Sexual violence is a social problem that affects the lives of millions of people around the world. Among the individuals affected, people with developmental disabilities are at a greater risk of victimization (Davis, 2009). Due to the nature of their disabilities, incidents of sexual violence towards these individuals have often gone unreported, thus resulting in an inaccurate prevalence rate (West Virginia Foundation for Rape Information and Services, 2013). Within the last 30 years, social workers in the field of trauma have strived to bring about widespread awareness concerning this issue. Professional, state, government, and social service agencies have all taken steps to address sexual violence towards people with developmental disabilities. A variety of discourses have thus been used to understand sexual violence in an attempt to end the victimization of such a vulnerable population.
In discussing sexual violence towards people with developmental disabilities, it is first critical to define key terms like ¡°sexual violence¡± and ¡°developmental disability.¡± According to OASIS (2011), ¡°Sexual violence refers to sexual activity where consent is not obtained or freely given. It occurs any time a person is forced, coerced or manipulated into any unwanted sexual activity¡± (para. 1). Sexual violence may be physical or non-physical and includes a range of nonconsensual acts including sexual assault, rape, attempted rape, ritual abuse, incest, child molestation, fondling, threats, sexual harassment, sexual exploitation, sexual exposure, and inappropriate sexual language. Using sexual violence as a weapon, perpetrators often aim to subjugate their victims by means of domination, humiliation, and mental or bodily harm. Sexual violence can occur within the home or outside of it, such as on the job, on transportation systems, in group homes¡ªvirtually anywhere (Davis, 2009).
According to Patchner and DeWeaver (2013), the Developmental Disabilities Assistance and Bill of Rights Act of 1990 states that a developmental disability is a ¡°severe, chronic disability of a person five years of age or older, which is attributable to a mental or physical impairment, or a combination of both¡± (p.2). The developmental disability manifests before the individual is 22 years old and the disability is likely to continue indefinitely. Significant functional limitations ¡°occur in three or more areas including self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency¡± (Patchner & DeWeaver, 2013, p.2). Individuals with developmental disabilities often need special services that most commonly continue throughout their lives.
Studies have shown that because of these fundamental impairments, people with developmental disabilities are at a higher risk of victimization from sexual violence than people without a disability. Sullivan and Knutson (as cited in Davis, 2009) studied approximately 55,000 children in Nebraska and found that children with intellectual disabilities were four times as likely as children without disabilities to be sexually abused. In 2012, The Lancet published a systematic review and meta-analysis study of children with special needs and concluded that children with developmental disabilities were 2.9 times more likely to be sexually assaulted as compared to children without a developmental disability; this review also showed that the prevalence of sexual violence among children with mental or intellectual disabilities was 15% (Jones et al., p. 903). Although the victimization rates dropped between 2000 and 2012, the difference is still significant when comparing the two populations. Furthermore, among adults with developmental disabilities, 83% of females and 32% of males are victims of sexual assault and 49% of these victims will experience 10 or more abusive incidents in their lifetime (Johnson, 2000; Valenti-Heim & Schwartz, 1995).
Reasons for High Victimization
Two main factors that contribute to an increased risk of victimization amongst this population are the type and severity of an individual¡¯s impairment. Keilty and Connelly (as cited in Davis, 2009) exposed the barriers faced by people with developmental disabilities when they make a statement to the police about sexual violence:
People with severe intellectual disabilities may not understand what is happening or have a way to communicate the assault to a trusted person. Others with a less severe disability may realize they are being assaulted, but do not know that it is illegal and that they have a right to say no. (p. 2)
Another factor that increases risk is the nature of the influence a perpetrator has on an individual with a developmental disability. This individual may receive threats from the abuser to not tell anyone, or the abuser may be a person whom the individual trusts, such as a caregiver, family friend, or field professional. A final factor is the abdication of responsibility by the outside community in decreasing the victimization of this population. When reporting sexual violence, children with developmental disabilities face a stigma that may limit their credibility with the police and caregivers (Davis, 2009). Due to ignorance about sexual violence towards this population, children and adults with disabilities are also rarely educated about sexual topics. This lack of sexual knowledge consequently leaves people with developmental disabilities defenseless in understanding what is happening and if it is wrong. Moreover, caregivers may be aware of the sexual violence but fail to tell authority figures about the abuse.
Results from one study showed that only 3% of sexual abuse cases involving people with developmental disabilities are ever reported (Valenti-Heim & Schwartz, 1995). These results imply that everyone with a developmental disability is potentially at risk. These individuals become targets, which leads to a history of trauma throughout their lives, affecting their quality of life, behaviors, perspectives, and resiliency; in some cases, the severity of the disability can also worsen if an individual also develops psychological stress from Posttraumatic Stress Disorder (PTSD) (Sequeira, Howling, & Hollins, 2003). Victimization has the ability to affect a person¡¯s right to live, right to happiness, right to a life free of discrimination, and right to control what happens to his or her body. Therefore, when one person¡¯s human rights are violated by an act such as sexual violence, the problem becomes an issue that concerns society as a whole.
