Page 5

2

Nature and Extent

Although individuals with disabilities have been victimized throughout history, today society is gaining new respect and concern for the civil rights of these vulnerable people. Still, as this process occurs, there are more questions than answers about the nature and extent of criminal victimization of men, women, and children with disabilities. This chapter draws primarily on the workshop papers by Ruth Luckasson, Patricia Sullivan, and Richard McCleary and Douglas Wiebe, as well as the workshop presentation by Mary Ann Curry and Laurie Powers. Brief biographies of the authors of papers summarized in this report can be found in the Appendix.

DEFINITIONS

What Constitutes a Disability?

Disabilities come in many forms, and definitions of disability relate to physical, cognitive, or behavioral characteristics, as well as to an individual's ability to perform specific functions. For example, the ability to see, hear, talk, walk, climb stairs, lift, and carry are considered in some definitions, and the ability to perform the tasks involved in independent living, such as housework, or to participate normally in schooling or other social contexts are considered in others. A person with a severe disability is unable to



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 5
Page 5 2 Nature and Extent Although individuals with disabilities have been victimized throughout history, today society is gaining new respect and concern for the civil rights of these vulnerable people. Still, as this process occurs, there are more questions than answers about the nature and extent of criminal victimization of men, women, and children with disabilities. This chapter draws primarily on the workshop papers by Ruth Luckasson, Patricia Sullivan, and Richard McCleary and Douglas Wiebe, as well as the workshop presentation by Mary Ann Curry and Laurie Powers. Brief biographies of the authors of papers summarized in this report can be found in the Appendix. DEFINITIONS What Constitutes a Disability? Disabilities come in many forms, and definitions of disability relate to physical, cognitive, or behavioral characteristics, as well as to an individual's ability to perform specific functions. For example, the ability to see, hear, talk, walk, climb stairs, lift, and carry are considered in some definitions, and the ability to perform the tasks involved in independent living, such as housework, or to participate normally in schooling or other social contexts are considered in others. A person with a severe disability is unable to

OCR for page 5
Page 6 perform one or more essential activities, requires some kind of assistive device, or needs assistance from another person to perform basic tasks. Census data from 1994-1995 indicate that about 21 percent of the U.S. population has some form of disability, and that among the 84 mil lion infants, children, and youth ages 0 to 21, 10 percent (8.4 million)— mostly those ages 6 to 14—have a disability. Census data also indicate that among children ages 0 to 14, 1 percent have a severe disability. Children and youth with emotional and behavioral problems that require residential treatment are a burgeoning population in the United States. Current estimates from the U.S. Department of Health and Human Services (1999) indicate that some 77,200 children and youth reside in psychiatric settings and group homes in this country and that an additional 70 million children and youth are in out-of-home care, including foster care and kinship care. Medical conditions requiring health care have been identified in 60 percent of children placed in foster care; children placed in care due to neglect have the greatest number of medical problems. On the basis of an analysis of the 1994 National Health Interview Survey-Disability Supplement (NHIS-DS), LaPlante and Carlson (1996) have estimated that 2 percent of the U.S. population has mental retardation or a developmental disability. This is known to be an underestimate, since these data do not include people in institutions, the correctional system, or the military. According to the Arc of the United States—an advocacy organization formerly called Association for Retarded Citizens of the United States—a review of a number of prevalence studies indicates that 2.5 to 3 percent of the general population has mental retardation or a developmental disability (Batshaw, 1997). Applying Batshaw's percentages to the 1990 census of the general population, the Arc of the United States estimates that 6 to 8 million people nationwide have mental retardation (Arc of the United States, 1998). Definitions Vary Because of the different definitions of disability, the population with disabilities is difficult to identify, and their victimization is difficult to measure. Different conceptual models have been proposed to understand disability in a variety of domains, especially health, education, and employment. Some of these explanatory paradigms describe disability as a personal problem caused directly by disease or trauma, and for which treatment or a

