, phone number, and email are up to date.
  • Watch for letters, emails, texts, or notices from your state Medicaid or SNAP office. Open them right away and respond as quickly as you can.
  • Keep copies of important forms and paperwork.
  • Ask for help if you receive a notice that you do not understand.
  • Stay connected with your local chapter of The Arc to learn about changes in your community that may affect you.

Help Protect Medicaid and SNAP

The Arc is working to protect Medicaid, SNAP, and other programs that people with disabilities and families rely on. Your story can help policymakers and community leaders understand how these programs affect people’s lives and why they matter.

Visit TheArc.org/Action to share your story and find ways to take action.

A little boy wearing a pink shirt and sandals sitting on a wooden walkway

HHS Head Start Rollback Threatens Disability Inclusion and Protections

/in /by Jackie Dilworth

Updated August 17, 2026

The Arc is opposing proposed changes to Head Start standards that could weaken inclusion and support for children with disabilities and their families.

For generations, Head Start has helped families access early learning, developmental supports, health services, and other resources during some of the most important years of a child’s life. For children with disabilities, Head Start has played an especially important role. Its federal performance standards help turn the promise of inclusion into everyday practice by setting expectations for how programs identify developmental concerns, connect children to services, support families, and include children with disabilities in the full Head Start experience.

Now, the U.S. Department of Health and Human Services is proposing sweeping changes to those standards. The proposed rule, Reducing Federal Burden for Head Start Programs, would eliminate or scale back many detailed federal requirements and give states and local programs more discretion over how Head Start services are delivered.

Head Start’s performance standards give programs specific responsibilities for supporting children with disabilities and give families expectations about what Head Start should provide. Without them, more could depend on what a local program knows about disability, what resources it has, and how successfully a family can navigate complicated education and disability systems.

How Could the Head Start Changes Affect Children With Disabilities?

The proposed changes would remove several federal requirements that help children with disabilities participate in and benefit from Head Start.

Programs would no longer be required to:

  • Provide developmental assessments to every child.
  • Make accommodations so children with disabilities can fully participate in all aspects of the Head Start program.
  • Follow the current directive that children can’t be turned away because of a disability or chronic health condition.
  • Follow federal guardrails on temporary suspensions or the current prohibition on expulsion.
  • Support parents as they navigate the IEP process.

Federal disability laws would still apply, but the proposed rule changes how Head Start programs would be required to put those laws into practice. Current performance standards require Head Start programs and school districts to spell out who will evaluate a child for IDEA eligibility, how services will be delivered in the Head Start program, and how the agencies involved will work together. Without those requirements, programs may still have the same legal obligations, but families could have less certainty about how those rights will actually be carried out for their child.

Why Do Head Start Performance Standards Matter for Children With Disabilities?

Head Start’s commitment to disability inclusion goes back decades. A decade before children with disabilities won the federal right to a free appropriate public education, Head Start was already including young children with disabilities alongside their nondisabled peers.

In a new op-ed, Katy Neas, CEO of The Arc of the United States, explains why the details in Head Start’s performance standards are essential to making that commitment work. They helped establish an expectation that children with disabilities belong in early learning programs and should have access to the supports they need to participate. Katy warns that weakening those standards could undo some of that progress by making the quality of a child’s Head Start experience depend more heavily on local resources and how much support a family can find on its own.

Read Katy Neas’ op-ed in The 74: “Head Start Was Built to Include Children With Disabilities. Don’t Weaken It.”

Why Are Disability and Civil Rights Groups Opposing the Head Start Proposal?

The Arc of the United States has joined leading civil rights and disability organizations in calling on the administration to withdraw the proposed rule.

The coalition warns that eliminating Head Start’s federal standards could particularly harm children with disabilities and other children who already face barriers to early learning.

As the organizations wrote in the joint statement:

“These quality standards are the hallmark of the Head Start program that ensure every child receives an early education and services that promote healthy child development. Without them, Head Start will exist in name only, offering unequal services based on where the child lives. If finalized, these changes would mean that a child could be turned away from Head Start because of a disability or because a child is struggling. The proposal would also make it more difficult for families experiencing homelessness to enroll, and would remove prohibitions on corporal punishment, seclusion, and expulsion. This proposed rule would fundamentally alter Head Start and break the promise that America has made good on for decades to offer the children born furthest from opportunity with the best our country has to offer in early childhood education.”

