Four adult sisters standing next to each other and smiling

Spotlighting The Arc’s Changemakers: Laura Kennedy, President of the Board of Directors

When Julia Kennedy was born in 1982, The Arc had already been laying the groundwork for her to thrive.

Laura and Hal Kennedy were parents to two daughters, ages 3 and 4, when Julia arrived. Early on in her infancy, they knew that Julia was experiencing developmental delays. She eventually was diagnosed with profound intellectual disability and autism. Working with their pediatrician, the Kennedys sought out the help they would need to support Julia at every step, and they found their local chapter of The Arc, AHRC New York City.

A young girl is in a classroom setting. She's seated in front of a table; there are cups on the table in many different colors.Julia started attending a pre-school run by United Cerebral Palsy, where they received a flyer for a family event hosted by AHRC New York City. The whole family spent a Saturday afternoon connecting with other parents, siblings, and children with disabilities.

Laura shared: “It was like walking into the extended family that we all needed. It was the beginning of our now 40-year relationship with this incredible community of people.”

As Julia grew, and the Kennedys welcomed a fourth daughter, they began relying on The Arc for help with Julia’s schooling.

“I was learning about Julia’s rights and what environment could help her thrive. The team at AHRC New York City assured me that there was a continuum of services, and at the top, The Arc’s national office had gurus in special education policy fighting for systemic change. And before Julia was born, they had paved the way,” said Laura.

She added: “Very little existed 10 years before Julia arrived on the scene. I think that’s one of the most important things for people to keep in mind—The Arc’s national advocacy impacts people who are young and old, those who are not even born yet.”

The Kennedys were struggling to balance their four busy daughters’ needs. AHRC New York City helped them through respite care. Julia was very uncomfortable traveling, and so as the family took short trips, they gradually learned to trust other caregivers. Julia had invaluable experiences at overnight camp and staying at a respite home for a night or weekend, and Laura and Hal learned how to balance the risk and the opportunity.

“We needed that support to give time and attention to each child. And Julia needed to have different experiences in her life to grow. Between AHRC New York City’s programs, the wonderful staff we’ve worked with over the years, and the families we met through the chapter, we all benefited,” said Laura.

Soon, Laura started taking on leadership roles in her local and state chapters. In 1993, she joined the Board of Directors of AHRC New York City, representing her home borough of Staten Island. Laura was focused on helping the chapter be the go-to organization for families, supporting those recently receiving a disability diagnosis, and making the kind of connections that the Kennedy family had because of The Arc.

“In the mid-1990s, you still had some pediatricians telling families when they received a diagnosis, ‘Don’t take this on, for the sake of the rest of your family.’ Well, The Arc was there for families to show them that there was another way, and my family was living proof of what was possible,” said Laura.

“When I first learned about The Arc, I was drawn to the fact that family members make up the majority of the Board. That has a positive influence on how our chapters impact lives. There are other disability organizations that aren’t structured with that in mind, and so we are unique in our culture.”

As President of AHRC New York City’s Board, Laura worked with statewide advocates over two years to get the Governor to help families in disputes over their child’s special education services. They were successful in reversing the “burden of proof” in special education impartial hearings to place the burden on the school district, rather than on the parents.

In 2004, Laura stepped up to a state-wide position on the Board of Governors of The Arc of New York, which was then called NYSARC. She spearheaded a successful membership campaign that doubled the membership of the organization. Laura started attending The Arc’s dynamic national events—the Disability Policy Seminar, where she lobbied in Congress, and the National Convention, where she made lifelong connections. While serving as NYSARC’s president, in 2017, Laura successfully led the organization to fully brand with The Arc of the US.

Today, Julia is 41 years old, lives 10 minutes from her parents, and enjoys life in the community. She likes her outings for shopping and seeing shows, volunteers with Meals on Wheels, and continuously works on her life skills. Meanwhile, Laura hasn’t stopped leading. On Staten Island, in New York City, and in Albany, Laura stays busy by chairing AHRC New York City’s advocacy committee. She is currently the chapter’s longest serving board member. And as our national Board President, Laura is keenly aware of those that will be impacted by The Arc in the coming years, focusing on the future power of the national federation.

“If not us, who? The Arc is the go-to organization for people across the country. So much of what was there for Julia existed because of The Arc—nationally and locally. We owe it to the next generation to be doing this work, all the time. What The Arc does is people work. It’s the best way to spend my time,” shared Laura. “We have much more work to do!”

The Arc logo

5 Disability Stories Journalists Should Be Covering Right Now (2023)

Are you a journalist looking for impactful stories that demand greater coverage? If they aren’t already, disability issues should be part of your reporting. One in 4 U.S. adults and 1 in 6 people worldwide report having a disability, statistics that are likely underreported, yet this population remains underrepresented in media. Increased coverage is crucial for social progress. When news stories ignore the disability perspective, they perpetuate exclusion and misunderstanding. By spotlighting disability voices and angles, journalism can help dismantle stigma, drive policy reform, and push society closer to inclusion and equality.

