A row of parked school buses

Disability Organizations Condemn Inclusion of Voucher Bill in House Markup

/in /by Jackie Dilworth

Today, the House Ways & Means Committee will mark up a budget reconciliation bill that will include a $20 billion proposal diverting public funds to private schools via the Educational Choice for Children Act (ECCA). While the bill includes new language about so-called “protections” for students with disabilities, it is insufficient in providing meaningful, enforceable protections for students with disabilities and their families. The National Center for Learning Disabilities, along with The Arc of the United States, the Council for Exceptional Children, and the Center for Learner Equity, are staunchly opposed to this bill.

Consider this math: ECCA is estimated to fund private school tuition for about 1 million children for $5 billion a year (averaging $5,000 per child). By contrast, the Individuals with Disabilities Education Act (IDEA) currently serves 7.5 million children and receives $14.6 billion in federal funding a year, averaging less than $2,000 per child. This funding level is about 10% of the average per-pupil expenditures. Instead of fully funding IDEA, a promise Congress has never fulfilled, this Congress chooses to fund vouchers, which ultimately benefit the wealthy instead of investing in educating students with disabilities, the overwhelming majority of whom attend public schools.

Further, we reject the many ways in which students with disabilities would still be discriminated against, losing rights under IDEA if this bill passes. Under this proposal, parents may not be fully aware that if they take the voucher, they will jeopardize the rights of their children under IDEA, including:

  1. The right to be educated in the least restrictive environment, a critical protection to ensure students with disabilities are not segregated from their nondisabled peers.
  2. Parental rights, including dispute resolution and due process, an imperative for families to resolve disagreements and ensure educational access.
  3. Student behavioral protections, manifestation determination, essential because disability and behavior are linked and unmet needs can result in challenging behaviors.

The bill makes no mention of students’ protections under Section 504 of the Rehabilitation Act or the Americans with Disabilities Act, which private religious schools are exempt from.

“The guarantee of rights and protections for students with disabilities using these vouchers is disingenuous at best and crooked at worst, without the other critical provisions of IDEA,” says Dr. Jacqueline Rodriguez, CEO of the National Center for Learning Disabilities. “It is quite possible that families with disabilities will use a voucher under the pretense that their child will have the same rights when in fact they do not.”

“The rights to a free, appropriate public education for eligible students with disabilities remains even if federal and state funds are removed from the public education system. However, states will be extremely challenged to meet their obligation to these students if the ECCA becomes law,” says Katy Neas, CEO of The Arc of the United States. “Parents will have no choice but to sue their states to access the rights their children have been entitled to receive since 1975. And the parents of the 7.5 million children who receive special education services will prevail each and every time.”

“On the 50th anniversary of IDEA, now is the time for Congress to provide the funding it has failed to deliver over the decades for this landmark law. Instead, it is channeling public funds to private schools where there are no guarantees of protections for students with disabilities,” said Chad Rummel, Executive Director of the Council for Exceptional Children. “We call on Congress to rethink this strategy and prioritize public schools, which are designed to serve all children, and educate 90% of students nationwide each day, including 7.5 million children with disabilities.”

“The House proposal amounts to public dollars funding choice without rights. It misleads American families to believe their child with an individualized education program (IEP) will have access to both a federal education voucher and their IDEA protections when they enroll their child in a private or parochial school. But it does not,” stated Jennifer Coco, Interim Executive Director of the Center for Learner Equity. “The fine print of this proposal literally takes the ‘individualized’ out of IEP.”

Picture of the U.S. Capitol Building in Washington, DC

Historic Medicaid Cuts Are on the Table This Week. Here’s What People With Disabilities Need to Know.

/in /by Jackie Dilworth

Last night, staff of the House Energy and Commerce Committee released their draft budget plan that outlines how they will cut Medicaid—and it’s moving fast. The committee will debate it this week.

Let’s be clear: This proposal threatens the health and independence of millions of people, including people with disabilities, children, older adults, and caregivers. If this bill becomes law, states will be forced to make impossible decisions that would gut essential services—and an estimated 13.7 million will lose coverage.

“People with disabilities will suffer if these proposals become law. It will mean people with disabilities ending up in emergency rooms instead of getting preventive care. It will mean people being forced to live in institutions or become homeless. It will mean caregivers unable to support their loved ones. It will mean states not having the tools they need to respond to local needs. Medicaid is not just a line item in a budget—it’s lifeline. We will not stop until members of Congress understand the harm these proposals will have on the people with disabilities,” said Katy Neas, CEO of The Arc of the United States.

What’s in the proposal?

Work requirements that put up red tape instead of support. These are cuts in disguise. Congress says they only apply to “able-bodied” adults. That vagueness puts people with disabilities and chronic conditions at risk. We’ve seen this before: Arkansas tried it, and thousands lost coverage—not because they didn’t work, but because they couldn’t navigate confusing rules.

