It’s been more than two years since an incapacitated woman was raped and later gave birth at Hacienda HealthCare, a long-term care facility in Phoenix. But a new report says more work still needs to be done to prevent sexual violence against people with intellectual and developmental disabilities. 

Erica McFadden is the executive director of the Arizona Developmental Disabilities Planning Council. Her group commissioned the report to understand what’s happening now and what are best practices when it comes to preventing sexual abuse. Researchers talked to families, law enforcement and providers.

"It looks like we are kind of where we were around the days of Hacienda. Now there is more awareness based on the responses; it looks like that the vendors are doing more training on abuse recognition.

But the biggest gap, she said, is making sure those living with disabilities and their families are trained to recognize and report it.

McFadden says many parents want to have these conversations, but it’s a touchy subject.

"They're [families] lacking developmentally appropriate material, on how to talk about healthy relationships, how to talk about boundaries."

She also said children with disabilities are growing up in a culture of compliance — in other words, they're taught to follow directions and commands. So, really, the work is helping children and adults with intellectual and developmental disabilities to know when not to comply. And, for some with intellectual and developmental disabilities, it can be very confusing. Some require help with personal needs — like dressing, toileting and bathing. 

"And so when somebody is touching them in that same place, it's hard for some of them to understand, 'Is that what are they supposed to be doing that?' 'Are they helping me with something?'" said McFadden. "For some of our population, they may not understand when it is appropriate for them to do that."

Which is why she said, conversations about what is OK and what is not should happen starting at an early age.

That’s where Jason Snead comes in. He works with McFadden. Snead has a disability, and he along with other self-advocates, created resources about these issues. 

"It covers our relationship relationships, abuse, sex and different support systems, as well as how to communicate with your doctor or a medical professional," he explained. 

The resources are in plain language, he said, so easy to understand. They include videos, booklets, websites, as well as a training directory for families and providers.