The Arc is here for you. We’ve been driving positive change for individuals with intellectual and developmental disabilities (IDD) for almost 75 years. To do our part in media representation, we’re launching this new blog where we’re bringing you timely and often overlooked stories.

Here are 5 urgent angles you should report on in Winter 2023 and Spring 2024:

1. The Home and Community-Based Services Funding Crisis

Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services make that possible for millions of people with disabilities and older adults, supporting daily needs such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Unfortunately, chronic underfunding of HCBS has created a catastrophe for people who need it most, resulting in a national shortage of direct care workers and years-long wait lists for access to services. This access crisis is now exacerbated by the end of Medicaid continuous enrollment this year, which has led to states kicking more than 10 million people off Medicaid. Without access to basic support for daily living, people with disabilities and older adults are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. With dwindling access to HCBS, the burden is increasingly falling on families to step in as caregivers, leading to financial hardship, lost jobs, social isolation, and mental and physical exhaustion.

Powerful journalism exposing the impact of this crisis can spur public pressure and policy reform, particularly in getting emergency federal funding in the end-of-year fiscal package. Storytelling focused on those confined against their will, disabled people who lost their HCBS access due to the Medicaid unwinding, or families under strain due to lack of accessible care can shine a light on this overlooked issue.

2. Disability-Based Discrimination in Health Care

People with disabilities face a multitude of barriers in accessing our health care system. One pervasive and largely overlooked issue is widespread disability-based discrimination in health care, and its dire implications. The issue is complex and multifaceted, but some of the barriers include inaccessible equipment and physical environments, a lack of training and time in caring for people with disabilities, and explicit and implicit biases including assumptions about quality of life and worthiness. This leads to people with disabilities being denied life-saving treatments or even routine preventative healthcare at much higher rates. Ableism in healthcare directly limits lifespans and causes avoidable suffering. Black and brown people with disabilities face particularly dangerous disparities.

The U.S. Department of Health and Human Services (HHS) is proposing new regulations that would prohibit medical providers from discriminating against people with disabilities and set new standards for accessibility at the doctor’s office. Section 504 of the Rehabilitation Act of 1973 is a landmark civil rights law that prohibits discrimination on the basis of disability in programs and activities that are funded by the Federal government. Unfortunately, it hasn’t been updated for 50 years ago. The proposed updated rules are necessary to ensure disabled peoples’ lives are not valued less than others and that health care is accessible to all.

Increased journalism focused on exposing discrimination and disregard for disabled lives is vital. Storytelling and data-driven reporting can raise public awareness and pressure health systems to reform. We must make medical providers see all patients as equally deserving of quality treatment.

3. Overcriminalization of People With Disabilities

People with disabilities, especially people of color, are dramatically overrepresented in the criminal justice system. Yet media coverage often fails to capture their experiences. According to the Bureau of Justice Statistics, people with disabilities face much higher arrest and incarceration rates – for example, Black youth with disabilities are 17% more likely to be arrested than their non-disabled peers. And studies show that up to 50% of people shot and killed by police have a disability. Despite the prevalence of this issue, many officers lack training on interacting with and supporting this high-risk population. Their failure to accurately perceive disabilities often escalates encounters, increasing trauma, violence, and unjust stigma. There are solutions, like The Arc’s National Center on Criminal Justice and Disability’s (NCCJD) efforts in crisis prevention and response teams led by the disability community. Similar initiatives recognize that reform requires centering the voices of those impacted.

We urge you to investigate the entanglement of people with disabilities in the justice system and spotlight solutions. Share stories that humanize, contextualize, and advance change. Your reporting has immense power to create a more just, inclusive society.

4. Lack of Employment Opportunities

Diversity in our workforce strengthens cultures and bottom lines, but one important group continues to be overlooked: people with disabilities. Meaningful employment not only provides vital income, but it also fosters independence, dignity, and respect. Yet people with disabilities, particularly people with IDD, are extremely underrepresented in the workforce, despite their desire to work. People with disabilities have long faced exclusion and seclusion, and that issue persists today. Barriers include limited job opportunities, misconceptions about accommodations, and overt discrimination. They often leave school with little to no community-based vocational experience or planning for transitioning from school to work. When employed, few people with IDD have opportunities to advance, explore new possibilities, or, in their later years, retire. Unrealistically low limits on assets and earnings add to a fear of losing vital public benefits if they work too many hours or earn too much. Lack of other services — like transportation or accommodations — can also hinder success.

