Seclusion and Restraint: A Mother and Teacher’s Perspective

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 ‘pre-school 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

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.”

A Black family—dad, son, and mom—is standing outdoors. They are posing next to each other, smiling big for the camera.

One Family’s Experience Navigating Medicaid, From Applying to Obtaining Services

By Terri from Massachusetts

A Black family—dad, son, and mom—is standing outdoors. They are posing next to each other, smiling big for the camera.Fifteen years ago, within days of being born, we learned that our son had Down syndrome. This sent us into a flurry of information gathering, advocacy, and more.

One of the first pieces of advice other parents gave us was to sign up for Medicaid to help with expenses, including daylong doctor visits every six months and specialized equipment. A quick glance at the application was not encouraging.

Despite being well-educated, I found the paperwork daunting. It made me wonder—and worry about—what the process would be like for someone without strong literacy skills or for whom English is a second language. The cynic in me wondered if it was complicated by design, to frustrate people from applying.

For years, I was one of the frustrated people. My time felt completely consumed with trying to understand what it meant to raise a child with Down syndrome and to connect with families and communities that could support our efforts. Factoring in time spent trying to give some attention to our older child (forget finding couple time or alone time) and working at a more-than-full-time job meant I had no emotional bandwidth left to go through the [Medicaid] application process.

Finally, when my son was eight, another parent told me that many hospitals have staff who help navigate it. Thankfully, the hospital’s help meant we were successful on our first attempt. Still, applying so late meant we missed out on eight years of having co-pays covered, on financial support [for medically necessary items], on assistive devices to help my son walk and talk, and on getting him a [support worker].

For the most part, [having] Medicaid for the past seven years has been a huge help. We finally got a [support worker] and, a year later, a skills trainer.

Then the pandemic hit. For two years, we had neither service, which is understandable, because no one was eager to meet in someone’s home, and we weren’t eager to have anyone in our home either.

A Black family—mom, son, and dad—is standing outdoors. They are posing next to each other and smiling.

In July 2022, we were finally able to resume with [another support worker] and skills trainer. But where did the money go during those two years? It did not go to already underpaid [support workers] or skills trainers nor did Medicaid offer to make up for even a fraction of lost time, despite [my son’s skills having regressed]. In fact, Medicaid decreased our son’s skills trainer hours this past summer.

There are many ways in which we are grateful for Medicaid. When it works, it works well. Expenses are so high for so many of the things we have needed over the years, and even a little of the support that is included with Medicaid would have been welcome. But the process of successfully signing up seems to rely on a combination of word-of-mouth, advanced literacy, legal skills, patience with paperwork, and luck.

It should not be so difficult to support the needs of our most vulnerable citizens.

A young adult woman with developmental disabilities is holding a tablet. She's looking at the camera and has a big smile.

Medicaid Saved Bob’s Daughters’ Lives but Also Creates Constant Struggles

By Bob from New Jersey

Medicaid saved my daughters’ lives, and I am eternally grateful for it.

Annika and Maya were born 19 years ago with significant developmental disabilities and complex medical issues. Medicaid gave us easy access to one of the best children’s hospitals in the world, Children’s Hospital of Philadelphia (CHOP), which is located less than one hour from our home.

A young adult woman with developmental disabilities is holding a tablet. She's looking at the camera and has a big smile.


Annika and Maya were seen and cared for by some of the best specialty doctors in the world, including neurologists, gastroenterologists, geneticists, orthopedists, and feeding specialists—and their care was covered by Medicaid. These doctors literally saved Annika’s and Maya’s lives and gave them the best chance for a quality life.

Many times, when we took Annika and Maya to another hospital for urgent care, we were told they could not adequately care for them and they, subsequently, sent us to CHOP.

Maya passed away in 2014 after suffering from a fatal seizure. She lived a full, rich, and joyful life, nurtured by the exceptional support and overwhelming love of our family and friends. She is deeply missed.