Eligibility checks every six months instead of once a year. That might sound small, but it’s not. The health of millions of people will be impacted. When eligible people lose coverage due to red tape, they are more likely to end up in an emergency department due to complications from untreated chronic conditions. Red tape and paperwork will cause eligible people to lose coverage, including people with disabilities who rely on Medicaid for health care, home care, and the support they need to live in their communities. This will also unnecessarily increase Medicaid administrative expenses for states, who will have to figure out how to pay for and administer checks, diverting funding away from beneficiaries.

Higher costs for people who can least afford it. The plan raises doctor visit co-pays for people just above the poverty line, around $15,650/year for a single person. Even small cost increases force people to skip care, delay treatment, and risk emergencies.

Big federal cuts passed off to states. This bill doesn’t just shift dollars—it shifts risk. States would be forced to redesign their entire Medicaid programs on the fly or cut services. Every state would face the same reality: fewer resources, more complexity, and less flexibility to meet people’s needs.

What’s next?

The House Energy and Commerce Committee is marking up the bill this week. If approved, the House of Representatives and the Senate would have to vote on it before it would go to the President for his signature.

The Arc has been fully focused on the fight against Medicaid cuts since they became apparent last fall—and we’ll keep fighting. We need every voice raised to stop this before it’s too late.

Ashley Glears, a person with cerebral palsy, pictured with her mom

People With Disabilities Reflect on Their Moms This Mother’s Day

/in /by Jackie Dilworth

Moms—or the people who love us like moms—are often the ones who just get us. They keep life moving. They see potential where others see limits. And for people with disabilities, that love can take many forms: hands-on care, fierce advocacy, deep listening, and unshakable belief.

Some moms manage feeding tubes, therapy schedules, and school meetings—while also working, caregiving for others, and managing their own health. Others cheer their adult children on as they build careers, push for justice, and live life on their own terms.

There’s no one path. No single story. But what many moms share is the everyday power of showing up.

This Mother’s Day, we asked people with disabilities: What impact has your mom—or a mother figure—had on your life?

Here are six reflections on love, strength, and support.

Ashley Glears pictured with her Mom

Ashley and her mom

“When I was born with cerebral palsy, my mother didn’t panic. She prepared. She understood the meetings that would come. The assumptions. The coded language. The way people talk about disabled children in lowered tones, as if to soften the blow of a life they’ve already decided won’t go far. She didn’t wait for the world to believe in me. She built the foundation herself. She became a speech-language pathologist—not just to help me speak, but to ensure I would never be spoken for. She pulled together a support system—therapists, educators, and friends who worked with me after hours, without compensation, because we didn’t have time to wait for permission. She created access where there was none. She raised me to speak, to move, to lead—regardless of whether the system was ready for me. She is still doing the work. Still mentoring. Still reshaping how public schools serve children with disabilities. Still protecting futures—because she understands what’s at stake.”
— Ashley Glears lives in Maryland and has cerebral palsy with right hemiplegia

Chloe Rothschild pictured with her mom

Chloe and her mom

“My mom is always there for me. Over the years, she has taken me to hundreds—probably thousands—of appointments. She has helped advocate for the services and supports I’ve needed to succeed. She has attended numerous conferences, advocacy trips for board meetings, and other events with me over the past 10 years because she knows how important it is to me to participate in these events. My mom has helped encourage self-advocacy skills in me starting at a young age as she made sure that I was involved in my IEP meetings in some capacity starting at a young age. Even during the harder moments, my mom has always been there by my side. My mom is one of my biggest advocates and supporters.”
— Chloe Rothschild lives in Ohio and has autism

Russell Lehmann pictured with his mom

Russell and his mom

“I cannot overstate the impact my mom has had on my life. She has always taken the time to enter my world and meet me where I am, something society rarely does. Autistic individuals are often pressured to fit in so they don’t stand out, to avoid bullying, social rejection, and exclusion. But in doing so, we risk losing ourselves. My mom never let that happen to me. She loved me when it felt like no one else did. She held me, and still holds me, through meltdowns. She sits beside me when I feel lost in a world that doesn’t make sense. Most of all, she truly sees me. She validates my struggles and recognizes the immense effort I put in every day just to achieve what others take for granted. Because of her, I am who I am today. She nurtured within me the belief I so desperately needed as a child; the belief that led me to create my own career. Thank you, Mom. I love you so much.”
— Russell Lehmann lives in California and has autism, OCD, depression, and anxiety

Johanne Mayer pictured with her mom

Johanne and her mom

“My mom is my best friend and I couldn’t imagine my life without her. I wouldn’t be who I am and where I am now if it wasn’t for her influence. She always encourages me to go after things I want and her expectations for me have never been lower than my sisters’. She has always made me feel like I’m capable of more than I know. I always try to reach for the stars because of her belief in me. She is the best light in my life.”
— Johanne Mayer lives in New Jersey and has Down syndrome

