A man with disabilities wearing sunglasses, a navy Rushcreek Fire Department T-shirt, jeans, and sneakers stands in front of a bright yellow fire truck. The truck door is open and has text that reads, “Rushcreek Twp. Vol. Fire Dept.

The Cost of Medicaid Cuts: What Kaycee and Keith Stand to Lose

/in , /by The Arc

Every person deserves the chance to live, learn, and be part of their community. For many people with disabilities, Medicaid home and community-based services (HCBS) make that possible. These services help people stay healthy and connected to their communities, with the support they need. Without HCBS, many families would face fear, isolation, and impossible choices.

A smiling woman with disabilities wearing glasses, a tiara, and a pink sash stands in front of a sparkly pink backdrop. She is holding a crown-shaped trophy, flowers, and a bouquet. A decorative banner behind her includes the words “IN OUR AMAZING.”Melanie from West Virginia knows this better than most. Her daughter, Kaycee, is 22 years old and full of hope for her future. But getting to this point was not easy. Melanie remembers the years before HCBS, when every day felt like a crisis. As she explains, “Before Kaycee had access to Medicaid and the IDD Waiver, our family was in constant crisis. She needed step-by-step support for daily life… We were doing everything we could, but it was not enough.”

Everything changed when Kaycee finally got the support she needed. With HCBS, she gained access to therapies, medical care, and community services that helped her grow. She found her voice. She learned new skills. She began to take part in her community in ways that once felt impossible.

But Melanie knows how fragile that progress is. “If home and community-based services are cut, my daughter will not just lose support, she will lose her ability to safely live the life she has worked so hard to build.”

Kaycee still needs daily help to stay safe, communicate, and manage her medical needs. Without HCBS, she could lose the independence she fought so hard for. She could face medical emergencies, isolation, or even institutionalization.

A smiling man with disabilities wearing glasses, a black shirt, and a black baseball cap with a yellow sun design takes a selfie indoors. Fluorescent ceiling lights and a window with vertical blinds are visible behind him.In Ohio, Keith also depends on HCBS to live the life he chooses. He is proud of the ways he gives back to his community. He is an Eagle Scout, a volunteer football coach, a church sound tech, and a member of his local fire department’s auxiliary team. He also has complex medical needs that require daily support.

Keith shares, “I depend on HCBS services to manage my complex needs that are not always visible to others. I was born with complex heart and pulmonary complications. These services have allowed me to remain active in my community and church.”

He worries deeply about what cuts would mean for his future. “I am deeply concerned that any end to these programs would jeopardize my ability to contribute to society and live independently,” he says. “I urge you to protect these essential services for myself and others with disabilities.”

These stories show what HCBS makes possible. But right now, these services are at risk. Congress has already made major cuts to Medicaid, and more cuts may come. That means longer waiting lists, fewer supports, and more families in crisis.

People with disabilities and their families deserve better.

Now is the time to act. Contact your members of Congress and tell them to protect Medicaid home and community-based services. Lives, futures, and communities depend on it.

 

A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.

Spotlighting The Arc’s Changemakers: Burt Hudson, Treasurer of the Board of Directors

/in , /by The Arc

Burt and John, a man with WAGR syndrome, stand together with their arms around each other.Family is at the heart of Burt Hudson’s connection to The Arc.

Burt’s younger brother John, who he introduces as “my best friend for as long as I’ve been alive,” has an intellectual and developmental disability called WAGR syndrome. His love for John is boundless, but as a teenager, Burt was mad at the world for giving John a more difficult path, including a near-death experience. But John always brought Burt’s life back into focus because he was his rock. As he shares, “I am the man I am today in many ways because of my brother.”

Burt’s life came full circle when he and his wife Kim welcomed their first child, Jack.

Despite genetic testing showing the absence of trisomy during pregnancy, Burt and Kim were surprised to learn that their “beautiful little guy” had Down syndrome at birth. As Burt reflects, “The night Jack was born, I said to my wife, ‘Without my brother in my life, I would have never become the man you would have married.’” Burt and Kim didn’t hesitate about the road ahead because “There is no playbook for anyone… If you love your child as much as you can today, tomorrow will get figured out. And just like my brother, we’ll watch Jack change the world for the better.”

