A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.

5 Disability Stories Journalists Should Be Covering Right Now (2024)

Journalists, are people with disabilities and disability issues at the forefront of your coverage? With over 61 million Americans and 1 billion people globally living with a disability, we all know and love someone with a disability. Yet this large and influential community remains underrepresented in media narratives. Too often, disability stories perpetuate negative stereotypes, reduce people to inspirational tropes, or oversimplify their diverse experiences and intersectional identities.

The Arc has driven disability rights for nearly 75 years, and we want to help you elevate authentic and diverse disability perspectives across all beats. Building on last year’s overlooked topics, we’re bringing you five new timely topics that demand greater attention. We hope this gives you a starting point to investigate the systemic barriers, discrimination, and lack of access and representation that people with disabilities face every day.

Here are 5 crucial angles you should report on in summer and fall 2024:

1. Disability Pride Month

July marks Disability Pride Month, commemorating the anniversary of the Americans with Disabilities Act (ADA). Yet this annual celebration championing disability rights and human diversity rarely shows up in news programs or stories. Just like American Heart Month or Autism Acceptance Month, Disability Pride Month has rich storytelling potential. What began as grassroots parades asserting disabled people’s rights to live freely has evolved into a global movement accepting each disabled person’s uniqueness and rejecting ableism and societal pressures on non-normative bodies. It’s also an opportunity to rally around policy priorities like health care access and barriers to employment and education.

Capture the intersectional perspectives uplifting disability pride across races, LGBTQ+ identities, disability types, and other marginalized groups. Spotlight trailblazing activists and organizations continuing the fight for inclusion. Analyze how companies and governments are following through on accessibility commitments.

Don’t let inspiration porn define your coverage. Disability Pride symbolizes resilience, beauty in human diversity, and the notion that disabled lives are equally valued. Uplifting authentic voices can reshape attitudes and catalyze change in your community.

2. The Child Care Crisis

Like all parents, parents of children with disabilities want to see their child thrive, and child care is crucial to that. As you cover America’s overarching child care accessibility and affordability crisis, consider a too-often overlooked angle—the severe obstacles facing families of children with intellectual and developmental disabilities (IDD).

These families confront the most difficult barriers in finding trusted, safe, developmentally appropriate child care. Many providers outright deny services to children with IDD or prematurely expel them, deeming accommodations too burdensome despite legal requirements. Research found 1 in 6 children with autism have been kicked out of child care.

Affordable, inclusive child care programs are scarce, and the consequences are devastating. Without reliable care, parents are forced to make career sacrifices, losing income and opportunities, which only adds to their extreme stress. Children with IDD miss pivotal social and developmental experiences alongside their peers. Congress has recently taken notice of this crisis, asking the Government Accountability Office to conduct a first-ever study on the difficulties that parents of children with disabilities face in finding child care. Numerous constituents of The Arc shared their experiences for the study.

Investigate nearby centers’ admission and expulsion policies. Hold providers accountable for discriminatory practices. Encourage local parents of nondisabled children to foster inclusion and acceptance of disabled children. Spotlight the economic and emotional toll this crisis leaves on parents of children with disabilities. Center these marginalized families in your storytelling.

The experiences of families of children with disabilities must be part of this national crisis.

3. Election 2024

This election cycle carries enormous significance for Americans with disabilities, the nation’s largest minority voting bloc. Yet their perspectives and the policies shaping their daily lives are consistently overlooked in candidate debates, interviews, and media narratives. Disability cuts across every community and every issue—from education and employment to health care access and criminal justice reform. Candidates’ stances on these topics will profoundly impact disabled voters’ quality of life. And new federal guidance from the Department of Justice reinforces that the ADA prohibits discrimination in voting and protects the rights of people with disabilities.

Spotlight the diverse perspectives and policy priorities from disability advocates. Investigate how proposals on safety nets like Medicaid and Social Security will tangibly affect this population’s independence and economic mobility. Ask the tough questions about how candidates will address systemic barriers and discrimination that shut out disabled voters.

Most crucially, ensure your coverage itself is accessible and inclusive. Center disabled voices as sources and authors—not just subjects. Consciously counter biases and tropes about disability in language and graphics you use.

We hope your election coverage will elevate the disability community’s needs as frontline issues. Here’s a guide to help you get started.

4. The Social Security Customer Service Crisis

When people apply for crucial Social Security benefits, the process should be fair, prompt, and accessible. But for far too many, that’s not the reality.

