Abstract

Critical theory is useful in understanding the position of people with disabilities (PWD) in society. This theoretical framework suggests that there is an unequal distribution of resources and power in society, which produces both conflict between groups as a consequence of this inequality and marginalization of those without resources and power. Evidence of the marginalization of PWD can be found in research that suggests that PWD experience abuse at rates 4 to 10 times higher than the rate for people without disabilities. The rate of abuse directed at people with disabilities (PWD) is often hard to document for many reasons including the fact that historically data on disability status has not been collected in databases tracking crime and victimization. Furthermore, the media often fails to cover these situations, keeping the problem hidden from view. Another factor in the hidden nature of abuse is that research suggests PWD often cannot or chose not to report abuse and when they do report, their claims are often disregarded. The goal of our research was to develop a better understanding of abuse directed at PWD–from their perspective. In focus groups with PWD, we explored the question of whether PWD report abuse, and if so to whom do they report and what was the outcome. Then using content analysis and Atlas.ti software we coded transcripts of the focus groups for major themes. The comments of participants suggest that PWD do report abuse–primarily to family, police and agency staff. However, they also say these social support systems often do not believe them or discount their reports because of their disability status. When they chose not to report, it is because they feel they will not be believed, they are fearful of further reprisal or losing a needed caretaker, and consequently are willing to tolerate a certain level of abuse. While participants often described some kind of follow-up to their reports, few were certain what happened eventually to the abuser. The findings suggest the importance of including the perspective of affected populations in attempts to understand an issue such as abuse. They also suggest the need for training programs that teach PWD about their rights and strengthens their skills as self-advocates, as well as training efforts directed at caregivers and the police.

Keywords: disability, abuse, reporting abuse against people with disabilities

Background and Significance

Critical theory is useful in understanding the position of people with disabilities in society (Oliver, 1996; Campbell and Oliver, 1996). This theoretical framework suggests that there is an unequal distribution of resources and power in society, which produces conflict between groups as a consequence of this inequality. People with disabilities (PWD) generally lack resources, skills and opportunities often available to other members of society. They experience this conflict in a variety of forms, including problems of physical accessibility, lack of employment opportunities and lower salaries, and problems accessing health care. PWD are marginalized socially, economically and politically and frequently are treated as a subordinate group within society. Individually and collectively they are denied full participation in society and their marginalization places them at a serious disadvantage within the community.

Evidence of this marginalization of PWD can be found in research that suggests that PWD experience abuse at rates 4 to 10 times higher than the rate for people without disabilities (Sobsey, et al., 1995). While research is limited, several other studies have found similarly higher rates. For example, Sullivan and Knutson (2000) found that children with any type of disability were 3.44 times more likely to be a victim of some type of abuse compared to children without disabilities and Crosse et al., (1993) found that children with developmental disabilities were twice as likely to be physically and sexually abused compared to children without disabilities.

Putting the problem of abuse directed at PWD in context, consider that the rate of violent victimization in the United States in 2003 for the population as a whole was 23 per 1,000 persons age 12 or older and the rate of property crime victimization was 163 per 1,000 households. Adjusting these rates upwards by 4 to 10 times, suggests that rates of abuse directed at PWD are likely to be very high.

The extent of abuse directed against PWD remains hidden from view because governmental agencies have historically failed to collect data on the disability status of victims of violence or crime. Historically, the two major sources of crime data in the United States–Uniform Crime Reports and the National Crime Victimization Survey (NCVS)–have not collected this data (National Research Council, 2001). The Crime Victims with Disabilities Act of 1998 now requires the Bureau of Justice Statistics (BJS) to collect data on disability status within the NCVS. In 1999, the Bureau began to develop a plan for adding questions on disability status. BJS has added questions to the NCVS to determine whether crime victims have a disability.  They are now working on their first report based on these data and hope to release the report in late 2005.  

The response of PWD to situations of abuse, likewise, reflects their status as an oppressed group. They have traditionally lacked the power to confront their abusers. Unlike other groups with adequate resources, they are often unable to address abuse by reporting it and seeking redress of their grievances. And the system is less likely to recognize abuse when it occurs and more likely to be willing to overlook it when confronted with it.