Burt and his newborn son sitting in a reclining chair, sleeping together while a dog looks at the baby.Jack is now 9 years old and, despite a speech delay from childhood apraxia of speech, he is a complex, smart, and kind third grader. He loves riding horses, dancing to Bruno Mars and Maroon 5, drumming, and acting out Muppets movies. He also has a 6-year-old younger brother, James, and “They have been a duo ever since James was born.” Burt recalls a memory from his childhood when he and his brother were wrestling in the ocean, showing John was just another sibling. The same camaraderie is seen between Jack and James.

Burt’s mom has “always strived to make sure John can live an independent life.” That’s why she has long been involved in advocacy efforts with The Arc’s chapters in Georgia, where Burt grew up and John now lives in an inclusive group home not far from his parents and brother. As Burt shares, “he’s very proud to be a man on his own.”

It wasn’t until his adulthood, though, that Burt’s mom asked him to participate in a plane pull fundraiser for her chapter of The Arc. Burt eagerly flew to Georgia to pitch in. He hit it off with the Executive Director, who fatefully connected him to The Arc of Virginia, where he has served on the Board for 13 years and still going strong. After Jack’s birth, he became even more passionate about his role as a volunteer. “In the midst of the exhaustion, I decided I had to do more for The Arc. So, I went on to The Arc of the United States’ website and saw an application for joining the Budget and Finance Committee. Over the years, I got to know several staff and board members and was asked to join the Board.”Two young boys, one with Down syndrome, wear warm, winter jackets, and are sitting together outside.

Burt’s career has also been influenced by John and Jack. He is COO of LeadingAge, a community of service providers for older adults and people with disabilities. “As a compassionate society, we must take care of others. I’ve never known anything different.”

What continues to drive Burt’s involvement in The Arc is gratitude for the progress made for people with disabilities. He shares, “It is gut-wrenching what our society has done to people with disabilities historically, and it’s frightening to ever try to picture my brother or my son living in those kinds of conditions. I don’t know how people started to right those wrongs, but I know The Arc was at the forefront of it. So, I give back to The Arc in any way I can because it’s done so much for people like my brother and my son. The best part is that the people we serve are sitting next to me at the table. The Arc is led by people with disabilities and caregivers, which I find unique and special. I’ve met a lot of people through The Arc and the ones who make the biggest impact on me are those who have disabilities. These are the people who tell me how I can help The Arc. When my son was born and I had my own health challenges, these same people supported me. All these people had the Hudsons’ back and I’ll continue to have theirs.”

A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.Burt wants people with disabilities and their loved ones to know they can always turn to The Arc for guidance. “The Arc is a wonderful resource full of wonderful people, one that generations of families have relied on to find the path they need to be walking.” As Treasurer of our national Board, Burt is heartened to see The Arc remain strong through the decades. “There’s a lack of compassion and a lack of love all around us, and The Arc is the heart of this country. It shows the strength we have when we’re banded together with a common cause and love for each other. The consistent light The Arc has provided gives me comfort and hope that we’ll get through anything.”

Thanks to The Arc and its advocates, it’s easy to imagine a bright future for Jack. Burt shares, “My hope for both my kids is to find the best happy path for their lives. I want Jack to live a full and independent life just like my brother John.”

He sums up, “I volunteer as a thank you to the entire federation of The Arc. I don’t think there’s a way to appropriately thank everyone for what they’ve done for my brother and my son. There’s no way to say thank you enough, but I’ll keep volunteering my time until I figure it out.”

A black and white photo of Lois Curtis, a Black woman with disabilities. The image is up close of just her face, smiling broadly.

Celebrating 25 Years of the Olmstead Decision

/in /by The Arc

June 22 marks the 25th anniversary of the U.S. Supreme Court’s decision in Olmstead v. L.C.,  a landmark case that opened the door for millions of people with disabilities to live in the community.

What was the Olmstead case about?

The Olmstead case involved two women from Georgia, Lois Curtis (the L.C. in the case name) and Elaine Wilson, who both had diagnoses of intellectual disability and mental health conditions. Lois and Elaine were forced into the state’s mental health hospitals many times, despite wanting to remain at home with the help of community-based services. Doctors agreed that Lois and Elaine were capable of living in the community, with appropriate support. However, the state took years to set up their services.

