Abuse and Neglect of Children with Disabilities

Abuse and Neglect of Children with Disabilities

National Resource Center for Respite and Crisis Care Services - June 19, 2003

Background JoAnne, a fourteen-year-old girl, lives in a skilled nursing facility. She has profound mental retardation and multiple disabilities, including seizure disorder and cerebral palsy. She requires assistance for all her daily living activities. When she was discovered to be eight months pregnant, facility staff reported suspected child abuse. The perpetrator was never identified. Of the remaining ninety-eight residents living in the same facility, over 80% tested positive for a variety of venereal diseases. Child abuse and neglect was identified as a "national epidemic" in the 1991 report of the U.S. Advisory Board on Child Abuse and Neglect. In 1993, the National Committee to Prevent Child Abuse (NCPCA) determined that approximately 2.9 million children were identified and/or reported as victims of child abuse and neglect throughout the United States. Until recently, however, the number of children with disabilities who have been abused and neglect has not been well documented.

In November, 1993, the National Center on Child Abuse and Neglect (NCCAN) released a study regarding the abuse of children with disabilities. This first national effort to determine the incidence of abuse among this population found that children with disabilities are abused at approximately twice the rate of children without disabilities (WESTAT, 1993). Other studies document an increased risk of abuse for children with disabilities between four to ten times that of the generic population (Baladerian, 1990). All forms of abuse, including multiple types of abuse with the same child, multiple perpetrators of abuse, and multiple victims within a grouping of children, are found within the population of children with disabilities. The vast majority of the perpetrators are well known to the abuse victim. Perpetrators may include family members and service providers such as teachers, doctors, administrators, direct care providers, therapists, and transportation providers. Abuse Can Cause Disabilities Sammy, now thirteen years old, had mild mental retardation and cerebral palsy. In counseling he revealed that he was thinking about his future, including marriage and parenthood. Afraid that his children would "be retarded like me," he was asked the cause of his disability. "I was born normal. My Dad used to come home drunk and get real mad. I remember he would throw me against the wall. My head hurt a lot. This happened all the time, when I was little. Now I'm retarded." Although Sammy understood the origin of his disability, he did not understand genetics or heredity. When told that his children would probably be born just like he had been, he was happy. He said, "I would never hurt my kids like my Dad [did] (sic)." In addition to the fact that children with disabilities are at increased risk of abuse is the fact that child abuse can cause disabilities. The exact number of abuse-caused disabilities is unknown, but it is estimated to represent 25% of all developmental disabilities (Baladerian, 1992). In addition, more than 50% of the child victims of severe neglect sustain permanent disabilities, including mental retardation and other forms of learning and cognitive disabilities. According to a 1990 study, 53% of child abuse related fatalities were children under one year of age, and 90% of the children were under five years of age (April 1994 Carnegie Report). Head trauma is the leading cause of death for children who die from child abuse (Michael Durfee, 1994). It is unknown how many more children suffer "near misses" and retain serious permanent disabilities due to head and neck trauma. Specific causes of brain and other central nervous system injuries may result from the "shaken baby syndrome," blows to the head (e.g., slapping, hitting, child tossing), as well as asphyxiation (due to suffocation or strangling). Identification The signs of abuse characteristic of children in the general population are pertinent to children with disabilities. These signs include the following: physical injuries including unexplained bruises, welts, broken bones, burns frequent unexplained injuries aggressive or withdrawn behavior unusual fears craving for attention wary of physical contact afraid to go home destructive to self and others poor social relations fatigue lack of concentration unusual knowledge of sex Unfortunately, for children with severe disabilities, discovery of their abuse is usually dependent upon the emergence of incontrovertible physical signs (e.g., death, pregnancy, venereal disease, physical injury) and/or obvious behavioral signs (e.g., sudden changes in behavior that re-enact the abuse). Less obvious behavioral signs do not necessarily alert the untrained caregivers to possible abuse. Even more problematic is that professionals providing services to children with disabilities have too often attributed clear signs of abuse to a disability. This oversight has left children in abusive situations, in some cases for several years. In addition, many people have difficulty believing that children with disabilities can be victims of abuse and neglect. This misperception creates an exaggerated