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

/in , /by Jackie Dilworth

Updated Oct. 15, 2025, 9:40 a.m. ET

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 74 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 $717 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. The 2025 government shutdown is only exacerbating the issue. In September 2025:

  • Over 885,000 initial disability claims are pending, nearly double the number in 2019.
  • The average wait time for an initial disability decision is 209 days (nearly 7 months).
  • If an applicant is denied and requests a hearing, they can wait another 278 days (over 9 months). 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 is planning for a dramatic reduction in staff and offices, including:

  • Cutting 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.
  • Ending federal support for Supplemental Security Income (SSI)/Social Security Disability Insurance (SSDI) Outreach, Access, and Recovery (SOAR)

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.
  • Ending Paper Checks: As of September 30, 2025, SSA will no longer issue paper checks for benefit payments. Make sure you are set up to receive benefits via direct deposit or the Direct Express® card.

How This Affects People With Disabilities

To be clear, as of October 15, 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.

Written by: Darcy Milburn, Director of Social Security & Healthcare Policy at The Arc of the United States

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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 31 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.

Written by: Robyn Linscott, Director of Education & Family Policy at The Arc of the United States

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

Dismantling the U.S. Department of Education: Here’s What’s at Stake for Students With Disabilities.

/in /by Jackie Dilworth

Statement from our CEO Katy Neas on the Executive Order to dismantle the U.S. Department of Education. To learn more, read Katy’s op-ed in Newsweek.

“Dismantling the U.S. Department of Education is more than a policy shift—it will reverse five decades of progress for students with disabilities. While the right to a free appropriate public education for children with disabilities will remain under the federal Individuals with Disabilities Education Act, states will struggle to deliver on its promise without federal technical assistance, oversight, and enforcement. Children with disabilities who do not receive appropriate education services will face greater isolation, unemployment, and poverty. We cannot afford to undo the hard-won gains of the past. We must protect the future of every student, because the strength of our society depends on it.”

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

Federal Court Rules Texas S.B. 1 Violates Rights of Voters with Disabilities Under the ADA and Section 504

/in , /by Jackie Dilworth

Editor’s Note: You can find the latest news on this lawsuit in this case page. If you need assistance to vote, visit www.fvap.gov.

WASHINGTON, DC – In a major victory for disability rights, a federal court has ruled that Texas Senate Bill 1 (S.B. 1) violates the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act by imposing significant barriers to voting for people with disabilities. The ruling, issued by Judge Xavier Rodriguez of the U.S. District Court for the Western District of Texas, declares that several provisions of S.B. 1 disenfranchise disabled voters, reinforcing that the state’s “know-nothing-do-nothing” approach to ADA compliance in elections is unlawful.

“This decision sends a clear message: systemic barriers that prevent people with disabilities from fully participating in the electoral process are illegal,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States. “The court carefully considered the experiences of The Arc’s members—voters with disabilities and their assistors—and found that S.B. 1 subjected them to barriers that blocked their voices on issues that directly impact their daily lives, stripping them of their fundamental right to participate in our democracy. Even when voters with disabilities managed to cast a ballot, they endured significant burdens that are themselves violations of federal law. This ruling affirms that the right to vote must be more than theoretical. It must be meaningful, accessible, and free from unnecessary hardship. The Arc celebrates this decision and will continue fighting nationwide to protect the rights of voters with disabilities.”

This ruling makes it clear that “Texas voters with disabilities deserve better,” the court concluded. “And the ADA and Section 504 demand more.”

The court found that, contrary to the state’s argument, voters with disabilities should not have to fight through unnecessary obstacles just to exercise their fundamental right to vote. Public entities have an affirmative obligation under the ADA and Section 504 to proactively ensure accessibility, rather than waiting for voters with disabilities to request accommodations. The ruling also emphasized the real harm caused by criminalizing voter assistance, an issue exacerbated by the ongoing crisis in the direct care workforce, and creating barriers to voting by mail.

“This decision doesn’t just validate the inequitable barriers faced by Texans with disabilities when voting. It puts a stake in the ground that nothing short of true, meaningful voting accessibility is acceptable under the law,” said Jennifer Martinez, CEO of The Arc of Texas. “This ruling recognizes the powerful testimony from our members who bravely shared their experiences in court. Their voices changed history.”