Sydney Badeau pictured with her mom

Sydney and her mom

“My mom has helped me grow over the years. Growing up, we spent a lot of time together, and she would frequently visit my schools if classes weren’t going well. She also attended all of my IEPs from kindergarten to senior year of high school. She made sure that I saw her advocating for me so that one day I could advocate for myself! She always puts others first and makes sure that everyone has everything they need to succeed.”
— Sydney Badeau lives in Wisconsin and has dyspraxia, a nonverbal learning disorder, and a sensory processing disorder

Sarvesh Chandran pictured with his mom

Sarvesh and his mom

“My mom is my biggest supporter. She believes in me and she gives me the confidence to believe in myself. My mom loves me unselfishly and she does her best every day to help me to live a happy and worry-free life. She encourages me to be brave and try new things. My mom advocates for me everywhere. I am very thankful for her. I feel safe and comfortable because of my mom.”
— Sarvesh Chandran lives in Arizona and has autism and severe apraxia

These stories remind us: the best relationships are built on respect—for each other’s journeys, struggles, growth, and dreams.

To the moms of people with disabilities: Thank you. For your tireless hearts, unwavering belief, and all the ways—loud and quiet—you lift up your children.

To the people who shared their stories: Your lives and leadership light the way, whether guided by a mom or forged on your own.

And to anyone for whom “mom” means something different: We honor your story, too. Not everyone has a mom—or a safe relationship with their mom. This day can be complicated. If that’s true for you, we see you. Love doesn’t always follow one path. Whether your “mom” is a friend, a relative, a caregiver, or chosen family—or whether you’re still figuring it out—we honor the people who show up, stand by you, and believe in your worth.

A bunch of letters scattered with AUTISM spelled out in the middle

Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community

/in /by Jackie Dilworth

WASHINGTON, DC – As national organizations dedicated to advancing the well-being of autistic individuals, the Autistic Self Advocacy Network, Autism Society of America, Autism Speaks, The Arc of the United States, Autistic Women and Non-Binary Network, Autistic People of Color Fund, and partners across the disability and public health sectors stand united in our call for science-based decision-making and increased investment in the research, programs and services the autism community needs to live fully.

While our organizations reflect a broad range of perspectives and experiences, we are aligned in the following principles:

  • Vaccines Do Not Cause Autism. Decades of scientific research confirm there is no causal link. Public health messaging must be grounded in science and protect all communities.
  • Autistic Individuals Deserve Respect and Support. Public dialogue and policy must reflect the inherent value, rights, and diverse needs of autistic people.
  • Evidence-Based Policy Is Essential. We call on policymakers to work in collaboration with autistic individuals, families, researchers, clinicians, and disability organizations to ensure policy is grounded in science and responsive to community needs.

We are deeply concerned by growing public rhetoric and policy decisions that challenge these shared principles. Claims that autism is “preventable” is not supported by scientific consensus and perpetuate stigma. Language framing autism as a “chronic disease,” a “childhood disease” or “epidemic” distorts public understanding and undermines respect for autistic people.

At the same time, federal proposals to reduce funding for programs like Medicaid, the Department of Education, and the Administration for Community Living threaten the very services that autistic individuals and their families rely on. Research must be guided by credentialed experts and inclusive of the complexity and diversity of the lived experiences of the autism community—not redirected by misinformation or ideology. As leaders in the fields of Autism and public health, we are committed to contributing meaningfully to the ongoing dialogue and initiatives led by HHS.

We urge public leaders, institutions, and media to uphold scientific integrity and work together to strengthen—not weaken—the infrastructure of support for the entire autism community.

Signed By:

Autistic Self Advocacy Network, Colin Killick, Executive Director
Autism Society of America, Christopher Banks, President and CEO
Autism Speaks, Keith Wargo, President and CEO
The Arc of the United States, Katy Neas, CEO
Autistic Women & Nonbinary Network, Sharon daVanport, Executive Director
Autistic People of Color Fund, Ly Xīnzhèn Zhǎngsūn Brown, Founding Executive Director
Autism Empowerment, Karen Krejcha, Co-Founder, Executive Director
Dan Marino Foundation, Mary Partin, CEO

Picture of the lights on top of a police car with a dark background

Statement on the Police Killing of an Idaho Autistic Teen

/in /by Jackie Dilworth

Below is a statement from Leigh Anne McKingsley, The Arc’s Senior Director of Disability & Justice Initiatives, on the killing of Victor Perez, an autistic teenager in Idaho who was shot and killed by police.

Being disabled should never be a death sentence.

Victor Perez, a 17-year old with autism, needed an intervention when police were called to his home. Instead, he was shot multiple times and later died in the hospital.

Too many people with autism and other disabilities, especially those who are Black or Brown, face violence instead of support in times of crisis. This must change. This is a failure of systems that are supposed to protect and serve. It’s a failure to recognize each person’s humanity, to provide training, and to respond with care. The more families hear stories like this, the more fearful they are to call police – or anyone – for help.