level of vulnerability, as children with disabilities, and their families, are not prepared psychologically, intellectually, or physically to resist or respond to abuse. One woman, who has a severe disability, recently stated that, "until as an adult I was sexually abused, I never thought that persons with disabilities were rape victims. I'd never heard of it. Of course I know about sexual abuse, but it never occurred to me that people with disabilities were abused. I was so naive." Prevention Parents of children with disabilities often receive a lot of information about disabilities, child care, child development, and community resources, but are rarely prepared or trained on the subject of physical or sexual abuse or neglect. While abuse prevention programs exist in various forms throughout the country, these are rarely offered to children with disabilities and their families. When programs are offered, they are not always age appropriate, as when programs designed for younger children are presented to older children with disabilities. Programs that are designed with the "No-Go-Tell" concept as their base are not, in general, useful for the child with a disability. These programs teach children to tell the potentially abusive adult, "No!," then to go to someone they trust, and tell them about the other adult's behavior. Telling an adult, "no," is difficult for any child; children with disabilities, however, may have even greater difficulty as they are usually taught to strongly respect the authority of almost any adult or person who is "in charge." In addition, most persons who abuse children with disabilities are in positions of trust, authority, and relationship with the children (e.g., parents, professionals, paraprofessionals, or other family friends). Thus the ability to socially resist an abuse is diminished. So, what does work? First, the parents and family members of children with disabilities should be informed that their children, like other children, are at risk. Frequently parents, and the children themselves, believe that due to the disability they cannot become abuse victims. Second, parents should talk directly to their children about abuse awareness, and develop a communication cue that will alert the parent that something has happened. Parents need to be empowered to take firm action to apprehend the identified perpetrator. Many children with disabilities can benefit from self defense programs with individually tailored defense and response techniques, depending on the child's disability. Programs are in effect all across the country, and in Europe, teaching self defense techniques to children with intellectual, communication, mobility, and sensory disabilities. Practicing communication cues and self defense techniques is important. Equally important is teaching and implementing assertion and personal empowerment skills. If a child is only encouraged to be assertive when and if an assault is in progress, success is unlikely. Only when the child is assertive in all areas of life can it be expected to be successful in the face of assault. Unfortunately, in many cases a child cannot stop or avoid the abuse. In these cases, the child and parents must be encouraged to "do everything possible," which may include identifying the event as abuse and reporting it immediately. Such a response can be empowering for both the child and the family, ameliorating the effects of the abuse itself. Challenges to Effective Intervention Recently the fields of child abuse protection and disabilities have begun to recognize their common interest in working to prevent abuse of children with disabilities. Both fields have much to learn to become competent to deal with the specific issues of abuse for this population. This collaboration is thought by many to be the key to successful intervention and amelioration of maltreatment of children with disabilities. In reducing the risk of abuse for children with disabilities, and in providing effective and sensitive intervention services, professionals will need to develop working relationships in a structure that allows for cross referral, cross training, consultation across a variety of agency lines, and increased accessibility and understanding for the disabled community. This will require changes for both abuse protection and disability service agencies. Increasingly child abuse response professionals, program administrators, and the law enforcement community are seeking skills to help in the identification, reporting, interviewing, and adjudication of suspected child abuse for children with disabilities. With this interest and a matching commitment on the part of funding sources, the specialized training they seek can be provided. Additionally, disability specialists and service providers are seeking the expertise of those in the child abuse community to learn how to recognize and respond effectively and appropriately to the epidemic of child abuse. Intervention includes a myriad of services, ranging from the initial observation and report taking to assessment and interviewing, placement, court, treatment, and monitoring. As therapists skilled in providing treatment for severely disabled abuse victims become more available, CPS workers will more easily make referrals for the children they serve. These