The Social Security Administration (SSA) is the gatekeeper to disability benefits that millions of people with disabilities rely on for survival. Unfortunately, they’re facing a customer service crisis after more than a decade of underinvestment, rapidly expanding workloads, and record-high staff attrition. Its administrative budget has been cut by 20% over 9 years, now making up less than 1% of benefits paid—a stark contrast to what private insurers spend on overhead.

The consequences have been devastating. Over 1.1 million initial disability claims are currently pending—almost double pre-pandemic levels. Thousands of people are dying each year while desperately waiting for the income and insurance they need to survive.

Disability advocates have been sounding the alarm, demanding action from Congress. The Arc recently joined 22 organizations urging lawmakers to properly fund the SSA through the President’s budget request. They must give this agency the resources and staffing it needs to promptly and fairly adjudicate claims—upholding people with disabilities’ life-sustaining benefits and basic human dignity.

If you cover this nationally-recognized crisis, don’t overlook the experiences of people with disabilities. Localize the claims delays impacting your community. Hold leaders and lawmakers accountable for solutions. Elevate the stories of people with disabilities who are struggling to navigate life without these crucial benefits. Their stories are what will compel overdue reform.

5. AI in the Classroom

As artificial intelligence (AI) rapidly evolves, you can’t overlook its complex impact on education, especially for students with disabilities. There are opportunities, but also equity and ethical concerns to navigate.

The potential upsides? AI can tailor educational materials to individual needs and learning styles, benefiting students who require customized instruction. Additionally, AI boost accessibility for students with disabilities by converting content into visuals, simplified language, text-to-speech, or speech-to-text. Algorithms analyzing student data could also identify trends and patterns that can inform tailored instructional strategies and interventions.

But AI bias is a major risk. If trained on data underrepresenting or stereotyping certain groups, the system’s recommendations could entrench discrimination against students with disabilities. There are also ethical and privacy issues around consent, autonomy, and the appropriate use of student data. Clear guidelines and safeguards are vital to protect students’ rights and well-being.

Localize this nationally-relevant topic by scrutinizing your school district’s AI policies and spending. Gather perspectives from educators, parents, and students themselves. How are they mitigating bias and protecting students with disabilities? Is AI’s efficiency inadvertently diminishing human interaction’s role?

As always, center the rights and needs of the disability community. Hold AI companies accountable for inclusivity and ethical design from the start. Highlight work making AI truly accessible and empowering for disabled students. By examining AI’s complex classroom implications, your coverage can drive thoughtful dialogue and ensure no student is left behind.

BONUS TOPIC: Discrimination & Criminalization of Parents With Disabilities

As journalists ramp up Mother’s Day and Father’s Day content, one perspective is often missing—the experiences of disabled parents. This glaring oversight perpetuates harmful biases that parents with disabilities face, leading to widespread discrimination and even family separations.

Despite having the same dreams of raising children as everyone else, parents with IDD are shockingly overrepresented in the child welfare system. Up to 80% permanently lose custody due to prejudicial doubts about their caregiving abilities rather than evidence of neglect or abuse.

For all their resilience, parents with IDD also face everyday discrimination as they navigate life as a parent—from educators to cashiers. Stories humanizing their loving bonds and advocacy battles are urgently needed.

This Mother’s, Father’s, and Parent’s Day, celebrate their journeys through authentic, nuanced profiles. Highlight the support systems sustaining parents with disabilities. Elevate disabled parents’ own experiences to counter negative stereotypes about them being “unfit.” Spotlight their pride, resilience, and devotion to their children. Most crucially, include video, images, and stories of parents with disabilities in your everyday coverage of parenting topics.

This angle offers fresh perspectives that will strengthen your holiday storytelling and year-round diversity coverage.

Please contact us at dilworth@thearc.org if you need sources, background information, or other issues. Also, be sure to visit our Press Center to find guides on reporting on disability. We are excited to see your impactful work!

A person with disabilities using a wheelchair is with a thre other people. They are on a sidewalk in a city.

The Arc and United Health Foundation Launch $2.5M Partnership to Tackle Mental Health Crisis for People With Disabilities

The partnership will provide $100,000 to 10 communities to expand mental health support for people with intellectual and developmental disabilities

MINNEAPOLIS, MN and WASHINGTON, DC – The United Health Foundation, the philanthropic foundation of UnitedHealth Group (NYSE: UNH), has awarded The Arc of the United States a three-year, $2.5 million grant to improve mental health care for people with intellectual and developmental disabilities (IDD). Up to 40% of people with IDD have co-occurring mental health conditions, and this critical funding will help address their unmet mental health needs.