The joint statement was signed by:

  • Children’s Defense Fund
  • EdTrust
  • Legal Defense Fund
  • NAACP
  • National Center for Learning Disabilities
  • National Urban League
  • The Arc
  • UnidosUS

Read the full joint statement.

How Can I Comment on the Proposed Head Start Changes?

HHS is accepting public comments on the proposed Head Start changes through October 6, 2026. We urge people with disabilities, families, educators, Head Start staff, advocates, and anyone who cares about inclusive early childhood education to weigh in and share why strong Head Start standards are worth protecting.

Submit a public comment by October 6, 2026.

Children with disabilities belong in early learning programs alongside their nondisabled peers. Head Start has helped make that possible for decades. Its standards should continue to protect quality, accountability, and meaningful inclusion for children with disabilities and their families.

Picture of a rally in front of the U.S. Capitol with someone holding a "Protect Medicaid" sign

California and Minnesota Medicaid Deferrals: What’s at Stake for People With Disabilities

/in /by The Arc

The Arc responds to more than $1 billion in federal Medicaid payment deferrals and calls for fraud oversight that protects continuity of care, disability services, and community living.

On July 21, 2026, HHS and CMS paused more than $1 billion in Medicaid payments to California and Minnesota citing the existence of fraud but without providing specific evidence of alleged fraud. This action threatens access to healthcare and community support needed by people with disabilities. The Arc of the United States is concerned that broad payment actions and sweeping fraud narratives are taking too broad an approach. The federal government’s actions limit Medicaid services for people with disabilities and their families and demonstrate a lack of understanding of what people with disabilities want: a life in the community, with as much independence as possible.

People with disabilities must be at the center of decisions about Medicaid, not treated as collateral damage in efforts to strengthen program integrity.

Katy Neas, CEO of The Arc of the United States, responds:

“The federal government’s actions are troubling because the goal should be to stop fraud while protecting continuity of care for those who need it. We hear from people every day who are scared and uncertain because they don’t know if their healthcare and services will continue. When conversations begin and end with fraud allegations, people lose sight of what Medicaid actually does and who depends on it. Medicaid helps people with disabilities get out of bed in the morning, attend school, get into the workforce, and be a part of their community. It helps families balance the need to care for their loved one with daily, intense support needs, while they work to put food on the table and care for the whole family. And it provides millions of people access to health insurance. Strong oversight to weed out fraudulent activities and a strong service delivery program are not competing goals. We can and must do both.”

For Reporters

Katy Neas is available for interviews about Medicaid, home and community-based services (HCBS), and how federal and state Medicaid policy affects people with disabilities and their families. For media inquiries or to request an interview, contact dilworth@thearc.org.

A man in a wheelchair sits at a desk at home, reviewing paperwork next to an open laptop.

New Medicaid Work Rules: What People With Disabilities and Families Should Know

/in /by The Arc

What is happening with Medicaid right now?

Last year, Congress passed a new Medicaid law.

The law created new community engagement rules (often called work requirements) for some adults who get Medicaid.

It impacts all but 7 states: Alabama, Florida, Kansas, Mississippi, South Carolina, Texas, and Wyoming.

Work requirements say some adults may have to work, go to school, volunteer, or do another approved activity to keep Medicaid.

For most states, the work requirements will begin on January 1, 2027.

Why does federal changes to Medicaid matter?

Medicaid helps people with disabilities get healthcare and daily support.

Medicaid can pay for:

  • Doctor visits
  • Medicine
  • Therapy
  • Mental health care
  • Personal care services
  • Help at home
  • Support to live in the community
  • Help finding and keeping a job

Losing Medicaid for even a short time can mean losing important care and support.

What do Medicaid’s new work rules mean for people with disabilities?

Many people with disabilities do not have to follow the work requirements.

For example, many people who get Supplemental Security Income (SSI) qualify for an “exemption” and do not have to meet the work requirements.

An exemption means a person does not have to follow the work requirements.

But some people with disabilities may still have to show they qualify for an exemption. This may include:

  • Adults with disabilities who do not get SSI
  • People waiting to learn if they qualify for disability benefits
  • People who lose SSI for a short time because of paperwork problems
  • Young adults with disabilities moving from children’s services to adult services

Some people with disabilities can qualify for an exemption if they are considered “medically frail.”