PWD often cannot, or chose not to, report abuse. Research suggests that abuse often goes unreported and unrecognized. Sorensen (1997) analyzed data from the California Adult Protective System compared with National Crime Victimization Survey data and estimated that only 5% of crimes against PWD were reported to authorities in California, compared to an average 44% rate of reporting for the population as a whole. Wilson and Brewer (1992) found that 40% of violent crimes went unreported by people with mild mental retardation and 71% by persons with severe mental retardation, compared with 56% for the general population. Sobsey and Doe (1991) studied 162 people with a range of disabilities and found infrequent reporting of crimes to authorities. Studies in institutionalized populations suggest similar underreporting. Powers et al., (1990) found that between 80 and 85% of the criminal abuse of residents went unreported to authorities.

Factors that help explain this failure to report include fear of further victimization, fear of losing a needed caregiver (Curry and Powers, 1999; Erwin, 1999) or of reprisals from administrators in institutional settings (Helms, 1990), an inability to report because of communication barriers (Berliner, 1993), an inability to convey all the details of the incident (Buchele-Ash, et al., 1995), or an inability to escape or find a safe location (Swedlund and Nosek, 2000). Tharinger et al., (1990) confirmed the tendency within the system (schools, institutions, criminal justice personal) for people not to report sexual assault involving people with developmental disabilities compared with the population as a whole. Finally, Sobsey and Doe (1991) found that PWD chose not to report because they believe nothing will come of their reporting.

Research also suggests that even when PWD report abuse, they are often not believed. As with other marginalized populations (e.g., women, the poor, people affected by HIV/AIDS), the concerns of PWD are discounted because of their lack of power. Tharinger et al., (1990) observed the tendency for people not to believe persons with disabilities when they report abuse or to feel that the person would not make a believable witness. As a marginalized group, PWD experience frustration when reporting abuse. Advocates for PWD are often unwilling to believe the extent of the problem. Many refuse to recognize the sexuality of the person or to consider the possibility that others would take advantage of a person with a disability.

While an inability to address their exposure to abuse can be explained conceptually, an understanding of how PWD react to abuse as well as an exploration of the extent to which they feel powerless to remedy their situation needs to be examined in order to connect this larger social issue with their daily lives. This paper attempts to explore these issues with PWD.

The overall goal of our research was to develop a better understanding of abuse directed at PWD–from their perspective. In particular, we wanted to learn about types of behaviors identified as abusive, reporting behaviors and perceived outcomes. This paper focuses on the issue of reporting behaviors and outcomes in situations of abuse. We were interested in learning if PWD report abuse when it happens, and if so, to who do they report abuse and what do they see as the likely outcome when they report?

Research Questions

Do people with disabilities report abuse?
If yes, to whom do they report and what is their perception of the outcome?
If not, why do they choose not to report?

Methodology

In 2004 six focus groups were conducted with members of New Jersey consumer self-advocacy groups to explore the issue of abuse directed at PWD. Two self-advocacy organizations helped recruit participants for the focus groups: the "Monday Morning Networks" organized by the NJ Council on Developmental Disabilities (NJCDD) and the NJ Self-Advocacy Project of the Arc of New Jersey. Both organizations consist of networks of groups that meet regularly around the state. Their members are adult consumers ages 18 and older with a range of disabilities, including physical and cognitive disabilities. While some members involved in these groups were former residents of institutions, members are all currently living within the community either independently or in supervised living settings.

Recruitment took place with help from the self-advocacy organizations because we felt their members would be more willing to talk about the issue of abuse and share their views on reporting. Furthermore, if they felt their concerns were not being taken seriously, it is likely that those less vocal have even greater challenges to surmount in being heard.

Focus group questions were drafted and pre-tested with several members of the New Jersey Self Advocacy project and then revised. Focus groups were conducted around the state. Groups were held in Elizabeth, Newark, North Brunswick, Ewing, Vineland, and Somers Point. Groups were facilitated by the principal investigator and co-facilitated by a graduate student and a member of the self-advocacy community who was assisting with the project. Having the self-advocate serve as co-facilitator made entry into group meetings easier. Our co-facilitator helped answer participants' questions and helped make participants more comfortable during discussions.