Agencies Dedicated to Stopping Victimization
Social service and government agencies have made strides in addressing the issue of sexual violence towards people with developmental disabilities. The New York State Justice Center for the Protection of People with Special Needs was opened in 2013 by the Cuomo administration in response to a New York Times article which revealed shocking allegations of abuse by staff against the residents of group homes run by the Office for People with Developmental Disabilities (OPWDD). State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5% were referred to law enforcement (Hakim, 2011). Hundreds of cases also revealed that employees who sexually, mentally, or physically abused residents were transferred to other state-run homes instead of being terminated. Working as both a law enforcement body and social advocate for people with developmental disabilities, the Justice Center claims to have ¡°the strongest standards and practices in the country for protecting the safety and ensuring the civil rights of persons with disabilities and special needs¡± (Wise, 2013). Its website also includes a list of the responsibilities of the Justice Center, which include, but are not limited to, advocating on behalf of people with special needs, investigating allegations, maintaining statewide databases, operating a 24/7 hotline for allegations, and maintaining a ¡°Staff Exclusion List.¡±
There are also several social service organizations that advocate for individuals with special needs who have experienced acts of violence. One such organization is The Arc, which for over six decades has promoted and protected the human rights of people with intellectual and developmental disabilities. This community-based organization, which receives its funding from federal grants and private donations, has advocated for the passage of state and federal legislation on behalf of people with disabilities, conducted research, started programs and services, and has ¡°more than 140,000 members and nearly 700 state and local chapters nationwide¡± (Davis, 2009, para. 2). As knowledge increases about sexual violence towards people with developmental disabilities, more and more agencies have dedicated themselves to advocating for the rights of this population.
Models for Understanding the Trauma
Social workers practicing within the field should be aware of the effects of sexual violence on individuals with disabilities. Foy (1992) looked at PTSD by using an Etiological Hypothesis model which focused on the relationship between adverse life events, including sexual violence, and consequent psychological distress (such as PTSD). Foy contended that the existence of an additional variable (in this case, a developmental disability) can increase the risk of a person potentially developing PTSD from a traumatic event because some disabilities have symptoms, such as anxiety, which are capable of independently causing distress within a person. When a traumatic event combines with this additional variable, the already at-risk individual becomes more susceptible to developing PTSD. This emphasizes and supports the theory that people with developmental disabilities are at greater risk of developing PTSD from a traumatic event such as sexual violence because of the stress and impairments the disability has already created for the individual.
Another way of approaching this topic is through the lens of the biological model as outlined by Van der Kolk (2005). Through an epidemiological lens, this model examined the likelihood that individuals, specifically children, would develop PTSD in response to an extreme traumatic event. The study proved that individuals with disorders of extreme stress not otherwise specified (DESNOS) had a greater risk of developing PTSD compared to children without DESNOS because of the increased duration of stress. The individuals become less able to modulate the stress response in their brains because of the longtime exposure to trauma. This model thus emphasizes this population¡¯s vulnerability to developing PTSD due to the psychological distress that they may experience from symptoms of their disability.
Previous Attempts to Address This Issue
Bowman (2010) conducted a study in which a sexual abuse prevention training program for those working directly with individuals with developmental disabilities was developed, implemented, and evaluated for efficacy. Bowman was inspired by Furey and Keharhahn, who surveyed 874 managers and supervisors across four states who employ individuals with developmental disabilities. Their surveys indicated that these employers lacked basic knowledge about abuse, perpetrator characteristics, and facts about potential victims. Furthermore, their limited knowledge and negative attitude about people with developmental disabilities was seen as a contributing factor in the abuse. As a result, Bowman studied the efficacy of providing a four-hour workshop for 124 developmental disabilities service providers which was focused on enhancing their knowledge of sexual abuse. Participants were asked to complete a pretest before attending the workshop and a posttest immediately after the workshop was over. The results indicated that participants showed a statistically significant increase in their knowledge of this subject; however, scores were still relatively low, with an average of only 60% correct at the posttest. This research suggests that in order to educate people working with developmentally disabled populations about sexual abuse, more intensive training programs would have to be developed. Bowman (2010) argued that ¡°If staff lack knowledge about what constitutes sexual abuse or believe that people with developmental disabilities do not deserve education about sexuality and sexual abuse, their clients may be more at risk for victimization¡± (p.125). This lack of knowledge speaks to the subjugation of the developmentally disabled population that can occur when individuals in the community are not educated about the risk of victimization.