Many people with IDD succeed in roles alongside people without disabilities. Data proves that businesses employing people with disabilities outperform businesses that do not. In addition, people with disabilities, on average, stay in their jobs longer than their counterparts without disabilities. Journalists can explore the barriers to employment, workplace discrimination, myths about abilities and accommodations, and inclusive hiring practices. Your work can help break down barriers, reduce discrimination, and create a society where everyone has access to meaningful employment.

5. Exclusion From Sexual Education

Everyone deserves access to accurate, unbiased, and inclusive sex and relationship education. Yet a shocking majority of people with IDD – up to 84% – do not receive sexual education in school systems and other settings. At the same time, some individuals may engage in sexual activity as a result of poor options, manipulation, loneliness, or physical force rather than as an expression of their sexuality. This leads to another horrifying statistic: people with IDD are sexually assaulted and/or raped at a rate seven times higher than those without disabilities. The lack of access to sexual education varies widely by state and only five states require sex ed to be accessible to people with disabilities. For decades, people with IDD have been thought to be asexual, having no need for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with IDD in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. Another sensitive dynamic is the parent’s understanding and acceptance that sex education is appropriate and important for their child with a disability. Every person has the right to exercise choices regarding sexual expression and social relationships.

Journalists can play an important role in advocating for equitable access to comprehensive sex education programs, shedding light on the imperative of empowering people with IDD to make informed decisions about their sexual health and relationships.

Considering how large and diverse the disabled population is, we encourage you to include their viewpoints in all of your stories, whether they relate to disability or not! We also hope you will investigate these topics in your own communities. Please contact us at 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!

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.

Amazon Announces Donation Program With The Arc to Advance Connectivity and Independence for People With Disabilities

Amazon Will Donate 5,000 Devices, Provide Monetary Support, and Engage IDD Community for Ongoing Feedback

Washington, DC – Technology can be life-changing, but people with intellectual and developmental disabilities (IDD) disproportionately face barriers to access and adoption. Amazon and The Arc have announced a landmark community program that will expand technology access and empower greater independence for thousands of people with IDD.

Amazon is donating 5,000 Echo Show and Fire Tablet devices to nearly 600 chapters of The Arc across the United States. The Arc, along with TechSoup, the leading nonprofit network facilitating distribution and adoption of technology solutions, will implement the national donation program to its chapters. The donation will enable people with IDD to leverage technology to improve daily living. The organizations will also build upon their existing work of giving people with IDD the opportunity to provide product feedback on Amazon devices.

“This collaboration is about more than donating devices – it’s about empowering people with disabilities to live life on their own terms,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Autonomy, entertainment, education, inclusion – these are essentials of a meaningful life, and they continue to be out of reach for many people with IDD. Our community uses technology for their daily needs in inventive ways, and this program will give even more people greater control over everyday moments. Together, we can help close the digital divide and help people with IDD fully participate in society in ways many of us take for granted.”

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.“The disability community is full of untapped potential just waiting to be unleashed,” said Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State. “In today’s digital world, innovative technology is the key to unlocking new and exciting opportunities for individuals living with disabilities to achieve their goals. I’m grateful for the efforts of Amazon and The Arc to further empower every person with a disability to live a more full and independent life.”

This partnership will help people like:

  • Grace, a tween with Down syndrome, autism, ADD, hearing loss, and visual impairment who uses her device to get ready in the morning, play her favorite songs, help with her academic work, and notify her parents when she needs help.
  • Scott, an adult with IDD and a hearing impairment who uses his device to hear the local weather, dance, and learn new things.
  • Jonathan, an adult with an intellectual disability and bipolar disorder who uses his device to listen to music, set an alarm for morning wake-up, stay organized, and be more in touch with his sister.

“We’re excited to work with The Arc to support and empower people with disabilities” said Leila Rouhi, Vice President of Trust for Devices and Services at Amazon. “It is energizing to see how our devices meaningfully improve the lives of customers like Grace, Scott, and Jonathan, and we will continue working to make the world more accessible through technology for people with IDD.”

The community program kicked off this week at a launch event with Congresswoman Cathy McMorris Rodgers held at The Arc of Spokane on November 20, 2023.


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, and over 80 million family members who love and care for them. Visit 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 Amazon: Amazon is guided by four principles: customer obsession rather than competitor focus, passion for invention, commitment to operational excellence, and long-term thinking. Amazon strives to be Earth’s Most Customer-Centric Company, Earth’s Best Employer, and Earth’s Safest Place to Work. Customer reviews, 1-Click shopping, personalized recommendations, Prime, Fulfillment by Amazon, AWS, Kindle Direct Publishing, Kindle, Career Choice, Fire tablets, Fire TV, Amazon Echo, Alexa, Just Walk Out technology, Amazon Studios, and The Climate Pledge are some of the things pioneered by Amazon. For more information, visit and follow @AmazonNews.

