Trauma-Informed Care for People With IDD: What It Means and Why It Matters
Trauma-Informed Care for People With IDD: What It Means and Why It Matters
From the IDD Perspectives Webinar featuring Dr. Karyn Harvey and Dr. Craig Escudé on Trauma-Informed Care
When someone with an intellectual or developmental disability (IDD) acts out, eats too fast, lashes out, or shuts down, our first instinct is often to ask: What’s wrong with them?
Dr. Karyn Harvey, a psychologist with nearly 40 years of experience supporting people with IDD, says we need to ask a different question entirely: What happened to them?
That shift — from labeling behavior as a problem to understanding it as a response — is at the heart of Trauma-Informed Care. This Trauma-Informed Approach, or Trauma-Informed Care (TIC), focuses on understanding what happened, addressing the underlying causes of behavior, and promoting healing and well-being. For supporters, direct support professionals, clinicians, supervisors, administrators, care teams, and family members, that shift matters because people with IDD experience trauma at disproportionately high rates and seeing behavior through a trauma-informed perspective can change support, relationships, and quality of life. The following parts of this blog will discuss how common trauma is in people with IDD, where it comes from, how common trauma is in people with IDD, the key principles of Trauma-Informed Care that support recovery, and the trauma-informed practices organizations can use to put it into daily care.
Trauma Is More Common Than We Think
For a long time, there was a prevailing assumption in the field: people with intellectual disabilities are somehow less affected by trauma than the general population. The research tells a very different story, and trauma has a widespread impact on physical and mental health across a person’s life, including in many people who have experienced trauma without ever receiving a formal diagnosis.
According to the Bureau of Justice Statistics, people with intellectual disabilities are seven times more likely to experience sexual abuse than people without disabilities. An international study found that one in three adults with IDD will encounter some form of sexual abuse in their lifetime. And Dr. Julie Gentile, a psychiatrist who runs a specialized clinic for people with IDD, reports that PTSD is not only underdiagnosed in this population — it’s likely the most common mental health diagnosis she sees. Trauma can also contribute to mental illness, post-traumatic stress disorder, and higher rates of substance use or substance abuse, especially when prior traumatic experiences go unrecognized.
“People who have IDD are more impacted by trauma, rather than less,” Dr. Harvey explained during the webinar. “The research is now coming out supporting that.”
Part of why it goes undetected: the field has historically overdiagnosed conditions like psychotic disorders while underdiagnosing depression, anxiety, and PTSD — the very conditions most connected to trauma. Failure to recognize trauma can also reduce engagement, leading to missed appointments and poor treatment adherence across behavioral health services, mental health services, and other service systems.
Adverse childhood experiences, or ACEs, include abuse, neglect, and household dysfunction; they are linked to poor health outcomes in adulthood, and higher ACE scores are associated with greater PTSD risk.
Where Trauma Comes From
The sources of trauma for people with IDD are wide-ranging, and trauma exposure and traumatic experiences are shaped not only by single incidents but also by duration, context, and social interactions.
Abuse and exploitation are the most obvious. Sexual abuse — including peer-to-peer and staff-to-individual abuse in congregate settings — remains alarmingly common. Physical abuse, bullying, and harassment are also pervasive. Dr. Harvey noted that nearly everyone she has worked with has, at some point, been called a derogatory name or been the target of bullying.
Exclusion and marginalization cause deep wounds of their own. As the late disability advocate Mel Baggs once said, “Rage is nothing in comparison to erasure.” To not be seen, not be heard, not be counted — this is its own form of trauma, one that accumulates over a lifetime of being left out.
Ableism — systemic discrimination against people with disabilities — shows up in everything from school policies to medical settings. Dr. Harvey described families who received repeated pressure from their physician’s office to terminate a pregnancy following a prenatal diagnosis of Down syndrome. “That is institutional ableism,” she said, “and people with Down syndrome are aware of it.” Less obvious experiences, including microaggressions, can also cause further harm and become re-traumatizing over time.
Institutional trauma is another category that often goes unrecognized. Consider something as seemingly simple as eating quickly. Dr. Harvey shared that she has worked with many people who stuff food or eat at a dangerous pace — a traumatic stress response, not a quirk — a behavior that can lead to choking. In five separate cases across her career, she lost clients because of it. In each case, the root cause was traced back to food deprivation in institutional settings, where meals were rushed, and food could be stolen. The rapid eating wasn’t a quirk. It was a survival strategy that never had a reason to stop, and re-traumatization can reactivate survival responses tied to a past traumatic event.
Loneliness and isolation are perhaps the most overlooked sources of vulnerability. When people don’t have meaningful relationships, they are at far greater risk of exploitation. Dr. Harvey shared the story of a woman named Tamika, who asked for one thing every year at her person-centered planning meeting: a boyfriend. That goal was repeatedly set aside. Eventually, a predatory man noticed her loneliness and exploited it — telling her the words she’d been longing to hear.