The Arc grieves the loss of Victor’s life and so many others before him, and we demand accountability. We urgently need investment in disability-informed crisis response systems – not more punishment for behaviors rooted in disability. Every person deserves to feel safe in their own community.

Interactions between police and people with intellectual and developmental disability (IDD), including autism, end in violence more often than most people may realize. According to research, almost half of people killed by police have some kind of disability.

No more than 20 states require law enforcement training on intellectual and developmental disabilities or related conditions, including autism. Training on this topic is too haphazard and not standardized across police agencies in the U.S., meaning that some officers get trained while others don’t – this leaves too much to chance when it comes to calls involving people with disabilities.

The Arc is committed to educating police, other first responders and other professionals in the criminal justice system about people with IDD. The Arc’s National Center on Criminal Justice and Disability (NCCJD) is key to this effort.

Law enforcement must receive effective training to prepare them for situations involving interactions with people with disabilities. NCCJD is a partner with The International Association of Chiefs of Police on the Crisis Response and Intervention Training (CRIT) project that brings more information about IDD into standard police training on mental health and IDD. The CRIT training seeks to include people with IDD, including autism, as co-trainers to increase officer’s personal connection to and experience with those with disabilities in non-crisis situations.

Every person deserves to feel safe in their own community, and as a society we must put measures in place to ensure communication is clear, accommodations are provided, and systems are inclusive of people with disabilities to ensure safety for all.

Three people stand on a grassy area in front of the U.S. Capitol holding bright orange signs that say “Protect Medicaid.”

The Truth About Medicaid Expansion and Disability Services

/in , /by The Arc

In recent debates over Medicaid’s future, some have suggested that extending coverage to low-income adults through Medicaid expansion has diverted resources away from people with intellectual and developmental disabilities (IDD) and undermined the program’s original purpose.

That claim is both misleading and dangerous. It risks turning vulnerable communities against one another and distracting from the real threats facing Medicaid that come from significant cuts.

Medicaid Expansion and HCBS Waiting Lists Are Not Connected

The argument that Medicaid expansion led to longer waiting lists for people with disabilities who need home and community-based services (HCBS) is often repeated but easily disproven.

There is no correlation between whether a state expanded Medicaid and whether its HCBS waiting list grew. 10 of the 11 states without HCBS waiting lists are expansion states, and the two states with the largest waiting lists—Texas and Florida—are non-expansion states. In fact, Texas’ waiting list alone represents nearly half of the nation’s total.

Because HCBS programs are optional services within Medicaid, states control their own waiver programs, including how many people are served and how much funding is allocated. Thanks to growing support for HCBS, Medicaid has made significant progress in shifting long-term care away from institutions and into the community. In 2022, 65% of long-term services and supports (LTSS) spending went to HCBS, compared to only 18% in 1995.

Blaming Medicaid expansion for state-level decisions about HCBS funding misrepresents how the program works and distracts from the need for stronger investments in these essential services.

Cutting Medicaid Funding Won’t Help People With Disabilities

Reducing or eliminating federal funding for the Medicaid expansion population would not free up money for people with IDD; it just means less funding overall for the entire program.

Medicaid is a vital part of our social safety net, which ensures that everyone who needs care can get it, whether they are managing a chronic condition, caring for a child with disabilities, or working a low-wage job without access to employer-provided coverage.

We should be fighting to expand services and reduce waiting lists, not blaming other groups of enrollees for long-standing systemic challenges.

A Medicaid Program That Works for Everyone Is the Goal

The truth is Medicaid expansion has strengthened the program overall by bringing in new resources to support people and expanding access to care for millions of people, including many with IDD and care workers. Many people with serious health conditions and disabilities do not meet the strict disability eligibility standards necessary to access Medicaid through the Supplemental Security Income program (SSI) or do not want to impoverish themselves to meet the SSI income and asset limits.

Medicaid expansion has helped many people with disabilities access critically needed health care. What endangers HCBS and other critical supports for people with disabilities are proposals to slash federal support for Medicaid under the pretext of targeting waste, fraud, and abuse within the program.

We should be investing in HCBS, increasing pay for caregivers, and expanding access to LTSS, not rolling back coverage or undermining Medicaid’s foundation.

Q&A: What’s Going on in Washington, DC, With Medicaid Cuts?

/in , /by The Arc

Medicaid is at the center of a major budget debate in Washington, DC. But what does this mean for people who rely on Medicaid? And how will proposed changes, including work requirements and spending cuts, impact health care for people with disabilities, seniors, and low-income families?

In this Q&A, we break down what’s happening, what’s at stake, and what comes next.

Q: Didn’t the President say he does not want cuts to Medicaid?