Headshot of Katherine Neas

The Arc of the United States Names Katherine Neas as Its Next CEO

Washington, DC – The Arc of the United States, the oldest and largest nonprofit serving people with intellectual and developmental disabilities (IDD), today named Katherine (Katy) Neas as its new CEO. Katy brings more than 35 years of experience in disability policy and public and nonprofit leadership to the role. Her tenure with The Arc of the US will begin in January 2024.

Headshot of Katherine NeasKaty is a visionary leader who has devoted her career to disability rights, and she has deep connections in the field. She joins The Arc from the U.S. Department of Education, where she served as Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services. Prior to that role, she was Executive Vice President of Public Affairs for the American Physical Therapy Association (APTA) and for Easterseals. She is widely regarded for her bipartisan and collaborative work, earning her roles including Past Chair of the Consortium for Constituents with Disabilities (CCD). Earlier in her career, Katy served as Legislative Assistant to Senator Tom Harkin and the U.S. Senate Subcommittee on Disability Policy, where she worked on landmark legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University.

“We are very excited to welcome Katy Neas as the next CEO of The Arc,” said Laura Kennedy, Board President for The Arc of the US. “Her more than 35 years of working as a highly respected advocate for people with disabilities will continue to move The Arc forward with its important work. She is well known as an ally and thought leader by government officials and legislators, nonprofit providers, self-advocates, parents, and executive staff across the country. She is the right person for our organization as we continue to work hard to help every person with IDD be heard and have the opportunities to thrive.”

“Stepping into this role as CEO of The Arc feels like coming home,” said Katy Neas. “Throughout my career, I’ve been lucky to work arm-in-arm with fierce advocates and caring providers to drive progress. That open collaboration and trust is what makes The Arc so special – never losing sight that we do this WITH people with disabilities, not just FOR them. I’m in awe of The Arc’s profound legacy, from pioneering special education access to spearheading community living. Now, I’m honored to continue that legacy into the future, but we won’t rest on past wins. Together with families, self-advocates, and partners, we’ll build an even stronger organization to meet the challenges ahead. I can’t wait to listen and learn from every corner of this community and lead inclusively into the next era of success. The Arc’s brightest days lie ahead.”

“The Arc’s Board of Directors made a very wise choice in selecting Katy,” said Paul Marchand, a longtime and influential disability policy champion who served The Arc for 38 years. “I’ve worked closely with her for more than 30 years, and her disability policy knowledge is outstanding. She is a leader in all respects – smart, loyal, a good listener, and a coalition builder. Katy has held high level positions in nonprofits, in a huge federal agency, and she cut her teeth on Capitol Hill. She’s done it all, and The Arc couldn’t have found anyone better to lead into the future.”

As CEO of The Arc of the United States, Katy will be responsible for leading the nearly 75-year-old organization and its Washington, DC-based national office for 578 chapters across the United States. She steps into the role at a pivotal moment for disability rights, as issues like the caregiving crises, ongoing exclusion from schools and workplaces, and threat of losing hard-won civil rights have made The Arc’s mission more crucial than ever. Katy will build upon The Arc’s legacy and thought leadership among disability and civil rights groups while advancing its mission to ensure people with IDD can lead full, meaningful, and self-directed lives.

Katy was selected following an extensive national search led by Heidrick & Struggles and a Search Committee comprised of staff and Board members from The Arc, chapter executives, community partners, and a self-advocate. Heidrick & Struggles conducted town halls, surveys, and one-on-one meetings with key stakeholders, including The Arc’s National Council of Self-Advocates and chapter executives.


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, and over 80 million family members who love and care for them. Visit 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.

The US Capitol in Washington, DC

Disability Advocates Urge Support for Emergency Funding Bill to Address Medicaid Care Crisis

Washington, DC – Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services makes that possible for millions of people with disabilities and older adults, yet chronic underfunding is forcing them into institutions and putting families in crisis. Today, the Home and Community-Based Services (HCBS) Relief Act was introduced by Senator Bob Casey (D-PA), a bill that would provide emergency funding to state Medicaid programs and have a profound impact on disabled and older Americans. The Arc applauds this pressing bill and urges lawmakers to pledge their support for independence and inclusion.

“Marginalized for far too long and facing catastrophic shortages of direct care workers, people with disabilities and their families are desperate for help,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Without access to basic support for daily living, disabled people are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. This is about the basic human right to live in the community. It’s time that we show people with disabilities that their lives not only matter, but that they are valued members of our society. The HCBS Relief Act would support and strengthen their daily lives, while also improving health, economic stability, and quality of life for their families and direct care workers.”

Millions of people rely on HCBS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. The HCBS Relief Act would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers, and meet the long-term support and service needs of people with disabilities and older adults. The HCBS Access Act, which was introduced in March 2023, would make a transformational impact on the care crisis, but emergency relief is needed right now, which this bill would provide.

