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

Autism Acceptance Month: Celebrate Differences

/in /by The Arc

April is Autism Acceptance Month, a time to recognize the talents, contributions, and diversity within the autism community. At The Arc, autistic people and their loved ones are a part of our staff, volunteer leaders, and the driving force behind our work. Their lived experiences shape our advocacy at a time when an estimated 1 in 31 children in the U.S. are autistic, yet too many remain underserved.

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

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

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

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

Get Involved:

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

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

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

Developmental Disabilities Awareness Month: Shattering Stigmas & Obstacles

/in /by The Arc

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

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

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

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

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

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

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

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

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

The Arc logo

The Arc on Outcome of Election and Path Forward for People With Disabilities and Their Families

/in /by The Arc

With the election of President Trump and a new Congress, The Arc of the United States will continue to partner with all elected officials, advocating and educating that disability is a part of our shared human experience—one that touches every family, every community, and every generation regardless of political party. When people with disabilities have the support they need to live, learn, work, and participate fully in their communities, all Americans benefit.

Yet, every day, people with disabilities and their families face remarkably challenging circumstances. Children with disabilities are being denied educational supports that will ensure they get a strong foundation for their lives ahead. The unemployment rate of adults with disabilities is 2 times higher than the rate of non-disabled people. Nearly 700,000 people are stuck on years-long waiting lists for home and community-based services, which allows them to live independently in their communities. Caregivers are stretched to the breaking point, balancing work, financial stability, and the fight to secure essential services. These aren’t abstract policy issues. They are daily realities that affect families in every neighborhood, town, and state across America.

We have work to do, and The Arc will never stop advocating for the policies that people with disabilities need to thrive.

The Arc has deep roots in communities nationwide. For 75 years, our strong network of self-advocates, families, and professionals has shared their expertise with elected officials to ensure policy decisions reflect the pressing, serious needs of everyday Americans. We’ve seen firsthand that the most enduring progress comes when all leaders recognize disability rights as human rights.

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.

Logan Dreams of Starting His Business, But the SSI Asset Limit Holds Him Back

/in /by The Arc

“My entire life, I have been proving people wrong about what I can do.”

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.Born at 27 weeks and just over 2 pounds, Logan was small enough to fit in the palm of his mom’s hands. He spent a month in the neonatal intensive care unit on heart monitors and chest tubes, and his lungs collapsed twice. The doctors told his mom that Logan would never talk or speak and that he would be a “vegetable.” But they were wrong.

With the support of his family, friends, and various aides, Logan grew to be a happy and healthy kid, and he discovered his life’s work.

Logan’s passion in life is livestock, and he’s ready to open his business.

In middle and high school, Logan joined the Future Farmers of America (FFA), a youth organization that prepares its members for leadership, growth, and career success through agricultural education. With the support of his teachers, who fostered his passion in this area and believed in his skills, he not only achieved his state level degrees but also his American degree, the highest FFA degree available. Now, Logan wants to start his own cattle company and knows that nothing is going to stop him from being successful if he can get started. He dreams of having his name on everything in his business—from the truck to the stock.

“My family raised cows growing up, and I got hit by the bug to learn more. My senior year, I showed and sold my first steer. I knew immediately that cattle was what I was meant to do. I want to give back to those who gave everything to me and be someone kids in the industry can look up to.”

But the Supplemental Security Income (SSI) asset limit is limiting Logan and stopping him from pursuing his dreams.

SSI provides critical support to Logan and nearly 8 million other people with disabilities and older Americans. Logan uses the money he gets from SSI to pay his rent and food. But most importantly, SSI qualifies Logan to use Medicaid to help pay for his health care needs. Without it, his family would struggle to pay for the things he needs for his daily life.

Right now, outdated rules stop people who get SSI from being able to save money. Unmarried people like Logan who get SSI can only have $2,000 in assets, which includes money in bank accounts, retirement accounts, and other savings. Married people can only have $3,000 in assets.

Logan, a young man in a wheelchair, is reaching his arm out to touch a cow that's standing next to him.The current SSI asset limit means that Logan can’t open his own cattle business, since even owning one steer would put him over the limit.

“I want to do what I want to do and how I want to do it…. I want to make a living. I also have other dreams – to get married and have kids, to have a life like everyone else has.”

At 25, Logan’s not done—he’s just getting started to prove everyone wrong. But he needs Congress’ help to make his next dream possible by passing laws to increase the asset limit.

“Congress hasn’t done anything in 40 years to raise this limit. It’s time to take care of business and get this change done. I’ll keep going, even if I have to call 125 people. The words ‘I can’t’ are not in my vocabulary.”