S.B. 1, enacted in 2021 under the guise of election integrity, imposed a maze of restrictions that disproportionately harmed voters with disabilities. Among its most damaging provisions, the law:

  • Criminalized certain forms of voter assistance, deterring family members, caregivers, and others from helping voters with disabilities navigate the voting process;
  • Created burdensome ID requirements for mail-in ballots, leaving many voters (especially those who lack access to reliable transportation) unsure whether their ballot would be accepted;
  • Forced voters with disabilities to navigate an intimidating system that threatened their privacy and put their assistors (many of whom are immigrants and people of color) at risk of criminalization, while preventing election officials from taking proactive steps to ensure accessibility.

The Arc of the United States and The Arc of Texas, alongside civil rights groups including the Legal Defense Fund (LDF), Delta Sigma Theta Sorority, Inc., and the Houston Area Urban League, and the law firms Arent Fox Schiff and Reed Smith, have been fighting this law in court since it was enacted. This latest ruling builds on a previous decision from October 2024, in which the court found that sections of S.B. 1 violated the Voting Rights Act by limiting the right of voters with disabilities to receive assistance from the person of their choice. This new decision goes even further by addressing vote-by-mail restrictions and voter assistance criminalization, key issues that disproportionately impact voters with disabilities.

“This ruling is a significant triumph for the three million voters with disabilities across Texas and the ongoing fight for an inclusive democracy,” said Jennifer A. Holmes, Deputy Director of Litigation at the Legal Defense Fund. “The Court’s decision strikes down barriers that unfairly burdened and excluded voters with disabilities, ensuring they can exercise their fundamental right to participate in the franchise. The right to vote is illusory if election procedures are not accessible to all voters. This ruling strengthens the fairness of our electoral system by ensuring equal access to the ballot box.”

“At trial, the Court heard testimony regarding the significant barriers disabled voters face in any election and that S.B. 1 exponentially compounded issues people with disabilities faced,” said J. Michael Showalter, partner at ArentFox Schiff. “We were proud to stand with our clients Delta Sigma Theta Sorority and The Arc of Texas in removing barriers that limited Texans’ with disabilities rights to cast their votes.”

The court’s permanent injunction prohibits Texas state and county election officials from enforcing the challenged provisions of S.B. 1, though the ruling is stayed until after the May 2025 election under the Purcell principle.

The Arc remains committed to ensuring that every person with a disability has equal access to the ballot and will continue to fight voter suppression laws that undermine this fundamental right.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who knew their disabled children deserved more, The Arc is now the largest grassroots organization for people with IDD with nearly 600 chapters in 48 states and Washington, DC. Together, we are promoting and protecting the rights of people with disabilities and supporting their inclusion throughout their lives—from education to employment to community living. There are approximately 7.4 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About The Arc of Texas: The Arc of Texas is a statewide advocacy organization that promotes, protects, and advocates for the human rights and self-determination of Texans with intellectual and developmental disabilities (IDD). We envision a world where Texans with intellectual and developmental disabilities are included in their communities with quality support and services that meet their needs and choices. The Arc of Texas focuses on four policy pillars impacting Texans with IDD: 1) quality of life (community supports and services), 2) inclusive education, 3) integrated employment, and 4) civil rights and justice.

A view of a young girl from behind swinging outside

National Disability Rights Organizations Urge U.S. Supreme Court to Protect Rights of Youth With Disabilities in Key Education Case

/in , /by Jackie Dilworth

WASHINGTON, DC – A coalition of national disability rights organizations is urging the U.S. Supreme Court to protect the civil rights of students with disabilities in AJT v. Osseo Area Schools, a landmark case that could determine how disability discrimination claims are handled in schools. In an amicus brief filed this week, these organizations, including The Arc, argue that students with disabilities should not face a higher legal standard when seeking justice for discrimination in schools—one that does not exist in other settings covered by the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act (Section 504).

“This case is about whether students with disabilities should have to clear a higher legal hurdle to seek justice for discrimination in school, one that doesn’t exist in workplaces, housing, or other settings,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc of the United States. “No child should have to fight an uphill battle just to hold their school accountable for discrimination. Schools must be held to the same standards as every other public entity, plain and simple.”

