Jonathan Gardner pictured with his dad and Patient Cookie

6 Powerful Father’s Day Stories From People With Disabilities

/in , /by Jackie Dilworth

What makes a great dad or father figure?

For some, it’s a quiet kind of support that needs no spotlight. For others, it’s encouragement, guidance, a sense of safety, or someone who listens without judgment.

Sometimes that person is a biological father. Other times, it’s a stepdad, grandfather, mentor, teacher, or chosen family member. What matters isn’t the label—it’s how they show up and what they make possible. It’s not about being a perfect dad. It’s about being present, flexible, and fiercely in your corner.

This Father’s Day, we asked people with disabilities: How has your dad—or a father figure—shaped your life?

Here are six real stories about strength, support, and showing up.

Jonathan Gardner pictured with his dad and Patient Cookie

Jonathan and his dad

“When I was 18, I was diagnosed with Ewing’s sarcoma, a rare and aggressive cancer. I also have autism, so I experience sensory things like touch and routine differently. When I found out I needed a port placed in my chest for chemotherapy, I was overwhelmed and scared. But my dad knew exactly what I needed. He gave me a Cookie Monster plush, one of my favorite characters, that had a real chemotherapy port sewn into his chest—just like mine. My dad made sure it looked exactly the way I would look, with tape and bandages too. Being able to feel the port on Cookie Monster helped me understand what was going to happen to my own body. That Cookie Monster, who we named Patient Cookie, came with me to every single appointment. It was like having a piece of my dad with me, especially on the days he couldn’t be there because of work. I am now 3 years Cancer Free and use Patient Cookie to teach medical students through Operation House Call with The Arc of Massachusetts. I use him to show future doctors and nurses that caring for someone with a disability means more than just treating their illness, it means taking the time to understand the whole person. My dad is the perfect example of that. He gave me comfort, safety, and a way to face something scary. He turned my fear into understanding, and that’s just one of the many reasons why my Dad is so important to me, and why I love him so much.”
— Jonathan Gardner lives in Massachusetts and has autism

Veronica Ayala pictured sitting next to her stepdad Charlie

Veronica and her stepdad

“My stepdad, Charlie, never tried to replace my father—he wanted to be my friend. I don’t call him Dad, but he’s been more of one than anyone else. He is very reserved but shows his love by being in my corner constantly and occasionally in my apartment with a wrench or a screwdriver. I often hear about how proud he is or how amazing he thinks I am from others. He doesn’t define me by the things I don’t have or can’t do because I have disability. He always just waited for me to tell him what I needed rather than assuming anything about what I couldn’t do. It feels great to know that someone as strong as he thinks that you are just as strong but in a different way. I recently lost my purse with my phone and ID in it before boarding a plane. I was able to contact my sister to let her know I might be stuck at the airport overnight. My mother went into a panic and wanted to jump in the car and bring me back home. Not Charlie. He calmly tells my mom not to worry. “She is a smart girl, she’s going to get herself on the plane and get herself home.” He was right. I talked to the right people, I explained my situation, I got through an extended TSA security check, and I made it on to my flight home. What did Charlie say? “I told you she would do it.” Thank you, Charlie, for always being there and believing in me.”
— Veronica Ayala lives in Texas and has cerebral palsy

Marina Agerter sitting at a table with her dad

Marina and her dad

“My dad helped me through my traumatic brain injury [following a car accident]. I was in inpatient therapy and my dad would help me read the Harry Potter books. I lost my ability to read, but it was through practice and hard work and love that I was able to regain my reading ability. When I was discharged to outpatient therapy, he took me home and [my mom and dad] took turns driving me to therapy every day of the week.”
— Marina Agerter lives in Virginia and has a traumatic brain injury and aphasia

