Preventing and Addressing Sexual Violence Against People with I/DD

To close Sexual Assault Awareness Month (SAAM), we are sharing this letter from Alison Barkoff, who leads ACL, Jeff Hild, who leads the Administration for Children and Families, and Admiral Rachel Levine, the HHS Assistant Secretary for Health, which was written to improve support for people with intellectual and/or developmental disabilities who experience sexual violence – and to prevent it from occurring.

The letter and the list of recommendations it references were sent to HHS-funded programs, including rape crisis centers, behavioral health programs, violence against women health program initiatives, and those that serve people with I/DD and are now posted on ACL’s website (as a combined PDF).

Dear Colleague,

April is Sexual Assault Awareness Month (SAAM) and a time to renew our commitment to preventing sexual assault and supporting those who have been victimized.

This April, the Administration for Community Living, the Office of the Assistant Secretary for Health, and the Administration for Children and Families are issuing this informational memo about sexual violence against persons with intellectual and developmental disabilities (I/DD). This letter aims to raise awareness of the disparities people with I/DD experience that can put them at greater risk for sexual assault and provides guidance and resources that help advocates and other care providers recognize sexual violence and improve services for survivors.

According to the CDC’s National Intimate Partner and Sexual Violence Survey, over half of women and almost a third of men have or will experience a form of unwanted sexual contact in their lifetimes. While statistics vary, a higher prevalence of sexual violence against persons with disabilities is well-documented, and an estimated 2 in 5 female victims of rape are reported to have a disability at the time of assault. A recent study from the American Journal of Preventive Medicine found that women with I/DD experience approximately double the proportion of sexual violence experienced by nondisabled women, and that the prevalence of physical violence is approximately three times higher for women with cognitive disabilities and four times higher for women with multiple disabilities when compared to nondisabled women. Similarly, men with disabilities are more likely than men without disabilities to experience sexual violence in their lifetime, including attempted or completed nonconsensual sex.

The impact of sexual violence is distressing for anyone. However, because people with I/DD experience a wide range of additional disparities (e.g., health, economic, educational, social) and face barriers in accessing services and supports, including those for survivors of sexual violence, the experience may be that much more traumatic.

People with I/DD may be scared to come forward about sexual violence, especially if perpetrated by a caretaker or authority figure, because it could lead to negative consequences related to accessing the care that supports their independent living. Individuals with I/DD may not be believed when they make a report or disclose sexual assault because of incorrect assumptions others made about their capabilities. Individuals with I/DD and individuals with communication disabilities may have trouble understanding or conveying what is happening to them and may be unable to clearly communicate non-consent. People with I/DD also often do not receive any sex education and, if they do, it can be inadequate. As a result, people with I/DD may have difficulties recognizing that they are being abused, and therefore may not report it when it happens.

Survivors with I/DD may face additional challenges receiving crisis support services because many service providers lack adequate training on supporting victims with I/DD, including training on survivor-informed care. As a result, they do not have the information and knowledge needed to plan for serving a diverse population with accessibility needs. For example, rape crisis centers may not have accessible buildings or services, such as having victim advocates who can effectively support people with I/DD with different communication needs. Without proper planning and protocols in place, they may not know how to support victims with I/DD reporting abuse.

Sexual Assault Awareness Month challenges public health and human services professionals to both reflect on these barriers to care and recommits us to our obligation to send a lifeline to all who need it, including people with I/DD. HHS programs and the Department’s grant recipients are often the first stops for individuals in need of assistance. HHS funded organizations include rape crisis centers, domestic violence organizations, Centers for Independent Living, Protection and Advocacy Systems, University Centers for Excellence in Developmental Disabilities, State Councils on Developmental Disabilities, and Community Treatment and Service Centers, all of which provide critical resources that help victims with I/DD to lead their healthiest and fullest lives.

Building and maintaining collaborations between the federal government and national and state networks that work on these issues is critical to improving individual and population-level outcomes. We recommend that health and human services professionals improve their capacity to serve survivors with I/DD by:

• Building relationships between domestic violence programs, sexual assault programs, tribes, culturally specific organizations and disability organizations to facilitate collaboration and training;
• Learning what works for prevention of sexual assault and domestic violence;
• Providing technical assistance to ensure programs are compliant with relevant disability laws and best practices in sexual violence response services;
• Developing advocacy and case management protocols that ensure designated staff are available to assist survivors with I/DD whenever possible;
• Developing trauma-informed facilities and services for persons with disabilities; and
• Involving survivors with lived experience in designing services to meet their needs.

We are pleased to share a list of sexual violence prevention and response resources, some of which are specific to individuals with disabilities, to help your organizations build these critical collaborations and learn more about this issue. We have organized these resources by recommendation.

We encourage you to utilize these resources and recommendations to start conversations within your organizations about this critical issue.

Thank you for all that you do to support victims of sexual violence and persons with I/DD not just this month, but throughout the year.

Sincerely,

Alison Barkoff
Administration for Community Living

Jeff Hild
Administration for Children and Families

Admiral Rachel Levine 
Assistant Secretary for Health