Focus groups were held in physically accessible locations around New Jersey such as the offices of a disability organization, in a library meeting room, or a city municipal building where the self-advocacy groups meet on a regular basis. In most cases, transportation was prearranged by the self-advocacy groups; however, where assistance with transportation was needed, the necessary arrangements were made.

Institutional Review Board approval was received for the study. The purpose of the study was explained at the start of each meeting and then participants were asked to only initial a consent form if they wished to participate. Alternative activities were available for persons who did not want to participate. Focus groups lasted one and one-half hours on average. At the conclusion of the focus group, each participant received a small incentive to thank them for their participation.

In the focus groups, abuse was generally defined as "seriously wrong things some people do to PWD. These things are considered wrong by the PWD, including seriously wrong things people do that physically hurt a person or scare them, or that take away things that belong to the person." This definition was developed with help from staff at the statewide ARC of New Jersey and after discussions with several people with disabilities.

The facilitator encouraged participants to offer general examples of types of behaviors or actions they considered abusive. People were told they did not have to talk about anything they were not comfortable talking about in front of others. When examples of abuse were provided, the facilitator did not press the individual to determine if the situation was one the individual had personally experienced or whether it involved someone else. Counselors were available at meetings to discuss situations that came up where people felt the need to talk further after the group discussion. A counselor intervened after a focus group to discuss the situation further in only one session.

Participants were also asked to describe characteristics of people who are abusers and settings where abuse was likely to happen. They were asked whether PWD report these types of situations, why or why not, and what happens when they do report. The focus group ended with a general discussion of things people can do to be safe from abuse.

With permission of the participants, all sessions were audiotape recorded and tapes were transcribed. The researchers then conducted a content analysis of the major themes in the transcripts using Atlas.ti (Version 5.0). This software program helps with the process of coding narrative for themes and sorting the findings. In our content analysis, a series of initial codes were created based on major themes found in the literature. Then while reading the transcripts, additional themes were identified and used. A graduate student created a series of codes in Atlas based on the themes and applied these codes to each transcript in Atlas.ti. Her coding was then compared with coding done by the principal investigator to assure agreement in the application of codes. Disagreements were discussed and resolved. Figure 1 below generally summarizes the areas of inquiry and major themes used in coding the transcripts in Atlas.ti.

Types of abuse were coded as physical, emotional, sexual, financial, neglect, denial of rights and other. Abusers were coded as either unknown or known. The latter included family, friends, institutional staff, community caregivers, students/teachers, health professionals, coworkers/boss, police/security personnel, or other PWD. Settings were coded as home, community, work, school, institutional, or correctional. Comments regarding examples of abusive situations were coded as "reported-yes" or "reported-no."

Events that were reported were also coded for whom they were reported to, including family, friend, staff, health professional, police, or other. Reasons for not reporting were coded fear of retaliation, fear of losing caregiver, fear of not being believed, and not knowing to whom to report. Outcomes from reporting were coded as disbelief, no follow-up and follow-up.

The data reported below represent the frequency distribution of codes based on themes that were discussed in each focus group as identified in the coding scheme outlined in Figure 1. Atlas.ti allows the researcher to group all coded passages by code/theme and then run individual and summary frequency distributions. For example, if a participant spoke about physical abuse three times in a focus group–even if the reference was to the same situation of physical abuse–each time it came up it was coded as "PHYSICAL." The frequencies reported below, therefore, represents the number of times the code "PHYSICAL" was applied to comments in each focus group as well as totals for all six focus groups. The data may include multiple references by the same person to a single event.

Figure 1. Coding Scheme

Figure 1

For text description of Figure 1, click here.

Findings

A total of 60 people participated in the six focus groups, including 15 men and 45 women (Table 1). No additional demographic data were collected from participants. Focus groups ranged in size from 6 participants to 23 participants. One focus group included primarily severely cognitively impaired people. This group was also very large and consequently yielded very little useful information because of the difficulty of probing comments and providing sufficient explanation of the questions.