Ray Simpson's grandma and grandpa sitting next to each other

Ray’s grandparents

“I was adopted and raised by my grandparents when I was very young. I called them mom and dad growing up. My dad, George, was and always will be my best friend. He taught me how to play piano, and we would sit on the bench together and play our favorite tunes. My dad was a priest for the episcopalian church most of his life. Although his faith was strong in his religion, he never judged anyone’s beliefs or culture. He welcomed discussions about life and the world. My dad taught me how to be responsible and independent with finances and to always be prepared. When he passed away in my early twenties, it left a hole in my heart. Each year on Father’s Day, I light a candle and tell him how much he meant to me.”
— Ray Simpson lives in Minnesota and has anxiety, sensory processing disorder, chronic nerve damage, and complex regional pain syndrome

Taylor Crisp pictured with her dad

Taylor and her dad

“My dad has been my constant rock throughout my life. He continues to show unconditional love regardless of how old I get. He has been my number one coach and cheerleader—but also the one who teaches me to be tough in times of hardship. My autism and different support needs have never stopped him or prevented him from being the best father he can be. He is the dad that will help me face my fear and insert my dignity of risk because he believes in me and believes I deserve happiness and success. He has gone above and beyond for me, showing me what tough love and unconditional love is like. I also want to recognize my stepdad. From day one, he has been supportive and there for me. I am not only lucky to have one dad, but to have two dads to celebrate.”
— Taylor Crisp lives in Washington state and has autism

Mark Dixon reading with his father

Mark and his dad

“My father served as an advocate by attending IEP meetings, reading books about the special education regulations, and making sure I had the right services to receive a free and appropriate education. He also served on a lot of boards to help people with disabilities. When I graduated from high school, my father made sure services were available so I could live in the community as independently as possible. Having watched my Dad advocate for me through the years gave me the desire to advocate for others.”
— Mark Dixon lives in Virginia and has cerebral palsy

These Father’s Day stories from the disability community show how deep an impact dads and father figures can have.

To the fathers and father figures: thank you for listening, encouraging, adapting, and advocating. Your impact is lasting.

To the people who shared their stories with us: thank you for your honesty and vulnerability.

And to anyone for whom Father’s Day brings up mixed emotions—whether because of loss, distance, or difficult experiences: you’re not alone. We honor all the ways love and support can take shape.

Picture of the front of the U.S. Supreme Court building in Washington, DC

Why This Supreme Court Case Matters for Students with Disabilities

/in /by Jackie Dilworth

Oklahoma Statewide Charter School Board v. Drummond/St. Isadore of Seville Catholic Virtual School v. Drummond

In May 2025, the U.S. Supreme Court couldn’t agree on a big case about whether a religious school in Oklahoma should get public money. Because the justices were split 4 to 4, the lower court’s decision stayed in place. That means the school won’t get state funding.

This case matters for students with disabilities. When public money goes to private or religious schools, those schools don’t always have to follow the same laws that protect students with disabilities. That can take away important rights and supports kids need to learn.

Here’s what you need to know.

What is this Case About?

The U.S. Supreme Court was asked to weigh in on whether states can use taxpayer money to fund religious charter schools. Under the U.S. Constitution’s First Amendment, there are limits on government involvement with religion—including funding.

What Are the Facts of the Case?

In this case, Oklahoma approved a charter for St. Isidore of Seville Catholic Virtual School, a religious school funded with public dollars. Private charter schools are outside of a traditional public school system, as a public school district contracts with a private entity to create the school. However, many charter schools are funded by public tax dollars, just like a traditional public school. Thus, these public charter schools are public schools under Oklahoma law and must follow federal civil rights laws. They also must not promote any one religion. So, the state of Oklahoma sued to cancel its contract with the school. The Oklahoma Supreme Court agreed and ruled that the religious charter school was unconstitutional. St. Isidore appealed to the U.S. Supreme Court.

What Did the Supreme Court Decide?