At the heart of the case is a legal standard applied in some courts that makes it much harder for students with disabilities to prove discrimination in school compared to other settings. Under this stricter rule, students must prove that their school acted with “bad faith” or “gross misjudgment,” a standard that does not apply in workplace, housing, or other discrimination claims under the ADA and Section 504.

Decades ago, the Eighth Circuit Court created this higher standard for students in school settings, and since then, several other courts have followed. As a result, countless students with disabilities have had their claims rejected simply because they couldn’t meet this excessive burden of proof. Disability rights advocates argue that this rule contradicts federal disability laws and makes it much harder for students to hold schools accountable when they face discrimination.

“It is imperative that we protect student civil rights under Section 504 and the ADA, for students who have suffered compensable harms from disability discrimination,” said Selene Almazan, Legal Director at the Council of Parent Attorneys and Advocates (COPAA). “The legal rule whose demise is sought in this case—the bad-faith-or-gross-misjudgment standard—cannot be squared with the text or purposes of Section 504 and the ADA which undergird protections for millions of children with disabilities attending K-12 schools.”

Families already struggle to secure the support and services their children need to thrive—this additional legal barrier only makes it harder for them to fight back when their rights are violated.

The Supreme Court will hear oral arguments on April 28, 2025.

Amici curiae include: Council of Parent Attorneys and Advocates, The Arc of the United States, Bazelon Center for Mental Health Law, Children’s Law Center, Disability Rights Education & Defense Fund, Education Law Center, Learning Rights Law Center, Minnesota Disability Law Center, part of Mid-Minnesota Legal Aid, National Center for Youth Law, National Disability Rights Network, National Health Law Project, and the Washington Lawyers Committee for Civil Rights and Urban Affairs.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who knew their disabled children deserved more, The Arc is now the largest grassroots organization for people with IDD with nearly 600 chapters in 48 states and Washington, DC. Together, we are promoting and protecting the rights of people with disabilities and supporting their inclusion throughout their lives—from education to employment to community living. There are approximately 7.4 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A teacher standing in front of classroom of students

The Department of Education Helps Students With Disabilities. Don’t Let It Disappear.

/in /by Jackie Dilworth

This op-ed from The Arc’s CEO Katy Neas originally appeared in Newsweek.

If the U.S. Department of Education disappears, millions of students with disabilities will face even greater barriers to getting the education they deserve. They are our neighbors, classmates, friends, and family members. When we take away the protections and resources that make education possible, we don’t just fail them—we fail as a society.

In 1971, before federal protections for people with disabilities existed, states were free to exclude children with disabilities from their public schools, and many did. Millions of children were denied an education, not because they couldn’t learn, but because our society didn’t believe they were worth educating. That changed because of federal action. Parents, led by my organization, The Arc, fought in court and won. Their victory laid the foundation for the Individuals with Disabilities Education Act (IDEA), securing the right to a free, appropriate public education for students with disabilities, regardless of the nature or severity of their disability.

Now, access to that right is in jeopardy, and parents across the country are alarmed.

Calls to dismantle the U.S. Department of Education have begun to appear on mainstream platforms, with members of Congress openly advocating for its elimination. This proposal isn’t just a bureaucratic shift; it’s an existential threat to students with disabilities and their families. While IDEA would remain law, without federal oversight, there would be few mechanisms to ensure states follow it.

When education is limited, so is opportunity. Without education, students with disabilities face higher rates of poverty, unemployment, poor health, and social isolation. Education is the foundation for independence, inclusion, and a future with choices. Strip it away, and we are not just limiting potential. We are forcing millions of people into a lifetime of barriers and hardship.

This issue is personal for me. As a former deputy assistant secretary in the Department of Education’s Office of Special Education and a lifelong advocate for disability rights, I have seen firsthand what happens when children with disabilities face barriers and how the Department of Education steps in to make things right.

Here’s a real-life example. A few years ago, parents in Texas discovered that the state had an unfair limit on the number of children with disabilities who could receive special education services. The cap was set at just 8.5 percent, even though nearly 15 percent of students in most states are eligible for these services. These concerned parents reached out to the Department of Education for help. The department’s staff worked closely with the state, guiding them on what needed to be done to fix the problem. After months of collaboration, Texas removed the cap, ensuring that every child who qualifies for special education can now get the support they need.