OCR for page 5
Page 7 cure is required. In others it is viewed as occurring within a social context; that is, disability is a socially created problem and is in fact a matter of the full integration of individuals into society (World Health Organization, 2000). The definition in the Crime Victims With Disabilities Awareness Act of 1998 appears comprehensive, but it is not characterized by the clarity and specification required for careful measurement. While the workshop discussion, in part, was organized around the statutory definition, that should not be taken to imply that research, especially the collection of prevalence and incidence data, should be driven by it. In her paper, workshop presenter Patricia Sullivan discusses disability under six categories or explanatory models to help account for differences in definition across the different domains discussed in the literature and embodied in the statutory definition. These categories include the medical model, the educational model, the legal model, the entitlement model, the cultural model, and the integrated model. They vary according to the services or needs of the individual seeking assistance for a particular disability, the needs of those collecting the information, and the estimates they produce of both disability and crime victimization. These models are not mutually exclusive. For example, both the medical and legal model consider medical and psychiatric problems, and both the educational and medical models consider health-related educational difficulties. The models underscore the problems involved in developing clear definitions on which to base data collection and research efforts. The difficulty of defining disability presents a formidable barrier and challenge to measuring the nature and extent of violence and abuse committed against those with disabilities. The Medical Model The medical model of disability pertains to maternal and child health and is predicated on the need to provide some type of health care service to children with developmental disabilities. According to the Bureau of Maternal and Child Health's definition, “children with special health care needs” are children with health problems that require more than routine and basic health care, and they include "children with or at risk of disabilities, chronic illnesses and conditions and health-related education or behavioral problems.” The definition also includes “children who have or are at increased risk for chronic physical, developmental, behavioral, or emo-

OCR for page 5
Page 8 tional conditions and who also require health and related services of a type or amount beyond that required by children generally.” The Educational Model The Individuals with Disabilities Education Act of 1997 (P.L. 105-17) mandates a free and appropriate public education for children with disabilities from birth to age 21. The act defines a child with a disability as one with “mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities.” Specific learning disability is further defined as “a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which disorder may manifest itself in imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations.” The act provides further definitions of the disabilities of infants and toddlers. During the 1993-1994 school year, some 5 million children and youth with disabilities in the United States received special education services. Children with behavioral/emotional problems, mental retardation, and learning disabilities accounted for 71 percent of the children who received special education services. Speech and language impairments constituted an additional 20 percent of these children with disabilities. The Legal Model The Americans with Disabilities Act of 1990 (P.L. 101-336) is the civil rights act of people with disabilities. The framers of this act estimated that some 49 million Americans have some form of disability, and that for 24 million of them, it is severe. Under the act, disability is defined as “a physical or mental impairment that substantially limits one or more of the major life activities of such individual, a record of such an impairment, and being regarded as having such an impairment.” This definition encompasses individuals with mental retardation, hearing impairment, and other health or physical impairments. Psychiatric disorders, such as depression, bipolar disorder, panic and obsessive-compulsive disorders, personality disorders, schizophrenia, and rehabilitation from drug use or addiction, are also included. However, some behavioral

OCR for page 5
Page 9 syndromes that may be classified as psychiatric disorders are not covered under the Americans with Disabilities Act, and those suffering from them would not be considered people with disabilities. These include sexual behavior disorders, compulsive gambling, kleptomania, pyromania, and current substance abuse. People engaging in these behaviors are not protected by the provisions of the act. The Entitlement Model Each year in the United States, Supplemental Social Security Income (SSI) benefits are provided to almost 1 million children age 18 and younger and 7 million adults age 19 and older. The SSI definition of disability for children requires "a child to have a physical or mental condition or conditions that can be medically proven and that result in marked or severe functional limitations.” Of the almost 900,000 children with disabilities who receive SSI, the majority live in households in which basic food, clothing, and shelter needs are lacking; some 40 percent are classified as mentally retarded; and 24 percent receive benefits for a mental disorder other than mental retardation. The Cultural Model Many individuals with disabilities consider themselves to be members of a minority group. As such, they are a diverse group whose membership numbers 49 million, making it the largest minority in the United States. Deaf and hard-of-hearing people, who represent about 1 percent of the population with disabilities, are unique in that they consider themselves to be a distinct subculture—their community has its own language (American Sign Language), folkways, and a sense of “peoplehood.” Many individuals with disabilities prefer not to be categorized in any manner as having a disability. The Integrated Model The National Center for Health Statistics houses the information gathered by the National Health Interview Survey on Disability (NHIS-D)—a survey created through the efforts of four federal offices and other organizations interested in maintaining the balance between social, administrative, and medical considerations involved in disability measurement. The sur-