A: Yes, the President has stated on several occasions that he opposes cuts to Medicaid. Many members of Congress also state opposition to cutting Medicaid. However, the budget resolution that passed the House on February 25, 2025, which the President also said he supports, lays the groundwork for over $880 billion in cuts to Medicaid and other low-income programs over the next 10 years. Think of it as the first inning in a long baseball game.

Watch our video for a plain language explanation.

Q: Some members of Congress say Medicaid is not mentioned in the House bill.

A: Correct. Medicaid is not mentioned in the budget resolution. However, the bill directs a specific committee—the House Energy and Commerce Committee—to find $880 billion in “savings” (over 10 years).

There is no way to achieve such “savings” or cuts without directly impacting Medicaid health care and critical services for people with disabilities, seniors, and low-income families. On March 5, the non-partisan Congressional Budget Office (CBO) published a letter detailing what programs could be cut to meet the $880 billion target.

The CBO letter confirms early expectations, finding that nearly all of the cuts could only come from Medicaid and the Children’s Health Insurance Program.

See KFF analysis.

Q: Some members of Congress say they are only targeting “waste, fraud, and abuse” in Medicaid. Is that true?

A: Everyone wants to eliminate waste, fraud, and abuse. Members of Congress are saying their goal is to get rid of waste, fraud, and abuse and that all the cuts can be financed by stopping waste, fraud, and abuse. We are skeptical.

Currently, the federal government and state governments have programs in place to prevent and detect waste, fraud, and abuse. In 2023, the Department of Health and Human Services recovered $1.8 billion in fraud. These efforts are essential, but in no way are significant to support $880 billion in cuts over 10 years. Moreover, the only way to get to this magnitude of cuts is to cut health care and services that people with disabilities, children, and adults rely on. People will be hurt by these deep cuts.

Q: Will work requirements impact people with disabilities on Medicaid?

A: Yes, despite claims that beneficiaries with disabilities won’t be affected by work requirements for Medicaid, research shows that work requirements don’t work—they don’t lead to higher employment rates and cause people to lose access to health care. These requirements, including increased paperwork, doctor’s signoffs, and other bureaucratic burdens, disproportionately impact people with disabilities who may face barriers to employment. They create real administrative waste. They achieve savings in the Medicaid program by reducing the number of people eligible for Medicaid, but they may raise states’ costs in administering the new requirements.

Watch our short video on work requirements.

Q: Some members of Congress say they want to restore the Medicaid program to its “original purpose.”

A: This refers to the people who were eligible before the Medicaid expansion (enacted in 2010), which created a new eligibility category for low-income adults to qualify for coverage. This expansion is especially beneficial for adults who might not qualify under traditional disability categories because their disability may not qualify them for coverage, or they may have slightly higher income.

Read more by KFF.

Q. What are the next steps in this process, and when can we expect them to happen?

A: The next step is for the Senate to take up the House-passed budget as soon as April. Once the House and Senate can agree on a unified budget resolution, the House Energy and Commerce and Senate Finance committees will make changes to programs to come in line with the budget targets. During this step we will see the proposed changes in the law that will result in the savings required by the Budget Resolution. The House and Senate will then have to pass the final reconciliation bills and be signed by the President.

Q: How is The Arc responding to these proposed cuts?

A: The Arc is committed to advocating for people with disabilities by highlighting the consequences of these policies. We are actively engaging with Congress and the Administration to protect Medicaid so that health care and disability services are not taken away.

Watch our CEO, Katy Neas, on CNN discussing Medicaid cuts.

For more information about the impact of cuts on states, see the following resources:

Ready to take action?

Send a message to Congress now and tell them to protect Medicaid for people with disabilities and their families!

Picture of the U.S. Capitol Building in Washington, DC

What’s Happening at the Social Security Administration? Here’s What People With Disabilities Need to Know.

/in , /by Jackie Dilworth

Millions of people with disabilities rely on Social Security benefits to survive. Recent changes at the Social Security Administration (SSA) may make accessing these benefits harder than ever. Long wait times, office closures and staff cuts, and policy rollbacks are already raising concerns and exacerbating customer service issues. Here’s what you need to know.

What Is Social Security and Why Does It Matter?

Social Security provides benefits to over 73 million people, including over 11 million people with disabilities. It offers financial protection for individuals and their families when a worker retires or dies, or when someone has a qualifying disability. Many people with disabilities depend solely on their Social Security or Supplemental Security Income (SSI) benefits and related health coverage for their basic survival.

  • Supplemental Security Income (SSI) helps people with disabilities and older adults who have little or no income and financial resources. SSI provides modest monthly benefits to help with basic needs like food, clothing, and shelter, averaging around $714 per month. In most states, recipients automatically qualify for Medicaid, which provides essential health care.
  • Social Security Disability Insurance (SSDI) provides benefits to workers with qualifying disabilities and their families. It also provides access to health insurance coverage from Medicare. A related benefit called the “Disabled Adult Child” or DAC benefit provides income support and Medicare coverage to adults whose disabilities began before they were 22 years old.