Table 1. Focus Group Participants

Focus Group Males Females Total

1. 4 5 9
2. 3 4 7
3. - 23 23
4. 3 4 7
5. 2 4 6
6. 3 5 8

Total 15 45 60

Types of Abuse

When participants were asked about the kinds of situations PWD identify as abusive, PWD gave examples of abuse using traditional categories–physical, emotional, financial, and sexual abuse–as well as non-traditional categories such as limitation of rights, including the right to bear children, to live independently, to get married, to speak for oneself, and to maintain one's privacy. Participants were more likely to identify known perpetrators such as family, community caregivers, institutional staff, and other PWD–compared with unknown perpetrators. Examples of abuse in community settings (including abuse at home and in the workplace) were given more often than examples in institutional settings.

Reporting Behaviors

Participants were asked if PWD report abuse when it happens to them and if not, why? As seen in Table 2 below, most comments referred to situations where PWD did report abuse (50 compared with 19 comments involving unreported situations). However, an additional 16 comments noted situations in which the PWD was not believed when they did tell someone and 9 situations where they were not aware of any follow-up. When participants said someone had been told about the abuse, most often it was a family member, the police or agency staff and counselors (Table 3).

Table 2. Major Themes in Responses to the Questions "Do PWD Report Abuse?" and "Are They Believed?"

  Focus Group
  1 2 3 4 5 6 Total
 
Reported-No 4 6 1 3 2 3 19
Reported-Yes* 16 6 2 9 10 7 50
Outcome after Reporting              
Not believed 3 4 0 4 3 2 16
No follow-up 1 0 0 4 2 2 9
Follow-up 13 1 2 2 4 1 23

____________________

*NOTE: Numbers for "Reported-Yes" do not always equal number for "Outcome after Reporting" because respondents sometimes did not provide outcome information and sometimes they provided outcome information but it was not possible to tell if they had reported abuse.

Table 3. Major Themes in Responses to the Question "Who Do PWD Tell When They Report?"

  Focus Group
  1 2 3 4 5 6 Total
 
Reported-Yes 16 6 2 9 10 7 50
Reported to Whom?              
Family Member 4 0 0 1 4 4 13
Police / Guard 5 1 0 1 3 1 11
Agency Staff / Counselor 3 0 1 4 1 1 10
Friend 1 0 0 1 3 0 5
Health Care Professional 0 0 0 1 1 2 4
Other 0 1 1 0 0 1 3
TOTAL* 13 2 2 8 12 9 46

_______________________

*NOTE: Sometimes participants did not identify who they reported to so numbers of persons to whom reports were made do not always equal number of "Reported-Yes." In addition, some people reported to several people, so the number of people to whom PWD said they reported abuse may be larger in some cases than the number of "Reported-Yes."

A number of comments suggested that PWD often report abuse to family members who are unwilling to believe the individual. When people with disabilities report abuse their complaints are often not taken seriously. There were several themes in the comments of participants as they attempted to explain why they were not believed. They attributed not being believed either to their disability or the nature of family relationships wherein precedence was given to family relationships. Some individuals refused to believe that another member of the household could be abusive.

A number of comments suggested that many situations involved family members who were unwilling to believe that someone in the family or someone close to the family could be abusive or that abusive events could be occurring.

…and for some reason my brother wanted to have sex with me and I told him 'No, I don't want to have sex because I'm your sister…he didn't listen to me. So, I went to my mom. My mom didn't believe me so when I went to work the next day my dock coach… she told me to stay at work until…So I went down to the police station and filed a police report on my mom and my brother…Right now my brother's …in jail (Focus Group 5).

The lack of family support, in some cases seems to exacerbate the situation, emboldening abusers. A live-in boyfriend was described as a repeat offender by one woman who said her mother refused to believe her reports on several occasions, until she turned elsewhere for recourse.

When my mom's boyfriend sexually abused me, I told my mother, and my mother didn't believe me. So I had called the cops and got a report on him. She didn't believe me. I had to go to somebody else. She didn't believe me. They were looking for him (Focus Group 1).

Other participants spoke about reporting to the police, being labeled as disabled and, hence, not being believed. The labels further victimized people when they reported.

… when the police come, they called me retarded, and 'I don't know what I'm saying.' ….[the police] they called me retarded and stuff….I don't think they believed me…(Focus Group 5).

I laid on the bed because I was tired because ….tired all day long. And I laid there on the bed and the guard was feeling the front of me…And I told somebody but they did not believe me. They said…the people said that I have…I have funny… I have funny family. Stuff like that (Focus Group 5).