In May 2025, the U.S. Supreme Court issued a 4-4 split decision. Because Justice Amy Coney Barrett recused herself and the remaining justices were evenly divided, the lower court’s ruling stood. That means that the Oklahoma Supreme Court’s decision remains in effect: that the religious charter school was unconstitutional and public money cannot be used to fund this religious charter school.

The Arc’s Position

The Arc’s position statement on education states that every student deserves a quality education—and the law is clear that students with disabilities have the right to:

  • A free and appropriate public education
  • Individualized supports and services
  • Inclusion in general education classrooms
  • Equal access to academics, extracurriculars, and more

When schools receive public funding—whether traditional, charter, or when a private school enrolls a student with a disability who is publicly placed in that private school—The Arc maintains that they are required to follow federal civil rights laws like the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA).

Traditional private and religious schools that do not receive public funds are largely not required to follow these laws. As explained in an amicus brief on behalf of the National Center for Learning Disabilities, religious charter schools receiving public funding would be required to serve students with disabilities to the same extent as other public schools but would likely be unable to meet their full range of needs The impact would be compounded by the overall inexperience of religious schools in accommodating the needs of students with disabilities. Religious schools may also seek First Amendment exemptions from these requirements.

Because traditional public schools must be open to all, requiring them to share funding with religious charter schools while still educating the majority of students with disabilities would further strain their resources and jeopardize the quality of the education they can provide.

That’s why The Arc strongly opposes the use of public money for schools that may be more likely to deny students with disabilities their rights.

How Does This Case Affect Students with Disabilities?

This decision protects students in Oklahoma—but it also sends a national message. Letting public dollars flow to religious private charter schools without ensuring full civil rights protections and adequate funding would harm students with disabilities.

Families should never have to give up their child’s legal rights just to find a school that works for them. But that’s what can happen when private charter programs don’t guarantee equal access. Money is taken from public schools—where federal protections apply—and given to schools where they often don’t or offer more limited protections. That can mean no individualized education plan, no supports, no recourse.

This case helps stop that from happening in Oklahoma. And it’s a win for the rights of students with disabilities.

Further Reading

A picture of Civitan International's logo (a cog with a C and a sphere inside)

Civitan International & The Arc Announce New Partnership to Advance Opportunities for People With Disabilities

/in /by Jackie Dilworth

BIRMINGHAM, AL & WASHINGTON, DC – May 27, 2025 – Civitan International and The Arc announced today a strategic partnership to increase awareness and understanding of the challenges faced by people with intellectual and developmental disabilities (IDD) and their families, and to connect those families to volunteer activities and resources.

Civitan International, a global network of service clubs dedicated to supporting people with disabilities, and The Arc, the largest national organization advocating for and serving people with IDD, are joining forces to expand community support, inclusion, and opportunity for people with disabilities. This new partnership will focus on three core areas:

  • Volunteer Engagement: Civitan members will connect with local chapters of The Arc to build meaningful relationships and volunteer in programs that directly support people with disabilities and their families.
  • Shared Resources and Best Practices: The two organizations will collaborate to strengthen their programs by sharing tools, knowledge, and strategies that promote inclusion and empower people with disabilities.
  • Community Collaboration: Local Civitan clubs and chapters of The Arc will work together on projects and events that bring people together and create more inclusive communities.

Katy Neas, CEO of The Arc of the United States shared: “Too often, people with intellectual and developmental disabilities are left out—of community, of opportunity, of conversations about the future. This partnership is about changing that. When Civitan members show up in local communities and stand alongside people with disabilities, it sends a powerful message: you matter, and we’re in this together. The Arc is proud to join forces with an organization that’s not just talking about inclusion—they’ve been doing the work for generations.”

Mark Eisinger, Executive Vice President of Civitan International, added: “Civitan’s mission to serve is made even stronger through this partnership with The Arc. By combining our efforts, we can promote more inclusive communities where individuals with disabilities are not just accepted but celebrated for their unique contributions. We look forward to collaborating on initiatives that will benefit the millions of people with IDD and their families across the nation and beyond.”

