Disparities in Data Collection Methods

While there is little data available about sexual violence (SV) within the U.S., even less is known about SV among people with intellectual or developmental disabilities; however, known prevalence rates indicate epidemic levels of sexual violence across the nation. Sexual violence victimization prevalence rates for people with intellectual or developmental disabilities (IDD) is estimated to be as high as 65-98% over the course of a lifetime (Elman, 2005; Valenti-Hein & Schwartz, 1995). A 2013 brief by Vera Institute of Justice indicates children with disabilities are at greater risk for SV than those without disabilities and “children with intellectual and mental health disabilities appear to be most at risk, with 4.6 times the risk of sexual abuse as their peers without disabilities” (Smith & Harrell, 2013, p. 4). National Public Radio in a January 2018 expose on sexual violence for people with IDD revealed “The rate of rape and sexual assault against people with intellectual disabilities is more than seven times the rate against people [age 12 or older] without disabilities. Among women with intellectual disabilities, it is about 12 times the rate” (Shapiro, 2018a). Gender-based analyses by Vera Institute of Justice (2017) found “men with disabilities experience domestic and sexual violence at rates higher than their counterparts without disabilities” (Hastings & Harrell, 2017, p. 1). Little is known about the risks of SV for queer and trans people with disabilities, however, there is data to show “One in two transgender individuals are sexually abused or assaulted at some point in their lives” (Office for Victims of Crime, 2014, p. 42). 

There is little agreement among academic papers on prevalence rates for people with intellectual and/or developmental disabilities (IDD), because data is just not widely available. The data that is available, though, indicates sexual violence occurs across the human lifespan (Wilkins, Tsao, Hertz, Davis & Klevens, 2014) and is perpetrated against humans of all genders, however, victimization rates among groups with less social power (trans people, people with disabilities, youth, people of color and women) seem to be higher than those with some social power (men). Abuse of people with IDD is at unacceptable levels: the rate of all violent crimes against people with cognitive disabilities is 63% (NCCJD, 2015). Disability is all but invisible in published research about sexual violence (SV) in the United States, including data about rates and prevalence of victimization and perpetration. Trauma such as sexual violence not only impacts the body (shown through the research correlation to disability), but it impacts areas of life outside health care. Metzler et al. (2016) in Adverse childhood experiences and life opportunities: Shifting the narrative argues early childhood adversity is linked to reduced opportunity for education, employment and “earning outcomes” across the lifetime and assert such reduction in access and opportunity to these fundamentals are “the determinants of life opportunity” negatively impacting multiple generations (p.2). Violence and trauma are not distributed equally through the population. Some populations suffer disproportionality more violence, including people with developmental and intellectual disabilities, however, current data collection methods exclude collecting or reporting data on this population contributing to a cavernous data gap between people who are part of the “general population” and those labelled with different forms of disabilities. National data collection efforts consistently exclude the “373,000 people who live in group homes” and “in state institutions — where other research shows the risk [for SV] is higher” (Shapiro, 2018b).

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What SV victimization/perpetration data are available about people with disabilities in the United States?

The 2010 National Intimate Partner and Sexual Violence Survey (NISVS) instrument asks the question: “Are any of your activities limited in any way because of physical, mental, or emotional problems?” and also requests participants rate their mental health from excellent to poor, but no disability data has been published or analyzed to this date (Department of Health and Human Services, 2016, H6, H9). Practitioners who use the NISVS data generally mention disability later in life caused by IPV (intimate partner violence)/strangulation leading to stroke, not human variation.

• The inclusion of adverse childhood experiences (ACEs) in nation-wide data collection efforts is an important process to help practitioners, violence preventionists, domestic and sexual violence advocates, and lawmakers understand the long-term negative health impact of trauma in people’s lives.
  • Statistical analysis of non-institutionalized adults who were under 18 and surveyed in the 2009 and 2010 BRFSS (Rose, Schüssler-Fiorenza, Xie, & Margaret Stineman, 2014) indicates sexual violence in childhood is correlated to “self-reported disability”;
    • Researchers found “Among the sexual abuse questions, those who reported having been forced to have sex more than once had the highest disability prevalence (49.5%).
    • For every individual ACE category, those who experienced the category had higher disability prevalence than those who did not. Sexual abuse had the highest disability prevalence (37.9%)” (p. 675).
• The national Youth Risk Behavior Surveillance System (YRBSS) surveys from 1991-2017 have historically included only two questions relating to disability and these questions are not asked in a consistent manner over time. In general, children with developmental or intellectual disabilities do not participate in national or state data surveys partially because the instruments are written in English, which is likely why the YRBSS is also not administered in ASL for Deaf children or in braille for blind children (Ludi et al., 2012).
  • In 2005, question 26 on the national YRBSS asked participants “Do you have any physical disability or long-term health problems?” and then in 2015 and 2017 the surveys asked participants “Because of a physical, mental, or emotional problem, do you have serious difficulty concentrating, remembering, or making decisions?” (Division of Adolescent and School Health, 2017).
  • YRBSS data in Indiana is only available for the years 2011 and 2015 and does not ask for data related to disability, nor does Indiana participate in implementing the ACEs module (Indiana State Department of Health, 2017). These data instruments only paint a partial picture of the impact of sexual violence in the United States.

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Primary Prevention of Multiple Forms of Violence & Protective Factors

There is mounting evidence from the last twenty years of targeted study of violence that suggests multiple forms of violence are connected and, therefore, efforts to prevent one form of violence may also impact the prevention of other forms of violence (Wilkins, Tsao, Hertz, Davis & Klevens, 2014). Connecting the Dots: An Overview of the Links Between Multiple Forms of Violence illustrates that child maltreatment, teen dating violence, intimate partner violence (IPV), sexual violence (SV), youth violence, bullying, suicide and elder maltreatment share risk factors—behaviors, norms and environments that increase the risks for violence perpetration and victimization—and protective factors, which have a “buffering” or protective effect against trauma and violence (Wilkins, Tsao, Hertz, Davis & Klevens, 2014, p. 9).