Medically frail means they have a disability or serious health problem that makes it hard to meet the work requirements.

People who want to qualify for this medically frail exemption may have to show:

  • They have a disability or serious health problem
  • Their disability or health problem makes it hard to meet the work requirements

Some people who qualify for an exemption may still have trouble getting one.

Do family caregivers also qualify for a work exemption under Medicaid?

Some family caregivers may also qualify for an exemption.

This may include parents, guardians, relatives, and other caregivers who regularly help a person with a disability.

Caregivers may still have to show they qualify.

How could paperwork make someone lose Medicaid?

Even people who qualify for an exemption could lose Medicaid if their paperwork is missing, delayed, or filled out incorrectly.

We have seen this happen before. Some people who should have kept their Medicaid lost it because of paperwork problems, not because they no longer qualified.

Why is The Arc concerned about recent changes to Medicaid?

The law was meant to protect people with disabilities and family caregivers from work requirements.

The new rule makes many changes that make it harder for people to show they qualify for an exemption. More people with disabilities may not be protected because of these changes.

People should not lose healthcare because of confusing rules, paperwork problems, or mistakes.

A white woman on a city street holding a cardboard protest sign that says "Education for All"

New GAO Report Shows Progress on Inclusion for Students With Disabilities

/in /by Robyn Linscott

More students with disabilities are learning in general education classrooms, but progress remains uneven at a time when federal education oversight is being split across multiple agencies

By: Robyn Linscott, Director of Education and Family Policy, The Arc of the United States

A new GAO report shows that more students with disabilities are learning in general education classrooms than they were a decade ago. But it also shows how uneven that progress is, and why this is the wrong time to split education oversight across multiple agencies.

The number of students with disabilities who spent at least 40% of the school day in general education classrooms increased 25% between the 2012-13 and 2023-24 school years. At the same time, progress varied sharply by state and across disability categories. So while more students with disabilities are learning alongside their peers, access to inclusion still depends too much on where a student lives and which students are being counted in that progress.

That news comes as federal oversight of schools is being split across multiple agencies. In late 2025, the Department of Education began shifting parts of K-12 education work to the Department of Labor. Then in June 2026, it announced plans to move special education oversight to the Department of Health and Human Services and civil rights enforcement to the Department of Justice. That means general education, special education, and civil rights are being handled in different places. That separates students with disabilities from the broader education system, weakens the link between classroom instruction and disability rights, and risks a more fragmented approach to inclusion across the country.

Inclusion is growing, but where a student lives matters

The GAO findings are good news. More students with disabilities are spending a substantial part of the day in general education classrooms, and the biggest increase came among students who spent at least 80% of the day there. That means more students are getting access to general education standards, peers, and the day-to-day life of school.

But that progress still isn’t happening evenly. Inclusion increased in 42 states and the District of Columbia, but the state-by-state differences were stark. The District of Columbia saw the largest increase, while North Dakota saw a decrease.

Are all students with IDD seeing the same gains in inclusion?

The report shows overall progress, but that progress isn’t reaching every group in the same way.

For students with intellectual disability, the number spending at least 40% of the school day in general education rose from 180,492 in 2012-13 to 199,274 in 2023-24. But as a share of the overall student population, that figure actually fell from 3.9% to 3.5%. For students with multiple disabilities, the number also rose, from 36,384 to 42,136, while the share fell from 0.8% to 0.7%. By contrast, for students with autism, both the number and the share increased sharply, from 253,750 to 543,868 and from 5.5% to 9.5%. While schools have gotten better at supporting students with autism in the general education classroom, more work needs to be done to meaningfully include students with intellectual disability and multiple disabilities.

Inclusion is moving in the right direction nationally, but the picture is more uneven for students with IDD. Some students with IDD still aren’t seeing the same gains in access to general education classrooms.

What does inclusion look like beyond classroom placement?

One of the most useful parts of the GAO report is that it goes beyond placement numbers. School officials told GAO that placement decisions are shaped by resources, family involvement, and school environment. They also described the role that relationships, extracurriculars, and school culture play in helping students with disabilities feel part of the school community.

That reinforces what we already know: a student can be in a general education classroom and still not be meaningfully included. Real inclusion means being part of the class, part of the school, and part of the opportunities that make up school life.

Why is now the wrong time to weaken federal special education oversight?