changes will take time, but with increasing interest in this population, and the availability of good training programs as well as models for inter-agency collaboration, it is likely that these changes can be in place in the near future. Recommendations States may want to follow the leadership of Florida, Washington, and California, where some legislation and activities are in place to address the issue of abuse of children with disabilities. For example, in California the state chapter of the National Committee to Prevent Child Abuse (NCPCA) has attempted to develop liaisons at the local, state, and national levels by writing to all NCPCA chapters alerting them to the problems of child abuse and neglect for children with developmental disabilities. They have encouraged the chapters to contact their State Councils on Developmental Disabilities to establish working relationships. A similar letter was sent to each of the State Councils. In the past five years, awareness of the problem of abuse and neglect of children with disabilities has begun to increase. It is important to foster greater awareness of this issue. This can be done through comprehensive public awareness campaigns by adding a few critical facts to the generic child abuse awareness campaigns. Child abuse happens to children with disabilities. Child abuse and neglect can cause disabilities. Children with disabilities can resist abuse attempts when given information and skills development training. Parents of children with disabilities can learn to distinguish signs of abuse and disability related problems. Children with disabilities are competent to communicate their abuse experience. Children with disabilities can be acknowledged as credible witnesses to their own experience. Summary The problem of abuse of children with disabilities is a serious issue, but is still not largely recognized by service agencies. Prevention and abuse awareness programs need to include information about the heightened risk of abuse of children with disabilities, and the onset of a permanent disability as a consequence of abuse. The utilization of training programs for children, parents, families, and child abuse response and disability services providers, will play a unique and critical part in the reduction of risk for children with disabilities. Reference List Westat Corporation. (1993). The Incidence of Maltreatment Among Children with Disabilities. Washington, DC: NCCAN. Baladerian, Nora. (1990). Overview of Abuse and Persons with Disabilities. Culver City, CA: Disability, Abuse and Personal Rights Project, SPECTRUM Institute. Baladerian, Nora. (1991). "Sexual Abuse of People with Developmental Disabilities." Sexuality and Disability, Vol. 0, No. 4, Human Sciences Press. Durfee, Michael J., M.D. (1994). Personal Communication. Los Angeles, CA. Resources Disability, Abuse and Personal Rights Project, SPECTRUM Institute, P.O. Box 65756, Los Angeles, CA 90065, (310) 391-2420, Ext. 333. Produces annual national conference on abuse and persons with disability; conducts research and produces reports on abuse and disability; provides training and produces training materials for both abuse response service providers and disability related service providers. Provides advocacy services for persons with disabilities related to civil rights and abuse related issues. National Center for Child Abuse and Neglect (NCCAN) The incidence study on maltreatment of children with disabilities is available from: Clearinghouse on Child Abuse and Neglect Information, P.O. Box 1182, Washington, DC 20013, 1-800-394-3366. National Coalition on Abuse and Disability, P.O. Box "T," Culver City, CA 90230-0090, (310) 391-2420, FAX (310) 390-6994. This provides a quarterly newsletter and has approximately 250 members whose work includes or specializes in abuse and neglect of children with disabilities. There is no charge for membership. Annual meetings are held in conjunction with the NCPCA Conference. About the Author Nora J. Baladerian, Ph.D., is a licensed psychologist who has dedicated her professional interests over the past twenty years to the issues of children and adults with disabilities. She has authored over fifty articles and handbooks, and has presented hundreds of seminars and workshops, training those in both the disabilities and abuse response communities in the effective intervention, amelioration and risk reduction of abuse of children with disabilities. ARCH Factsheet Number 36, Sept., 1994 This fact sheet was produced by the ARCH National Resource Center for Respite and Crisis Care Services funded by the U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth and Families, Children's BureauCooperative Agreement No. 90-CN-0121 under contract with the North Carolina Department of Human Resources, Mental Health/Developmental Disabilities/Substance Abuse Services, Child and Family Services Branch of Mental Health Services, Raleigh, North Carolina. The contents of this publication do not necessarily reflect the views or policies of the funders, nor does mention of trade names, commercial products or organizations imply endorsement by the U.S. Department of Health and Human Services. This information is in the public domain. Readers are encouraged to copy and share it, but please credit the ARCH National Resource Center.