A Growing Crisis: Long Wait Times and Delays

Even before recent changes, SSA was already struggling with long wait times and backlogs processing applications for disability benefits. Every year, thousands of people die while waiting for a decision on their disability benefit application. In April 2025:

  • Over 1 million initial disability claims are pending—nearly double the number in 2019.
  • The average wait time for an initial disability decision is 232 days (nearly 8 months).
  • If an applicant is denied and requests a hearing, they can wait another 450 days (15 months)—meaning some people wait over two years for a decision.

These delays have real consequences. People with disabilities who can’t access the benefits they need risk financial hardship, homelessness, and worsening health conditions. In 2023, 30,000 people died while waiting to access Social Security benefits.

Staffing Cuts and Office Closures

In 2025, SSA has announced a dramatic reduction in staff and offices, including:

  • Plans to cut 7,000 employees (over 12% of the agency’s workforce).
  • Closure of 60% of SSA’s 10 regional offices, reducing key staff that help resolve problems with peoples’ benefits.
  • Closure of SSA’s Office of Civil Rights and Equal Opportunity, which handled reasonable accommodation requests and managed the agency’s civil rights complaints, including public complaints of discrimination on the basis of disability. This office’s statutory responsibilities have reportedly been divided and moved to other divisions within SSA.

Why does this matter? SSA workers process disability applications, answer calls, and help people navigate complex benefit rules. With fewer staff and the consolidations of regional offices, wait times could get even worse. The loss of key staff also raises concerns about SSA’s ability to modernize, maintain, and improve essential services, further limiting accessibility for beneficiaries. Modernizing SSA’s operations requires long-term investments in systems and processes that are being undercut by these changes.

New Barriers and Policy Rollbacks

New barriers and policies that harm beneficiaries are also being implemented, including:

  • Overpayment Collections: SSA can now withhold 50% of a person’s monthly SSDI check if they were overpaid, even if the overpayment was not their fault. This means someone’s SSDI benefit could suddenly be cut in half—potentially leaving them unable to make rent or buy food while the overpayment is collected or they request a waiver or alternate repayment plan. We spoke to KFF Health News about this issue in late 2023, and advocated for the pro-beneficiary policies that are now being rolled back.
    • SSI Exemption: SSI beneficiaries are exempt from this policy change and still have a 10% default withholding rate.
  • New Identity Verification Requirements: Starting April 14, 2025, SSA is implementing new measures to verify the identity of millions of people applying for benefits and changing their direct deposit information. Those who are unable to complete these processes online will be required to go to an SSA field office to verify their identity in-person.
    • Only applies to applications and direct deposit changes: These in-person requirements only apply in two situations: 1. When someone applies for benefits over the phone and their application is flagged as potentially fraudulent; or 2. When a beneficiary is not able to use online services to change the bank account that their benefits are deposited into. SSA is no longer allowing beneficiaries to change their direct deposit information by phone. Beneficiaries will now be required to use a online or in-person services to change their direct deposit information. Please note: You do not need to contact SSA or go to a field office to continue your monthly benefits at your current bank. More information is available on the SSA website.
    • These requirements will be especially burdensome for older adults, individuals who do not have reliable internet access or a smartphone, those that require assistance using online services, and those for whom online SSA services are not available. For example, there is no online application for Survivors’ Benefits and children under the age of 18 cannot have online Social Security accounts.
    • This will also significantly disadvantage beneficiaries living in rural communities who must travel long distances to reach in-person services.
  • Disability Hearings Impacted: SSA is closing some hearings rooms and has reportedly canceled some disability hearings because they could not use agency credit cards to pay for sign language interpreters or translators. This could create even more delays for applicants.

How This Affects People With Disabilities

To be clear, as of April 2, 2025, Congress and the Administration have not directly cut the benefit amounts that current Social Security recipients get each month, and they have promised not to cut Social Security benefits.

The ongoing disruption at the SSA will likely impact access to benefits, which can amount to an indirect benefit cut for both disability applicants and current beneficiaries experiencing problems with their benefits. It can also create an environment in which errors and benefit delivery interruptions may be more likely to occur. All of these changes have serious consequences for people with disabilities in the short-term and long-term:

  • Application Delays Reduce Benefits: Many Social Security benefits are calculated based on the date people apply. Delays accessing these vital benefits can result in lower overall benefit amounts for Social Security disability beneficiaries.
  • Benefit Interruptions: Disability beneficiaries already experience interruptions in their benefits for many different reasons—especially if they’re working. These changes at SSA could make benefit interruptions more frequent, longer, and more difficult to resolve.
  • Longer Wait Times for Benefits: These changes at SSA will likely increase the backlog of people waiting for a decision on their disability application. We are concerned that these longer wait times mean more disability applicants will die before they can get the Social Security benefits they need and deserve.
  • Harder to Get Help from SSA: Cuts to staff and resources make it more difficult to get assistance from SSA on the phone, online, and in-person. We have heard reports of 5-hour-long hold times for SSA’s 1-800 Helpline, brief outages of the ‘my Social Security’ online portal, temporary glitches displaying incorrect information about beneficiary payment status on online accounts, and month-long wait times to get an in-person appointment at an SSA field office.