Students with disabilities need one education system that can connect classroom learning, special education supports, and civil rights protections. When those responsibilities are spread across different agencies, it becomes harder to give schools clear guidance, harder to hold states accountable, and harder for families to get answers when something goes wrong. A child who’s denied services, pushed out of the classroom, or excluded from school life shouldn’t have to navigate a maze of agencies to get help.

It also pushes disability further away from education itself. The Arc has already warned that moving IDEA oversight into HHS risks treating disability more as a health or services issue than as part of a student’s experience in school. That’s the wrong approach. Students with disabilities are students first, and their rights belong in the education system.

The timing makes this even more concerning. The Department of Education’s latest IDEA determinations show that only 20 states met requirements for serving students with disabilities. When so many states are still falling short, the answer should be stronger oversight and clearer accountability, not moving special education farther away from the education system.

We can’t afford to backslide on this progress

Inclusion is increasing nationally, and that’s worth recognizing. But the gains are uneven, which is why strong federal oversight still matters. This is not the time to move special education farther away from the rest of education. It’s not the time to split classrooms, disability rights, and school accountability across different agencies. And it’s not the time to accept a system where inclusion still varies too widely by state and where some disability groups still are not seeing the same gains. We’ve made progress, and now we need to protect it.

Group picture of people with disabilities and other advocates after attending a Medicaid work requirements hearing on Capitol Hill in Washington, DC

How Ohio Families Defended Medicaid Support for Family Caregivers

/in /by The Arc

Around the country, everyday families are piecing together caregiving because they have no other choice. Some states have found ways to support family caregivers in ways that make it work for people with disabilities, their loved ones, and the care system.

In a structured program, monitored by the state Medicaid agency, some family caregivers are paid a modest amount to support their loved one. It gives the person with a disability a reliable and familiar caregiver, and it takes some pressure of families juggling all aspects of their lives – work, family, caregiving, and more.

But when Ohio lawmakers prepared to vote on legislation that would prohibit family members from being paid through Medicaid programs, disability advocates and families mobilized immediately.

Family Caregivers Are the Backbone of America’s Care System

Family caregivers are already doing the work that keeps America’s long term care system functioning.

According to a recent AARP report, family caregivers now provide more than $1 trillion worth of care each year in the United States. Nearly 59 million Americans care for aging parents, spouses, children with disabilities, neighbors, and other loved ones, contributing an estimated 49.5 billion hours of care annually. If that care were compensated at market rates, it would be valued at approximately $1.01 trillion every year.

Most of this work is unpaid. 

Family caregivers help loved ones bathe, dress, prepare meals, manage medications, attend medical appointments, and increasingly perform complex medical and nursing tasks that were once provided in institutional settings.

More than half of family caregivers now provide high intensity care, averaging 27 hours of caregiving each week. The 49.5 billion hours of care they provide annually is equivalent to nearly 24 million full-time workers, roughly 17 percent of the entire U.S. workforce.

This caregiving work is not optional.

Ohio, like many states, faces a severe direct care workforce shortage.

Providers frequently struggle to fill authorized care hours, leaving families to step in and provide support that Medicaid cannot otherwise deliver. Without family caregivers, many people would go without critical assistance with daily activities, medication management, transportation, and personal care.

Without these caregivers, millions more Americans would rely on expensive institutional care, dramatically increasing costs for taxpayers. In fact, the economic value of family caregiving now exceeds total federal, state, and local Medicaid spending nationwide.

Ohio’s Disability Community Mobilized Quickly

The proposal moved quickly, but so did Ohio’s disability community.

The Arc of Ohio, self-advocates, family caregivers, providers, and aging advocates mobilized rapidly to educate lawmakers about the devastating consequences the proposal would have for people with disabilities and older adults. Committee hearings were packed with people with disabilities, family caregivers, and advocates who shared deeply personal stories about what Medicaid-funded family caregiving makes possible and what would happen if that support disappeared. Wheelchairs lined the hearing room as lawmakers listened to testimony from families who described the realities of navigating a strained care system and the essential role they play in keeping their loved ones safe at home.

The testimony shifted the conversation to the real experiences of Ohio families. Several legislators were visibly moved during the hearings.

Within hours, the proposal to prohibit family caregiver payments had been removed from the bill, demonstrating the power of coordinated advocacy and authentic lived experience.