Social workers and other professionals working with developmentally disabled survivors of sexual abuse have implemented prevention strategies to avoid the victimization of others within this population. Organizations like Life After IEPs, which is a resource center for parents and mentors of people with developmental disabilities, have compiled resource pages of organizations knowledgeable in the intervention and prevention of sexual abuse among this population. This organization has developed the Sexuality and Disability Consortium, which emphasizes the importance of ongoing communication with kids about their bodies, boundaries, sexuality, and relationships. This intervention provides guidance for parents in fostering dialogue about sex with their children, including creating a safe and welcoming environment to talk about sex, taking advantage of ¡°teachable moments,¡± and being proactive instead of reactive.
In the organization Circles, social workers approach this issue by directly educating people with disabilities about sexual abuse. They utilize a technique called the ¡°Circle Model,¡± which explicitly categorizes types of relationships. The circle model then outlines characteristics of each relationship type, including the appropriate degree of physical touch and personal space. A set of concentric color-coded circles represents a type of relationship, each with a particular set of physical boundaries (Mazzoni, 2012). This method is concrete, easily comprehensible for people with developmental disabilities and encourages a sense of control and empowerment within the individual.
Finally, another prevention technique, and arguably the most important, is to encourage people to report the abuse. Although professionals like social workers may be mandated reporters, other individuals working directly with developmentally disabled populations, like family members, coworkers, and supervisors may not be trained in ways of reporting abuse. Therefore, the organization Autism Speaks provides a list of at least five hotlines for people to call when someone has been a victim of sexual violence. Unfortunately, it is difficult to determine the effectiveness of these approaches due to the fact that within the last five years, little evidence-based research has been conducted on this topic.
In thinking critically about this social problem, it is important for social workers to implement interventions that integrate all approaches to addressing sexual violence towards people with developmental disabilities. The etiological hypothesis model, developed by Foy (1992), outlines how an additional variable, such as a developmental disorder, can increase the risk of a person developing PTSD when exposed to a traumatic event. Therefore, social workers should be mindful of creating inventions tailored specifically to the needs and vulnerability of people with developmental disabilities.
Possible interventions could include implementing sexual education about risks of abuse and how to avoid it, beginning as early as kindergarten and in a way that is developmentally appropriate for this population. Creating interventions developed from the epidemiologic lens, as outlined by Van der Kolk (2005), can also be useful for social workers. This lens states that individuals with disorders of extreme stress are less able to modulate stress responses in their brain due to long-term exposure to trauma. Therefore, people with developmental disorders may not be able to report or respond appropriately to sexual violence as effectively as people without a developmental disability. Another possible intervention could involve training service providers working directly with this population to identify abuse that has occurred. However, it is also important to ensure that clients¡¯ knowledge is not subjugated within this process of creating interventions. In creating these interventions, social workers in this field must encourage members of the affected population to tell their own stories, define themselves, and bear witness to their own experiences. Through this process, they will become empowered, be able to own their own truths, and know their knowledge has begun to be validated and legitimized (Hartman, 1992).
As social workers continue their work with people with developmental disabilities who have experienced sexual violence, it is important to remember several key points about this social problem. The first is that it is okay for victims and families to feel upset, frustrated, angry, and sad about their abuse. Often times, professionals want to solve the problem by diminishing an individual¡¯s pain. However, this could lead to the suppression of knowledge from this population. The second key point to remember is the size and scope of this issue and that sexual violence is a problem that can affect everyone in society. The third key point is how critical it is to use education as a means of social change. For those working with developmentally disabled populations, it is imperative to create a safe environment conducive to providing developmentally appropriate education about this issue. It is also important to educate those directly working with this population about the increased risk this population faces and the steps they can take to prevent that abuse. Finally, the most critical point is the power of reporting abuse. As mentioned earlier, incidents of sexual violence towards individuals with developmental disabilities often go unreported. Therefore, in order to reduce the risk of re-victimization, people need to be aware of how effective reporting abuse can ultimately be. Although more research still has to be done about this issue, is it society¡¯s responsibility to protect the human rights of individuals with developmental disabilities.
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About the Author
Katelyn Howell is a first year graduate student at the Silberman School of Social Work at Hunter College where she is studying Clinical Practice with Individuals, Families, and Groups, with a Health and Mental Health focus. Ms. Howell¡¯s previous work with children and adolescents who have been sexually abused has solidified her passion for working with youth who have endured traumatic life events. She holds a Bachelor of Arts in Psychology and Sociology from Stony Brook University. Katelyn can be reached at Katelyn.Howell96@myhunter.cuny.edu.