OCR for page 5
Page 10 vey was designed to collect data that can be used to understand disability, to develop public health policy, to produce simple prevalence estimates of selected health conditions, and to provide descriptive baseline statistics on the effects of disabilities. The survey collects information on childhood disability status, but not on crime victimization, child abuse, or neglect. International Efforts The overlapping elements of the various models described in the Sullivan paper are brought together in a classification system developed by the World Health Organization to describe and measure disability in the context of health. The International Classification of Disability and Health (ICIDH-2) has as its overall aim the development of a unified and standard language and framework for the description of health states (including disabilities) for all people. It characterizes the components of health under three constructs: body functions and structures, activities at the individual level (embodying the capacities of individuals), and participation in society, which includes environmental factors or social contexts that influence behavior, ranging from a person's immediate surroundings to the general environment. While this system can be of utility to statisticians and researchers in their efforts to define developmental and other disabilities, its utility in defining a sampling frame (discussed in Chapter 4 ) for measuring crime against individuals with disabilities may be limited. This is because the ICIDH-2 does not classify people. Rather it conceives health and disability as a dynamic interaction between health conditions and environmental factors, describing the situation of each person (Internet http://www.who.int/icidh , October 31, 2000). EXTENT AND NATURE OF CRIMES AGAINST THOSE WITH DISABILITIES Currently, the two national crime statistics systems in the United States—the Uniform Crime Reports (UCR) of the Federal Bureau of Investigation (FBI) and the National Crime Victimization Survey (NCVS) of the Bureau of Justice Statistics (BJS)—do not identify those with disabilities. Thus, no base rate data on crimes against victims with disabilities are gathered (however, see Chapter 4 for a description of current BJS efforts to address the data collection requirements of the Crime Victims with Dis-

OCR for page 5
Page 11 abilities Awareness Act of 1998). In addition, the major child maltreatment databases mandated, compiled, and maintained by the federal government lack data on victimization of children and youth with disabilities. This lack of documentation is a major barrier to understanding the scope and nature of violence and maltreatment of infants, toddlers, children, and youth with disabilities. Even if the UCR recorded whether the victim had a disability, the data problem would not be solved because most crimes are not reported to the police at all. For example, in 1997, among all populations, only 37 percent of all crimes were reported to the police (Bureau of Justice Statistics, 2000). The percentage is even lower for stigmatized crimes such as sexual assault. Thus the likelihood is low that persons with disabilities report most of the crimes committed against them to the police. Violent Crimes Violent crimes committed against people with disabilities include conventional violent crimes (homicide, assault, theft, robbery); abuse, child abuse and neglect (neglect, physical abuse, emotional abuse, and sexual abuse); specialized crimes (abduction by family member, stranger abduction); family violence (domestic violence, spouse abuse, stepparent abuse); and noncriminal violent acts (assaults by other children, sibling assault, bullying, physical interventions/restraint). However, people with disabilities appear to be at higher risks for some types of crime. Anecdotal evidence suggests that they face abnormally high risks of physical and sexual assault and abuse. Studies from Canada, Australia, and Great Britain consistently confirm high rates of violence and abuse by caregivers against people with disabilities. Although there is little empirical research, published findings consistently support the anecdotal evidence. One review of the available literature concluded as a conservative estimate that people with developmental disabilities are 4 to 10 times more likely to be victims of crimes than other people are (Sobsey et al., 1995). Sobsey and Doe (1991) found that 83 percent of women with intellectual disabilities in their sample had been sexually assaulted and that of those, nearly 50 percent had been sexually assaulted 10 or more times. A survey of victims of crime administered (with appropriate modifications) by the Australian Bureau of Statistics to a sample of adults with intellectual disabilities found that differences in victimization rates were most pronounced for the crimes of assault (3 times higher than for people