A few years ago, [our state] Medicaid agency informed us that CHOP would no longer be in-network, so we should plan on using New Jersey hospitals. However, there is no comparable hospital in [the state].

The Arc of New Jersey advocated for CHOP to become in-network with [our state] Medicaid agency again. This did not happen, but a compromise was given. Now, the Medicaid agency may make a case-by-case exception for a child to go to CHOP for a specific reason, for a specific doctor, and for a short period of time.

For Annika to be seen at CHOP now, we must go through a long, difficult, frustrating, and time-consuming process to get the prior authorization. The authorization is only for a month or so and only for two to three visits. This is a terrible and arduous process. This never would have worked for Annika when she was younger and had to go to CHOP frequently and see many doctors.

Under this new out-of-network system, my wife and I would have had to spend all of our time managing prior authorization—an impossible task. This is on top of the emotional, physical, and financial stress of having a child with great needs.

I am thankful for [our state] Medicaid program because it provided us access to the many supports and services that have helped Annika grow to her full potential. However, I am saddened to think of all the children [in New Jersey] using Medicaid that will not have access to [experts at] CHOP. This is a tragedy that would be easy to correct.

How You Can Help

Medicaid provides critical support to families, like Bob’s, nationwide. Please support legislation that protects and expands Medicaid to better help families with disabilities. Contact your state chapter to learn how to do this in your state.

A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.

The ADA’s Promise Must Still Be Realized: A Conversation With Sean Pevsner

For 33 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.

We recently talked to disability rights lawyer Sean Pevsner about why the ADA matters and why there’s still so much to do to see its full promise fulfilled.

A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.Sean founded a law firm with his best friend, Mark Whitburn. At their firm, Sean works on special education law and practice, guardianship and probate proceedings, and other civil rights cases. He focuses on the ADA, the integration of individuals with developmental disabilities into society, and ensuring that students with disabilities receive the appropriate services under the Individuals with Disabilities Education Act (IDEA).

Sean has cerebral palsy and operates a motorized wheelchair using head movements. Due to his quadriplegia, he cannot write and must rely on an interpreter or a specialized computer to communicate.

People have underestimated Sean since the moment he was born. He was born clinically dead, and an anesthesiologist had to administer CPR for 45 minutes until Sean could breathe on his own. The anesthesiologist likely thought Sean wouldn’t survive, but Sean proved him wrong.

Sean began his schooling just as the IDEA was passed into law. When he wanted to leave the segregated private school to attend mainstream public school, he and his family had to fight to demonstrate that he could thrive there.

When his high school threatened to put him in remedial classes despite his excellent grades, Sean, his family, and Mark fought for his right to attend the same classes as his peers. They fought against teachers who thought he couldn’t handle the workload and administrators who thought he wouldn’t graduate. Despite doubters, Sean graduated from the University of Texas in 1998 with majors in Greek and Latin and, later, from the University of Texas Law School.

In 2011, Sean passed the Texas State Bar. It took him eight days to deliver every answer orally to interpreters. In the end, he was exhausted. At the swearing-in ceremony, Texas Supreme Court Chief Justice Wallace Jefferson specifically acknowledged Sean.

Sean was surprised to learn that the judge’s sister had invited the child of a family friend, a 9-year-old with cerebral palsy. She was seated in the front row so she could see someone like her become a professional advocate. “I did not believe anything could top my passage of the eight-day Texas Bar Exam,” says Sean, “but I was proven wrong.”

Q: What does the ADA mean to you? Why is it important to you in your personal life and your work?

The ADA means that individuals with disabilities have an equal opportunity to live and contribute to their community. It has broken down a lot of barriers to community-based services, such as community attendants, education, and employment. It also helps people with disabilities access many things that people without disabilities take for granted, like the ability to live independently in your community, without worrying about being forced into institutions, accessing education, and finding employment.

As someone with severe cerebral palsy, the ADA has helped me in many ways. My personal life has improved in terms of getting a quality education and becoming a licensed Texas attorney. I have equal access to public accommodations, such as hotels, office buildings, restaurants, and other public establishments. I have equal access to both state governmental and private entities’ programs and activities as well.