The Department of Education does far more than provide support to state departments of education. It funds high-quality training for special education teachers, drives innovation in how we educate students with disabilities, supports parents, and enforces disability rights laws. It also ensures that when students with disabilities are not able to access appropriate special education services, families have a way to fight back. In fact, the largest category of complaints filed with the Department of Education are from parents of students with disabilities who believe their children are being denied the education they need and deserve. In many cases, the Department of Education works directly with school districts to resolve these issues and improve services.

What does this work mean for children with disabilities? Consider Whitman, an 11-year-old with autism and apraxia who is nonspeaking and uses an augmentative communication device to communicate. The support he receives through special education has been life-changing—not just for him, but for his entire family. At first, he was placed in a school where all the children had disabilities. He struggled until the school started a program that helped Whitman learn alongside his non-disabled peers. Now, he is not only excelling academically but recently performed in two school musicals, something his family never imagined possible.

Decades ago, the United States decided that having a disability or living in a certain state should not determine whether a child receives a quality education. That promise is now under attack. Dismantling the Department of Education wouldn’t just turn back the clock—it would create chaos and deepen inequality. It would mean fewer trained teachers, weaker enforcement of disability rights, and more children slipping through the cracks.

The stakes have never been higher. If we allow the Department of Education to be dismantled, we not only undo decades of progress; we also risk abandoning the promise that every child deserves a chance to succeed. We cannot let this happen. The futures of millions of students are in our hands, and we must protect them.

Katy Neas is CEO of The Arc of the United States. She previously served as Deputy Assistant Secretary and Acting Assistant Secretary in the Department of Education’s Office of Special Education.

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

Developmental Disabilities Awareness Month: Shattering Stigmas & Obstacles

/in /by The Arc

Every March, we celebrate something near and dear to The Arc: Developmental Disabilities Awareness Month. It’s an opportunity to honor the diverse talents, dreams, and achievements of people with developmental disabilities. Whether it’s autism, cerebral palsy, Down syndrome, or learning disorders, these disabilities are part of the human experience, and the people living with them have stories that need to be heard.

The big picture: Here’s what drives us at The Arc: the fundamental belief that everyone deserves to write their own life story. That means real access to education, meaningful employment, quality healthcare, and genuine community connections. Right now, too many barriers stand in the way of these basic rights. This month, we’re turning up the volume on voices calling for change.

History: The roots of Developmental Disabilities Awareness Month can be traced back to 1987 when President Reagan first declared March as a month to raise awareness and “according to our fellow citizens with such disabilities, both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

This year’s theme from the National Association of Councils on Developmental Disabilities is We’re Here All Year, emphasizing that community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day.

What we’re doing: Change happens when people come together, and that’s exactly what The Arc’s nationwide network is doing. Want to meet some of the incredible individuals leading the way?

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

Ready to be part of this movement? Here are three powerful ways you can help create change:

  • Donate to The Arc to support our advocacy and services, making inclusion possible.
  • Volunteer with your local chapter of The Arc to empower people with developmental disabilities.
  • Share stories uplifting diverse perspectives using #DDawareness and #DDawareness2025.

“Segregation and discrimination still cast an ugly shadow over the lives of millions of people with disabilities. This month, we must amplify the voices calling for true inclusion—in our schools, workplaces, and communities. When we listen to self-advocates and remove unfair barriers, incredible contributions shine through.” – Katy Neas, CEO of The Arc

Statement on the DC Plane Crash

/in /by Jackie Dilworth

Statement from our CEO Katy Neas on the tragic DC plane crash and claims that it could have been caused by the FAA’s DEI hiring practices, particularly of people with intellectual disabilities:

“This is a devastating tragedy, and our hearts go out to the victims and their families. There is no evidence that FAA hiring practices had anything to do with this accident, and suggesting otherwise is both misleading and harmful. People with disabilities, like all federal employees, are hired because of their qualifications, skills, and ability to do a job. In moments like this, we should be focused on facts and supporting those affected, not pointing fingers at an entire community.”