OCR for page 5
Page 12 without disabilities), sexual assault (11 times higher), and robbery (13 times higher). Only auto theft was lower for the group with disabilities, and that was probably due to the fact that few of them had cars to be stolen. This study also found extremely low rates of reporting to the police: 40 percent of the crimes against people with mild mental retardation went unreported, and 71 percent of those against people with severe mental retardation went unreported (Wilson and Brewer, 1992). Given the paucity of crime victimization data collected on people with disabilities in general, it is not surprising that minimal research has been conducted on infants, toddlers, children, and youth with disabilities as victims of conventional violent crimes. However, one study of these types of crimes found that high school students with learning disabilities were more likely to be victims of crime (theft and sexual assault) than their peers without such disabilities (Bryan et al., 1989). Another found that students with behavior disorders were more likely to be victims of violent crimes (aggravated assault, robbery, and rape) than their peers who have learning disabilities or mental retardation (Lang and Kahn, 1986). Because these studies included only a small sample and had other limitations, however, it is safe to say that there are essentially no data on the criminal victimization of children with disabilities. There is also rather limited information on the risk of child abuse among children with disabilities. One study found that children with developmental disabilities were at twice the risk of physical and sexual abuse than children without such disabilities (Crosse et al., 1993). A study for the National Center on Child Abuse and Neglect found that children with disabilities had a 1.7 percent higher risk of maltreatment of all kinds than do other children (Westat, 1993). Caregiver Violence Many people with disabilities rely on a paid or unpaid personal assistant to help them with a host of daily activities, ranging from grocery shopping to bathing. There is no national general survey of abuse and violence by caretakers. The one study by the National Institutes of Health identified abuse by attendants and health care providers as a problem and found that women with disabilities are “significantly” more likely to be abused by this population (Young et al., 1997). Although boys and men with disabilities may also experience high rates of abuse from caretakers, there are no data to document this.

OCR for page 5
Page 13 One study sought to measure the abuse of women with disabilities by their providers of personal assistance services in an Oregon sample (Curry and Powers, 1999). The researchers divided survey participants into women with a physical disability and those with a developmental disability. Personal assistants were paid or unpaid, including family and friends. Women with a developmental disability were significantly more likely to report that they had ever experienced several types of abuse, while those with a physical disability were significantly more likely to report that they had experienced abuse within the past year. Asked about barriers to stopping or preventing abuse, women in both groups identified the same 7 among the top 10 barriers most frequently reported, but in a different order. The seven were: don't know who to call, low personal assistant wages, shortages of personal assistants, no back-up personal assistant, too embarrassed, need help to train personal assistant, and fear personal assistant backlash. Asked about strategies that might help to stop or prevent abuse by personal assistants, both groups of women mentioned the same 6 strategies in the top 10 but in a different order. The six were: choose own personal assistant, back-up personal assistant available, set limits with personal assistant, clearly stated job description, emergency transportation, and clear communication. Both groups of women ranked the same three strategies as least helpful: call police, use humor during stress, and wait until can act. Family Violence Domestic Violence The problem of domestic violence generally is a well-documented and serious phenomenon in the United States (Rennison and Welchans, 2000; Tjaden and Thoennes, 2000). Moreover, according to the UCR in 1995, female murder victims were more than twice as likely as men to have been killed by husbands or boyfriends. For those cases in which the victim-of-fender relationship was known, “husbands or boyfriends killed 26 percent of female murder victims, whereas wives or girlfriends killed 3 percent of the male victims” (Craven, 1996:2). The same report said that women experienced seven times as many incidents of nonfatal violence by an intimate as did males. Given this, it seems obvious that women with disabilities would also be victims of this type of crime (McPherson, 1991), but there is no similar

