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Celebrating Women in the Disability Rights Movement

/in /by The Arc

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

/in /by The Arc

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.

A police woman wearing a hat a "police" vest stands looking out onto a crowd of people.

New Police Training Aims to Bridge Gap and Build Safety With Disability Community

/in , /by The Arc

Washington, DC – In the wake of the police killing of Ryan Gainer, a Black autistic teenager, The Arc of the United States and the U.S. Department of Justice’s Office of Community Oriented Policing Services (COPS Office) are announcing a landmark program to protect the lives and futures of people with disabilities. Just Policing—made possible by a $750,000 grant from COPS Office—will provide disability awareness training to police officers across the country. The program, designed to bridge the gap between law enforcement and people with intellectual and developmental disabilities (IDD), aims to address the high rates of victimization and criminalization this community faces often due to a lack of understanding and support.

The new police training program, Just Policing: Disability Inclusion Training, will provide officers with comprehensive knowledge and tools to understand and better serve people with IDD. The training will focus on enhancing bias, effective communication, recognizing IDD, de-escalation techniques, and legal obligations to ensure effective and respectful interactions. By equipping officers with this specialized training, The Arc and COPS Office are committed to improving the safety, inclusion, and overall well-being of the disability community.

Here’s why it matters: People with IDD face overrepresentation and discrimination in all stages of the criminal justice system, from increased policing to harsher sentencing. This can lead to a cycle of victimization and criminalization, perpetuating the barriers faced by people with IDD. Although people with IDD represent up to 3% of the U.S. population, the Bureau of Justice Statistics found that 20% of prisoners and 30% of jail inmates reported having a cognitive disability. People with IDD are often mistakenly perceived as suspicious due to behaviors related to their disability and may not be able to understand or respond appropriately to an officer’s commands. Not all disabilities are visible, and assumptions from officers can have deadly results. As victims, they are three times more likely than nondisabled people to be victims of violent crime and seven times more likely to experience sexual assault. Yet officers may question if people with IDD are credible witnesses, which leads to low levels of reporting these crimes.

Just Policing, launching in July 2024, will be offered both online and in-person, with the goal of training over 5,000 officers with the support of chapters in Indiana, Oregon, New Mexico, and Virginia. This would reach law enforcement who serve roughly 2 million Americans in their local communities with an additional 10 million with two statewide efforts. The in-person trainings will be led by The Arc’s local chapter staff, law enforcement trainers, and self-advocates—people with IDD who can share their lived experiences and perspectives. By addressing ableism and biases, increasing tolerance among officers, and supporting community policing strategies, the training aims to make the criminal justice system more accessible and trustful to people with IDD. Just Policing is based on a module of The Arc’s National Center for Criminal Justice and Disability’s Pathways to Justice training.

“Far too often, misunderstandings between law enforcement and people with disabilities have tragic consequences,” said Leigh Anne McKingsley, Senior Director of The Arc’s National Center for Criminal Justice and Disability. “People with disabilities should feel safe and protected in our communities. That’s why we’re bringing them together with officers and The Arc’s criminal justice experts to build awareness of the rampant, dangerous, and overlooked issues they face in our criminal justice system. Our aim is to build trust and replace fear with empathy and compassion on both sides,” she continued.

“The Office of Community Oriented Policing Services (COPS Office) is the component of the U.S. Department of Justice responsible for advancing the practice of community policing which begins with a commitment to building trust and mutual respect between police and communities,” said LaToshia Austin, PhD, Policy Analyst at the Department of Justice, COPS Office. “We are excited to fund the Just Policing: Disability Inclusion Training project by The Arc which was provided through our FY23 Tolerance, Diversity, and Anti-Bias Training – Community Policing Development Solicitation. Our goal is to increase law enforcement training on tolerance, anti-bias, diversity, and cultural awareness which will help law enforcement agencies improve community engagement, increase trust, and enhance collaborative problem-solving efforts. We envision the project to be a great success and will improve cultural competency and police legitimacy by providing high quality, interactive training for law enforcement on their interactions with persons with disabilities.”

