ADDPC Report: Large Gaps Exist in Reporting Abuse of People with I/DD

by Erica McFadden, Executive Director

When it comes to better ways to talk about sexual health and positive body boundaries for young Arizonans with developmental disabilities, families know something must change.

“We put our hands on children with disabilities more than neurotypical kids," one parent told us.  Another family member acknowleged it's extremely dangerous to simply teach young people with disabilities "compliance" without also teaching boundaries, safety and a sense of self.

These are just a few comments from concerned families in our recently released study “Sexual Violence/Abuse Against Individuals with I/DD: Best Practices and Lived Experience in Arizona.”

The Arizona Developmental Disabilities Planning Council funded the study to understand how the state has fared in preventing sexual violence among people with intellectual and developmental disabilities (I/DD).

In two years, researchers found there are a few signs of progress, such as a bit more training for service provider staff and better follow-through on certain policies aimed at preventing abuse. 

However, there is still a huge gap in providing information to those who need it the most – the individuals and their families.

Our latest report revealed these disheartening statistics:

• Less than half (42 percent) of day treatment providers agreed their internal policies actually share with people they serve just how and when to report sexual violence/abuse. This includes understandable visual aids written in simple language.
• Only one-third of day treatment providers report parents are trained on how to report abuse or neglect.
• About 50 percent of group homes report parental training related to reporting; however, none of the caregivers interviewed had experienced such training.

Individuals with I/DD and their families are still lacking key prevention information to promote their safety. Families need a variety of reading materials that are written in plain, accessible language at a developmentally appropriate level covering topics such as body boundaries, grooming and other unsafe behaviors, and what to do if you or someone you know experiences sexual violence/abuse.

In addition, as they approach the teenage years and beyond, families are struggling with balancing their loved ones need for dating, relationships and autonomy and how to keep them safe from perpetrators. “We’ve been extremely protective. We are not comfortable with her doing normal things like going to the movies. Honestly, we’ve stifled her growth,” said one caregiver as she lamented the struggle with safety as their loved one “grows up.” 

There's a huge need for kids and teens with I/DD to learn what is acceptable behavior and how to respond appropriately to others’ actions in environments where they are typically taught to comply with every direction. 

“We spend a lot of time making [individuals with I/DD] fit in,” said one caregiver, “and not enough time on who they are and helping them to develop a sense of self.”

Recognizing the significant information gap in the area of abuse, sexuality education, and healthy relationships that exists for individuals and families, the Arizona Sexual Violence & I/DD Response Collaborative developed two training and resource directories:

• The Training Directory is targeted to families, providers, and schools.

• The Self-Advocate Resource Guide is developed by self advocates for self advocates.

Both resources not only discuss abuse, but they also delve into developmentally appropriate healthy relationships and sexuality information that is needed by individuals and their families.

Creating cultures of compliance will not protect our loved ones from abuse. But with increased awareness and education, people with I/DD of all ages and their families will be more able to protect themselves and cultivate healthy relationships with their surrounding peers and adults.