Congress is considering bills that would raise the SSI asset limit. It would raise the limit from $2,000 to $10,000 for single people like Logan, and it would increase the limit from $3,000 to $20,000 for married couples who get SSI.

For Logan, this change would be huge, as it would allow him to start his business.

Support Logan’s dream and the dreams of other entrepreneurs with disabilities across the country. Contact your member of Congress to raise the SSI asset limit.

Orange graphic that says "The only r-word we know is respect."

The R-Word: Why Language Matters and How We Can Do Better

/in /by Jackie Dilworth

Have you ever caught yourself or someone else casually using the R-word? You know the one, that outdated term that’s somehow still in our vocabulary. It might seem harmless, but it’s far from it. The R-word is loaded with hurt, discrimination, and a painful history. Here’s why it’s time we ditched it for good.

A Word With a Painful Past

Let’s rewind to 1961. “Mental retardation” made its debut as a neutral medical term for people with intellectual disabilities. But it quickly became a cruel insult, carrying the weight of discrimination and prejudice.

The early to mid-1900s were a dark time for people with intellectual disabilities. They faced forced sterilization, institutionalization in inhumane conditions, and were often denied basic rights and dignity. Society viewed them as burdens to be hidden away, not as valuable members of our communities.

We’ve made some progress, like Rosa’s Law in 2010 replacing “mental retardation” in federal language with “intellectual disability.” It was a step in the right direction, but the R-word stubbornly lingers in our vocabulary and even in some state laws.

At The Arc, when people with disabilities speak up about language that hurts them, we listen and we change. Our name and terminology have evolved throughout our history because the very people we serve tell us what respect looks like. The Arc is not an acronym. The Arc stands for and with people with disabilities and their families, over the course of their lifetimes. And just as an arc is dynamic, so too is our commitment to adapting our language. When someone tells us a word hurts, we change. It’s that simple, and that important.

More Than Just a Word

Make no mistake: The R-word is hate speech. It’s a slur against people with intellectual disabilities. But somehow, it’s still sneaking its way into everyday conversation, social media posts, and even hit TV shows. It’s become so normalized that many people, especially younger folks, don’t even blink an eye when they hear it.

This is deeply troubling and harmful. When someone uses the R-word as an insult or joke, they’re equating intellectual disability with something negative or laughable. It’s offensive and dehumanizing. Terms like “idiot” and “moron” also have roots in demeaning people with disabilities. These words cause real pain and perpetuate harmful stereotypes. They’re not cool, not right, and definitely not funny.

The Ripple Effect

Words have power. They shape how we see the world and the people in it. When we casually use terms like the R-word, we’re not just being insensitive, we’re actively contributing to a culture that excludes and discriminates against people with intellectual disabilities.

Think about it. If you constantly heard a core part of your identity being used as shorthand for “stupid” or “worthless,” how would you feel? It’s dehumanizing. The R-word is a constant reminder of the discrimination and challenges people with disabilities face every day. From employment discrimination to healthcare disparities, its use reinforces a system that often fails to see the humanity in people with intellectual disabilities.

The Comeback Nobody Asked For

After years of progress, the R-word is making a comeback, especially online and in pop culture. It’s like watching history repeat itself in real-time. It undermines years of advocacy and reopens wounds for those who’ve fought hard for respect and inclusion.

People with disabilities have made it clear: this word is hurtful and unacceptable. It’s not “just a joke” or “no big deal.” The R-word serves as a stark reminder that despite progress, discrimination and mistreatment persist. That’s why we have urgent work to do to create a truly inclusive society.

The only r-word we know is respect.

So, What Can We Do About It?

  1. Check yourself: We all have biases and bad habits. Take a moment to really think about the words you use and what they might mean to others.
  2. Speak up (kindly): If you hear someone use the R-word, don’t just cringe silently. Speak up! But remember, the goal is education, not humiliation. A simple, “Hey, did you know that word can be really hurtful?” can go a long way.
  3. Spread the word to end the word: Share this blog post with friends and family. Sometimes, all it takes is one person to start a ripple effect of change.
  4. Celebrate diversity: Instead of focusing on limitations, let’s talk about the amazing contributions people with intellectual disabilities make to our communities every day.
  5. Keep learning: The conversation around disability and language is always evolving. Stay curious and open to learning more.

Remember, changing the way we talk isn’t about following trends. It’s about fostering a society where every person is treated with dignity and respect. It’s about recognizing the inherent worth of everyone. At The Arc, the only R-word we should know is respect. And that’s something worth talking about and acting on every single day.

A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

/in , , /by The Arc

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

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

This Election Year, Know Your Voting Rights!

/in /by The Arc

Voting is an essential part of our democracy and our right as citizens.

Too often, people with disabilities struggle to be able to vote.