Any changes to how SSA operates can be incredibly stressful for people with disabilities who need Social Security benefits to meet daily needs. For this reason, it is imperative that SSA be transparent about the changes they are making and the rationale for these changes. False claims about Social Security fraud also undermine trust in the system.

What Can You Do?

If you or a loved one relies on Social Security benefits, here’s some information to keep in mind. (Please note that this is general information, not legal advice. Due to the complexity of the system, the assistance of a lawyer can be helpful for resolving problems with your application or benefits.)

How to Request Casework Assistance from Your Member of Congress:

  • If you need help resolving an issue with your Social Security benefits or dealing with SSA, you can get help from caseworkers in your Member of Congress’s office.
  • Members of Congress cannot override decisions made by a federal agency, but they can often intervene on a person’s behalf to answer questions, find solutions, or help ensure you receive a fair and timely response to your problem.
  • Different offices have different ways of handling casework, so it’s helpful to start by calling your Member of Congress and saying, “I am a constituent requesting casework assistance with a Social Security benefit. What is the best way for me to submit this request?” They may give you a phone number to call, an email address to contact, or refer you to a form on their website to start the intake process. Find your representative here.
  • Be prepared to sign privacy release forms allowing staff to view personal information like your Social Security Number in order for them to assign a caseworker to handle your case. They will also ask for copies of documents relevant to the issue they are helping you with. Learn more about the casework process.

Other Practical Tips

  • Keep Records: Getting and maintaining Social Security disability benefits requires providing records related to your educational, medical, financial, family, and work history to SSA. In recent weeks, outages and other glitches impacting online ‘my Social Security’ accounts have also become more frequent.
    • Calls to SSA: When you call the SSA Helpline (1-800-772-1213), keep a record of the date, name of person you spoke to, what you asked, and what they told you. If the information you received does not make sense, sounds incorrect, or is not helpful, you can ask to speak with a supervisor.
    • Mail from SSA: When you get mail from SSA, promptly open, read, and keep a copy of it. Sometimes mail from SSA includes instructions and a deadline for something you need to do.
    • Documents You Submit to SSA: Make copies of all documents you give to SSA. Keep copies of the forms you fill out, other materials, and the date you sent them to SSA.
    • Your Social Security Record: If you are more than 18 years old, you can access your Social Security records online through a ‘my Social Security’ account. Download and keep copies of your records from the site including:
      • Your Statement
      • Your Benefit Verification Letter
      • Your Tax Form from SSA
      • Your Earnings Record
      • Your Benefits & Payments, which shows the date and amount of your next payment.
      • Screenshots of any error messages or information pertaining to your payment status that appear to be incorrect.
  • Be Proactive:
    • Avoiding Overpayments: Try to prevent problems with benefits before they arise by reporting any changes that could impact your benefits to SSA as soon as possible. Examples of things to report include changes to your contact information, address, disability/health condition, marital status, parental status, employment status, income, who you live with, and financial resources over $2,000 for SSI beneficiaries.
    • Setting Up a ‘my Social Security’ Account: If you are an adult receiving Social Security or SSI benefits and do not already have a ‘my Social Security’ account, it’s a good idea to set one up so it is available whenever you need it. SSA is increasingly encouraging people to use online services. Setting up an account will help you get easier access to information about your benefits.
  • Beware of Scammers: We are concerned that the rapid rollout of the digital identity verification tool could provide an opportunity for scammers to impersonate the SSA and harm beneficiaries. Remember, SSA will never text, message you on social media, or email you to ask for money or personal information. Learn more about common Social Security scams.
  • Know Your Rights: Information on your rights as a beneficiary or applicant are available at this page for SSDI and this page for SSI. If you receive an overpayment notice, you can appeal, request a waiver, or request a different repayment plan.
  • You Are Not Alone: Social Security disability beneficiaries can do everything right and still run into problems due to mistakes from SSA or other complexities in the system. It can be discouraging, frustrating, and anxiety-inducing. Please know you are not alone. The problems at SSA are bigger than any one person– that’s why we’re working together to make the system better for everyone.
  • Share Your Story: Personal stories help highlight the real impact of these changes. If you’ve been affected, consider sharing your experience with advocacy groups like The Arc.

The Arc Is Fighting for You

At The Arc, we are committed to advocating for policies that strengthen—not weaken—Social Security. We are working with Congress and disability rights organizations to push for oversight, protect Social Security programs, prevent harmful cuts, and improve access for those who need it most. We also continue to advocate for an increase in the SSI asset limit, which for nearly 40 years has been stuck at just $2,000 for individuals and $3,000 for married couples—far too low to get by in today’s economy.