Currently, only 1 in 10 children and adolescents with IDD and mental health disorders receive specialized services. Additionally, people with disabilities report 3 times more suicidal ideation compared to those without disabilities, and adults with disabilities are 3.5 times more likely to experience frequent mental distress. These statistics highlight the need for training and awareness to ensure providers and caregivers are equipped to support the mental health needs of people with disabilities.

“People with intellectual and developmental disabilities face barriers from the moment they are born, which can have a direct impact on their mental health,” said Katy Neas, CEO of The Arc of the United States. “But too often, their mental health needs are going unmet due to stigma, lack of training, and biases. This generous investment by the United Health Foundation gives us a path to tackle this mental health crisis head-on by providing critical training to all who interact with our community—medical professionals, caregivers, first responders, educators, families, and more. Let’s work together to improve coordination of care, raise awareness, and ensure everyone’s mental health needs are supported.”

The partnership will deploy $100,000 in direct grants to 10 chapters of The Arc nationwide to build comprehensive local solutions tailored to people with IDD. This includes expanding access to quality mental health care services, improving coordination between disability and health systems, training over 2,000 providers and caregivers to recognize mental health needs in people with IDD, and launching public awareness campaigns to counteract stigma and misconceptions.

The 10 chapters receiving grants are: The Arc of Arizona, The Arc of Loudoun (VA), The Arc of Macomb County (MI), The Arc of Mississippi, The Arc of Oklahoma, The Arc Oregon, The Arc Prince George’s County (MD), The Arc Rhode Island, St. Louis Arc (MO) and Sertoma Star Services (IL).

“When we root ourselves in empathy and build alongside those with lived experiences, pretty powerful things begin to take shape,” said Dan Schumacher, executive vice president, UnitedHealth Group, who also serves on the Board of Directors of the United Health Foundation and as the executive sponsor of UnitedHealth Group’s disability inclusion employee resource group. “The United Health Foundation is committed to building strong partnerships and providing resources to address the needs of our communities. Together with The Arc, we’re excited to see the impact this work has on providers, caregivers and the people they serve.”

A key component of the grant is partnering with the National Council for Mental Wellbeing to adapt its evidence-based Mental Health First Aid program with information on IDD. The training teaches how to identify and respond to signs of mental illness and substance disorders. As the Council notes, “Most of us would know how to help someone having a heart attack, but too few know how to respond if someone was having a panic attack or showing signs of substance abuse. Mental Health First Aid takes the fear out of starting these conversations.”

Over three years, the United Health Foundation grant will help train caregivers, health care professionals, first responders, educators, and family members to recognize the mental health needs of people with IDD and decrease the number of mental health crisis incidents experienced by this population. The partnership will also provide mental health resources directly to people with IDD through the participating chapters to help them recognize and communicate their own needs. This is vital for individuals, and also families as research shows the mental well-being of parents of children with IDD is strongly influenced by the severity of their child’s co-occurring mental health conditions.

###

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.

About the United Health Foundation: Through collaboration with community partners, grants, and outreach efforts, the United Health Foundation works to improve the health system, build a diverse and dynamic health workforce, and enhance the well-being of local communities. The United Health Foundation was established by UnitedHealth Group (NYSE: UNH) in 1999 as a not-for-profit, private foundation dedicated to improving health and health care. To date, the United Health Foundation has committed nearly $800 million to programs and communities around the world, including a $100 million commitment to help diversify the health workforce. To learn more, visit UnitedHealthFoundation.org.

Media Contacts:
Tony Marusic
UnitedHealth Group
312-363-7714
tony_marusic@uhc.com

Jackie Dilworth
The Arc of the United States
202-617-3271
dilworth@thearc.org

A young man in a wheelchair outside next to a woman standing next to him. They are both dancing and smiling excitedly. In the bottom right corner are stripes in the colors of the Disability Pride Flag (green, light blue, white, yellow, and red). Across the bottom is white text against a dark gray background that reads "Celebrate Disability Pride Month."

Why and How to Celebrate Disability Pride Month

Disability Pride Month is celebrated every July and is an opportunity to honor the history, achievements, experiences, and struggles of the disability community. Why July? It marks the anniversary of the Americans with Disabilities Act (ADA), landmark legislation that broke down barriers to inclusion in society.

People with disabilities deserve to live full, self-determined lives, just like everyone else. Yet discrimination persists for the 1 in 4 U.S. adults living with a disability. That’s why we spotlight inspiring stories in July and beyond that show what’s possible with inclusion.