“My justice entanglement affected how social I was because many people were willing to accept the allegations,” said a young adult with autism and traumatic brain injury who was involved with the criminal justice system and participates in The Arc’s police trainings. “It impacted my education and my ability to apply for employment. It took a long time to show that the allegations against me were not true. I am fortunate to have a family who accepted me and fought to find out the truth. Those of us who have IDD need to be involved in the trainings. Officers should begin to identify, investigate, and preserve accommodations for people with IDD just like they do other evidence. When we share our experiences, it has greater impact.”

“I’m privileged to work with both law enforcement and people with IDD to improve communication and outcomes” said Misha Marie, Social Navigator and Just Policing Trainer at The Arc of Benton County. “The best part of the work is seeing both groups relax and begin to be comfortable with each other. This is a giant step in the right direction for all of us to live in safer, healthier communities.”

In addition to training frontline officers, the project will strengthen partnerships between law enforcement agencies and local chapters of The Arc invested in making their communities more inclusive, accessible, and just for all.

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

March is Developmental Disabilities Awareness Month, a time to uplift the diverse talents and dreams of people with developmental disabilities. Common developmental disabilities include autism, cerebral palsy, Down syndrome, and learning disorders.

The big picture: At The Arc, we believe people with developmental disabilities deserve every opportunity to live the life they choose. One where they have equal access to education, employment, health care, and community living. This month, we celebrate their stories while advocating for a society where barriers to inclusion no longer exist.

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, A World of Opportunities, highlights a future where all people with developmental disabilities can thrive and pursue any path they choose.

What we’re doing: The Arc’s vast grassroots network is creating a world where people with developmental disabilities have the opportunities and support they need to thrive. This month, we’re spotlighting people who are blazing trails as self-advocates and leaders.

Like Ashley, a woman with a developmental disability who champions diversity, equity, and inclusion. And Steve, a self-advocate in Virginia who fought for nine years to gain his independence after being placed in a nursing home is living proof people can thrive in their communities. And Carlos, who overcame barriers to graduate college and is now working in accounting but still faces prejudice. And Mitch, a self-advocate in Colorado and a longtime board member at The Arc, who is a voice for how we should be supporting people with disabilities.

Join The Arc in celebrating Developmental Disabilities Awareness Month.

🧡 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 #DDawareness2024.

“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

A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.

The Arc’s Statement on the Killing of Ryan Gainer

/in , /by The Arc

A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.The killing of Ryan Gainer, a Black autistic teen, is a devastating injustice. Too many people with disabilities, especially those from marginalized communities, cannot access the crisis intervention services they need. In the face of Ryan’s mental health crisis, his family called 911 for help. Instead of receiving the care he needed from a competent professional, he was killed. Because of the tragedy of Ryan’s death and the death of others before him, The Arc’s National Center on Criminal Justice & Disability is working to reform our public safety practices across the country. This center offers comprehensive training to improve crisis response for people like Ryan. Our hearts go out to the Gainer family and all those who loved Ryan. We pledge to continue to keep working for a just, equitable world for all people with disabilities.

A school bus stopped with a diverse group of children, including children with IDD, waiting to get on and off the bus.

DC’s OSSE Sued for Failure to Provide Safe and Reliable School Transportation, Denying Disabled Students Access to Education

/in /by The Arc

Class Action Seeks to Remedy Systemic Failure and Violations of Federal and State Law

March 7, 2024 – Parents and guardians of children with disabilities living in the District of Columbia (DC), along with The Arc of the United States, filed a class action lawsuit today against DC’s Office of the State Superintendent for Education (OSSE) for failing to provide safe, reliable and effective transportation to and from schools for children with disabilities, thereby denying students equal access to their education and unnecessarily segregating them from their peers.

“The buses meant to help children with disabilities build their education and futures are instead perpetuating their exclusion. This is not just a matter of tardiness or inconvenience. It’s stealing children’s opportunities to learn, grow, and connect with their peers,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel of The Arc of the United States, a non-profit that works to promote and protect the civil and human rights of people with intellectual and developmental disabilities. “This systemic failure segregates students with disabilities from their peers and deprives them of equal access to education in violation of the law. When school buses become barriers themselves, we need to fight to ensure that no child is left stranded.”