The Arc has been a champion of Social Security for half a century. We played a key role in the creation of the Supplemental Security Income program to help build financial stability for people with disabilities. Today, we serve as a Co-Chair on the Consortium for Constituents with Disabilities’ Social Security Task Force, working to protect and update these vital programs.

The image is in black and white. There are four adults standing against a white background. They're smiling and looking at each other.

Autism Acceptance Month: Celebrate Differences

/in /by The Arc

April is Autism Acceptance Month—a time to recognize the talents, contributions, and diversity within the autism community. At The Arc, autistic people and their loved ones are a part of our staff, volunteer leaders, and the driving force behind our work. Their lived experiences shape our advocacy at a time when an estimated 1 in 36 children in the U.S. are autistic—yet too many remain underserved.

The big picture: Autistic people deserve full inclusion and respect. Yet, they continue to face misunderstanding, discrimination, and barriers in education, employment, healthcare, and community life. True inclusion means more than awareness—it requires action to remove these obstacles so autistic people can thrive as their authentic selves.

From awareness to acceptance: Autism Acceptance Month builds on decades of advocacy. It began in 1970 as Autism Awareness Month and, in 1988, gained national recognition through a presidential proclamation. In 2021, the shift to acceptance reflected what autistic people have long called for—not just recognition, but real inclusion. Words matter, but action matters more. True progress comes from creating a society where autistic people are fully valued and supported.

Language and identity: Many autistic people prefer identity-first language (“autistic person”) over person-first language (“person with autism”), viewing autism as an integral part of who they are. Respecting individual preferences is a key part of inclusion—when in doubt, ask.

Autistic leadership in action: Autistic people are leading the charge for change, and The Arc is committed to elevating their perspectives. Meet two powerful leaders on our national Board of Directors:

Get Involved:

🧡 Donate to support The Arc’s advocacy and programs for autistic people.
⭐ Volunteer with your local chapter to advance inclusion.
📣 Engage with autistic perspectives—follow #ActuallyAutistic and use #AutismAcceptanceMonth to join the conversation.

“True inclusion means ensuring autistic people have every opportunity to live life to the fullest. When we listen deeply and create truly welcoming spaces, that’s when everyone shines.” – Katy Neas, CEO of The Arc

A teacher standing in front of classroom of students

Why Moving IDEA to HHS Could Harm Students With Disabilities

/in /by Jackie Dilworth

A new proposal to shift the oversight of the Individuals with Disabilities Education Act (IDEA) from the U.S. Department of Education to the Department of Health and Human Services (HHS) could fundamentally change how we support and educate students with disabilities—and not for the better.

First, it’s important to remember that Congress established the Office of Special Education Programs within the Department of Education. Congress must change the law to move the responsibilities to another agency. It’s also important to remember that the rights that children have under IDEA and Section 504 of the Rehabilitation Act of 1973 have not changed. The executive action that was issued on March 20, 2025, does not change these laws and their regulations.

We don’t really know what would happen if the management of IDEA moves to HHS, but we have some concerns. For example, this move might be viewed as promoting a medical model of disability—one that treats disability as a diagnosis to be managed rather than recognizing students as learners with potential. Framing students with disabilities through a medical lens risks stigmatizing, segregating, and isolating them from their peers. It undermines decades of progress toward ensuring that students with disabilities are seen—and supported—as general education students first.

The U.S. Department of Education is the only federal agency with the expertise and infrastructure to uphold IDEA’s promise. Moving IDEA to HHS would weaken the critical systems that ensure students with disabilities can learn, grow, and thrive, including:

  • Lack of Education Expertise: HHS is not equipped to work directly with state education agencies that oversee IDEA implementation in local school districts. The Department of Education has decades of experience supporting these complex relationships and ensuring compliance.
  • Loss of Parent Support: Families navigating special education rely on Parent Training and Information (PTI) centers funded by the Department of Education. These centers provide essential, hands-on assistance to parents. HHS lacks the experience and infrastructure to maintain and strengthen this vital network.
  • Undermining Inclusion: The Department of Education oversees the Elementary and Secondary Education Act and other key education laws that reinforce the principle that students with disabilities are general education students. A shift to HHS would fracture this connection and threaten the expectation that every student—regardless of disability—can achieve academically and pursue career training or post-secondary education.

Students with disabilities don’t belong in a medical model. They belong in classrooms, learning alongside their peers, and preparing for bright futures. Moving IDEA to HHS risks turning back the clock on inclusion and sends a harmful message that children with disabilities are “patients” to be managed rather than students with potential to be fulfilled.

At The Arc, we will continue to fight to ensure that IDEA remains where it belongs—within the U.S. Department of Education—because every student deserves access to a meaningful education and the opportunity to achieve their goals.