The History of Disability Pride Month

Disability Pride Month happens every July to mark the ADA’s anniversary, which was passed on July 26, 1990. The first 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.

2024 Theme: “We Want a Life Like Yours”

This theme comes from The Arc’s National Council of Self-Advocates. It reflects the disability community’s dreams for life experiences that they are too often denied. All month, we’ll share diverse stories of people with disabilities thriving as students, employees, leaders, engaged members of their communities and families, and more given a chance.

Learn About the Disability Experience

Share Your Disability Story Using #DisabilityPride and #DisablityPrideMonth

What are you proud of? What do you want people without disabilities to know? Share your videos, pictures, or written answers on social media using hashtags #DisabilityPride and #DisabilityPrideMonth. We want as many people to join the conversation as possible! Join The Arc’s celebration by following us on Instagram, LinkedIn, Facebook, and X/Twitter.

Take Action

  • Reach Out to Your Elected Officials: Educate your elected officials about policies that harm or strengthen the quality of life of people with disabilities. Make sure you bookmark The Arc’s Action Center for timely alerts!
  • Donate to The Arc: For nearly 75 years, The Arc has been at the forefront of positive change in disability rights, and we’re not slowing down! Donate to join our grassroots movement that is creating policy, programs, and possibilities for people with disabilities.

Teach Your Kids to Acknowledge and Include Disabled People

Help foster inclusion for future generations of people with disabilities. Here are age-appropriate tips from TODAY.com, HuffPost, and Cincinnati Children’s.

Attend a Disability Pride Month Event in Your Area

Celebrate your local disability community and show your support! There isn’t a database for Disability Pride Month events (yet!), but here are a few coming up in major cities:

Hire People With Disabilities

Right now, 85% of people with intellectual and developmental disabilities (IDD) are unemployed. Many of them want to work and have skills to contribute. Among those who are employed, people with IDD are working fewer than 13 hours a week on average and less than one-fifth of them are getting workplace benefits. But research shows that disability inclusion is a proven good business decision. Read these stories from employees and their employers.

There are many other ways you can celebrate Disability Pride Month, and we hope this list gives you a good starting point. Thank you for doing your part to amplify the voices and experiences of people with disabilities!

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

The Arc logo

Sexual Assault Could Happen to Anyone

By James R. Meadours

This month is Sexual Assault Awareness Month, and it makes me think about when I was sexually assaulted as a teenager. When I got assaulted the first time, the girls made me have sex with them, but other times it was touching me and fondling me. They made me go into the backyard where it was muddy and I got dirty. My mom asked why I was dirty, and I told her I was playing football. I felt like the girls stole something from me, like a piece of me was stolen from my body. They stole my innocence.

My self-esteem was very low, and I was afraid to tell anyone. I thought about running away from home, but I had no money. I was forced to be the man of the house and was hurt mentally and physically by family members. I was afraid to tell my family what happened since they were hurting me too.A close up of a man smiling. He is wearing glasses and has a black shirt and a beard.

I moved to a new state and didn’t know who I could talk to. I tried to find a place of worship in Baton Rouge, but they talked down to me and I did not feel welcomed. I feel like I hit a wall. I didn’t have the same connection as I did in Oklahoma with the church.

I was assaulted again when a sex worker took advantage of me, and I didn’t know how to ask for help. She tricked me into thinking it was a relationship but then she asked me for money.

My last sexual assault was also in Baton Rouge when I went to LGBTQ church service and met someone who I thought wanted to be my friend. His name was Jay. I told him I was straight through the phone TDD service because he was deaf. I thought I found a new friend. When he came to my apartment, he instantly did something that scared me and he made me do sexual things and he raped me. I tried to get him to stop by signing NO! over and over. I told him I am not gay and didn’t want that, but he forced me do things like the girls did to me when I was a teenager. Again, I felt like a big part of me was missing. Someone stole my innocence from me again. I decided to step outside my comfort zone to tell my boss and two friends, and they helped me get the help I needed. My boss called 211 and a colleague of mine took me to the hospital where I saw a sexual assault nurse examiner, Ms. Wanda. I pressed charges and Jay was arrested.

It’s been hard to have a relationship since going through this. I did find someone to be with before the rape, but we broke up. It took a year to recover from losing her. Finding a soulmate has been a big challenge ever since then. I am almost 60 years old now and I’m getting older. I do not want to be alone in my later years.

