As a sex educator who specializes in programs for youths with disabilities and their parents and teachers, Terri Couwenhoven is well acquainted with the anxiety that surrounds the subject of sexuality.
“Teachers are afraid of parents. They’re not sure how to say things; they’re afraid they’re going to make a mistake,” said Ms. Couwenhoven, who lives in Port Washington, Wis., and has a daughter with Down syndrome. Some parents are also uncomfortable raising issues of sexuality with their children, she said.
But ignoring the subject may increase the vulnerability of children with disabilities, who are statistically more likely to be victimized, researchers say. And advocacy groups are starting to coalesce around publicizing the sensitive issue and creating abuse-prevention strategies tailored to such children.
The silence around healthy sexual development, let alone sexual abuse, is a huge problem for this population, said Sandra Harrell, the director of the Accessing Safety Initiative, a project of the New York City-based Vera Institute of Justice. “It really just creates this environment where abuse is not only possible, it’s likely,” she said.
Her organization wrote aabout sexual abuse of children with disabilities, and plans to convene a roundtable discussion in August to consider a national prevention strategy.
Ain the British medical journal The Lancet offers one of the most recent attempts to assess the prevalence of sexual abuse among children and youths with disabilities. The report, published in 2012, aggregated the results of studies conducted in the United States and in other countries and found that 2- to 18-year-olds with disabilities were almost three times more likely than their typically developing peers to be sexually abused. Children and youth with mental or intellectual disabilities appeared to be at higher risk compared to those with other disability types, the researchers found.
Although the Lancet study’s authors said that the lack of well-designed studies on the topic made it difficult to draw definitive conclusions, the findings of their study were strong enough for them to assert that “children with disabilities in all settings should be viewed as a high-risk group.”
Another recent study attempted to dig more deeply into abuse that occurs in educational settings, by cataloguing demographic information from more than 300 people who said they, their child, or a child they knew was a victim of sexual abuse. That report,of the Journal of Child Sexual Abuse, found that survey respondents—most of whom were parents or caregivers of children with disabilities—said that the victimized students were more likely to receive most of their education in self-contained settings, and slightly more likely to suffer abuse from an adult at the school rather than from another student.
The survey results also found that:
• Fifty-three percent of the victims were identified as being from 6 to 13 years old when the abuse occurred.
• A majority, 55 percent, said the victim had significant cognitive disabilities, including classifications such as autism, intellectual disability, or multiple disabilities.
• The most frequent type of abuse, reported among about 68 percent of the survey respondents, was “comments, jokes, and gestures” of a sexual nature. Sixty-two percent of respondents reported “pinching, touching, or rubbing.”
• Forced intercourse was reported by 30 percent of respondents.
• “Teaching personnel” were identified as the abusers in about 30 percent of the cases. In all, adults—who include teachers, school administrators, therapists, and aides—were identified as the abusers in about 51 percent of the cases.
The survey respondents do not represent a random sampling of students with disabilities, and the researchers were not able to independently verify the survey responses. Nevertheless, study co-author Mary Lou Bensy, a former special education administrator for the Malverne., N.Y., district and currently an adjunct assistant professor of special education at Hofstra University in Hempstead, N.Y., hopes the findings serve as a wake-up call for administrators.
“Our children have a right to be informed, and in a position where they can protect themselves,” Ms. Bensy said.
A variety of factors make children and youths with disabilities targets of abusers, experts say.
Many of these young people interact with more adults, and in more intimate ways, than their other peers do. They may have aides to assist them in toileting, bus drivers and aides to get them to and from school, or therapists who work to address mobility-related disabilities.
In addition, students with disabilities are often coached to be compliant with adult requests. And sometimes a perpetrator of abuse may be another student with a disability who may also have problems with appropriate boundaries.
Schools don’t always adapt their human-growth and -development instruction for students whose cognitive age may not match their physical maturity, said Ms. Couwenhoven, the Wisconsin-based sex educator.
“Whatever they’re teaching the typical kid, they should also be figuring out a way to present that information to students with cognitive disabilities,” she said. “Why wouldn’t they also be providing the same thing to a population of students who need the information way more than the typical kid?”
Assessing the Risks
The caveats around most of the research into sexual abuse of youths with disabilities illustrate how difficult it is to pin down specifics about the problem, said Jesse Krohn, a staff attorney with Philadelphia Legal Assistance, a legal-aid firm, and the author of the“Sexual Harassment, Sexual Assault, and Students With Special Needs: Crafting an Effective Response for Schools,” published this year in the University of Pennsylvania Journal of Law and Social Change.
Ms. Krohn said she also had trouble finding reliable information on the prevalence of such abuse. And in her anecdotal experience, school reaction to abuse cases seems to vary depending on the mind-set of the administrators—sometimes they act quickly, and other times they are slower to respond.
The federal law known as Title IX prohibits sex discrimination in federally funded educational programs, and courts have found that sexual harassment and assault of students that deprives them of access to education can be a Title IX violation. Schools are required to have Title IX coordinators, and teachers should be trained in these issues, Ms. Krohn said.
“For example, what does consent mean when we’re talking about students with disabilities? This is something that schools are just starting to pay attention to,” she said. “I used to be a public school teacher, and I don’t recall ever having training on how to deal with abuse or bullying.”
The provisions of the Individuals with Disabilities Education Act, specifically a “stay put” provision that bars a school from moving a student with a disability until a dispute between his or her parent and the school is resolved, is another complicating factor, Ms. Krohn said. She cited as an example a case she worked on in which a student with a disability was bullying his ex-girlfriend. Moving the student with the disability is a potential IDEA violation, but moving the victim could result in a violation of Title IX.
“Sometimes, the solution has to be a complex one,” Ms. Krohn said.
Meg O’Rourke, the director of strategic initiatives for the Chicago Children’s Advocacy Center, an abuse-prevention organization, said she is starting to see more conversation about the topic of sexual abuse and sex education for students with disabilities, through her organization’s partnership with Stop it Now! in Northampton, Mass., a group with a similar mission.
It is challenging for her organization to get into schools because professional-development time is so limited, Ms. O’Rourke said. But she said that parents should take the lead and have clear and direct conversations with teachers and caregivers about sexuality and potential abuse.
Her organization collaborated onaimed at parents. But schools should also be prepared to answer some of the questions the fact sheets raise, she said, such as details about any abuse-prevention efforts, privacy protections, and empowerment of youths to recognize and reject improper behavior and advances, and to report uncomfortable situations.
“You can’t assume that the school is doing what you hope might be happening,” Ms. O’Rourke said.
A version of this article appeared in the July 10, 2014 edition of Education Week