Q: In what ways is the ADA falling short 33 years after being passed?

The ADA has fallen short in increasing the employment rate for people with disabilities. While the ADA requires employers to provide effective job accommodations, it has not increased the recruitment and hiring of qualified employees with disabilities.

It also fails to eliminate institutional bias in the U.S.’s long-term care system. Even though the ADA requires state governmental entities to place people with disabilities in the most integrated setting (as the U.S. Supreme Court interpreted it in Olmstead v. LC), institutional bias is still a major issue in our country today.

Congress must pass, and the President must sign, the HCBS Access Act that would end this institutional bias. The HCBS Access Act would eliminate waiting lists for community-based services and increase wages for direct care workers.

Q: What has been the biggest or most important case you have done around the ADA?

I use the ADA to help others with disabilities get funding for community-based services to live in and contribute to society instead of being institutionalized. In Harrison v. Young, my law firm convinced a federal judge that the Texas Health and Human Services Commission (HHSC) violated Title II of the ADA by failing to provide funding to our client with multiple disabilities to live in a community group home. The HHSC attempted to place that person in an institution against their will. My law firm argued that this violated the integration mandate provision in the ADA.

Q: How can others get involved in advocacy to support the implementation of the ADA and disability rights progress?

We should conduct serious disability etiquette training to educate people about the ADA and the importance of including people with disabilities in all aspects of society. Generally, the public is uninformed about disability rights, the tenets of the ADA, and the importance of equality and inclusion of all people with disabilities.

There is also a myth that it is too expensive for the public and businesses to include and accommodate people with disabilities, both online and in person. However, the reality is that any cost is made up in increased employee productivity and access to new customers.

Finally, to achieve true inclusiveness and equality, the disability community must lead by example. We must accept others with different types of disabilities. People with polio or paraplegia must accept people with cerebral palsy, speech impairments, and intellectual disabilities. We should ensure our own community is fully inclusive of all people with disabilities and get rid of hierarchies of disabilities that separate us from working together.

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

It’s Time for August Congressional Recess

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

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

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

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

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

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

We’re so proud of the way you have shown your commitment to disability rights over the years—now, let’s build on that success! Connect with your representatives and share how their legislative actions (both past and present) affect your family. Your story and perspective on important disability policy issues can prepare your legislator to fight for disability rights through 2023 and beyond!

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The Pandemic’s Devastation Continues for Many Families

“It’s like a tornado has devastated us. But no one is coming to help.”

By Grace from New York

I have twin sons who have autism spectrum disorder and intellectual and developmental disabilities. One of my sons has significant needs and needs to attend a full-care and full-supervision day program. He graduated from high school in June 2020, but because of the pandemic, no day programs were open for him to attend.

Three years later, due to the pandemic’s devastation of adult services and programs, there are still no programs available for him, nor are there any programs for the graduates of the classes of 2021, 2022, and soon, the class of 2023. And there is nothing on the horizon for any of them.

My son has been home for three years without supports or services.

I had to leave my job to stay home and care for him full-time, even though I am a single parent, and I was the only source of income for my family. Now, we are struggling terribly, both financially and physically, trying to survive under these extreme conditions.

The devastation of the pandemic has not ended for our family and others like ours. My son has been left with no direct care support, no respite, no day program—no services at all. The main cause for this failure is the lack of funding for programs and staffing. It was a fragile system at best pre-pandemic, but now, it has been decimated.

The best analogy is that it has been similar to when a tornado levels a town, and the community must rebuild everything completely. That is what happened to the programs and services for adults with disabilities during the pandemic. But the big difference in our story is that no Red Cross has shown up to help. No FEMA. No one is coming to help.

We have been left out here in our decimated landscape for three years now. And the idea that Congress may want to further cut financial support to programs for this most vulnerable population is beyond comprehension.

