In 1962, Dr. C. Henry Kempe published an article on “Battered Child Syndrome” in the Journal of the American Medical Association (JAMA), discussing his findings of children brought into the emergency rooms. He took X-rays of broken bones and discovered many old fractures. He showed a pattern of injuries that was incontrovertible evidence of child physical abuse.
Thus began the child abuse movement with its focus on response, research and prevention. Identification of other types of child abuse followed, including: emotional, verbal, sexual, and neglect in the physical and emotional realms. Hundreds of thousands of research projects have been conducted studying myriad aspects of child abuse.
One would hope that the same interest in child abuse would expand into investigation of the specialized area of children with disabilities. That has not happened.
Only two federally-funded studies on the incidence of child abuse of children with disabilities have been conducted to date. The first was congressionally mandated with the findings published in 1991. The Westat research group found that children with disabilities were abused at 1.7 times the rate of generic children. The research team reviewed the records of 36 Child Protective Services agencies across the nation.
While their findings were based upon these records, we believe their findings were flawed because these agencies did not systematically record whether or not a child had a disability. This changed only when a child began school and it was easier to document a disability. The authors concluded that most children with disabilities are unlikely to experience abuse until age 5. If this data is as flawed as it seems, flawed conclusions can result
The silver lining of this effort was it showed that the federal government considered people with disabilities important and it showed something that many of us knew: children with disabilities are abused at a higher rate than generic children.
The second federally-funded prevalence study, published in 2001, found that child abuse among children with disabilities was 3.4 times the rate of generic children – twice the rate found one decade earlier. This study, conducted by researchers at Boystown, Nebraska (Sullivan and Knutson) used three different approaches to data gathering, and the findings were in line with the estimates of experienced practitioners. No similar studies have been conducted on adults with disabilities.
Other prevalence studies have found increases in abuse of people with disabilities but this data is extremely difficult to collect. The result is that we have no current and reliable data on the prevalence of abuse of people with disabilities and this situation isn’t likely to changc any time soon.
The National Survey on Abuse of People with Disabilities, conducted by The Arc of Riverside County and the Disability and Abuse Project, seeks to expand the information currently available on the life experience of individuals where abuse and disability intersect.
This is not a prevalence study but a survey that asks various groups to detail their experience with abuse. We want to know whether they have experienced abuse (a survey question for people with disabilities and/or their family members), the type of abuse experienced, who perpetrated it, whether or not it was reported, what happened when it was reported and many other issues that may reveal ways to improve the status quo.
Despite all the studies, regulations, laws and other measures to combat abuse of people with disabilities, we have difficulty seeing any improvement in the way abuse is handled over the last few decades.
We are seeking survey responses from individuals with disabilities, their family members, advocates, representatives, teachers, therapists, forensic interviewers, law enforcement officers, attorneys (prosecutors, defense and other attorneys), judges, probation officers, and anyone whose lives or professions bring them into contact with individuals with disabilities.
We encourage you to help us spread the link to this survey throughout the Internet via websites, Facebook pages, emails, online communities and by any other means. One of the wonderful benefits of social media is its reach and that it allows us to make contacts with large numbers of people with the same interests and issues that even a few years ago were much more difficult. We plan to use this aggregate data that identifies no single individual to move us forward in our thinking and our strategies for combatting a problem that receives considerable attention but lacks meaningful positive change.
Thanks in advance for your participation.
(To take the survey, click here.)
Dr. Nora J. Baladerian is a clinical psychologist and Director of the Disability and Abuse Project of Spectrum Institute. Jim Stream is the Executive Director of The Arc of Riverside County.