The Atlanta Legal Aid Society filed a lawsuit on behalf of Lois and later added Elaine to the case. Tommy Olmstead, Commissioner of the Georgia Department of Human Resources, was the defendant.  The case was grounded in the Americans with Disabilities Act (ADA) and whether people with disabilities could decide where they could receive services and supports.

The Supreme Court issued a requirement that states had to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs.

What was The Arc’s role?

A woman in a floral bathing suit lays in a beach chair by the pool, smiling

Lois Curtis

Following the enactment of the ADA in 1990, the federal courts heard cases about the meaning and requirements of the new law. As these cases began to come before the Supreme Court, organizations like The Arc, which played key roles in the passage of the ADA, worked together to coordinate and file amicus curiae (‘friend of the court’) briefs.  The Arc participated in a brief in the Olmstead case, supporting Lois Curtis and Elaine Wilson. The brief explained the importance of the assumption that people with disabilities have the right to live in the community rather than only living in segregated settings.

In addition, many state chapters of The Arc worked with their state’s Attorney General to ensure that they did not join an amicus brief in support of Georgia’s/Olmstead’s position in the case. The significant lack of support for the Georgia brief made an impact since, at that time, states would normally have supported another state’s position. This kind of defensive work may not often make the headlines, but these critical, behind-the-scenes efforts from chapters of The Arc had a huge impact on the case.

What was the Supreme Court’s decision in Olmstead?

This was a landmark decision for the rights of people with disabilities to be a part of their communities, on their terms.

The Supreme Court held that the ADA prohibits unjustified segregation of people with disabilities and that states must provide community-based services to people with disabilities when: such services are appropriate; the individuals do not oppose such services; and community-based services can be reasonably accommodated, considering governmental resources and the needs of others receiving disability services.

 For other important findings in the decision, the Department of Justice (DOJ) has a statement and technical assistance guide on the ADA’s Integration Mandate and the Olmstead decision.

What is the impact of the decision?

The Olmstead decision paved the way for generations of people with disabilities to live full lives in the community. Here are several impacts to highlight:

  • Many states developed an Olmstead State Plan to show that they had a path forward that led to more support in the community for people with disabilities and a plan for complying with the decision.
  • An approved state Medicaid plan does not absolve the state of failure to meet its obligations under Olmstead and the ADA or indicate that the state has devoted sufficient resources to achieve compliance.
  • Individuals can file Olmstead and ADA claims to enforce their right to live in the community.
  • People living in the community who are “at risk” of institutionalization are covered by the ADA and Olmstead
  • The integration mandate extends not only to residential settings but other contexts impacting the lives of people with disabilities, including employment, education, and more.

Why does the Olmstead case still matter today?

The Olmstead decision is not just a historical event for celebration. It is a living roadmap to help ensure that people with disabilities, including intellectual and developmental disabilities (IDD) receive the support they need and opportunities to live, work, and learn in the setting of their choosing.

Our nation has not yet achieved full implementation of the national goals set forth in the ADA: equality of opportunity, full participation, independent living, and economic self-sufficiency. The Arc continues to work to improve outcomes and advocate for the resources needed to build community infrastructure and a workforce to support people with IDD. The Olmstead decision is a vital tool to create a better life for people with IDD and other disabilities.

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

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

/in , , /by The Arc

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

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

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

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

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

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

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

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

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 Routon 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.”

There is an exam table at a doctor's office in the forefront. In the background is a counter with papers, a sink, medical equipment, and posters hanging on the wall.

“He Isn’t Worth Helping” – Devastating Stories of Medical Ableism

/in , /by The Arc

Our health care system is failing people with intellectual and developmental disabilities (IDD), and costing them their lives. Their shared experiences are eye-opening and egregious, including doctors outright refusing to provide services, wrongly attributing health issues to their disability, not viewing people with IDD as reliable communicators of their own health issues, making assumptions about quality of life and worthiness, refusing to allow a support person to accompany them, discounting their pain, and more.