“My disability means I need assistance getting around and sometimes with communicating,” said Steve Grammer, a Disabled Self-Advocate living in Virginia. “When I was 22, my mom fell ill and I was placed in a nursing home. I got to see her just once before she passed away. After 9 long years, my dream of independence came true. With the help of in-home caregivers, I have my own apartment and I can choose what I want to eat, where I want to go, and what I want to do. I no longer worry about my food being served cold or my medications being administered late. I can stay out late with friends while we listen to our favorite bands. I have freedom—and a life like yours. I’m living proof that people who have been barricaded away can live on their own and thrive while contributing to their communities.”

“I started out in an institution,” said Veronica Ayala, a Disabled Self-Advocate living in Texas. “I was there for 18 really long months, and I was a child, so that was really traumatic. For 18 months, I didn’t have my mother to put me to bed, tell me a story, give me a bath. There was no love or attention given. Thankfully my mother realized that she could do it on her own with home and community-based services. With the right supports, anyone with a disability can live in their community. Anyone with a disability can succeed.”

Recent research from The Arc and the University of Minnesota shows that 35% of people with intellectual and developmental disabilities (IDD) are trapped on waiting lists for supports and services they desperately need, 19% of which have been waiting for more than ten years. This doesn’t just impact their lives – it’s having a ripple effect on their families and our economy. Nine in ten family caregivers reported that their careers have been negatively affected due to a lack of supports, and 66% have had to leave the workforce entirely. This is ultimately leaving families significantly stressed and financially strained.


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. Visit or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A man with a disability holds a sign up that says "Justice."

NCCJD Celebrates 10 Years of Disability and Criminal Justice Advocacy

By Leigh Anne McKingsley, Senior Director, Disability & Justice Initiatives

I had just completed my master’s in social work when The Arc hired me in 1994 to oversee a national project educating criminal justice professionals about safe interactions with people with intellectual and developmental disabilities (IDD). That initial one-year project led to my life’s work of exposing the injustices facing people with IDD in the criminal justice system, both in the US and globally.

In 1997, I presented a paper at a symposium hosted by what is now known as The President’s Committee for People with Intellectual Disabilities. The paper laid out key issues and recommendations, including the need for a national center or clearinghouse dedicated to people with IDD in the criminal justice system. This dream was realized in the fall of 2013 when The Arc created the National Center on Criminal Justice and Disability® (NCCJD) supported by funding from the Bureau of Justice Assistance (BJA).

The Arc’s NCCJD is the first national center focused on justice-involved people with IDD. We continue to be the preeminent center in the US that advocates with and for victims, witnesses, suspects, defendants, and incarcerated persons with IDD who are involved at all stages of the criminal justice process. NCCJD is a bridge between the disability and criminal justice communities that pursues safety, fairness, and justice for people with IDD, especially those with hidden disabilities and in marginalized communities.

As we celebrate 10 years of advocacy, we reflect on where we were a decade ago, where we are today, and our goals for the future.

The Early Years

A group of people dressed in business attire poses for a photo. In the front row, there are three people in wheelchairs and one holding onto a walker.

During the mid-90s, few attorneys, judges, and court personnel were versed in the requirements of Title II of the ADA. Typical law enforcement training was often dated, and IDD was only briefly mentioned in training on mental health or crisis intervention. Seeing a need, we created the first law enforcement training on IDD in 1998 for chapters of The Arc and other advocates.

In 2013, the need for this type of training gained national attention after the death of Ethan Saylor. Ethan, a 26-year-old man with Down syndrome, died from a fractured larynx when he was placed in a chokehold by an off-duty police officer for not paying for a second showing of a movie.

Around that time, The Arc received funding from BJA to launch NCCJD and develop Pathways to Justice (Pathways), a unique, comprehensive, community-based program that seeks to improve access to justice for people with IDD. The funding also allowed NCCJD to provide no-cost Pathways training to communities across the US.

James Meadours, a man with a disability, is standing next two three police officers at an event. They are all smiling.

Understanding that training in and of itself can never address root issues, Pathways includes forming a Disability Response Team (DRT) that is created before the training occurs and is there long after the training ends. DRTs are multi-disciplinary teams made up of local law enforcement, legal professionals, victim service professionals, persons with IDD, and other IDD professionals or advocates. DRTs proactively build collaborative responses and reach agreed-upon goals to support the needs of people with IDD in the community who are justice-involved.

NCCJD’s other work has included hosting webinars and developing publications that provide valuable insight into issues that are not being addressed elsewhere. These groundbreaking white papers, handouts, and one-pagers touch upon critical areas of the criminal justice system, including tips for law enforcement and attorneys when serving people with IDD, know-your-rights information, resources for victims of crime, and materials on competency to stand trial.

Continuing the Movement

A large group of people with and without disabilities stand on stage at a conference.Today, Pathways to Justice remains one of the few IDD-specific programs in the US. It has reached over 2,000 stakeholders in over 12 states and has created Disability Response Teams around the country, creating sustainable change.