With those experiences behind me, now I have the skills to help others stand up and talk honestly about their own sexual assaults. During Sexual Assault Awareness Month, I want to thank Ms. Wanda for all she did to help me. She has been a great advocate and supporter of my sexual assault advocacy work. She is very proud of me and my work, and I would not be the strong advocate I am today without her belief in me. People like me need to know they are not alone. There are people who will believe you and want to help.

A Note From The Arc:
James’ story is unfortunately common. People with intellectual and developmental disabilities are the victims of sexual assault at a rate seven times higher than those without disabilities. The Arc’s National Center on Criminal Justice & Disability works with self-advocates like James every day to educate professionals and empower survivors.

If you’ve been a victim of sexual violence, The Arc and the University of Cincinnati are organizing focus groups to learn about barriers preventing accessible health care and reporting crimes to law enforcement. The focus groups will take place virtually in May and June 2024. To learn more and participate, click here.

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

Make Plans to Exercise Your Right to Vote in 2024

On Tuesday, November 5, 2024, eligible voters will have the opportunity to vote in federal, state, and local elections. The leaders who are elected will have a big impact on people with disabilities and their families, because they influence what policies are made and how tax dollars are spent. Your vote has the power to shape future policy on issues critical to the disability community!

What’s on the Ballot This Year?

  • Federal: Voters will decide on a president and vice president. The U.S. House of Representatives will be choosing leaders for all 435 seats and the U.S. Senate will be electing 33 members.
  • State: Eleven states will hold governor’s races. State executive official elections will also take place this year.
  • Local: You can find information on this year’s elections, polling locations, and more for your county and city here.

Prepare to Vote in 2024

Use The Arc’s Election Center (available in English and Spanish) to:

  • Review your voter information. Make sure your voter information is up to date with your current name, address, email, and phone number.
  • Register to vote. You can register online or get information on how to register by paper.
  • Find your candidates. See who is running for office in your area.
  • Find your elected officials. See who currently represents you at the federal, state, and local levels.

Want More Information on Voting?

  • Visit TheArc.org/Vote. You will find resources that cover how to vote, your voter rights, and what to do if your rights are violated. You will also find information about major issues that impact people with disabilities and their families and sample questions you can use to ask candidates about these issues.
  • Follow The Arc on Facebook, X (formerly Twitter), Instagram, and LinkedIn. We will be sharing voter updates, resources, and stories all the way to Election Day.
  • Connect with your local or state chapter of The Arc. Use our Find a Chapter tool to find a chapter near you. They may host candidate forums and other events you can join.
  • Follow your elected officials on social media. Learn about their current campaign activities by following them on X (formerly Twitter). You can find their official Twitter handles here.
  • Sign up for our action alerts and email updates.

Now is the time to let your opinions be heard on the critical issues that affect the lives of people with disabilities and their families. Get out there, register, and make plans to exercise your right to vote in 2024!

The Arc logo

The Arc Fights for the Rights of Homeless People With Disabilities in Landmark Supreme Court Case

The Arc Joins Law Enforcement Associations, Faith-Based Organizations, Medical Professionals, Legal Experts, Academic Leaders, Advocates, and Members of Congress in an Amicus Brief Urging an End to the Criminalization of Homelessness

Washington, DC — In a historic move to protect the rights of people with disabilities experiencing homelessness, The Arc of the United States has joined a powerful coalition of advocates in submitting an amicus brief for the upcoming U.S. Supreme Court case Johnson v. Grants Pass. This case could end the cruel and unconstitutional criminalization of homelessness nationwide, a crisis that disproportionately impacts the disability community.

Johnson v. Grants Pass is the most important case regarding homelessness in the past 40 years. It will address the critical issue of whether laws punishing homeless individuals for sleeping outdoors with basic protections such as a pillow or blanket—when no safe and accessible shelter options are available—are violations of the Eighth Amendment of the U.S. Constitution, which protects against excessive bail, fines, and cruel and unusual punishment.

As noted in the amicus brief, the members of Grants Pass’ homeless community do not choose to be homeless. Instead, in a city with no public shelters, they have no alternative but to sleep in parks or on the street. The Ordinances do not deter disabled homeless people from sleeping in public places because they have no alternative. They do not rehabilitate homeless people from their involuntary conduct but make it even less likely that they will be able to obtain adequate housing.

People with disabilities face daunting barriers to accessible, affordable housing. Less than 5% of housing is accessible for moderate mobility needs, and under 1% is accessible for wheelchair users. Widespread discrimination compounds the problem. Housing costs are also prohibitive for many disabled people who rely on public assistance for basic costs of living. The average cost of a one-bedroom apartment in the U.S. exceeds the maximum monthly Supplemental Security Income a person can receive. With limited income and a lack of affordable options, people with disabilities are at heightened risk of homelessness and institutionalization.

