A medical professional in a white labcoat holds a black clipboard.

Let’s Talk About Sexual Violence: Addressing Miscommunication, Inexperience, and Bias in Health Care

By Pauline Bosma and James Meadours

As people with intellectual and developmental disabilities (IDD) who are also survivors of sexual violence, or work with survivors, we face many challenges when trying to get good health care.

We think it’s important to share our stories to help make things better for other people like us. We also want to help health care professionals understand where we are coming from.

Here are some things we have experienced before, or continue to experience:

Pauline Bosma and James Meadours

Pictured left: Pauline Bosma, Rainbow Program Coordinator (Rainbow groups are for self-advocates who are members of both the intellectual and developmental disability community and the LGBTQ+ community). Pictured right: James Meadours, Self-Advocate Survivor, Strategic Education Solutions.

James

  • I asked staff at my doctor’s office what they would do if someone with IDD came to them for help after being sexually assaulted. They admitted they didn’t know what to do.
  • After one of my assaults, I asked for help, but no one knew the right places or resources in the community that could help me.
  • I visited my doctor’s office recently about a health care issue, and the nurse who was helping me wouldn’t slow down. She was in a rush. I wasn’t even told my diagnosis. I had to learn about it later at another doctor visit.

Pauline

  • There is a lot of miscommunication about how to report sexual violence and health care professionals not knowing what to do or not do.
  • As a transgender individual with IDD, I see and experience a lot of stigmas. Health care professionals think I’m not sexual because I have an IDD. They’ve told others they can’t be gay because they have a disability. Some health care professionals don’t feel comfortable using our pronouns.
  • Health care professionals often don’t look at or talk to their patients with IDD but will talk to their support person, parent, or other caregiver instead.
  • It’s really hard to find a therapist who will talk about transgender issues and who takes Medicaid. Transportation is also hard to find. It’s hard to find someone near me. It feels like I’m going through this all by myself.

We believe change can happen when health care professionals get to know us as human beings and listen to what we need.

Here are some ideas that doctors, nurses, and others can keep in mind to help communicate better and have more authentic connections and conversations with patients with IDD:

  • Listen and believe us! When people with disabilities have just experienced the most significant trauma of their lives, it is incredibly painful and lays additional trauma on top of the original trauma if we are not listened to, heard, and believed. The system that is set up to help us ends up re-victimizing us.
  • Have an open mind and be sensitive to us no matter what our disability or sexuality is. Please use our correct pronouns. It helps us feel “seen.”
  • As frontline health care workers, please learn about resources and agencies in the community that can help survivors with IDD and share those with us. We need to know how to find therapists who have experience working with survivors with IDD, including those in the LGBTQ+ community. We need to find support groups that can include us, even if we need accommodations to be included.
  • Don’t make assumptions about us. People with IDD are sexual, just like many people without disabilities! We may be straight, gay, or transgender. There’s a lot of diversity in the disability community.
  • Keep educating yourself about this silent epidemic! Learn about the data. People with IDD are more likely to experience sexual violence. In fact, they experience it at seven times the rate compared to people without disabilities.
  • Some of us may be afraid to speak out about sexual violence if it reveals our sexual orientation. We may not be ready to come out because we are afraid and lack support. Help us feel safe.
  • Normalize conversations with patients about sexuality, especially with those who have IDD. We want to talk about things like what is sexual violence; how to prevent sexual violence; and where to get help from people or agencies that understand the IDD community.
  • Give us information in plain language that is easy for us to understand. Use pictures so that we can understand if we have trouble reading something.
  • Ask if your office can get training on this topic from your local disability advocacy group, self-advocacy group, or LGBTQ+ advocacy community. We want to give the training ourselves because this means no one is putting words in our mouths. It also helps health care providers relate to us.

The Talk About Sexual Violence project trains health care providers about ways to ensure their appointments with survivors with IDD are accessible. We need your help to educate as many health care providers as possible about how important it is to use a trauma-informed care approach.

Taking action is important. Please share this blog and the Talk About Sexual Violence training tools with others, and sign the pledge to prevent sexual violence. YOU can be the change!

A young man with disabilities and his mom sit outside in a park. The mom is looking over at the son, holding his arm lovingly.

