The US Capitol in Washington, DC

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

/in , , /by The Arc

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.

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

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

NCCJD Celebrates 10 Years of Disability and Criminal Justice Advocacy

/in /by The Arc

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

/in /by The Arc

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.