Please take the time to look at what has happened, to see the suffering, and to offer the compassion and realistic financial support so desperately needed.

Many young adults with disabilities face similar challenges when transitioning out of school. Life for these students shouldn’t stop when their schooling ends. This problem is not new, but the COVID-19 pandemic has increased its severity and effect nationwide.

Congress must deepen its investment in Medicaid home and community-based services so people with disabilities have the support they need to take part in their communities throughout their lifetimes.

A photo from 1988 depicting a family of six. Three people are standing in the back, including a young adult man in a dark suit and purple tie; a woman wearing sunglasses, a white blouse with black polka dots, and white pants; and a man in a track suit. Two young men in suits are sitting in chairs in front of them. Another young man, also wearing a suit, is sitting cross-legged on the floor between them.

Roy’s Fight to Keep His Three Adult Sons at Home and Out of Institutions

As parents of adult children with intellectual and developmental disabilities (IDD) grow older, they may face concerns about what their child’s life will look like when they are no longer able to provide care. Certain questions become important and can be agonizing to think about, such as:

  • How will my child’s life change when I’m gone?
  • Where will they live?
  • Who will pay for the things they need?

For Roy, these questions are all too familiar.

A professional photo of Roy and Arleen's family from 1976. Arleen is sitting in the middle and is wearing a tan dress. She has short, dark brown hair, red lipstick, and is wearing a gold necklace and earrings. Her husband, Roy, is on the left; he has shaggy brown hair and is wearing a light tan suit with a dark brown shirt underneath. Their three sons are seated behind them and to the right; they all have shaggy, bowl haircuts and dark brown hair. The young man behind Roy has a small moustache and is wearing a blue jacket. The young boy next to Roy is smiling and has a white turtleneck on. The young boy next to Arleen has a very big smile. He's wearing a blue jacket with a white collared shirt.

The first time Roy and his wife, Arleen, heard the word autism was in 1963. The high school sweethearts had been married just two years and they were told their son, Roy Jr., who was only a year old, had autism.” After Roy Jr., Arleen and Roy had two more sons, Michael and Glenn, and all three children would eventually be diagnosed with autism and fragile X syndrome.

In those days, institutions were the only options in New York state for people with disabilities. Looking for the best care for their sons, Roy and Arleen visited the Willowbrook State School. The deplorable conditions shook the couple to their core. Roy and Arleen made a vow to each other that day: each of their sons would live at home with their parents all their lives.

The visit to Willowbrook was a turning point in Roy and Arleen’s lives. The family devoted themselves to advocating for their children and others with IDD. Thanks to their advocacy efforts, Roy Jr., Michael, and Glenn attended IDD parent-founded provider agency schools until the Individuals with Disabilities Education Act (IDEA) was enacted in 1976. IDEA guarantees students with disabilities the right to a free and appropriate public education—and after it was passed, the three boys were able to attend public school.

Twelve years ago, Roy’s “dear cherished bride” of 50 years passed away, leaving Roy to care for his three sons alone. After several years of advocacy, Roy received approval from his state agency to convert his home into a certified group home for his three sons and two other men. In 2019, when the family’s in-home residential services were ended by the provider who had served them for 20 years, Roy set up self-directed care for his sons and became an immediate supervisor for a staff of seven.

A photo from 1988 depicting a family of six. Three people are standing in the back, including a young adult man in a dark suit and purple tie; a woman wearing sunglasses, a white blouse with black polka dots, and white pants; and a man in a track suit. Two young men in suits are sitting in chairs in front of them. Another young man, also wearing a suit, is sitting cross-legged on the floor between them.Since then, Roy Jr. and Glenn have both passed away. While both lived at home until their passing, they suffered at the hands of an underfunded system of care. Despite these losses and challenges, Roy has remained steadfast in his commitment to keeping his middle son, Michael, in his own home all his life.