A row of parked school buses

Parents & Students With Disabilities Can Continue Their Fight for Safe & Reliable Transportation

/in , /by Jackie Dilworth

WASHINGTON, DC – For countless families in the District of Columbia, the daily trip to school is fraught with anxiety due to unsafe and unreliable transportation services for students with disabilities. Today, a federal judge signaled hope for change and cleared the way for parents and guardians of children with disabilities and The Arc of the United States (The Arc) to pursue their case against the District of Columbia (DC) for failing to provide them with safe, reliable, and effective transportation to school. According to the decision by Judge Paul L. Friedman of the District Court of DC, students with disabilities have the right under federal disability rights laws to seek “structural relief that serves all children with disabilities.” The decision affirms that there is a remedy when children with disabilities are denied equal access to education.

The complaint, filed in March 2024, alleges that DC’s Office of the State Superintendent for Education (OSSE) denies students equal access to their education in violation of federal and local disability and civil rights laws by failing to provide students with transportation to and from school. Unsafe or unreliable transportation often means missed school days, interrupted learning, and barriers to building essential relationships and skills. According to the complaint, buses routinely arrive very late to pick students up from their homes, or do not arrive at all; students are left stranded at school without guaranteed transportation back home; students spend excessive time on buses, and students do not get the accommodations they need to ride safely. The plaintiffs are represented by The Arc, Washington Lawyers’ Committee for Civil Rights, Children’s Law Center, and McDermott Will & Emery.

By allowing The Arc to proceed as a plaintiff on behalf of its members, the decision reinforces the important principle that advocacy groups can and should bring litigation to secure the rights of its members under the IDEA and ADA. The decision, relying in part on the Department of Justice’s Statement of Interest filed in this case, also rejects the notion that students with disabilities need to meet a heightened standard in order to bring education discrimination claims.

“The buses meant to help children with disabilities build their education and futures are instead perpetuating their exclusion. This is not just a matter of tardiness or inconvenience—it’s stealing children’s opportunities to learn, grow, and connect with their peers,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel for The Arc of the United States. “Fighting for this change is about ensuring that our school systems work for and include all students. Today’s ruling affirms the right of students with disabilities to access their education without barriers. While there is still work ahead, this is an important step forward for systemic change.”

“The decision today will allow parents to keep seeking changes to a transportation system that so far has failed to deliver,” said Kaitlin Banner, Deputy Legal Director for the Washington Lawyers’ Committee for Civil Rights and Urban Affairs. “Our clients are ready to press forward and ensure that they will not endure another school year without access to their education.”

“I’m excited that the case is moving forward,” shared plaintiff Ms. Joann McCray and mother to 12-year-old boy who has faced ongoing bus transportation issues. “I hope that this can be the beginning of some real systemic change for my son and others.”

“With Judge Friedman’s reasoned decision, it is full speed ahead to obtain the District’s documents and testimony in advance of trial,” said Eugene Goldman, Senior Counsel at McDermott Will & Emery.

Click Here To Read the Opinion

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About The Arc of the United States
The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About Children’s Law Center
Children’s Law Center believes every child should grow up with a strong foundation of family, health and education and live in a world free from poverty, trauma, racism and other forms of oppression. Our more than 100 staff – together with DC children and families, community partners and pro bono attorneys – use the law to solve children’s urgent problems today and improve the systems that will affect their lives tomorrow. Since our founding in 1996, we have reached more than 50,000 children and families directly and multiplied our impact by advocating for city-wide solutions that benefit hundreds of thousands more. For more information, please visit www.childrenslawcenter.org.

About the Washington Lawyers’ Committee for Civil Rights and Urban Affairs
The Washington Lawyers’ Committee for Civil Rights and Urban Affairs partners with community members and organizations on scores of cases to combat discrimination in housing, employment, education, immigration, criminal justice reform, public accommodations, based on race, gender, disability, family size, history of criminal conviction, and more. The Washington Lawyers’ Committee has secured a relentless stream of civil rights victories over the past five decades in an effort to achieve justice for all. For more information, please visit www.washlaw.org.

About McDermott Will & Emery
McDermott Will & Emery partners with leaders around the world to fuel missions, knock down barriers and shape markets. Our team works seamlessly across practices and industries to deliver highly effective solutions that propel success. More than 1,400 lawyers strong, we bring our personal passion and legal prowess to bear in every matter for our clients and the people they serve. For more information, please visit www.mwe.com.