OCR for page 5
Page 14 documentation of the victimization of this vulnerable population. None of the national surveys addresses whether or not female victims have a disability, and the studies that have been done with the population of women with disabilities mostly combine all violence (domestic violence, rape, sexual assault, stranger assault) and do not distinguish whether it was committed by an intimate partner (Nosek and Howland, 1998). About a half-dozen studies look at the subject of physical assaults against women with disabilities. Their estimations of the prevalence of some type of physical or emotional abuse at the hands of an intimate partner or caregiver range from 39 to 85 percent. A study of 245 women with disabilities by the Disabled Women's Network of Canada in 1989 found that 40 percent had experienced abuse (Nosek and Howland, 1998). The Canadian National Clearinghouse on Family Violence reports on a study that found that 40 percent of women with disabilities had been assaulted, raped or abused, and 39 percent of ever-married women with a disability had been physically or sexually assaulted by their partners (Roeher Institute, 1994). The National Institutes of Health studied 860 women, 439 of whom were disabled and found matching levels of reported physical abuse (36 percent in both groups) and sexual abuse (40 percent of women with disabilities and 37 percent of women without disabilities), but the length of time abuse was experienced was longer for women with disabilities—3.9 years compared with 2.5 years on average (Young et al., 1997). The Colorado Department of Health reported that 85 percent of women with disabilities are victims of abuse (Tyiska, 1998). Most of these studies do not separate out abuse by an intimate partner and abuse by a nonintimate caregiver and do not distinguish between types of abuse committed (e.g., physical, verbal). As noted earlier, only the National Institutes of Health broke down abuse by attendants and health care providers and found that women with disabilities are “significantly” more likely to be abused by this population (Young et al., 1997). Erwin (1999) notes that once in an abusive relationship, women with disabilities are motivated to stay by the same host of factors that keep other women in these relationships: fear of further violence, belief that the batterer will change, love of the abuser, having children in common, having no economic support if they leave, and religious beliefs, in addition to other concerns. But for women with disabilities, additional factors can limit their ability to leave, such as physically not being able to exit the house, fear of losing caregiver service if they report the abuse, not knowing if the local shelter is physically accessible (i.e., wheelchair ramp, workers

OCR for page 5
Page 15 who know sign language), fear they will be institutionalized if they leave their partner, and lack of resources. The latter is particularly important, since many women with disabilities either do not work at all or do not work full time. The unemployment rate of women with disabilities is reported to be 74 percent, and those who do work earn only 64 percent of the wages of women without disabilities (Burstow, 1992). Magnifying all of these issues is the fact that society's message to women with disabilities is they are lucky to have a partner at all (McPherson, 1991). Fear of losing that status may keep many of these women from reporting abusive behavior by their partner. Severity of Abuse The Office of Victims of Crime reports that catastrophic injuries as the result of violent assaults can result in loss of abilities to see, hear, touch, taste, feel, move, and think in the usual ways (Tyiska, 1998). A report by the National Clearinghouse on Family Violence (1998) in Canada reports that women have cited violence by their husbands as causing a loss of vision and a loss of mobility. The range of disabilities resulting from abuse go from actual physical disabilities to more hidden trauma, including head injuries, cognitive problems, and posttraumatic stress disorder (PTSD) (Koss et al., 1994; Tjaden and Thoennes, 2000). A 1995 study examined the prevalence of PTSD in battered women (Kemp et al., 1995). The results showed that 81 percent of the subjects who were physically battered had a diagnosis of PTSD, while 63 percent of those who suffered only verbal abuse met the same criteria. The physically battered women with PTSD reported more physical and verbal abuse, more injuries, a greater sense of threat, and more forced sex in the relationship than did their verbally abused counterparts. The authors concluded that battered women, particularly those who experience extensive physical abuse, are at risk for posttraumatic stress disorder. Because this study was not longitudinal and involved retrospective self-reports regarding the severity of abuse, it is difficult to determine whether the posttraumatic stress disorder was present in some subjects before the abuse occurred or resulted from some other trauma. This information is clearly not conclusive, and more research is needed to determine how many women who are victims of domestic violence suffer either permanent or temporary disability as a result of the battering and the type of disability.