One participant, typing on a communication board said, "A few months ago we got robbed, and we reported it but it wasn't believed at first. [Moderator: Whom did you tell?] The police…but they didn't believe us. I showed the wallet without the money in it. [Other participant: 'Why didn't the police believe you?'] I'm disabled. It was a pretty ignorant cop too" (Focus Group 4).

Some participants said they reported abuse to agency staff members but were not believed. One participant described a situation where someone had tried to take her money when she was at a corner convenience store. Afterwards she said: "I went back to one of the group homes and they didn't believe me…" (Focus Group 5).

Participants pointed out that when language and communication is a problem, people with disabilities "get dismissed because people don't have patience" (Focus Group 2). One participant said that "…Sometimes I think when I say something I feel like I'm being singled out. They think I'm talking through my head or something" (Focus Group 5).

Others expressed a sense of hopelessness when speaking about reporting abuse. Whether talking about a case worker or a family member, respondents described feeling that people did not care when they reported situations of abuse.

…[referring to case worker] They just came and looked at you to see how… make sure you had clothing, food and that was it. They didn't care less if you was getting a beaten or not (Focus Group 2).

Tell! Tell who?!! I grew up in Georgia. Who were you going to tell? [laughter] When you go and the whole family, the whole family, your aunt came over, 'She did what?' And then it was like, 'Oh' [Respondent's voice indicated a lack of interest.] (Focus Group 6).

When their reports are dismissed, PWD often experience further psychological trauma. In one situation where a person described telling her sister about her abusive brother, she said:

…My sister, she didn't believe me cause when I was living with her, you know, they called me retarded and then and they didn't believe me….At night when I go to bed I still have nightmares. Sometimes I hate to go to sleep. Yeah, because you never know. That's…that's one thing you can't forget. Not going to forget that (Focus Group 5).

The lack of willingness on the part of family members to acknowledge what has been happening is a source of frustration and pain to some respondents. As one woman noted, "I mean … she [mother] didn't even believe that my father abused me when I told her. I mean, if your own mother doesn't believe you — that's what really hurts" (Focus Group 2). For some, not being believed made them doubt themselves.

…I know with me, that it has happened where I mention things and it's like they don't believe you and I feel like, 'Am I going crazy?' I mean…'Am I imagining?' You know, so many things go through your mind, you know like that. I know what I know what I know (Focus Group 4).

Some participants who reported abuse were able to identify a positive outcome as a result of reporting–albeit often one they found less than satisfactory. One participant who spoke about a situation involving abuse from a paid caregiver in which the abuse had been reported, noted that the abuser was "fired" but he was concerned that no further action was taken against the abuser.

And what they did in the agency, in the organization, rather than press charges on him… they just let him go. And he could, and he had, and they could not be nowhere around the area. He could not be around the area at all (Focus Group 1).

Another spoke about money being taken from him in a supervised setting and said "when they investigated and found out…not only the person got terminated, but both parties that knew about it got terminated…and then it took over a month to get my money back" (Focus Group 1).

Some participants seemed less certain about the outcome of their reporting. As one participant said, "I don't know what happened to him, if he got arrested or…but when I made the report, they were looking for him. I don't know if they found him or what happened to him" (Focus Group 1).

One participant said it is easier for women to report abuse than men because "…people tend to be more sympathetic towards a woman…that's what they're used to. But if a man's being abused, people tend to say, 'Well, buck up.'…It's kind of like men don't cry, so therefore, there's disbelief. Even though that could be, so I just don't think it goes as reported as much because I don't think…(a) men may not report it as much and (b) because people just might not believe them" (Focus Group 2).

In the discussion, participants attempted to explain lack of willingness to do anything about abuse when it is uncovered to several different factors. Some attributed non-responsiveness to abuse (and abuse itself) to low-wages paid to staff.

…the pay scale isn't very high and I believe…as a result they don't have a… the attitude is…they're somewhat lackadaisical. It's like, I'm not getting paid that much, but I need the job so I'll go there and do what I have to do. Because I've had some come in and …literally ask me, 'Can I turn the TV on?' …But I think with some of them because of their pay scale, they just have this attitude like… 'I'll do what I have to do and that's it' (Focus Group 4).