Through NCCJD’s information and referral services, we support victims and suspects/defendants with IDD and professionals in need of information, support, or training. We also created an online Community of Practice for The Arc’s chapter network to discuss issues in their community and hear from people with IDD and experts on timely issues, including funding opportunities.

The national center has even expanded internationally. In 2015, NCCJD began collaborating with leading experts worldwide on IDD and criminal justice. Our work with the Access to Justice International Hub involves over 20 countries. NCCJD staff learn from partners abroad, bring innovative ideas to the US, and share best practices. We have participated in several international webinars and presented at in-person conferences in England, Austria, and South Korea.

Some of NCCJD’s other projects and activities include:

On the Horizon

A man with a disability holds a sign up that says "Justice."NCCJD’s programmatic work must evolve and remain innovative as we seek to reform a criminal justice system that too often remains unaware of the unique needs of the IDD community. We are revisiting our strategic plan and the Pathways program to include the most up-to-date research, best practices in curriculum delivery, and effective ways to incorporate a lens of intersectionality by grounding the work in a disability justice framework. The updated Pathways will include a more robust technical assistance program focused on helping DRTs set achievable goals to begin a community’s path on sustainable change.

Our other priorities include:

  • Continuing to provide nationwide information, referral, and support to people with IDD, families, advocates, and criminal justice stakeholders.
  • Creating online tools, publications, and resources on in-demand topics.
  • Providing evidence-based training to criminal justice professionals and expanding community-based alternatives through DRTs.
  • Ensuring people with IDD are included in criminal justice related research.
  • Increasing collaborations with partners, especially with regard to intersectional work.
  • Ensuring meaningful criminal justice reform that prioritizes the ideas, needs, and voices of people with IDD through state and federal legislation.
  • Identifying and supporting people with IDD to lead reform efforts.
  • Advocating with people with IDD to become paid peer support specialists within criminal justice, including as co-trainers, in co-response, and other roles.
  • Advocating for equal access to sex education for students with IDD to decrease unsafe sexual practices and increase healthy sexual practices.
  • Increasing training for criminal justice professionals on the topic of sexual violence within the IDD community, especially sex crime investigators.

NCCJD’s rallying cry over the past decade can be summed up in one powerful word: inclusion. All people with IDD must be included in society in a way that is fair, just, and safe. NCCJD commits to continuing the movement for inclusion by breaking down barriers to inclusion and building pathways to justice for people with IDD and their families.

After 27 years working at the intersection of disability and criminal justice, I’ve learned that change doesn’t happen overnight. But small victories can build momentum and lead to substantial wins. I have seen wins through increased funding for research, supporting people with IDD to become trainers or co-trainers in national training for first responders, creating alternative response to crisis by prioritizing community-based responses, and building new collaborations and strengthening a unified solidarity internationally to further the movement in the US and beyond.

Together, we must believe and envision the world we hope to create with and for people with IDD, believing that both true inclusion and justice can and must prevail.

A young Black woman with long curly hair holds a framed picture of a young girl. Her mother stands next to her.

Leah Should Have Never Been Restrained and Secluded

Texas mom and advocate Jeanna is no stranger to the disability field. She has three children, two of whom have disabilities. She is also a professional advocate who helps families navigate Texas’ education and service systems.

In January 2020, when Jeanna learned that her 14-year-old daughter Leah was having major behavioral issues at school, she knew what steps to take. Leah is autistic and nonspeaking and has an intellectual disability. Jeanna began observing Leah’s behavior more closely, including her nonverbal communication. She recognized that Leah was engaging in self-injurious behaviors and appeared resistant to going to school. Jeanna reached out to the school to share her observations and seek a cause, but her concerns were dismissed.

By March 2020, the situation worsened. Jeanna was being called to pick up Leah three times a week, and Jeanna learned that Leah had been placed into standing restraints twice. When the worsening COVID-19 pandemic shut down Leah’s school, Jeanna took the time with Leah at home to figure out what was causing such a drastic change in her daughter’s behavior and willingness to go to school.

Jeanna knew that there was a camera in Leah’s classroom, so she sent several requests to the school for the footage. Her first two requests were denied. After learning that Leah’s teachers had been fired, Jeanna requested the video again and finally received 30 minutes of edited video from the days Leah had been restrained.

One incident showed Leah being restrained because she was trying to access a sensory box to help her calm down. During this restraint, “[Leah] was put face down on the ground with her arms on her back while two adults held her down. Her legs started lifting like she was having a hard time breathing.” Meanwhile, her educators and specialists spewed inflammatory statements and profanities toward her.

The second restraint occurred after Leah got upset at another student for using her crayons. Leah was restrained and then put into the classroom bathroom. The lights were shut off, and the door was closed. It wasn’t clear to Jeanna how long Leah was secluded in the bathroom.