Here are some (but not all) of the reasons that people may struggle:

  • Polling places may not have accessible entrances, spaces, machines, or ballots.
  • Poll workers and election officials may not have had adequate training on how to support or communicate with people with disabilities, especially voters who also are members of other groups that have been treated unfairly in the past.
  • Poll workers may assume a person cannot vote because they have a disability or are under guardianship.
  • Voter suppression laws may have restricted the ways that voters with disabilities can receive assistance in voting or made it harder to vote by mail.

People with disabilities who have guardians face barriers to voting that are out of line with federal law.

Nationwide, thousands of people with disabilities have guardians.

Guardianship occurs when a court determines a person is unable to make some or all of their own decisions. They appoint a guardian to make certain decisions for the person.

Right now, some states have passed laws that ban people with guardians from voting or make people work harder to show that they can vote.

And many people believe or have heard wrong information from poll workers, family members, or direct care workers that people with disabilities cannot vote if they have a guardian.

Recently, the U.S. Department of Justice (DOJ) clarified voting rights for everyone and said people who have guardians can vote.

Specifically, the DOJ shared states cannot:

  • Ban people from voting or registering to vote just because they have a guardian or conservator.
  • Make rules that make voters work harder to show they are eligible to vote, like through petitioning the court to vote or taking a competency test.
  • Ban voters with disabilities from receiving the help they need to vote.

The DOJ also shared more about the help voters can get throughout the voting process.

  • Voters can get help requesting, completing, or returning a ballot.
  • They can get help when they vote in person, absentee, or by mail-in ballot.
  • They must be able to get help from someone they choose, not just from an election worker.
  • Voters with disabilities who need help putting their ballot in a mailbox or drop box must be able to get help from someone they choose.

What Can I Do?

  • Know your voting rights and make sure that you are ready to vote. Visit thearc.org/vote to learn more.
  • Speak with your guardian or the person you act as guardian for (if you have one) about this news and how it impacts you. Learn more about voting rights under guardianship.
  • Share this news with others. Everyone should know what the right rules are.
  • Speak up if your rights are denied or if you see someone else’s rights denied! Contact your local protection and advocacy organization. They provide legal aid to people with disabilities. They can help you make a complaint to your election office or figure out your next steps.

 

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."

Tips to Advocate During August Congressional Recess

/in /by The Arc

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."For some, August can be a time for camping trips, beach days, and other fun summer activities. But for members of Congress, August signals the start of Congressional Recess. During August recess, U.S. senators and representatives leave Washington, DC, and travel to their home states and districts to begin a fast-paced schedule of constituent meetings, town halls, and other community events.

Last year, many of you answered the call to engage with your members of Congress by sharing your stories. We are so grateful to everyone who wrote, called, tweeted, and met with their representatives. Because of you, the concerns of the disability community were heard loudly in the halls of Congress.

With August nearing, it’s time to do what you do best and advocate for disability rights again!

August recess is your moment to provide members of Congress with a glimpse into your life and the issues that matter to you. With your stories echoing in their minds, these decision-makers can return to Washington ready to legislate meaningful change for the disability community.

To continue to build on the impact you have made in years past, we have prepared a few tips to keep in mind as you navigate this August Congressional Recess:

  • Follow us on Facebook, X/Twitter, Instagram, and LinkedIn. Throughout August, we will be sharing actions you can take to advocate with your members of Congress.
  • Visit our Action Center to find a few easy ways to take action. Tell your members of Congress to invest in home and community-based services and to update the Supplemental Security Income program for the first time in over 30 years.
  • Visit your U.S. senators and representatives. You can look them up using our “Find your elected officials” tool. If you met with one of them during a previous August recess, make another appointment and strengthen your connection. And don’t forget to thank them for any past legislative actions that advanced disability rights!
  • Follow your elected officials on social media. Learn what legislation your representatives are currently working on by finding their X/Twitter handles and following them.
  • Connect with your local or state chapter of The Arc. Find your local chapter and reach out to them to learn about any meetings or other activities you can join.
  • Attend town hall events. Many members of Congress host town hall meetings during the August recess to hear from their constituents. Contact your members of Congress or review their websites to see their town hall schedules.

We’re so proud of the way you have shown your commitment to disability rights over the years. Now, let’s build on that success! Connect with your representatives and share how their legislative actions (both past and present) affect your family. Your stories and perspective on important disability policy issues can prepare your legislators to fight for disability rights this year and beyond!

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

Make Plans to Exercise Your Right to Vote in 2024

/in /by The Arc

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!

Written by: Claire Manning, Senior Director of Advocacy and Mobilization for The Arc of the United States

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

/in , , /by The Arc

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.”