The Bigger Problem: When Allegations of Fraud Becomes an Excuse to Cut Care

The Ohio debate reflects a troubling national trend.

Across the country, allegations of fraud are increasingly being used to justify greater scrutiny of Medicaid, home and community-based services (HCBS), and family caregiving programs. Program integrity matters and fraud should be rooted out. But in the process, what’s happening around the country now is making it harder for people to access the care they need.

Medicaid and other safety net programs are already subject to extensive federal and state oversight, and the overwhelming majority of beneficiaries, family caregivers, and providers follow the rules. Yet fraud narratives increasingly cast suspicion on family caregivers and community-based providers who fill critical gaps in an already strained care system.

These attacks go beyond program integrity. They devalue caregiving, undermine the rights of people with disabilities to receive services at home, and threaten a care infrastructure that depends on family caregivers, whose unpaid contributions exceed $1 trillion annually.

What’s Next and How You Can Help

Advocates in Ohio prevailed. Following overwhelming opposition from people with disabilities, families, and advocates, the proposal to eliminate Medicaid waiver payments for family caregivers was removed from the legislation moving forward.

This victory was built on decades of advocacy by self-advocates, family members, disability rights organizations, and The Arc’s network.

Right now, The Arc of the United States and our chapters are pushing back against threats to Medicaid, HCBS, and other programs that make community living possible. And those threats are coming from many avenues.

You can help by:

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

Broad Coalition Urges Congress to Keep Special Education and Civil Rights in the Department of Education

/in /by Jackie Dilworth

The Department of Education calls its plan to move special education oversight to Health and Human Services and school civil rights enforcement to the Department of Justice a “partnership.” Disability, civil rights, education, parent, and educator organizations see something very different: core education and civil rights responsibilities being moved away from the agency Congress charged with protecting them.

The Arc of the United States joined a broad coalition urging Congress to reject these transfers and keep special education, Section 504 enforcement, vocational rehabilitation, and school civil rights protections connected inside the Department of Education. Read The Arc’s full statement on what this move could mean for students with disabilities, families, schools, and civil rights enforcement.

Download the Coalition Letter

Full Coalition Letter

FOR IMMEDIATE RELEASE
June 18, 2026

Broad Coalition of Disability, Civil Rights, and Education Organizations Denounces ED’s Latest Transfers of Core Functions

Washington, D.C. — The undersigned disability, civil rights, and education organizations strongly oppose the Administration’s efforts to transfer the Office of Special Education and Rehabilitative Services (OSERS) from the U.S. Department of Education (ED) to the Department of Health and Human Services (HHS) and the Office for Civil Rights (OCR) to the Department of Justice (DOJ) through Interagency Agreements (IAAs). These agreements undermine the core foundation of federal disability, education, and civil rights policy and implementation.

Students with disabilities deserve educational systems that are designed around their needs, rights, and opportunities, not administrative restructuring that risks disrupting critical services and protections. They deserve equitable access to education, robust protections under the law, and an intact Department of Education that is committed to their success and steadfast in defending their rights.

Far too many students experience unacceptable barriers to receiving services and supports – but these transfers do not reflect meaningful solutions to this problem. While ED states that stakeholder input was considered, these IAAs do not reflect the concerns widely expressed by parents, educators, disability organizations, and civil rights advocates. Congress specifically entrusted ED with administering the Individuals with Disabilities Education Act (IDEA), enforcing Section 504 protections in public schools and colleges, overseeing vocational rehabilitation programs, and safeguarding the civil rights of students with disabilities. Congress has repeatedly reauthorized and strengthened these laws within the Department since its establishment in 1979, creating an integrated framework for students with disabilities that connects educational opportunity, civil rights enforcement, transition services, workforce preparation, and employment outcomes.

Transferring OSERS to HHS moves critical education, transition, and employment programs into an agency primarily focused on health care, weakening the coordination between schools, vocational rehabilitation, and postsecondary opportunities. Furthermore, separating OSERS from the Office of Elementary and Secondary Education (OESE), which funds and oversees K-12 education programs, segregates disability-related education programs from the broader education system and weakens the coordination necessary to ensure students with disabilities are fully included in general education. Special education is not a separate enterprise. IDEA is built on the principle that students with disabilities should be educated alongside their peers and have access to the same academic standards, accountability systems, and opportunities for success. State education leaders and educators⸺including both general and special educators⸺also rely on ED’s expertise, guidance, monitoring, and technical assistance; responsibilities that Congress unilaterally funds and directs the Department to provide.