One participant emphasized the role of stress in people's lives. "…certain people, they're just so burdened down and so oppressed with so much of what's going on. Sometimes they can't handle it."(Focus Group 6) This stress was seen as a factor that sometimes caused anger to be redirected away from the abuser and inappropriately focused it on the person being abused. Other participants, however, expressed frustration that caregivers are excused because of the stress they experience as caregivers. As one woman said:

'Oh she's stressed out' like there seems to be more of an excuse for the person who's an abuser because they're care giving someone with a disability, so they must be tired or they're overworked and so that abuse goes on longer because people kind of turn their heads and make excuses when if it were in reverse they probably wouldn't. They would probably be a little more involved (Focus Group 2).

Reasons Offered for Not Reporting

Participants spoke of their fear of retaliation if they reported situations of abuse. One participant said that PWD are afraid to report because "…if the person [abuser] happens to come back to your home…you would get concerned about the retaliation and then sometimes you just, you just out of fear" (Focus Group 4).

Other participants attributed the decision not to report to the need for care giving and the worry of losing a needed caregiver.

There's a lot of things that I could have reported but, out of fear, I didn't because, you know, it's a need. You know, I need this. I need the help so I put up with things because, you know, I need the help. Otherwise I'm without, I'm without anything (Focus Group 4).

…I try to be accommodating because I need, I need them. So I try to, you know, be flexible as possible, but…you have to shield the backlash because now the aide's coming back in and, and she's gonna…there's subtle things that goes on. Because now she's annoyed because of what you said and so now, you know, she knows she can't, they know basically they can't just blatantly, blatantly hit you, so they do little subtle things to you (Focus Group 4).

Discussion

The comments of participants in our focus groups suggest that PWD do report abuse (Table 4). Many described situations in which abuse was reported–primarily to family, police, and agency staff. However, reports of abuse often were not believed because of a person's disability status or because precedence was given to maintaining family relationships. Less frequently, participants said they did not report abuse because they were fearful of further reprisal or losing a needed caretaker. As a consequence, people said they were often willing to tolerate a certain level of abuse.

Participants often described some kind of follow-up to their reports. For example a family member was supposed to have contacted the police, or police or agency staff took action against an abuser by either arresting the individual or letting the employee go. Few, however, were certain what happened eventually to the abuser. Several participants expressed concern that when an agency fired an employee who was abusive, the abuser simply went elsewhere to another program and found work.

Table 4. Critical Findings

In focus groups with PWD:

  • Participants said:
    • They report abuse when it happens.
    • They are often not believed when they report abuse.
  • While they say some action was taken when they report abuse, they are not clear what happened to the abuser.
  • When they do not report abuse it is because they:
    • Feel they will not be believed
    • Fear retaliation
    • Fear losing a caregiver and feel they must tolerate a certain level of abuse to maintain their caregiver

PWD often lack necessary resources that would allow their voices to be heard. Many PWD have not been empowered through self-advocacy training. These programs help provide the skills needed to know one's rights and what to do when they have been violated. Even among trained self-advocates, many people still lack these skills, which suggests that general self-advocacy training alone may not be sufficient. More specific training on the topic of abuse (e.g., what constitutes abuse, settings where people are vulnerable, likely abusers, to whom to report, and likely outcomes) is needed.

Because abuse directed at PWD remains hidden (by lack of statistics, lack of reporting, inability to report or an unwillingness to believe people would abuse PWD), PWD enter a state of what Chenoweth (1997) refers to as "extreme marginalization." They are placed at risk of emotional, physical, sexual and financial abuse and are likely to be ignored by family, disability and violence-related support systems. When they report abuse and are not believed, this marginalization may create a sense of self-destructive anomie wherein PWD are likely to feel even further detached from society.

This research was unique in that it provided people with disabilities with the opportunity to share their thoughts and ideas on abuse directed at PWD. In general, participants were very willing to participate in the discussions and happy to be able to tell their stories. The research was also unique in that every effort was made to include PWD as much as possible in the research process–including involving them in the review of the questions to be asked as well as having them serve as co-facilitators in the groups.