Barbara Advocates for Her Son Jake Because His Life Depends on It

A young man with disabilities and his mom sit outside in a park. The mom is looking over at the son, holding his arm lovingly.Barbara’s son Jake is a medically complex young adult living at home with his parents. Jake relies on Medicaid to provide the services he needs to be medically safe and supported at home, including continuous skilled nursing and personal care assistance (PCA).

To be eligible for these services, Jake undergoes an annual assessment. This determines the number of support hours that are medically necessary for him to live safely at home and not in an institutional setting. Living in the comfort of his own home—and getting his medical, social, emotional, and recreational needs met, surrounded by loved ones—is important to Jake and a top priority for his family.

When Jake receives the support he requires, it is also of significant benefit to the state, since providing support for medically complex individuals at home is far less costly than residential or institutional placements. When the system works as it is intended to, everyone wins.

Currently, Jake is authorized to receive over 50 hours of continuous skilled nursing and over 70 hours of PCA services per week. The problem is there is a significant shortage of home-based nurses and caregivers for individuals like Jake, so only a small percentage of his authorized hours are staffed.

For several years, less than 10% of Jake’s nursing hours and less than half of his PCA hours have been filled. It is not uncommon for Jake’s parents to go days or weeks without help.

So, what happens when families can’t find appropriately trained staff and states can’t meet the mandate of filling authorized hours with reasonable promptness?

For Jake’s parents and for other families caring for medically complex pediatric and adult children living at home, it means the burden of care typically defaults to family members, putting an immense strain on families.

For Barbara and her son, the toll is significant. In Barbara’s words:

“I am Jake’s mother and guardian but, by necessity, I am also a full-time caregiver, routinely performing the duties of a nurse, personal care assistant, and home health aide. Having my son at home is not a burden, but providing the care he needs without the help that he is due is taxing at best and unsustainable and dangerous at worst.

I am typically ‘on duty’ 24/7, providing clinical care without any qualification or expertise other than lived experience. The relentless task of providing full-time care results in chronic sleep deprivation, exhaustion, and isolation. There are no days off. If I am not directly providing care, I am managing the endless list of duties that support our fragile infrastructure: recruiting help, managing prescriptions, ordering medical equipment and supplies, making and attending medical appointments, ensuring assessments and care plans are up to date, and working with multiple agencies and providers.

The low rate of pay offered to nurses and other homecare providers offers little incentive to pursue these jobs and is not competitive with less-taxing, higher-paying positions. Not being able to offer attractive, competitive pay commensurate with the expected level of skilled care that needs to be provided forces families to hire less qualified help out of desperation. This puts the lives of our children at risk. We should not be forced to lower the bar at our loved one’s expense.

Not having skilled care providers in our home means more frequent and costly ambulance calls, emergency room visits, and hospitalizations. It also means that parents routinely need to make critical, ‘in the moment’, medical decisions without direct guidance or support from trained clinicians who know their child well. Making the wrong decision could mean the difference between life and death. Imagine, living with the burden of that responsibility. [Jake’s] life is in my hands, every single day.”

The occurrence of a global pandemic exacerbated a chronic nursing shortage. It also shed a greater spotlight on the unique challenges faced by parents who care for medically fragile children at home. While the pandemic has wound down for many, for families like Barbara’s, the parameters under which it forced us all to live will continue. The challenges she faces of keeping her son safe, home, and alive remain a daily struggle, and the shortage of qualified caregivers persists. These families are in crisis, and they need help.

Barbara hopes that sharing her story will encourage other families to do the same. “Advocacy starts with creating awareness. Through telling our stories, we find and build community. Through community, we build strength and increase the power of our advocacy. At all levels, we are facing a crisis and our voices need to be heard and acknowledged. As a country, we can and must do better. Our children’s lives depend on it.

A mother and son at a boyscout event

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

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.

The Arc logo

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Importance of Testers to ADA Enforcement

If testers are stripped of standing, the result will be less private enforcement of the ADA, a less accessible society, and the continued exclusion of people with disabilities from community life.

Washington, DC – Eighteen leading disability advocacy organizations have filed a “friend-of-the-court” brief in the U.S. Supreme Court in Acheson Hotels v. Laufer, a case that will decide whether testers—disabled people who investigate compliance with the Americans with Disabilities Act (ADA)—have the ability to sue businesses for discrimination when their rights under that law are violated. The case is scheduled to be heard on October 4, 2023.

