People with intellectual and developmental disabilities (IDD) face disproportionately high rates of sexual assault, yet too many health care providers are still not trained to respond well when survivors come forward. The Arc’s Transforming Health care Project is working to change that.

April is Sexual Assault Awareness Month, a time to confront a reality that doesn’t get nearly enough attention: people with IDD are sexually assaulted at seven times the rate of people without disabilities. Health care settings should be places where survivors are met with safety, clarity, and support. Too often, they’re not.

When health care providers aren’t trained to communicate accessibly, recognize abuse, or respond in trauma-informed ways, survivors with disabilities can be dismissed, misunderstood, or left without the support they need. That’s not just a training gap. It’s a health care access gap.

That’s where The Arc’s Transforming Health Care Project comes in. Through The Arc’s National Center on Criminal Justice and Disability, in partnership with the World Institute on Disability (WID) and chapters of The Arc in Massachusetts, Oregon, and Philadelphia, the project is examining how health care training can better prepare providers to respond to sexual violence against people with IDD. The project is also seeking to ensure that people with lived experience are leading training efforts within health care. The goal is straightforward: help build health care systems where people with disabilities are believed, respected, and supported.

Why Health Care Response Matters

Sexual violence is already underreported. For people with disabilities, the barriers can be even higher. Some survivors may not have been taught what sexual violence is. Some may not have the language to describe what happened. Some may fear they won’t be believed. And some may have already experienced a lifetime of being talked over or dismissed in medical settings. When providers are unprepared, those barriers grow.

This isn’t about blaming individual clinicians. Most providers enter health care because they want to help people. But they work in systems shaped by short appointments, productivity demands, and uneven training. In those conditions, signs of abuse can be missed. Disclosure can be mishandled. A survivor may finally speak up and still leave without real support because the system wasn’t built to meet the moment.

For survivors with disabilities, that failure can have lasting consequences. A health care visit may be one of the few places where someone has the chance to disclose abuse, ask for help, or begin to feel safe. When that moment is missed, the harm doesn’t end with the appointment.

What The Arc’s NCCJD Is Doing

The Transforming Health Care Project is focused on changing how providers are trained, so they’re better equipped to respond when patients with disabilities disclose sexual violence. The project is assessing existing health care training programs and developing recommendations grounded in three priorities: cultural humility, sexual violence awareness, and leadership by self-advocates. The project is developing guidelines that will promote cultural humility, people with IDD as co-trainers, and safe, respectful, inclusive health care.

That matters because better care starts with better preparation. Providers need tools that help them communicate clearly, slow down when needed, respond without assumptions, and create conditions where patients with IDD can share sensitive experiences safely. They also need to understand that people with disabilities are the experts in their own lives and should direct their own care.

As Dawn Skaggs, Chief Programs Officer at the World Institute on Disability, shares, “This work centers the leadership and lived expertise of people with disabilities and moves us closer to a health care system that is truly accessible and inclusive.”

Led by People With Disabilities and Survivors

What sets this project apart isn’t just the subject matter. It’s the leadership model.

People with IDD aren’t being treated as subjects of reform. They’re helping lead it. The Transforming Health Care Project is guided by a 12-member advisory board co-led by two people with disabilities, including a person with IDD who is a sexual assault survivor. The board brings together people with IDD, survivors of sexual abuse, and health care professionals. Advisory board members with IDD are compensated for their time and expertise, reinforcing a simple but too often overlooked truth: lived experience is expertise.

Members do much more than review materials. They are shaping recommendations, challenging assumptions, and helping define what respectful care should actually look like in practice. That means the final guidance will not be built around theory, but around actual lived experience. It will reflect the experiences of people who know firsthand what it means to seek care, disclose abuse, and navigate systems that were not designed with them in mind.

One of the project’s co-facilitators is Taylor Woodard, Manager of Information & Referral at The Arc of the United States. Taylor, who has a developmental disability, explains the significance of that space: “I truly value being part of a team bringing the health care challenges and concerns of a community that has historically been overlooked by the medical profession to the forefront. I leave each meeting knowing our members feel listened to, some for the first time in their lives.”

For many advisory board members, being heard in a setting where decisions are actively being shaped is new. Taylor emphasizes that leadership must remain central to lasting change: “Disability justice initiatives must be directed by people with disabilities. Centering disabled leadership is the only way we will obtain equality alongside our fellow citizens without disabilities.”

What Change Could Look Like

The long-term goal of this project is better care when it matters most.

When the final guidelines reach the health care community, the hope is that providers will be better prepared to listen, respond appropriately, and respect the autonomy of patients with IDD who disclose sexual violence. That includes communicating clearly, taking disclosures seriously, and recognizing that survivors with disabilities shouldn’t have to fight to be believed or to direct their own care.

Taylor puts it this way: “When medical professionals read the guidelines and realize how much people with disabilities want to direct their health care, I hope they will quickly integrate the advisory board’s recommendations into their practice. I also hope they will listen to and respect people with IDD, or anyone for that matter, who comes forward to report sexual violence.”

Advisory board member Fran Hladysz, a person with IDD and a survivor of sexual abuse, also points to the importance of inclusion across disability experiences: “Just because I have a disability, that doesn’t mean you should treat me differently or less. I like that [the Transforming Health Care Project] involves all different types of disabilities because we need to make sure that we get the best treatment that’s possible for us and the best health care.”

The Transforming Health Care Project advisory board is also being positioned as a public-facing force in health and hospital coalition work, offering a model other organizations can learn from. As Taylor noted, “The Arc has provided a model for elevating leaders with IDD that other organizations can and should replicate.”

Why This Work Cannot Wait

Sexual Assault Awareness Month shines a light on sexual violence each April, but this work can’t begin and end with one month of attention. People with disabilities deserve health care systems that are ready to meet them with dignity all year long. They deserve providers who know how to respond. They deserve to be heard the first time.

The Transforming Health Care Project guidelines are expected to be released in fall 2026. They will reflect the leadership, expertise, and lived experience of the people most directly impacted and lay the groundwork for more responsive health care practices.

Meaningful change in health care will take more than awareness. It will take training, accountability, and a willingness to rethink who gets treated as an expert. This project starts from the right lens: people with disabilities and survivors are not at the margins of the solution. They’re leading it.

Need help now? The Arc’s NCCJD offers resources on talking about sexual violence with people with IDD. Please contact us by filling out this form or email us at NCCJDinfo@TheArc.org. If you or someone you know has experienced sexual assault, RAINN’s National Sexual Assault Hotline is available at 800-656-HOPE (4673) and an online chat is available 24/7.