Watching these incidents devastated Jeanna, who had not been informed that Leah had been put in a prone restraint or secluded.

“I was upset that I never had the opportunity to know what she was going through and give her the comfort and support she needed. I was also devastated because I had worked with Leah’s administrators for years. When I asked why I was not told the details in the months after the incident, I was informed by Leah’s special education coordinator that they didn’t tell me because the George Floyd incident had happened, and they knew I must be going through a lot with that. It made me suspect my family’s race was a part of how we were treated during and after the incident. It makes me cringe, but what else is there to think when this comment is made as a response?”

In 2022, Leah returned to the classroom, but the transition has been challenging. Jeanna advocated for Leah’s new teachers to implement strategies that will help Leah understand that she can be safe at school. Jeanna is thankful that Leah’s current educational team has treated her with respect and kindness, but she is concerned for other students like Leah, as the educators who abused her daughter are still teaching in similar settings in neighboring school districts.

A young Black woman with long curly hair holds a framed picture of a young girl. Her mother stands next to her.

Jeanna (right) and her oldest daughter, Brianna (left), who is holding a photo of Leah.

Jeanna is also working with Leah to help her advocate for herself. “As a parent of a nonspeaking child, we are encouraged to teach our children to comply with what other people want. There is no protest when people treat them badly because they haven’t learned how. She’s going to be 17 years old this year, and only now is she learning how to say no.”

Today, Jeanna shares her story in hopes that other students don’t have to go through similar experiences. She encourages parents to listen and pay attention to their children’s words and actions. “We know [our kids] the best,” she says. “When they start showing behaviors that are not typical for them, we need to listen to them. I still regret, to this day, not paying more attention to Leah’s communication.”

Jeanna and her oldest daughter, Brianna, founded Project LEAH, a family advocacy group in Texas. The group brings families together to advocate so that no one else must deal with what their family has. They credit The Arc of Texas for standing by their side and supporting their group’s growth and advocacy.

How You Can Help

The bipartisan Keeping All Students Safe Act establishes safety standards and provides better training and oversight to ensure the safety of students and staff and to prevent abuse and death. Sign our petition to support this important bill. You can also reach out to your state chapter of The Arc to support state-level education advocacy.

The US Capitol in Washington, DC

How the Government Shutdown Could Impact People With Disabilities

If Congress fails to reach a deal to fund the federal government by September 30, the government will shut down, which means federal agencies will cease non-essential operations until a deal is reached. We want you to be fully informed about how the looming government shutdown could impact you!

Many people with disabilities rely on a range of public programs, such as Social Security, Medicaid, Medicare, Supplemental Nutritional Assistance Programs (SNAP), and others that support their daily needs, health, and independence. They also benefit from programs that provide housing assistance, job training, special education, childcare, and developmental disability programs for supports and services. What’s more, many federal agencies enforce critical laws against disability discrimination, including the Americans with Disabilities Act.

Here’s what we want you to know. Social Security and Supplemental Security Income (SSI) payments will continue during a shutdown. While these critical needs will continue to be met, a prolonged shutdown could exacerbate ongoing customer service issues created by the underfunding of the Social Security Administration (SSA). Many people with disabilities need SSA’s support in navigating benefits and already endure long wait times for disability determinations.

Many of the other programs that people with disabilities rely on are administered by state governments, with critical oversight and administration conducted by the federal government. Currently, all 90 million Medicaid beneficiaries must go through a renewal process following the end of the COVID-19 public health emergency. According to the Kaiser Family Foundation, nearly three-quarters of all people losing Medicaid had their coverage terminated for procedural reasons. CMS recently took the major step of making 30 states pause their renewal process for failing to comply with federal law. The lack of this critical federal oversight could result in many more people with disabilities unjustly losing their Medicaid benefits. Make sure you don’t lose yours.

There is also considerable concern about the impact of the childcare funding crisis resulting in tens of thousands of childcare centers potentially closing and millions of kids potentially losing this critical avenue for early development. This is happening because of the expiration of pandemic emergency relief funds that were used to support struggling daycare centers. Families already experience significant hardship finding childcare options for kids with disabilities, which could worsen without action by Congress.

Looking to the future, a government shutdown raises the potential for additional cuts to government funding in order to reach a deal to reopen. The agreement to stop a default in May 2023 already set new caps on spending for FY 2024 and 2025. Those agreed-upon caps undermine critical programs and services. The Social Security Administration, for example, is facing a customer service crisis and programs like the Individuals with Disabilities Education Act (IDEA), which ensures students with a disability are given a free appropriate public education, have never been fully funded.

The reality is that funding for programs for people with disabilities needs to be significantly expanded, not cut. A government shutdown creates the political environment for cuts, going in the wrong direction for people with disabilities and their families. If that happens, you can expect that The Arc will use its power and influence to fight back.

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.