People with IDD are being denied life-saving treatments or even routine preventative health care at disproportionately high rates. The research reinforces what we hear every day: people with IDD have poor experiences at hospitals and medical centers, which leads to poorer health outcomes and shorter life expectancies. Explicit bias and discrimination are directly limiting lifespans and causing unconscionable, avoidable suffering. Many of these discriminatory policies and practices were laid bare by the COVID-19 pandemic.

To combat these health inequities, the U.S. Department of Health and Human Services (HHS) is proposing updates to Section 504 of the Rehabilitation Act, landmark legislation prohibiting disability discrimination. Unrevised in 50 years, reforms would forbid medical discrimination against people with disabilities and improve accessibility. These urgent updates are important steps forward for protecting rights and ensuring equitable health care access.

The Arc has been a longtime advocate on this issue, and we jumped at the opportunity to submit comprehensive comments to HHS on these proposed updates. We shared research on the wide-ranging discrimination people with IDD face in health care settings and highlighted the need for reasonable modifications and plain language communications.

Most crucially, we included direct stories of discrimination collected from people with IDD and their loved ones nationwide. Here are a few of their stories.

  • A parent in Washington state has been told by doctors and health care providers that their child with Down syndrome “isn’t worth helping… isn’t worth saving.”
  • A child with autism in New York was denied care from a pediatrician for basic primary care services out of concern that his care needs would “overwhelm” the pediatrician’s practice.
  • When her son with Down syndrome experienced febrile seizures and stopped talking, his parent was told, “He has Down syndrome. What do you expect? They don’t talk.”
  • People with IDD are frequently denied clinically-appropriate treatment that would be offered to a person without IDD. For example, a parent in Connecticut was told by multiple doctors that her 10-year-old son’s chronic joint pain “is part of his disability” or “growing pains” before finally receiving a Lyme disease diagnosis three years later and being told the damage is permanent.
  • A parent in Maryland reported that it took 6 years to find a therapist for her daughter, who has Down syndrome. “[My daughter] is verbal but it is difficult for her to verbalize her feelings… I thought she had been sexually assaulted. I was finally able to get her [help], but it was temporary.”
  • Accessing mental health and dental services are particularly challenging for people with IDD. For example, Michigan parents of a young child with autism who was denied service by a dentist, were “dismissed with a warning not to come back until he no longer expressed the behaviors of an autistic child.”

The stories are innumerable, infuriating, and heartbreaking. But they power our advocacy. We will continue advocating for Section 504 reforms addressing the pervasive and longstanding discrimination that people with IDD experience from medical professionals. Everyone deserves equal access to health care.

By uplifting the voices of people with lived experiences, we’re holding health systems accountable and pushing them to see all patients as equally deserving of quality, individualized care. Join us in speaking out against medical ableism until equity is reality. Health care is a human right that must not be denied for any member of our community.

A mother and son at a boyscout event

Seclusion and Restraint: A Mother’s and Teacher’s Perspective

/in , /by The Arc

A woman with long brown hair wearing a black turtleneck sweater and smiling.Cassie is a mother, former educator, and co-founder of Michigan Advocates to End Seclusion and Restraint (EndSaR). She is a passionate advocate against the use of seclusion and restraint in schools, fueled by a lifetime of personal and professional experiences with these practices, which she hopes others can learn from.

Cassie’s first experience with seclusion and restraint happened in 2001 when she was still a teaching student. She took a long-term substitute position working one-on-one with a fifth grader whom the school had determined to be too aggressive to engage in his classroom.

Cassie and her student had a good relationship with no incidents. But one day, Cassie arrived at school and found the student had been secluded in a room after “getting aggressive” at breakfast. He was screaming, punching, and kicking at the window. Staff told her this was typical behavior and that she needed to keep him there until he calmed down. “I had never heard of such a thing in all my educational training,” says Cassie, “but I was very good at following instructions, so I did what they told me.”

The student spent hours in that room—and not long after that, he stopped showing up for school. Over 20 years later, Cassie says this experience still lives with her. “I know what was happening felt wrong, but I had no idea at the time what to do differently.”

Nearly 20 years went by for Cassie without another incident involving seclusion or restraint. And when it happened again, she didn’t experience it as a teacher—it was as a parent. The person impacted was her five-year-old son, Kai.