To arrange an interview, please contact:
Civitan International – Public Relations Department
Phone: 205-591-8910
Email: pr@civitan.org

The Arc – Communications Department
Phone: 202-617-3271
Email: dilworth@thearc.org

# # #

About Civitan International: Founded in 1917, Civitan International is an organization of volunteer clubs dedicated to serving individual and community needs with an emphasis on helping people with intellectual and developmental disabilities. Civitan’s mission is to build good citizenship by providing a volunteer organization dedicated to serving individual and community needs with an emphasis on helping people with developmental and intellectual disabilities. To learn more, visit www.civitan.org.

About The Arc: 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 47 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 woman holding a sign that says "I am Medicaid. Don't cut me!" while standing in front of the U.S. Capitol in Washington, DC

The Arc Responds to House Passage of a Budget Proposal Targeting Medicaid and SNAP

/in /by Jackie Dilworth

Early this morning, the House of Representatives passed a budget reconciliation bill that slashes Medicaid and the Supplemental Nutrition Assistance Program (SNAP), programs that millions of people with disabilities rely on to survive.

The Arc of the United States urges the Senate to reject the Medicaid and SNAP cuts in the House passed bill that includes the following policies:

  • $715 billion in cuts to Medicaid that threaten access to health care and essential services. These cuts will impact all people covered by the Medicaid program, including people with disabilities, children, and older adults.
  • Combined with restrictions on Affordable Care Act marketplaces and the expiration of enhanced premium tax credits, these policies could result in 13.7 million people losing health insurance.
  • New administrative barriers that require people with coverage through Medicaid expansion will have to renew their eligibility two times a year, instead of once, which will increase the risk that people with disabilities will incorrectly lose coverage.
  • $300 billion in cuts to SNAP, a nearly 30% reduction is the largest cut in the program’s history to critical food assistance.
  • New strict work requirements that are designed to reduce enrollment. Nearly 70% of Medicaid beneficiaries are working. A last-minute change to the bill speeds up the implementation of the work requirements.

Many people with disabilities are exempt from the work requirements. However, when states implemented this approach in the past, the exemptions did not protect people. In practice, the screening process and other outreach and access failures left many people with disabilities without an exemption and locked out of Medicaid coverage.

The work requirements also hurt caregivers, who may not bring home a paycheck but perform critical jobs at home. Combined with massive cuts to Medicaid that threaten access to service, life will be harder for many families.

For people who are working, the system can also fail. Paperwork gets lost. Documentation rules vary by state. Systems become overwhelmed. People fall through the cracks—not because they don’t qualify, but because the system is designed to push them out. We’ve seen this play out in Arkansas.

Katy Neas, CEO of The Arc of the United States, said:
“For millions of people with disabilities, Medicaid and SNAP aren’t just safety nets—they’re survival.

New administrative barriers aren’t about stopping waste, fraud, and abuse. They are about denying access to essential health care to as many people as possible. Families will skip check-ups, critical surgeries, and medications. Parents will go hungry so their kids don’t have to. People will be forced to choose between paying rent or seeing a doctor. This is the brutal reality for the millions who will lose health coverage and food assistance under this plan.

The combined effect of the historic $715 billion in cuts to federal Medicaid spending and the cost-shifting to states in SNAP will set up chaos at the state level. States will be forced to quickly stand up costly and burdensome systems to abide by the work requirements. Limits to how states fund their share of the Medicaid program will make few resources available to address the coverage losses in their states. States may be forced to reduce services or eligibility to make up the difference.

These cuts are devastating. And we won’t be silent while our community is pushed past the brink.”

Next, the Senate must take up the bill. The Arc urges Congress to reject this proposal and protect Medicaid and SNAP. These programs are not optional. They are how people with disabilities live in their homes, care for their families, and survive each day.

The Arc will continue to educate every Member of Congress on the life-and-death consequences of these cuts—and the need to protect Medicaid and SNAP.