“Criminalizing homelessness exacerbates the systemic injustices impacting people with intellectual and developmental disabilities,” said Shira Wakschlag, The Arc’s Senior Director of Legal Advocacy & General Counsel. “People with intellectual and developmental disabilities (IDD) face a serious lack of safe, affordable, accessible, and integrated housing and experience significant housing-related discrimination. People with IDD are also among the nation’s poorest citizens due to inadequate benefits and services, putting many at risk of unnecessary institutionalization or homelessness. Punishing them for having no choice but to sleep outdoors is a moral failing that perpetuates discrimination, poverty, and segregation. It also does nothing to provide the supports and services homeless people with disabilities need to end the cycle of poverty.”

The Arc joins over 20 disability rights organizations and scholars in an amicus brief that demands justice for the rights of homeless individuals across the U.S. They are joined by the National Homelessness Law Center (NHLC) and a broad array of hundreds of organizations and public leaders who have submitted a total of 39 amicus briefs on behalf of the plaintiffs.

“This case challenges us to face the reality that using things like jails and fines do nothing to solve homelessness and actually make homelessness worse,” said Jesse Rabinowitz, campaign and communications director for NHLC. “Punishing our neighbors who have no choice but to sleep outside pushes them further into poverty and makes it harder to secure work and housing. The overwhelming support from a diverse array of organizations that we see in these amicus briefs underscores the need for our elected officials at every level of government to solve homelessness with housing and support, not make homelessness worse by using jail cells and bulldozers.”

Currently, more than 600,000 people in the U.S. experience homelessness on any given night, with nearly half—250,000—sleeping outside. Data from the U.S. Department of Housing and Urban Development shows a rise in homelessness for both sheltered and unsheltered individuals in nearly every state. The primary cause of the record levels of homelessness we see today is the unaffordable housing market, according to research from the Harvard Joint Center for Housing Studies.

###

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 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 National Homelessness Law Center: The National Homelessness Law Center (NHLC) is at the forefront of the fight against homelessness in America. Our mission is to fearlessly advance federal, state, and local policies to prevent and end homelessness while fiercely defending the rights of all unhoused persons. We work to shape and advance policies at the federal, state, and local levels aimed at preventing and ultimately ending homelessness. By fostering partnerships, influencing policy, and mobilizing communities, the NHLC is dedicated to transforming how society addresses homelessness, striving for a future where everyone has a place to call home. Learn more at homelesslaw.org.

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

Autism Acceptance Month: Celebrate Differences

April is Autism Acceptance Month, celebrating 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 key people guiding our work every day. Their lived experiences are vital, as an estimated 1 in 36 children in the U.S. have autism—reflecting a large yet persistently underserved population.

The big picture: Autistic people deserve to be embraced and valued by our society. Too often, they face misunderstanding, discrimination, and lack of access on all fronts—in education, employment, justice systems, and community life. True inclusion means creating environments where diverse needs are accommodated, allowing people with autism to thrive as their authentic selves.

History and shift to acceptance: The roots of Autism Awareness Month trace back to the Autism Society’s first celebrations in April 1970. In 1988, President Reagan issued the first presidential proclamation for National Autism Awareness Month. The paradigm shifted in 2021 when Autism Awareness Month became Autism Acceptance Month, a powerful reframing putting the emphasis on creating an inclusive society that celebrates autistic people all year long. This evolution moved beyond awareness to dismantling stigmas, fostering respect, and enabling autistic people to fully participate in society as their authentic selves. This shift matters because the language we use holds profound importance in affirming identities and human dignity.

Another note on language: Many in the autism community prefer identity-first language (“autistic person”) over person-first language (“person with autism”). Many autistic people view their autism as an inseparable part of their identity and take pride in who they are.

What we’re doing: The Arc is uplifting the voices and perspectives of autistic people in April and beyond. Learn from two powerful leaders on our national Board of Directors:

Join us in embracing the unique strengths and boundless possibilities within the autism community.

🧡 Donate to The Arc’s life-changing services and advocacy for people with autism.
⭐ Volunteer with your local chapter of The Arc to champion inclusion.
📣 Amplify stories from autistic people by following #ActuallyAutistic and use #AutismAcceptanceMonth to join the conversation.