OCR for page 5
Page 16 Child Abuse and Neglect Over the past 30 years, interest in child abuse and neglect has led researchers to study the relationships between disability, child abuse, and neglect. The following section describes the limited research in this area, drawing on the paper prepared for the workshop by Patricia Sullivan. Professionals, including child protection workers and educators, believe that children with disabilities are at high risk for abuse and that some disabilities are caused or exacerbated by abuse (Schilling et al., 1986; Sobsey, 1994; Sobsey and Varnhagen, 1988). However, there is a surprising paucity of methodologically sound research in the field of child abuse and disability (Ammerman, 1991; Knutson, 1988; Knutson and Schartz, 1997). Existing literature addressing the problem of abuse and the disabled can be categorized under three major headings: (1) the perception of high incidence rates of victimization among children with disabilities, (2) the proportion of children with disabilities within a sample of abuse victims, and (3) the proportion of abuse victims within a sample of children with disabilities. Perception of High Prevalence Rates Because of their vulnerability and greater need for care, children with disabilities are presumed to be at higher risk for abuse by parents and other caregivers than are other children. For example, some authors argue that children with mental retardation are at greater risk because ordinary standards of care are inadequate for them (Schilling and Schinke, 1984) and because they are less protected by the incest taboo than are other children (Neutra et al., 1977). Many children with disabilities exhibit behavioral characteristics, such as tantrums, aggressiveness, and noncompliance, that negatively affect their parents and caregivers, increasing the risk of abuse (Solomons, 1979). Finally, various disabilities, including mental retardation (Sangrund et al., 1974), cerebral palsy (Jaudes and Diamond, 1985), developmental delays (Augoustinos, 1987), speech and language disabilities (Fox et al., 1988; Law and Conway, 1992), and multiple-personality disorders (Putnam et al., 1986), have been attributed to abuse and neglect. Specific caretaking roles required for some disabilities may create a context that increases the risk of abuse. One study found, for example, that the majority of day care abuse occurs around toileting (Finkelhor et al., 1988), suggesting to some that a need for toileting assistance may be associ-

OCR for page 5
Page 17 ated with increased risk of sexual abuse for people with disabilities. Residential placement may also provide opportunity for abuse by caretakers. For example, a study of deaf youth found that sexual abuse tended to occur as a result of caretaker access to residents in private settings, such as bathrooms and bedrooms, at residential educational facilities (Sullivan et al., 1987). Disabilities in Samples of Maltreated Children Studies have found highly variable prevalence rates of disabilities in samples of abused and neglected children and youth, ranging from a low of 22 percent to a high of 70 percent (22 percent in Gil, 1970; 26 percent in Birrell and Birrell, 1968; 43 percent in Lightcap et al., 1982; 66 percent in Mian et al., 1986; 70 percent in Johnson and Morse, 1968). Among incest victims, high incidences of abnormal EEGs and disabling conditions have also been reported (Browning and Boatman, 1977; Davies, 1979). In a West Virginia sample of identified child abuse cases, 70 percent were found to have disabilities and 35 percent had disabilities attributed to maltreatment (Souther, 1986). Differences in criteria used for determining abuse and disability among the studies almost certainly contribute to the wide range of findings. Only seven states collect information on the special characteristics, including disabilities, of abused and neglected children (Bonner et al., 1997). Although the majority of child protective service workers believe that children with disabilities are at increased risk for maltreatment, most have never served clients with disabilities and are not trained to effectively diagnose disabilities (Schilling et al., 1986). Abuse Among Samples of Children with Disabilities Prevalence rates of sexual abuse among the mentally retarded have been found to range from a low of 3 percent (Hard, 1986) to a high of 25 percent (Chamberlain et al., 1984). Sexual abuse rates of 20 percent have been reported in children with cerebral palsy (Diamond and Jaudes, 1983) and of 23 to 50 percent for hearing-impaired children (Sullivan et al., 1987). One study also found that children with less severe developmental impairments were at greater risk for abuse. Several studies of abuse and neglect among samples of children and adults with disabilities referred to treatment centers have been conducted.