When Kai was two years old, Cassie noticed her son was different. He was incredibly bright and taught himself to read before preschool—but he was also very intense and craved Cassie’s attention, acting out if she focused on something other than him. These challenges followed Kai into kindergarten. Eventually, he was diagnosed with autism. They discovered later that he also has extreme difficulty following short, specific directions.

The diagnosis gave Kai access to services and supports, and he received an individualized education plan (IEP). The teachers started with this plan and would ask Kai to sit quietly for five minutes, but he would get angry, and they would start the five minutes over again. This led to him being put in a seclusion room for the first time at just five years old.

A mother and son standing outside in a park. The son is wearing a boy scout uniform.Between August and December of his first-grade year, Cassie recorded that six-year-old Kai was sent for “time away” around 100 times, much of which took place in a seclusion room.

“It was a little, closet-sized room in an office… The one skinny window was covered with paper so [Kai] couldn’t see who was outside… Sometimes the door was fully closed, but many times, the school would have the door a little open but blocked so he couldn’t get out. When it was a little open, the school did not consider it seclusion.”

Eventually, a behavioral specialist was consulted, and they advised the use of restraints. This moment was a revelation and turning point for Cassie, both in terms of Kai’s education and her advocacy.

Cassie realized that the school system wasn’t going to work for Kai, because staff didn’t understand that he wasn’t in full control of his actions; he was struggling to manage his nervous system and sensory challenges. These experiences ultimately led Cassie to homeschool Kai. They also inspired her to start Michigan Advocates to End Seclusion and Restraint so that no other students and families must go through what her family did.

Parents and teachers often believe that seclusion and restraint are needed to keep everyone safe. However, Cassie believes that it makes everyone less safe:

“Right now, teachers set expectations for students and expect students to meet them. If they don’t, the system perceives the student as a problem. There is often a lack of awareness of the adult role in co-regulation as a tool for preventing unwanted behaviors. This environment causes parents to feel like they are part of the problem when they offer alternative ways to care for their kids, and this mindset is also part of what fuels the ‘preschool to prison’ pipeline, where students are pushed out of the classroom and become much more likely to be introduced to the criminal justice system.

If we could work with students, their families, and mental health providers to identify the underlying causes of behaviors and resolve those issues, we could prevent most of these crises and issues from occurring. When this happens, everyone is safer.

To do this, we need to support our teachers in the classroom with training on data-driven best practices, developments in neuroscience and learning, and resources, including more personnel and help in the classroom. We need to get away from grading teachers on their classrooms’ behavior management and rewarding and punishing teachers based on the behaviors that students in their classroom display.”

How to Help Students With Disabilities

Teachers and schools need money to support students with disabilities. The Individuals with Disabilities Education Act (IDEA) was passed into law in 1975 to provide education services to kids with disabilities. Currently, Congress funds schools at less than 15 percent of their needed costs. We must fully fund special education—and general education—costs so that teachers and schools have the right resources to support the next generation of Americans.

We also need Congress to pass the bipartisan Keeping All Students Safe Act to establish safety standards and provide better training and oversight to ensure the safety of students and staff and prevent abuse and death. Sign our petition to support this important bill.

A long school hallway lined with red lockers and classroom doors on either side.

Amanda and Other Michigan Advocates Fight to End Seclusion and Restraint in Schools

/in , /by The Arc

A long school hallway with red lockers and classroom doors lining either sideWhen her seven-year-old son was in first grade, Michigan mom Amanda got an unexpected call from the new school principal. Her son, who has autism, had kicked the principal, and Amanda was being asked to keep her son home from school the next day.

A strong advocate for her son, Amanda agreed but asked the school to confirm that her son’s 504 plan was being followed. She also asked for an evaluation for an individualized education plan, since there seemed to be something going on.

But after the incident, things escalated.

“My seven-year-old was put into a classroom by himself. The staff exited the room, closed the door, and held the door handle so he could not leave. They said this was because he would throw items at them or threaten to break items if they stayed in the room. I remember my child saying to me, ‘Mommy, I was so scared. Why did they lock me in there?’ Even though the door wasn’t locked, he couldn’t get out of there and didn’t know what was going to happen.”

These seclusions continued to happen anytime there was a behavior. Despite regular therapy and practicing calming strategies daily before school, nothing worked. Within minutes of getting to school, Amanda would get a call saying her son was out of control and that she needed to go get him.