“True inclusion is ensuring people with autism have every opportunity to live life to the fullest. When we listen deeply and make spaces truly welcoming and inclusive—that’s when everyone can shine brightest.” – Katy Neas, CEO of The Arc

A photo of Ken Oakes wearing a suit with a flower in the lapel. He is outside at an event, speaking into a microphone.

Spotlighting The Arc’s Changemakers: Kenneth Oakes, Immediate Past President

A childhood friendship sparked Ken Oakes’ lifelong dedication to the disability community. His mom’s cousin Louise had Down syndrome and was only 10 years older than him, making her part of Ken’s inner circle growing up. This early exposure ignited a drive to serve, though he didn’t know where it would lead him yet. Ken always wanted to teach, but had his sights set on high school social studies. A college observation requirement opened the doors to teaching children with disabilities. Though hesitant at first, as Ken shares, “I fell in love with it.” That summer, he applied to teach at a summer school for students with intellectual and developmental disabilities (IDD), the G.A. Barber Center run by The Arc of Erie County. For the next 47 years, he devoted his career to special education and as an advocate for children and adults with disabilities and their families.Newspaper clippings about Ken Oakes.

The Arc has continued to shape Ken’s career and volunteer work since 1976. He spent college summers working at the Barber Center and volunteering with The Arc of Erie County, becoming President of the Erie Youth Arc. Every summer, he and his fellow Youth Arc volunteers from across the state would go to a state-run institution for people with IDD. They would spend the weekend there to paint rooms and “brighten up their world.” While in college, Ken was working part-time in the group homes operated by the G.A. Barber Center. He helped former residents transition to life outside of the institution that they had spent decades confined within. Ken explains, “My whole family got involved. I brought folks to my parents for dinner—and even the holidays if they didn’t have family to spend it with. I just wanted a better life for them.”

After college, Ken went on to spend four decades as a teacher, a program consultant, and an administrator. As Ken says, “special education was my world.” But he will never forget his first day. His students, 7 of whom were full-time wheelchair users and 3 of whom had IDD, arrived 45 minutes later than everyone else and spent their whole day in one classroom. “They didn’t get art, they didn’t get physical education, they didn’t go to the library,” explains Ken. “Because of The Arc, I knew that was wrong. We started eating lunch at a separate table in the cafeteria and going to the gym and library by ourselves. After a couple of weeks, I told my principal that I’d like my students to go to general education classes. By the end of the first quarter, all my kids were in some general education classes, which helped them make friends outside of our classroom. Soon, my kids were having lunch with their new friends, not at a separate table in the cafeteria or in our classroom.” He beams with pride as he remembers Amy, a second grader who had Cerebral Palsy. Her parents were skeptical of her being included in general education. He ran into Amy at the mall four years ago, and, as Ken adds, “she went to college, got married, and is now a social worker. To know she’s achieved so much, I like to think I was part of inspiring her and changing her mother’s mind about what’s possible.”

An old black and white photHis impact on students didn’t stop in the classroom. After his career as a teacher, he went on to become the Special Education Director in Philadelphia and now teaches graduate school, supervises teachers, and was just appointed by the Governor to serve on Pennsylvania’s Special Education Advisory Panel. He also continued to volunteer with The Arc. “I think I did everything possible with The Arc.” In 2005, The Arc of Pennsylvania asked Ken to represent The Arc on the state’s Right to Education Task Force, which later led to his joining the Boards of The Arc of Philadelphia and The Arc of Pennsylvania, where he served as president of both organizations. He learned more and more about The Arc of the United States and was eager to get involved. He went to National Conventions, joined Committees, and eventually joined the national Board. “I went from organizing days at the zoo to becoming the national President—I was flabbergasted,” shares Ken.

His proudest moments aren’t in serving as President of his local chapters or the national organization. Ken explains, “Because of The Arc, all kids go to public school now and in my state, nobody lives in an institution anymore. To know I had a tiny bit to do with that is what I’m most proud of. I’ve met thousands of teachers, kids, and parents over the years, and I like to think I made life just a little better for them.”

When asked what continues to drive his involvement, Ken emphasizes, “There’s still so much work to be done.” Though life in 2024 is exponentially better for people with IDD than it was five decades ago, issues of isolation and underemployment persist today. He hopes to expand understanding and acceptance of people with IDD in our society. He says, “Be good to them because they’re good neighbors, good students, good friends to your kids, and may make a difference when they grow up.”A photo of Ken Oakes wearing a suit with a flower in the lapel. He is outside at an event, speaking into a microphone.