Civil rights testing—intentionally investigating and challenging discrimination—has been used as an effective tool of enforcement since the 1950s, helping ensure that public accommodations were integrated and housing discrimination, challenged. Congress included the same enforcement tools when it passed the ADA in 1990 that it had included in these earlier civil rights laws, and testing has proven to be an essential enforcement tool in this context as well.

Deborah Laufer is one such tester. She is a person with disabilities who has filed numerous cases against hotels for violating an ADA regulation that requires hotels to include certain information about accessibility features in their online reservation systems. Ms. Laufer is a “tester” in her cases because she voluntarily puts herself in a situation to experience discrimination—specifically, she visits hotel websites to investigate compliance with the reservation rule—and when denied the information to which the ADA regulations entitle her, she challenges that discrimination in court and seeks to make the hotels comply with the law.

Despite acknowledging that they were, in fact, violating the ADA, hotelier Acheson doesn’t think that tester standing is fair, and argues that people like Ms. Laufer should have an immediate plan to stay at a hotel before they can challenge the hotel’s discrimination. Acheson asks the Supreme Court to reverse a First Circuit opinion upholding discrimination claims brought against them by Ms. Laufer as a tester.

The brief of amici opposes Acheson’s request and defends testing as essential to the enforcement of the ADA, arguing that eliminating tester standing would frustrate the ADA’s goal of equality of opportunity. Amici discuss how the indignity of unequal treatment has long been recognized as the sort of harm that can be remedied in court and explains how an individual’s motive, or status as a tester, does not change that. Amici also dispel a number of false claims made by Acheson and its supporters about ADA litigation.

“People with disabilities face rampant inaccessibility and discrimination that impacts every aspect of their lives—from travel to employment to health care and everything in between,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc of the United States. “Despite the ADA’s promise to create equal access, insufficient oversight and enforcement means that businesses frequently ignore the civil rights of disabled people, making their daily lives extremely difficult and undermining the rights guaranteed by the law. ADA testers are essential to ensuring the rights of people with disabilities are enforced and protected and that the full promise of the ADA is realized.”

“If individuals with the fortitude to take on the burden of ADA litigation as testers are stripped of standing, the result will inevitably be less enforcement of the ADA, frustration of its goals, and the continued exclusion of people with disabilities from community life,” said Michelle Uzeta, Deputy Legal Director at the Disability Rights Education and Defense Fund.

“Given that the ADA was signed into law more than 30 years ago and thousands of businesses remain inaccessible to people with disabilities, it is critically important the Supreme Court affirms the ability of testers to investigate compliance,” said Marlene Sallo, Executive Director of the National Disability Rights Network. “Testers ensure that travelers with disabilities do not discover their hotel is inaccessible when they show up at the door.”

“By the time a disabled person attempts to patronize a noncompliant public accommodation, it’s too late for a lawsuit to be much use,” added Amy Robertson, Counsel for Amici at Fox and Robertson, PC. “Systemic investigation by those protected by the ADA can accelerate society’s progress toward a time when they and others can go about their daily lives expecting—and attaining—access to a wide range of facilities and services.”

Amici are represented by attorneys Karla Gilbride, Amy Robertson of Fox & Robertson, PC, Justin Ormand of Allen and Overy LLP, Thomas Zito of Disability Rights Advocates, and Michelle Uzeta of Disability Rights Education and Defense Fund.

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

About Disability Rights Education & Defense Fund: The Disability Rights Education & Defense Fund (DREDF) is a national, nonprofit law and policy center led by people with disabilities and dedicated to advancing and protecting the civil and human rights of disabled people. Founded in 1979 by people with disabilities and parents of children with disabilities, DREDF remains board- and staff-led by members of the communities for whom it advocates.

About National Disability Rights Network: The National Disability Rights Network works in Washington, DC on behalf of the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), the nation’s largest providers of legal advocacy services for people with disabilities.

Media Contacts:
Jackie Dilworth, The Arc, dilworth@thearc.org
Tina Pinedo, DREDF, tpinedo@dredf.org
David Card, National Disability Rights Network, press@ndrn.org