Four people have been selected and approved to live with Michael. However, for the past two years, the agency Roy is working with to run the group home has been prevented from opening because they are unable to hire staff at the low salary rate authorized by Medicaid for this type of home. On average, direct care workers get paid just $14 an hour, which is much lower than the hourly rates for similar jobs.

Roy is doing all he can to help plan for Michael’s future. He’s now 84 and Michael will be 60 this summer. Roy wants to ensure Michael is safe at home. For that to happen, Congress must invest in critical supports for people with IDD.

Millions of people with disabilities, like Roy’s son, Michael, rely on Medicaid home and community-based services to live at home in their communities. But due to the fact that Medicaid must fund institutions, and home and community-based services (HCBS) are optional, states don’t have the funding to support everyone in the community.

To change this, Congress must invest in HCBS now!

Roy’s efforts to ensure his son can live at home in his community should not be hindered by decisions in Congress and a lack of investment in disability services.

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Disability and Aging Groups Join Senator Bob Casey and Hundreds of Care Advocates for a Save Medicaid Online Rally

Washington, DC —Disability and aging groups were joined by Senator Bob Casey, care advocates, and nearly 500 activists from around the country for a Save Medicaid Online Rally on May 24. During the rally, attendees sent demands to Congress to stop any cuts to Medicaid, an essential program that 88 million Americans rely on for their health care, including 54 million older adults, children, and people with disabilities.

The rally, hosted by The Arc of the United States, Autism Society of America, Disability and Aging Collaborative (DAC), Consortium for Constituents with Disabilities (CCD), and Caring Across Generations, served as an opportunity for supporters to learn more about the harmful effects of work requirements and program cuts against Medicaid included in the Default On America Act. This rally is one of many actions supporters and care advocates across this country are participating in to save Medicaid, including last week when Caring Across Generations delivered 12,000 petitions and The Arc of the United States delivered 86,000 petitions demanding Congress put a stop to harmful cuts.

“Let’s call it like it is: the Default On America Act will directly harm millions of families across this country. I find it alarming that this extreme proposal will take Medicaid away from millions who do not meet new bureaucratic work requirements, including people who have a hard time finding work, such as family caregivers, older people over 50, and disabled people,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations. “This plan puts a false choice in front of us: take care away from families, children, older adults, and disabled people or force a default that will disrupt Social Security checks and raise interest rates on credit cards, mortgages, and car payments. There is a better way: raise the debt ceiling cleanly and invest in the care we need by making the ultra-wealthy and big corporations pay their fair share.”

“Medicaid is a lifeline for people with disabilities, and its underfunding has already created a crisis of care,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Many people with intellectual and developmental disabilities (IDD) have serious medical needs and already face barriers to accessing safety net programs and our health care systems. Millions of them are falling through the cracks right now because these complex systems have overwhelming red tape and years-long wait lists. Adding work requirements to Medicaid will only exacerbate disparities and discrimination against people with IDD and jeopardize their access to life-sustaining health care and community living.”

“The stakes have never been higher,” stated Christopher S. Banks, President and CEO of the Autism Society of America. “Cutting Medicaid will further exacerbate the current unacceptable waiting lists for services and support for people with Autism. Understandably, aging parents and caregivers have intense anxiety surrounding the fears of what will happen to their family members after they are gone. We must create equitable and accessible health care for Autistic individuals and the greater disability community.”

According to Carol Tyson, Chair of the Consortium for Constituents with Disabilities, “People with all types of disabilities rely on Medicaid for access to critical health care, and services and supports to live in, and contribute to the community. The evidence is clear that Medicaid work requirements are not effective. Medicaid work requirements would create unnecessary barriers and result in millions of the already underserved facing life-threatening cuts to essential coverage. Congress must prioritize the health and well-being of people with disabilities, and all those who rely on Medicaid and essential programs, by rejecting proposals that would cut Medicaid funding, impose work requirements, or restrict access to care.”


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.