Likewise, transferring OCR to DOJ separates education-focused civil rights enforcement from the agency responsible for education policy and oversight, exposing students and their families to longer wait times when discrimination is occurring in schools and risking the loss of specialized expertise that students and families rely upon to resolve their complaints and drive necessary improvements in school policy and practice to prevent future discrimination. It will also discourage some families from seeking assistance or filing complaints due to concerns about engaging with a law enforcement agency rather than experts in education and disability law.

Congress intentionally built an education and vocational rehabilitation continuum that supports individuals with disabilities from early intervention through school, postsecondary education, and employment. Moving OSERS to HHS and OCR to DOJ dismantles this coordinated and cohesive approach and threatens decades of progress advancing educational, employment, and civil rights outcomes for students with disabilities.

The undersigned organizations urge Congress to reject these transfers and preserve the Department of Education’s longstanding and Congressionally mandated roles to lead, direct, oversee, administer, and enforce the laws and programs that support opportunity, inclusion, and success for all students with disabilities.

Organizations that Signed the Letter

The letter was signed by a broad coalition of national, state, and local disability, civil rights, education, parent, educator, and community organizations, including The Arc of the United States, ACLU, National Disability Rights Network, Council for Exceptional Children, National Education Association, National Center for Learning Disabilities, Disability Rights Education and Defense Fund, COPAA, and dozens of state and local groups across the country. Download the full coalition letter to see the complete list of organizations.

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

Moving Special Education and Civil Rights Out of Education Department Risks a Patchwork of Rights for Students With Disabilities

/in , , /by Robyn Linscott

Today, the U.S. Department of Education announced plans to move the Office of Special Education and Rehabilitative Services (OSERS) to the U.S. Department of Health and Human Services (HHS) and the Office for Civil Rights (OCR) to the U.S. Department of Justice (DOJ). The Arc of the United States warns that the move disregards federal law placing the Office of Special Education Programs (OSEP) in the Department of Education and would make it harder for students with disabilities to access services, resolve discrimination, and hold states accountable under IDEA, the 50-year-old law that guarantees a free appropriate public education tailored to each child’s unique needs.

This plan follows interagency agreements announced in November 2025 that began shifting major Education Department programs to other federal agencies. But these offices are supposed to work together. Students with disabilities need access to school, special education services, accommodations, accessibility, and civil rights enforcement under the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA). Moving that work across separate departments risks more confusion, longer delays, and less accountability for families and schools.

The Education Department says OSERS and OCR will keep their legal responsibilities and continue their work without interruption. Calling this a partnership doesn’t change what’s happening: core education and civil rights functions would be moved into agencies that weren’t created to oversee schools, special education, or education-based civil rights enforcement.

“Students with disabilities don’t experience school in agency silos,” said Katy Neas, CEO of The Arc of the United States and former Deputy Assistant Secretary and Acting Assistant Secretary in the Office of Special Education and Rehabilitative Services at the U.S. Department of Education. “A student who is denied services, disciplined for disability-related needs, or blocked from an accessible classroom needs one federal education system that can see the whole picture and act. Moving special education to HHS and civil rights enforcement to DOJ would split apart the offices responsible for making disability rights real in schools, leaving families chasing answers across the federal government instead of getting accountability from one education agency.”

“HHS and DOJ have important roles, but they weren’t built to replace the Department of Education’s school-specific expertise,” said Robyn Linscott, Director of Education and Family Policy at The Arc of the United States. “Moving IDEA oversight into HHS pushes students with disabilities toward a medical model, where disability is treated as a diagnosis to manage instead of a natural part of human life. When that mindset drives education decisions, students are more likely to be segregated, underestimated, or treated as separate from the school community. IDEA belongs in an education agency because it is about classrooms, IEP meetings, behavior support, accessibility, and whether students can learn alongside their peers.”

Why OSERS and OCR belong inside the Education Department

OSERS has two primary components: the Office of Special Education Programs (OSEP) and the Rehabilitation Services Administration (RSA). OSERS oversees federal programs that shape the school experience for students with disabilities and help students move from school to work and community life. It distributes federal special education funding, provides guidance to states and schools, supports teacher training, funds research on effective instruction, and helps ensure students receive the services they are legally entitled to receive.

