#MeToo: Helping Women with Intellectual and Developmental Disabilities Talk Openly About Sexual Violence with Health Care Professionals

Sexual Violence Healthcare ProfessionalPrompted by recent news events, women everywhere are speaking up and sharing accounts of sexual violence. Social media feeds have been so inundated with tales of unwanted personal sexual encounters that it has sparked an online media campaign, punctuated by #MeToo. However, women with disabilities may face greater barriers to talking about their own experiences on social media or elsewhere. That’s why, before this hashtag went viral, The Arc’s National Center on Criminal Justice and Disability® (NCCJD®) and The Board Resource Center (BRC) teamed up to highlight the alarming rate of sexual assault among women with intellectual and developmental disabilities (I/DD). Just this fall these two organizations, with the assistance of a one-year grant from The WITH Foundation, unveiled the Talk About Sexual Violence webpage that includes videos and other resources dedicated to building the capacity of health care professionals to empower female patients with I/DD to talk about and prevent sexual assault.

Research shows that nationally, 1 in 5 women without disabilities are sexually assaulted. However, women with disabilities face even grimmer statistics. According to the Bureau of Justice Statistics, the rate of violent victimization (which includes rape or sexual assault) of people with disabilities is more than three times higher than the rate for people without disabilities. A related survey conducted in 2012 found that out of over 7,000 respondents, only 37.3% of people with disabilities reported any type of victimization to authorities. Many societal factors have allowed this disturbing pattern to continue, including inexperience among health care professionals in broaching the topic of victimization in ways that are accessible and culturally competent for everyone.

Recognizing that health care professionals are in frontline positions to educate their patients about sexual violence, NCCJD® and BRC created easy-to-use resources to address this issue. The materials provide straightforward guidance on how to start a simple, direct and honest conversation with female patients about an all too common experience, and include two short videos: “How to Have the Conversation” and “Kecia Meets with Her Doctor”, available in both English and Spanish. Accompanying the videos are a variety of supplemental materials, including training and communication guides.

These resources are invaluable in the fight against sexual violence of women with I/DD, but the first line of defense is simply believing woman with I/DD when they disclose sexual assault, and listening to their experiences. The goal of The Arc’s Talk About Sexual Violence project is to support women with I/DD to be heard, believed, and supported by receiving prompt and effective medical care and healing services. Every woman deserves a safe environment to honestly admit “MeToo,” and to protect herself from sexual violence.

Sexual Abuse of People with I/DD a Global Scandal

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development  and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To  increase parents’ understating of  the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.



This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).