OCR for page 5
Page 18 This research is limited by subject selection bias, in that subjects obtained from hospitals, medical treatment centers, or institutions for people with disabilities cannot be considered representative of all children with disabilities; thus these findings cannot be considered definitive. Nevertheless, these studies suggest that abuse prevalence rates may be high among children and youth with disabilities. For example, Sullivan et al. (1991) investigated patterns of abuse among a sample of 482 consecutively referred maltreated children with disabilities in a hospital setting. Results indicated that sexual abuse or a combination of sexual and physical abuse were the most common forms of maltreatment the children experienced. The majority of subjects had communication disorders, including speech or hearing impairments, learning disabilities, and cleft lip or palate. Males with disabilities were more likely to be victims of sexual abuse than males in the general population, and placement in a residential school was identified as a major risk factor for sexual abuse among youngsters with disabilities. These studies were replicated in a five-year retrospective study of 4,340 child patients in a pediatric hospital. In that setting, 68 percent were found to be victims of sexual abuse and 32 percent were victims of physical abuse (Willging et al., 1992). Studies in Great Britain (Westcott, 1991), Australia (Turk and Brown, 1992), and Canada (Sobsey and Doe, 1991) have found that sexual abuse is the most prevalent form of maltreatment among children with disabilities. Epidemiological Studies Several epidemiological studies of children address the links between disability and maltreatment from different perspectives, using control groups. They were completed at the Center for Abused Children with Disabilities at the Boys Town National Research Hospital. In the first, a hospital-based study examining the prevalence of disabilities among maltreated versus nonmaltreated children, researchers merged more than 39,000 hospital records from 10 years (1982 to 1992) with the social service central registry, the foster care review board, and police records to identify cases of both intrafamilial and extrafamilial maltreatment (Sullivan and Knutson, 1998a). The merger resulted in more than 6,000 matches and an overall maltreatment prevalence rate of 15 percent. Among the 15 percent of children identified as maltreated, 64 percent had a disability, whereas only 32 percent of the nonmaltreated chil-

OCR for page 5
Page 19 dren had a disability. Identified disabilities included behavior disorders (38 percent); speech/language disorders (9 percent); mental retardation (6 percent); hearing impairment (6 percent); learning disability (6 percent); other disabilities (4 percent); health impairments (2 percent); and attention deficit disorder without conduct disorder (2 percent). A second study that drew its sample from public and parochial school populations permitted prevalence estimates of abuse among children with disabilities based on standard definitions of the various forms of maltreatment and homogeneous education-based definitions of disabilities. The school-based study merged almost 50,000 records from Omaha public and parochial schoolchildren matriculated during the 1994-1995 school year with the Nebraska central registry of abuse and neglect cases, the foster care review board, and Omaha police records of child maltreatment (Sullivan and Knutson, 1999b). From this merger, 4,954 children were identified as maltreated, 11 percent in the public schools and 5 percent in parochial schools. In contrast, 31 percent of the children with an identified disability had records of maltreatment in either social services or police agencies. The relative risk for maltreatment among children with disabilities was found to be three times that of other children. Overall, there was a strong association between disabilities and neglect, with children with disabilities being four times more likely to be victims of neglect than other children. Children with behavior disorders and mental disabilities were significantly more likely to be neglected than children with other disabilities. The results of this research suggested to the researchers the need for longitudinal studies related to domestic violence and disability status. Noncriminal Violent Acts Noncriminal violent acts include assault by peers, sibling assault, bullying, and condoned physical interventions, which can escalate to abuse. In one hospital-based epidemiological study (Sullivan and Knutson, 1998a), a peer physical abuse rate of 3 percent was found among victims with disabilities. Siblings also are involved in physical abuse and peers and siblings account for a small percentage of sexual abuse of children with disabilities as well. Bullying of children and youth with disabilities has been addressed empirically in the United Kingdom and other European countries (Dawkins, 1996; Roland and Munthe, 1989). Defined as physical or psychological teasing, name-calling, hitting, pushing, social exclusion, threats, extortion, and theft, bullying is considered a form of peer abuse. Dawkins