A white man in a wheelchair on the sidewalk smiling while facing the camera

Why and How to Celebrate Disability Pride Month

/in /by The Arc

Disability Pride Month is a time to recognize the history, achievements, experiences, and struggles of people with disabilities. It affirms that disability is a natural and valuable part of human diversity—not a deficit or condition to be fixed.

More than 1 in 4 adults in the United States—over 70 million people—have a disability. This month calls on everyone to promote inclusion and ensure people with disabilities are accepted exactly as they are, without conditions.

What Is Disability Pride Month?

Disability Pride Month is an annual observance in July that celebrates people with disabilities, commemorates the signing of the Americans with Disabilities Act (ADA), and promotes disability culture and visibility.

Observed every July, Disability Pride Month recognizes the importance of the ADA, which was signed into law on July 26, 1990. It highlights disability culture, history, and community pride. This month challenges the harmful idea that people with disabilities need to conform to norms to live meaningful lives. Their lives are just as full, valuable, and worthy of respect—no more, no less.

The first Disability Pride celebration was a Disability Pride Day that took place in Boston in 1990. Chicago hosted the first Disability Pride Parade in 2004. Now there are events nationwide empowering people with disabilities to take pride in who they are.

Here’s more about the history of Disability Pride Month and the story behind the flag.

2025 Theme: “We Belong Here, and We’re Here to Stay”

The Arc’s National Council of Self-Advocates selected the 2025 Disability Pride Month theme: We Belong Here, and We’re Here to Stay. It delivers a powerful message—people with disabilities are a vital part of every community. Not someday. Not conditionally. Now.

As disability rights face growing threats in education, employment, health care, and public life, this year’s theme is a clear call to action. It pushes back against ableism—discrimination and bias against people with disabilities—and exclusion. It reminds us that people with disabilities will not be erased, ignored, or pushed aside.

Why Celebrate Disability Pride Month?

Many people with disabilities still face barriers to being fully included and valued. Ableism is often ignored, but its effects are real. It limits access to education, jobs, health care, and respect.

Disability Pride Month challenges that. At its core, Disability Pride is about being accepted on our own terms. It says disability is not something to hide or fix—it’s part of who we are. Everyone deserves inclusion, rights, and respect, without having to earn them.

How to Celebrate Disability Pride Month

  • Ways to Connect With People With Disabilities: Spend time learning from people with disabilities in real life and online.
  • How to Learn Disability History and Culture: Understand the roots and richness of Disability Pride by diving into disability history, rights movements, and cultural contributions.
    • Learn about key moments in the disability rights movement from UC Berkley’s archive and The Arc’s history.
    • Learn from people with disabilities through media like Crip Camp, CODA, Demystifying Disability, and Disability Visibility.
    • Follow disabled activists on social media and listen to what they share—not just during Disability Pride Month, but year-round.
  • How to Advocate for Disability Rights and Inclusion: Disability rights are under attack—from cuts to Medicaid and Social Security, to threats against IDEA, Section 504, and a resurgence of the R-word. Here’s how you can show up and make a difference:

Share Your Disability Story

What are you proud of? What do you want other people to know? Share your videos, pictures, or written answers on your favorite social media platform using hashtags #DisabilityPride and #DisabilityPrideMonth. We want as many people to join the conversation as possible! See what The Arc’s community has to say by finding us on Instagram, LinkedIn, Facebook, and X/Twitter. All content shared by The Arc includes alt text and accessible captions. This reinforces our commitment to accessibility—we hope you will do it, too!

Attend a Disability Pride Month Event in Your Area (updated for 2025!)

Meet and show your support for the local disability community by attending one of these events. This is the largest database for Disability Pride Month events there is!

If this page helped you learn more, share it to keep the conversation going.

If you have questions or events/resources we should add to this page, please email Jackie Dilworth at dilworth[at]thearc.org!

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.