About Autism Society of America: The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit

About Disability and Aging Collaborative: The Disability and Aging Collaborative (DAC) is a coalition of approximately 40 national organizations that work together to advance long-term services and support policy at the federal level. Formed in 2009, the DAC was one of the first coordinated efforts to bring together disability, aging, and labor organizations.

About Consortium for Constituents with Disabilities: The Consortium for Constituents with Disabilities (CCD) is the largest coalition of national organizations working together to advocate for Federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society free from racism, ableism, sexism, and xenophobia, as well as LGBTQ+ based discrimination and religious intolerance.

About Caring Across Generations: Caring Across Generations is a national organization of family caregivers, care workers, disabled people, and aging adults working to transform the way we care in this country so that care is accessible, affordable and equitable— and our systems of care enable everyone to live and age with dignity. To achieve our vision, we transform cultural norms and narratives about aging, disability and care; win federal and state-level policies; and build power amongst the people touched by care. For more information, visit

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Private Duty Nursing Makes Community Living Possible: How You Can Help!

For Jennifer, home health nurses hold her family together. Nurses come to her home and care for her 11-year-old child’s medical needs. They help ensure that her child’s tracheostomy (a surgically created hole in his neck) and ventilator are both working so he can breathe. Because of this care, her child can experience his childhood at home—riding his bike, going to school, and playing with friends.

Around the country, thousands of people with disabilities and families like Jennifer’s rely on private duty nursing to help their family members live at home and stay financially stable.

Private duty nursing is care provided by a registered nurse or licensed practical nurse to someone who has complex medical needs. A private duty nurse performs skilled care in a person’s home that is typically provided in a hospital or nursing home. Nurses may help monitor and ensure that ventilators and tracheostomies are working, change and monitor feeding tubes, provide IV therapy, and more.

Children and adults with disabilities who need these services rely on private duty nurses in order to live at home in their communities. Otherwise, they may be forced into an institution or nursing home—away from their families—and often have a lower quality of life and social inclusion.

For parents and family members, private duty nurses help the family stay intact. For Pamela from New Jersey, “The home health care nurses change our lives every shift they show up. I get the chance to just be mom, not nurse or therapist, and I can be more present for my older son.”

Private duty nurses also help families remain financially stable and parents remain employed. When their third child, Josh, was born and had significant medical needs, Debbi and Victor struggled to hold onto their jobs. Victor was often called away for active military duty. Debbi worked through the night to meet her deadlines and keep the health insurance they relied on for Josh’s care. “That insurance, it was always in the back of my mind, was what was keeping Josh alive.” The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

For many families nationwide, parents are forced to leave work to care for their family members who are medically complex. Pamela concedes, “Our son’s medical needs are left for us to manage; often at the cost of one parent having to leave behind their career.” It doesn’t help that there is still a lack of state paid family leave programs across the country.

Right now, 50 to 70% of private duty nursing shifts nationwide are going unfilled. This is causing additional pressure and stress for the families who need it.

The home skilled nursing workforce is experiencing a shortage similar to that of the general nursing and direct care worker communities, and Medicaid is often unable to pay nurses at the wages they could get in a hospital.

The result is that people with medical complexities are being hospitalized with avoidable complications, and parents and caregivers are being forced to leave their careers behind to care for their loved ones or to make the difficult decision to put their family members into an institution.

How You Can Help

Protect Medicaid from any cuts so that people eligible for private duty nursing receive their services.

Any potential Medicaid cuts could make access to private duty nurses even more difficult. The stability of families and quality of life for children and adults with medical complexities is at stake. Support proposals at the state and federal levels that would improve pay and benefits for private duty nurses and other members of the direct care workforce. Two major federal bills are the Better Care Better Jobs Act and the HCBS Access Act.

Support universal paid family leave that includes siblings and other family members.

The Paid Family Leave Act would help parents and family members stay employed while they balance work and provide the needed care to their family members with medical complexities when they cannot find a nurse. Some states nationwide are working to pass legislation to provide different variations of paid family leave. Contact your local legislators or state chapters of The Arc to support those bills.