How and Why to Celebrate National Disability Employment Awareness Month: October 2023

National Disability Employment Awareness Month - Advancing Access & Equity - Celebrating 50 years of the Rehabilitation Act of 1973Each October, during National Disability Employment Awareness Month (NDEAM), we celebrate the many contributions and achievements of employees with disabilities.

Employees with disabilities are dependable, loyal, and eager to learn—and research shows that their inclusion in the workforce improves overall employee retention rate and morale. However, people with disabilities have been marginalized and misunderstood for generations, and 85% of people with intellectual and developmental disabilities (IDD) remain unemployed.

How to Celebrate NDEAM in October (And Year-Round)

There are many ways to observe and celebrate National Disability Employment Awareness Month. Here are a few ideas.

Learn about the value of people with disabilities in the workforce.

Share your disability employment story and help someone share theirs.

The Arc has collected disability employment success stories from both employees and employers. Read them and share them with your networks. Let’s help more people understand the value that people with disabilities bring to the workforce.

If you have a friend, family member, coworker, or neighbor with a disability who is employed, encourage them to share their story. We want as many people to join the conversation as possible! Share your stories on social media using #NDEAM or even reach out to your local news. Be sure to join The Arc’s celebration by following us on Facebook, Instagram, X (formerly Twitter), and LinkedIn and engaging with stories from the people we serve.

Look at your company’s disability hiring practices.

  • If you’re not actively hiring people with disabilities, here’s a tip sheet to help you get started.
  • Review your company’s policies and processes to make sure they are inclusive and comply with the Americans with Disabilities Act.
  • Train managers and supervisors to make sure they understand their role in fostering an inclusive workplace.
  • Post about NDEAM in your newsletter, on your website, or on social media to help increase awareness.
  • Participate in Disability Mentoring Day, which takes place on the third Wednesday in October.

Donate to organizations that actively promote workforce inclusion for people with disabilities.

The Arc has been working for the inclusion of people with intellectual and developmental disabilities in all aspects of life. Our nearly 600 chapters across the country have been connecting companies and people with IDD to make successful employment a reality. Support our work!

Is There a Theme for NDEAM in 2023?

Each year, the U.S. Department of Labor’s Office of Disability Employment Policy selects a theme for National Disability Employment Awareness Month. The 2023 NDEAM theme is “Advancing Access and Equity” to honor the 50th anniversary of the passage of the Rehabilitation Act of 1973.

Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.

Tayone’s Struggle to Find Employers Who See Past His Disability

Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.Tayone Miller is a full-time Computer Analyst with Charles County Public Schools (CCPS), bringing nearly a decade of experience in developing, managing, and improving information technology. It’s a career he’s always dreamed of. “Technology helps people throughout their lives,” he shares. “I wanted a career that would be everlasting, and Computer Information Systems (CIS) was the right fit for me.”

Tayone was also born with cerebral palsy, which has caused him to have trouble with speech. He brings immense value to his workplace, but he has experienced countless barriers in getting to where he is. In school, he struggled with “people not seeing past my disability, creating stereotypes, and getting various instructional strategies to help me in classes.” After he graduated from Florida Memorial University, where he was recognized as Student of the Year in 2012, Tayone says, “Many of the jobs I have applied for require at least three rounds of interviews. I always had difficulties passing the first stage due to my speech impairment. After having interviews with many prospective employers, I could tell by their responses and body language they were unwilling to hire a person with disabilities. [Because of this] I have not directly disclosed my disability on applications.”

He’s not alone. Research shows that a shockingly low number of employees disclose their disability to their employer, likely for fear of discrimination. It took many rejections, but Tayone found an employer who saw him for his skills, not his disability. “I started working at CCPS as an intern, then I was promoted to a temporary computer analyst, and now I am a full-time computer analyst. I now manage various interns.” Even though he deserves his job and excels at it, he has faced microaggressions, or subtle discrimination, in the workplace. As he notes, “In the past, my co-workers displayed eye-rolling when I spoke or turned away from or avoided me altogether.” But Tayone ignored them because “I did not want to give them control over me. Disability representation in the workplace means that people with disabilities are seen, heard, and respected in their jobs. Furthermore, it promotes inclusion for all. My employer is able to see my strengths and capitalize off of my positive attributes. In the next 5 years, I see myself still working at CCPS as a Senior Computer Analyst.”

He now uses his experience to help those who will come after him. “As a person with a disability, I am keenly aware of the challenges students with disabilities may face when obtaining their education. I am able to advocate for the adequate equipment they need to be successful. Some advice I would give to people with disabilities who are struggling to pursue a career is to be persistent. Never give up on yourself. Build relationships with others in the field to mentor you.”

October is National Disability Employment Awareness Month, we urge you to celebrate the diversity of disability, embrace and support employees like Tayone, and promote equal employment for all.

Read more employment success stories.