According to the complaint, the OSSE Division of Transportation (OSSE DOT) has continually failed to provide consistent, safe and properly equipped transportation:

  • Buses routinely arrive very late to pick students up from their homes, or do not arrive at all, causing kids to miss an exorbitant number of school days. One 14-year-old student was late to school 90 times in the 2022 – 2023 school year.
  • Students are picked up early from school and miss critical instructional time or are left stranded at school without guaranteed transportation back home. “Because [my child] consistently arrived home late, he would miss critical therapies that were ordered by his doctor,” said Veronica Guerrero, plaintiff and mother of a 14-year-old student.
  • Students are forced to spend excessive time on the bus, causing physical and mental harm when they are unable to access food, medication, or toilets. As a result, one 13-year-old student with a rare chromosomal disorder has arrived home on multiple occasions with a soiled diaper.
  • Buses do not provide appropriate accommodations (including properly trained medical personnel) and equipment that children with disabilities need to ride the bus safely. One eight-year-old student’s medical conditions require that she ride the bus with a nurse present. On multiple occasions, and without notice to the family, the bus arrives without a nurse onboard to properly care for her.
  • Buses cannot be reliably tracked, and families have no way to find out where their children are located while riding a bus. One 11-year-old student was missing for four hours before school staff located him.

“DC was under court supervision after a lawsuit for the exact same problem until 2012. Although the District had shown they were moving in the right direction then, now we are moving back to where we once were despite years of parents and community leaders working together to attempt change through local advocacy efforts,” said Kathy Zeisel, Director of Special Legal Projects of the Children’s Law Center and counsel for the plaintiffs. “We can no longer plead and hope for change. We’re taking action to ensure DC children receive the education they deserve.”

“The District’s failure to provide safe, reliable, and appropriate transportation to students with disabilities is part of a trend where the District does not live up to its obligations to children and families,” said Kaitlin Banner, Deputy Legal Director of the Washington Lawyers’ Committee for Civil Rights and Urban Affairs and plaintiff counsel. “We hope this lawsuit creates the systemic changes we need for students to get to school safely and on time so they can learn.”

The plaintiffs include parents and guardians of children with a range of disabilities who require transportation accommodations and support to access their education. Together they seek to remedy this systemic failure, which violates federal and state law, including the Individuals with Disabilities in Education Act (IDEA), Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the District of Columbia Human Rights Act (DCHRA).

Under the IDEA, DC students with disabilities are entitled to a free appropriate public education (FAPE), which must include services and accommodations set forth in students’ individualized education plans (IEPs), including transportation. The ADA, Section 504, and the DCHRA require that students with disabilities have an equal opportunity to access their education and prohibit unnecessary segregation of students with disabilities.

“Children with disabilities are missing critical education and related services, all of which are necessary for them to receive a free appropriate public education guaranteed under the IDEA,” said Margaret Warner, a Partner at international law firm McDermott Will & Emery and counsel for the plaintiffs. “OSSE’s transportation system that provides these services continually fails to reasonably support DC students’ special education, as mandated by their IEPs.”

The case is Robertson v. District of Columbia and has been filed in the US District Court for the District of Columbia.

The plaintiffs are represented by Shira Wakschlag and Evan Monod of The Arc of the United States; Kathy Zeisel of DC’s Children’s Law Center; Kaitlin R. Banner, Margaret F. Hart, and Chelsea Sullivan of the Washington Lawyers’ Committee for Civil Rights and Urban Affairs; and Margaret H. Warner, Eugene I. Goldman, Theodore E. Alexander and Christopher M. Shoemaker of McDermott Will & Emery LLP.

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

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

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

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

A man with disabilities stands outside. He is holding hand written signs that read, "Disability Rights are Human Rights!!" and "Stop Discrimination Now." The U.S. Capitol building is in the background.

Spotlighting The Arc’s Changemakers: Mitch Routon, Secretary of The Arc’s Board of Directors

/in , /by The Arc

When Mitch was just ten days old, he had a stroke. Four years later, he began experiencing seizures, which would continue until he was 10 years old. The stroke and seizures mean that Mitch has trouble using both the left and right sides of his body—but it also inspires him to focus on his abilities rather than his disabilities.