OCR investigates discrimination in schools, including disability discrimination involving accommodations, accessibility, harassment, restraint and seclusion, and discriminatory discipline. For many families, OCR is one of the few ways to seek federal enforcement without going straight to court.

Why IDEA belongs in an education agency

IDEA is an education and civil rights law. It was created because children with disabilities were excluded from public schools, denied instruction, or sent to institutions instead of being educated in their communities.

Moving IDEA oversight into the Department of Health and Human Services risks changing how the federal government understands and responds to students with disabilities. Instead of focusing on classroom access, instruction, inclusion, services, and school accountability, it could push decisions toward diagnosis, treatment, and care management. Students with disabilities may need health care and related services, but they are students first.

That distinction matters. A medical model can lead to lower expectations, more segregation, and decisions based on diagnosis instead of what a student needs to learn and participate in school. IDEA’s promise depends on schools seeing students with disabilities as full members of the school community. That work must stay connected to the federal education systems that guide schools, support educators, and hold states accountable.

What this could mean for families

Families already spend months, sometimes years, trying to get schools to follow the law. Splitting special education and civil rights enforcement across agencies could add another layer of confusion when students can’t afford to wait.

For families of students with disabilities, this could mean:

  • More confusion about where to go when a child is denied services or accommodations
  • Longer delays when a student is missing instruction, therapies, supports, or accessible materials
  • Less coordination between special education oversight and civil rights enforcement
  • More barriers when a student faces harassment, exclusion, restraint, seclusion, or discriminatory discipline

A student’s education shouldn’t depend on whether their family can figure out which federal agency now owns which piece of the law.

What this could mean for schools and states

Schools and state education agencies need clear, consistent federal guidance. Moving OSERS to HHS and OCR to DOJ could make it harder for states and districts to understand expectations and resolve problems early. This plan could lead to:

  • Conflicting guidance from different federal agencies
  • Slower answers on IDEA and Section 504 questions
  • Less coordination between funding, technical assistance, and enforcement
  • More uneven implementation across states
  • Greater risk that families in different places receive different levels of protection

Federal disability rights shouldn’t depend on a student’s ZIP code or on which agency happens to hold part of the responsibility.

Students can’t get back lost learning time

The Department of Education’s special education and civil rights offices have been weakened by staff cuts, office closures, and delays in enforcement. Recent reports and staffing changes have shown what happens when federal capacity shrinks: complaints take longer, guidance becomes less clear, and families are left wondering whether anyone is responsible for enforcing the law.

When a student with a disability goes without the services, accommodations, accessible materials, instruction, or behavior supports they need, the impact can last a lifetime, shaping whether they graduate, continue their education, find work, participate in their community, and feel like school is a place they belong.

Moving these offices out of the Department of Education would deepen that instability at the exact moment students, families, schools, and states need clarity. The rights in IDEA and Section 504 haven’t changed, but rights are only as strong as the systems that enforce them.

Why The Arc is taking action

The Arc has fought for the education rights of students with disabilities for decades. Our advocacy helped lay the groundwork for IDEA, and we have worked ever since to protect and strengthen the systems that make that law real for students and families.

The Arc is also a plaintiff in Somerville Public Schools et al. v. Trump et al., a federal lawsuit challenging efforts to dismantle the U.S. Department of Education. We joined that case because weakening federal education capacity threatens special education oversight, civil rights enforcement, and the ability of students with disabilities to access the education federal law promises them.

The Arc’s policy and legal advocacy teams continue to meet with policymakers and education officials to protect IDEA, Section 504, and the federal infrastructure students with disabilities rely on.

We urge Congress to step in immediately, assert its constitutional role over federal agencies, and keep critical education and civil rights programs where the law says they belong. Students’ rights may remain in statute, but those rights are only meaningful when families can access the systems that enforce them.

For reporters: interview availability

The Arc can connect reporters with national policy experts who can explain the impact of this decision on students with disabilities nationwide.

Robyn Linscott, Director of Education and Family Policy at The Arc of the United States, is available for interviews on what this move means for students with disabilities, families, schools, IDEA, Section 504, and federal civil rights enforcement.

Katy Neas, CEO of The Arc of the United States and former Deputy Assistant Secretary and Acting Assistant Secretary in OSERS, is also available for interviews on the history and federal role of special education oversight.

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