Wilkins, Tsao, Hertz, Davis & Klevens (2014) emphasize the importance of community collaboration to decrease shared risk factors among all forms of violence, increase shared protective factors and calls for coordinated responses to violence and services, including prevention (p.1). The conditions people live in either increase or decrease risk and protective factors for violence, so too do these conditions influence one’s decision to commit violence (Wilkins, Tsao, Hertz, Davis & Klevens, 2014, p.1). The conditions surrounding individuals—including norms, policies, and laws, but also the physical conditions of schools and neighborhoods, and the availability of necessities such as access to public transportation, nutritious food, higher education and employment (sometimes referred to as the social determinants of health) can increase or decrease the risk for sexual violence perpetration and victimization (Wilkins, Tsao, Hertz, Davis & Klevens, 2014, p.9-11).

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Sources

• The Arc’s National Center on Criminal Justice and Disability (NCCJD) (2015). Violence, Abuse and Bullying Affecting People with Intellectual/Developmental Disabilities. Washington, D.C.: The Arc.
• Armstead, Theresa L. PhD, Natalie Wilkins, PhDm Amanda Doreson, MPA. (2018) Indicators for Evaluating Community- and Societal-Level Risk and Protective Factors for Violence. Journal of Public Health Management and Practice, January/February 2018, Volume 24(1), S42–S50. Retrieved December 16, 2017: http://journals.lww.com/jphmp/Fulltext/2018/01001/Indicators_for_Evaluating_Community__and.7.aspx
• Division of Violence Prevention, National Center for Injury Prevention and Control, Division of Violence Prevention. (March 22, 2017). Sexual Violence: Data Sources. Retrieved January 21, 2018: https://www.cdc.gov/violenceprevention/sexualviolence/datasources.html 
• Division of Violence Prevention, National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. (2016). Preventing Multiple Forms of Violence: A Strategic Vision for Connecting the Dots. Atlanta, GA. Available January 22, 2018: https://www.cdc.gov/violenceprevention/pdf/strategic_vision.pdf 
• Elman, A. (2005). Confronting the sexual abuse of women with disabilities. National Online Resource Center on Violence Against Women. Retrieved October 9, 2014 from: http://www.vawnet.org/Assoc_Files_VAWnet/AR_SVDisability.pdf
• Hastings, Allison and Sandra Harrell. (October 2017). Sexual Victimization of Men with Disabilities and Deaf Men: A National Snapshot. Vera Institute of Justice. York, NY. Retrieved December 16, 2017: https://www.vera.org/publications/how-safe-are-americans-with-disabilities 
• Ludi, Erica BS, Elizabeth D. Ballard, MA, Rachel Greenbaum, PhD, Maryland Pao, MD, Jeffrey Bridge, PhD, William Reynolds, PhD, and Lisa Horowitz, PhD, MPH. (June 2012). “Suicide Risk in Youth with Intellectual Disability: The Challenges of Screening.” Journal of Developmental & Behavioral Pediatrics. 33(5):431–440, JUN 2012. Retrieved online June 12, 2016: http://journals.lww.com/jrnldbp/Abstract/2012/06000/Suicide_Risk_in_Youth_with_Intellectual.7.aspx 
• Metzler (RN, MPH), Metzler, Melissa T. Merrick (PhD),Joanne Klevens (MD, PhD, MPH), Katie A. Ports(PhD), Derek C. Ford (PhD). (2016). Adverse Childhood Experiences and Life Opportunities: Shifting the Narrative. Children and Youth Services Review, Volume 72, January 2017, Pages 141-149. Retrieved December 16, 2017: http://dx.doi.org/10.1016/j.childyouth.2016.10.021 
• Rose, MD, PhD, Sophia Miryam Schüssler-Fiorenza,  Dawei Xie, PhD, & Margaret Stineman, MD. (January 24, 2014). Adverse Childhood Experiences & Disability in US Adults. American Academy of Physical Medicine and Rehabilitation,6(8): 670–680. Published online 2014 Jan 28. doi: 10.1016/j.pmrj.2014.01.013. Retrieved January 21, 2018: http://www.pmrjournal.org/article/S1934-1482(14)00045-8/pdf 
• Shapiro, Joseph. (January 8, 2018a). The Sexual Assault Epidemic No One Talks About. National Public Radio. Morning Edition. Retrieved January 10, 2018: https://www.npr.org/2018/01/09/572929725/for-some-with-intellectual-disabilities-ending-abuse-starts-with-sex-edShapiro, Joseph. (January 8, 2018b). “NPR Investigation Finds Hidden Epidemic Of Sexual Assault.” Morning Edition. National Public Radio. Retrieved at: https://www.npr.org/2018/01/08/576428410/npr-investigation-finds-hidden-epidemic-of-sexual-assault
• Valenti-Hein, D. & Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. Santa Barbara, CA: James Stanfield Company.Wilkins, N., Tsao, B., Hertz, M., Davis, R., Klevens, J. (2014). Connecting the Dots: An Overview of the Links Among Multiple Forms of Violence. Atlanta, GA: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. Oakland, CA: Prevention Institute, p. 9. Retrieved December 16, 2017: https://www.cdc.gov/violenceprevention/pdf/connecting_the_dots-a.pdf 

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Credit

Post written by Cierra Olivia Thomas Williams, Prevention Specialist at Indiana Coalition Against Domestic Violence