“Eventually, the therapist told us that our son had PTSD symptoms. That when he would walk into school, he was stuck in a fight or flight response, just waiting for something bad to happen.”

By second grade, the school told Amanda they could no longer support her son, so she moved him to a new school. On the first day at the new school, Amanda got another devastating call, this time from her son, who had been allowed to call his mom during a break from seclusion. When Amanda picked up the phone, she heard her eight-year-old say, “You have to come get me…. pick me up, pick me up. I couldn’t breathe, I couldn’t breathe.”

Frantic, Amanda called the school and was told that her son had been restrained using an approved hold before he was put in a seclusion room. She was told that if her son could talk, he could breathe too. “Years later, after George Floyd was smothered in the streets,” she says, “I realized that the idea that if people can talk, that they can breathe is wrong and that something very bad could have happened to my child.”

While Amanda’s son has not been restrained or secluded in a very long time, the trauma from those past experiences continues to impact him, even now in junior high. And the impact extends to Amanda’s whole family. “We don’t know how [this trauma] will affect us throughout our lives, and I don’t want any child or any family to have to experience what we went through. For me, part of healing is to take this experience and somehow do something with it to make it make sense.”

Part of this healing journey led Amanda to join Michigan Advocates to End Seclusion and Restraint.

Despite her son’s and family’s experience with their area public schools, Amanda wants others to know she doesn’t blame teachers for what happened.

“I am a huge believer in public schools and teachers, and I don’t blame our public educators for doing what they are trained to do. They have no other tools at their disposal and don’t have the funding to do something else… Legislation like the Keeping All Students Safe Act has money attached to it so we can give teachers other tools in their toolbox and the resources needed to use them… I also want parents to know they need to look out for signs of trauma if their child is secluded and restrained. If something strikes you as wrong in your gut, trust it, even if others are telling you it is okay. You know your kid the best.”

Dozens of small people icons forming a map of the United States

Change Your World: Kick-Start Your Disability Advocacy With The Arc

/in , /by Pam Katz

For nearly 75 years, The Arc has been on the frontlines of the disability advocacy movement, fighting for the issues that matter most to people with disabilities and their families. The Arc is a grassroots organization with nearly 600 state and local chapters, all pushing for the full inclusion of people with disabilities on the federal, state, and local levels.

Every day, people with disabilities and allies across the country—just like you—are advocating to build a more inclusive world. And with everything that is on the line right now, we need every person who cares about disability rights and equality to step up and join our fight for inclusion for future generations. We need YOU!

So, what are you waiting for? You can join us RIGHT NOW and become a fierce disability activist! Here’s how:

  1. Find out who your members of Congress are: The Arc provides an easy way to see who your Senators and Representatives are. Head on over to our Action Center and enter your zip code in the Find Your Elected Official box on the righthand side. Once you know who your members of Congress are, visit their website and review their priority issue areas. Using this knowledge, you can tell them how important it is to include disability issues in legislative discussions.
  2. Connect with your state and local chapters of The Arc: Discover who your state and/or local chapters of The Arc are and where they are located. Visit their website to learn how you can get involved.
  3. Follow your members of Congress on social media: When Congress is in session, you can follow along with your members’ current legislative actions on places like Twitter—even if you don’t have an account! When they work on an issue that matters to you and/or aligns with The Arc’s Action Alerts, this is the moment when your outreach will make the greatest impact. Get in touch with them directly or through The Arc’s Action Center to share why they should support a position that benefits the disability community.
  4. Visit The Arc’s Action Center: The Arc’s Action Center (thearc.org/action) houses all The Arc’s current action alerts. Clicking on the alert you are interested in will lead you to a page with more information where you can send a note to your members of Congress showing your support. You can use our prefilled template or write your own. Once you have filled in your contact information and completed your submission, click the button at the bottom to submit your note.

Now that you are equipped with The Arc’s four key advocacy steps, get out there and start advocating for the disability community! Remember, take pictures of your advocacy when possible and share them on social media. Don’t forget to tag The Arc of the United States in your posts.

We can’t wait to see you out there!

 

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

For Tyson, Marriage Changed Everything – Including His SSI

/in , , , /by Pam Katz

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.

I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.