Mitch has a friendly, laid-back demeanor, but he is also bold in speaking out on injustices against people with disabilities. Inspired by the advocacy and inquisitiveness of his father, Ralph, an independent journalist in the Colorado Springs area, Mitch learned to speak up for himself and others in uncomfortable situations—and quickly learned how important his voice was. He also developed his confidence and relationships as manager of his high school football team.

In 1993, Mitch’s dad served on The Arc Pikes Peak Region Board of Directors, one of the many boards in the disability community that Ralph took part in. It was through this connection that Mitch first became aware of The Arc locally—and so began Mitch’s own leadership with The Arc network.

After graduating from Manitou Springs High School, Mitch’s family moved to Florida. Five years later, Mitch headed back to Colorado on his own, ahead of his family’s impending move. His deep roots and connections carved his early adulthood—he worked at The Broadmoor World Arena, Safeway, Colorado College, The Arc Thrift Store, and other local establishments and coached the Manitou Springs High School football team.

In 2007, in a full circle moment, Mitch was invited to join the Board of Directors at The Arc Pikes Peak Region.Mitch Routon stands a podium on a stage, speaking to an audience at The Arc National Convention.

According to Wil Romero, The Arc Pikes Peak Region Executive Director, “Mitch is Mr. The Arc. He is everything you could want out of The Arc and a constant voice to hold us accountable. He keeps our mission and impact top of mind for staff and volunteers every day. He’s a staple in our program and a voice for how we should be supporting people with disabilities and the new demands and challenges being faces by people with disabilities today.”

In 2009, Mitch wanted to expand his advocacy to a new level. With the support of his local chapter, he successfully championed himself to become a member of The Arc of Colorado’s board of directors. According to Tonya Kelly, a past president of The Arc of Colorado, “Mitch is an inspiration to me and other board members and to advocates with IDD around the state. He brought his lived experience to The Arc of Colorado’s public policy efforts, testifying at the Capitol and calling legislators on the phone. His efforts inspired others to speak out as well. As president, I recruited Mitch to become Vice President, and he was the first person with IDD to serve on The Arc of Colorado’s Executive Committee, becoming President in 2021. He has shown the organization that those with IDD know no boundaries and deserve to be seen in leadership roles. Under his leadership, we became a stronger board and nonprofit. He also supported the organization as we hosted The Arc’s national convention and established an endowment for the organization.”

In 2018, Mitch was ready to take his advocacy to the national level and became a member of The Arc of the United States’ Board of Directors, and now serves as our Secretary.

“I wanted to join the board to get involved politically and ensure that people with disabilities have the same rights as everyone else. I think it is very important that we stay on top of disability rights. Every year, we see Congress say we don’t matter by trying to cut our health insurance or ignoring improvements to Social Security. It’s critical that we go to Capitol Hill and Washington, DC, and are heard by our members of Congress,” says Mitch.

In 2019, Mitch’s advocacy culminated in an opportunity to be heard directly from his member of Congress while attending one of The Arc’s keystone events—the Disability Policy Seminar. This event brings together advocates nationwide to learn about key policy priorities and then go to Capitol Hill to speak with their Members of Congress. Before the event, Mitch was a regular caller to his representatives’ offices around disability issues, but he sometimes did not feel heard. During the Hill visit, Mitch noticed his Member of Congress walking past him, intending to bypass The Arc’s group. Undeterred, Mitch stopped him to share his thoughts on disability issues and ensure he and other Coloradans with disabilities were heard.

For Mitch, support for The Arc is all about advocacy and people with disabilities.A man with disabilities stands outside. He is holding hand written signs that read, "Disability Rights are Human Rights!!" and "Stop Discrimination Now." The U.S. Capitol building is in the background.

“The Arc focuses on people with disabilities and ensures they have what they want and need. Our bottom line is we care about people. I serve on the board and make sure the organizations are running well so that the people with disabilities we serve are being taken care of,” says Mitch.

For the past 30 years and throughout his life, Mitch has worked tirelessly to advocate for himself and others—and hopes that other people with disabilities will join him as leaders of The Arc.

“I hope there’s more people with disabilities who want to be a president of the board, vice president, secretary, or treasurer. I would love to see more people with disabilities in a leadership role and connecting with their local, state, and national chapters of The Arc….Supporting The Arc is the right thing to do because, at the end of the day, The Arc is here to help people.”