Ken is eager to continue contributing however he can, whether serving on a Board committee or consulting state leaders on teacher shortages. As Ken adds, “I want people to understand that The Arc has been here from the beginning and will be here for the future. We’re never going to stop making life better, one day at a time. The national office and local chapters are driven by families and self-advocates, and you can always count on The Arc.”

As for Louise, her parents kept her sheltered at home well into her adulthood. They passed away when she was in her 40s, and Louise was placed in a group home run by the G.A. Barber Center. She hated it at first. “When she first got there, she ran away twice,” describes Ken. “But little by little, she came to love it. Louise blossomed in the community, and those years were her best. What makes that so special to me is that The Arc made that happen for her, and has done that for hundreds of thousands of people.”

The Arc logo

Celebrating Women in the Disability Rights Movement

As we celebrate Developmental Disabilities Awareness Month and Women’s History Month this March, we are reminded of the powerful role women have played in the disability rights movement. From visionary founders to modern-day pioneers, the fight for the rights and inclusion of people with intellectual and developmental disabilities (IDD) has been shaped by courageous women leading the charge.

Generations ago, visionary mothers like Ann Greenberg, Elizabeth Boggs, and Eleanor Elkins sparked a grassroots revolution and laid the foundation for The Arc nationwide.

  • Greenberg founded AHRC New York City after placing a classified ad to connect with others raising children with disabilities.
  • Boggs, parent of a son with a disability, helped found The Arc, served as our first national woman president, and counseled President John F. Kennedy on intellectual disabilities.
  • Elkins founded a mothers’ support group in Bucks County, Pennsylvania, that paved the way for The Arc of Bucks County. These women changed the face of our country by demanding that children with disabilities have equal access to education. Thanks to their advocacy, millions and millions of children with disabilities have received the education necessary to allow them to live the lives of their choosing.

Today, women continue driving our mission forward within chapters of The Arc around the country. At The Arc of the United States, we’ve been fortunate to learn from women like Marty Ford, whose four decades on The Arc’s top-notch federal policy team and leadership of the Consortium for Citizens with Disabilities has shaped the disability landscape today.

The disability rights movement owes an enormous debt to trailblazers like Eunice Shriver and Judy Heumann, pioneering leaders who dedicated their lives to shattering barriers and fighting for civil rights for all people with disabilities on the global stage. And day in and day out, the heart of our work lies with direct support professionals—87% of whom are women—who provide life-changing care that empowers people with IDD to thrive in their communities.

These examples merely hint at the bold women, well-known and unsung alike, whose courage, ingenuity, and grit brought us this far. As we continue building on their legacy, we are humbled to follow in their footsteps.

– Katy Neas, CEO & Laura J. Kennedy, Board President

A young girl with Down syndrome is wearing headphones and hugging her mom.

Tonya’s Struggle to Find Child Care for Her Daughter

A young girl with Down syndrome is outdoors. She's standing inside a rock structure and smiling.

Around the country, families are struggling to find and afford child care, and child care centers are struggling to keep their doors open. Half the country lives in child care deserts, where the number of kids under age five far exceeds the child care slots available.

Families of children with disabilities face even greater challenges to finding care due to inaccessible child care centers.

Recently, Tonya from Texas shared the challenges her family has faced with finding child care for her daughter, who has Down syndrome.

“In November 2022, we enrolled our daughter, who was six years old at the time, to receive after school care at a child care center that was being built in our neighborhood. My daughter needs constant supervision and is not potty trained. We’ve been turned down from multiple centers in the past, so we were excited and also worried about any issues that may come up.”

A young girl with Down syndrome is wearing headphones and hugging her mom.

Tonya exchanged several emails and phone calls with the center director. She was assured the center would be able to provide care for her daughter and felt they had done a great job in addressing all of her concerns.

But the week her daughter started, Tonya was called to the center three times. She was asked to pick her child up because she had eloped. Elopement, or wandering away from a safe area or trusted person, is a behavior exhibited by some children with autism, Down syndrome, intellectual disability, anxiety, and ADHD.

“After the third call, I was informed that the center didn’t have adequate staff to provide constant supervision for my daughter. I was also told she was hitting other kids and would not be permitted to return… In the end, this ray of hope was a right disaster. Where, exactly, can I send her then? Right now, her dad and I do our best to keep an eye on her while we finish our workdays. And with many high school students wanting $15–20 an hour for babysitting, we can’t afford a regular babysitter.”

“Finding child care should not be this hard. It’s exhausting and disheartening, and it’s demeaning to our daughter.”

Join us and tell Congress to make child care for children with disabilities a priority today.