“The real source of vulnerability,” Dr. Harvey said, “was the isolation.”
Assume Trauma. Start There.
One of the most practical takeaways from the webinar: don’t wait for a diagnosis before applying a trauma-informed lens. Dr. Harvey’s recommendation is to assume trauma as a baseline, recognize traumatic stress symptoms, and understand behavior in light of past trauma and prior traumatic experiences.
Everyone with IDD has experienced some version of ableism, exclusion, or being devalued. Even the universal experiences of middle school — a mean comment, being left out — are amplified dramatically for students with disabilities who may experience versions of that every single day. PTSD symptoms, like a sense of defeat before even trying, negative beliefs about oneself, or emotional withdrawal, are common expressions of that accumulated experience. Trauma may also affect a person’s life across generations within a family system, especially for trauma survivors facing repeated exclusion.
“Bullying is trauma. Exclusion is trauma,” Dr. Harvey said simply.
What Recovery Looks Like
The good news — and Dr. Harvey was emphatic that there is good news — is that people heal.
Recovery from trauma, in her experience and in the research, rests on the key principles — of Trauma-Informed Care, including safety, trustworthiness, peer support, collaboration, empowerment, and cultural responsiveness:
Safety. People need to genuinely feel safe, not just physically, but emotionally. They need to know they won’t be mocked, dismissed, or ignored. Trauma-Informed Care actively works to avoid re-traumatization by creating safe environments and interactions for people receiving supports. When that safety is established, Dr. Harvey said, the transformation can be remarkable. She described a woman who had been labeled a “spitter” and arrived at a new agency with staff in protective gear. Once the team took time to understand her story — she had been suddenly removed from her home and separated from her daughter by child protective services — everything changed. “Once we listened to her, we realized there’s a beautiful person inside who just needs to know she’s going to be okay.”
Connection. Relationships are not a luxury for people with IDD — they are essential. The Harvard Study of Adult Development, which followed people across their entire lifespans, found that the happiest, most fulfilled people were those with the strongest relationships — not the wealthiest or most educated. Trustworthiness and collaboration matter here: relationships help us heal from trauma, bring us into the present, and protect us from future harm. This means actively supporting people with IDD to have friendships, romantic relationships, and community ties — not just paid supports — and building resilience and well-being, not just reducing symptoms.
Empowerment. People need a voice that is genuinely heard. Dr. Harvey emphasized that this includes people who communicate without words. “All behavior is communication,” she said, “but it shouldn’t have to be.” Investing in AAC (augmentative and alternative communication) technology, truly listening, and responding to what people are trying to communicate — this is Trauma-Informed Care in action. Empowerment also grows when peer support and cultural responsiveness are part of recovery, so people are supported in ways that fit their identities, histories, and communities.
Beyond Recovery: Post-Traumatic Growth
Dr. Harvey also spoke about what can happen after healing — something she calls post-traumatic growth. People who have survived significant trauma often develop deep wells of empathy and compassion. They can become exceptional friends, fierce advocates, and powerful peer supporters.
“Sometimes the trauma can become a superpower,” she said. “If you recover, if you move forward.”
Group therapy and peer support, she noted, are among the most effective interventions — not because professionals have all the answers, but because trauma survivors bring strengths, and peer support helps build resilience and healing.
What This Means for Organizations and Supporters
Trauma-Informed Care isn’t just a clinical framework for therapists. It’s a way of operating for care teams, medical professionals, mental health providers, and broader service systems and health systems, as well as direct support professionals, supervisors, administrators, and family members who support people with IDD. A trauma-informed organization aligns policies, environments, and daily trauma-informed practices with the goal of preventing re-traumatization.
Organizations need policies, safe environments, and ongoing staff training to recognize signs and symptoms of trauma in both patients and staff. Implementing TIC is gradual and typically takes three to five years, especially when systems update training, supervision, and policies. A few practical starting points:
- Provide relationship and sexuality education. Studies show that when people with IDD receive this education, rates of abuse go down. Organizations like Elevatus (formerly led by Katherine McLachlin) and Planned Parenthood have provided this kind of support.
- Re-examine staff roles. Staff are not caregivers, controllers, or substitute friends. They are coaches — people who help individuals build real, unpaid relationships in their communities.
- Ask “what happened?” before “what’s wrong?” Every behavior has a history. Understanding that history is the first step to supporting someone effectively and should also shape the person’s treatment plan through collaboration, not just assessment.
- Prioritize person-centered planning that actually centers the person — not just on paper, but in practice.
A Final Word
Trauma-Informed Care is not about lowering expectations for people with IDD. It’s about understanding where people have been — so we can better support where they want to go.
As Dr. Harvey put it: “People heal when they have real relationships, when they have the life they’ve dreamed of — even in a simple way. Having someone they can call up and just shoot the breeze with.”
That’s not a clinical goal. That’s just a life worth living.