OCR for page 5
Page 20 (1996) found that children enrolled in special education programs associated with visible disabilities, such as cerebral palsy, blindness, and deafness, were twice as likely to be bullied as children with disabilities not associated with visible physical conditions, such as learning disabilities and behavior disorders; some 33 percent of these children were regularly bullied at school, with boys being bullied more than girls. Currently, it is not known whether children and youth with disabilities have a higher base rate of these noncriminal types of violence than their peers without disabilities. Disabilities as a Consequence of Criminal Victimization Disabilities can also result from the experience of violence or some form of child maltreatment. Although data are limited on the prevalence of acquired disabilities, given the problem of determining the temporal association between the onset of the disability and the occurrence of the violent act, it is estimated that 33 percent of all spinal cord injuries are the result of intentional violence (Waters et al., 1996), although it is not known if there were other preexisting disabilities among those who suffered spinal cord injury. Traumatic brain injury is the most devastating type of pediatric trauma. Each year, an estimated 50,000 children and adolescents sustain permanent disability as the result of brain injury (Stylianos, 1998). Unfortunately, follow-up data on the nature and extent of the child's disability status typically do not cover events beyond the resolution of the acute trauma. Institutional Abuse Approximately 2 percent of the 4.5 million children and youth with disabilities in the United States live in institutions, including nursing homes; schools for the blind, deaf, and physically disabled; institutions for the mentally retarded; and facilities for the mentally ill. Some research has found residential placement to be a risk factor for experiencing sexual or physical abuse (Brookhouser, 1987; Sullivan et al., 1987; Sullivan and Knutson, 1998b; Sullivan et al., 1999a), but there remains very little empirical data on victimization in institutional settings.

OCR for page 5
Page 21 BARRIERS TO OBTAINING INFORMATION In her presentation, Sullivan noted several significant challenges facing researchers who attempt to study victimization of children and adults with disabilities. First, crime victimization and child maltreatment may be both risks and consequences of disability status. Second, risk factors and consequences appear to vary as a function of the type of crime, the type of maltreatment, and the type of disability. Third, many levels of information exist regarding crimes against people with disabilities, but prevalence estimates are only as good as the information in the estimate source. Fourth, at this time, it is impossible to link data from disability sources to criminal justice and health-related databases. Further discussion of the difficulties of gathering victimization data from people with disabilities is covered in Chapter 4 on measuring victimization. Available data on abuse among people with disabilities are problematic because of the differing operational definitions of maltreatment, poorly defined heterogeneous populations with disabilities, and questionable validation procedures for determining disabilities (Ammerman et al., 1988; Knutson, 1988; Knutson and Schartz, 1997). For children, merely using central registries of child abuse and neglect to establish a link between abuse and disabilities will not alleviate the problem. Abuse records of children are not systematically entered among states, and extrafamilial abuse is not included in virtually any central registry (Flango, 1988). Furthermore, many incidents of maltreatment known to professionals and lay persons are not reported to appropriate agencies, which leads to underestimates of true levels of maltreatment (Knutson, 1988). Another problem is that disabling conditions can be conceptualized as chronic stressors for care providers, as well as disrupters of the attachment process, because disabilities can cause people to be difficult to manage, to evidence significant cognitive impairments, to be communicatively limited, or to be limited in mobility. Unfortunately, virtually all disabling conditions or their behavioral manifestations can also be occasioned by physical abuse or neglect. As a result, it is often impossible to determine whether the disability contributes to abuse or whether it is a consequence of abuse. Thus, there is controversy regarding disabilities as a risk factor in abuse.