The research suggests that it is important to explore a critical issue such as abuse directed at PWD not only through available statistics, but also in discussions with affected populations (Table 5). Too often, the issue has been studied based only on reports of abuse or from the perspective of staff working with PWD. In addition, allowing PWD to participate as much as possible in the design of the research process and the data collection process is valuable. Following data collection, the researcher met with the participants in the focus groups to share the findings and obtain their ideas of what to do next. One suggestion has been to schedule follow-up meetings of group members with police officers to encourage their understanding of the problem of abuse PWD often face.

Table 5. Implications for Practice and Research

  • Practice: The findings suggest the importance of:
    • Training programs which explain the rights of people to PWD and which encourage them to report abuse
    • Training programs for family, staff and police which sensitize them to the issue of abuse directed at PWD
  • Research: The findings demonstrate several things:
    • The value of adding findings obtained from research conducted directly with PWD to the body of research that examines the problem of abuse from reports of abuse
    • The value of including PWD as active participants in the research process

In terms of practice, the findings suggest the critical need for development of self-advocacy training programs that focus specifically on personal rights, the nature of what constitutes abuse, and the process for securing justice. It also suggests that training for caregivers and police to sensitize them to the problem of abuse is also needed.

It is important to point out, however, the limitations of this research. The sample of participants in the focus groups was not a random sample, but rather people who were already participating in pre-existing groups in the community. All people with disabilities in New Jersey did not have an equal chance to participate in one of the groups and the findings consequently cannot be generalized to the population as a whole. The people who did participated were a subset of the population with disabilities. Their ability and willingness to attend meetings in the community may make them different from other people who have more restrictions on their ability to participate in groups. The experiences and views of people who did not participate could be different from our participants in many ways. They may have little or no understanding of abuse and/or no experience with situations of abuse or they may actually experience more abuse than our participants but be prevented from coming out and sharing their thoughts on this subject because of mobility or communication issues, or because they are prevented from attending these types of gatherings.

It should also be noted that the data provide only a summary of the number of times participants discussed reporting behaviors. No attempt was made to tally the actual number of abusive events. The data therefore may include multiple references by the same person to a single event.

No demographic data were collected on the participants in the focus groups. Only data on gender was collected through observations. Because of the sensitive nature of the discussion, it was considered important not to collect personal identifiers on the participants in order to encourage people to feel comfortable in the discussion. This limitation prevented the researchers from knowing anything about the nature of the disabilities represented in the sample of participants, or other factors (such as age or living situation) that might be important in interpreting the data.

In conclusion, the problem of reporting abuse discussed here represents the perspectives of people with disabilities who have been trained as self-advocates. The fact that they felt their concerns were often not being taken seriously when they reported abuse, suggests that the problem of reporting is an even larger concern for persons who are less vocal. As such, the problems discussed here are likely to represent only the "tip of the iceberg."

References

  • Berliner, L. (1993). Identifying and reporting suspected child abuse and neglect. Topics in Language Disorders 13(4): 15-24.
  • Buchele-Ash, A., Turnbull, H., & Mitchell, L. (1995). Forensic and law enforcement issues in the abuse and neglect of children with disabilities. Mental and Physical Disability Law Reporter 19: 115-121.
  • Campbell J, & Oliver, M. (1996). Disability politics: understanding our past, changing our future. London: Routledge.
  • Chenoweth, L. (1997). Violence and Women with Disabilities: Silence and Paradox. In Cook, S., and J. Bessant, Women's Encounters; Australian Experiences. Thousand Oaks, CA.: Sage Publications.
  • Crosse, S., K. & Ratnofsky, A. (1993). A report on the maltreatment of children with disabilities. Washington, DC: National Center on Child Abuse and Neglect, U.S. Department of Health and Human Services.
  • Curry, M., & Powers, L. (1999). Findings from the survey of women with disabilities. Crime Victims with Developmental Disabilities: A Workshop, Irvine, CA.
  • Erwin, T. (1999). Intimate and Caregiver Violence Against Women with Disabilities. Unpublished manuscript.
  • Helm, R. (1990). Study finds abusers of disabled often their helpers. The Edmunton Journal, p.C3.
  • National Research Council, Committee on Law and Justice, Commission on Behavioral and Social Sciences and Education. (2001). Crime Victims with Developmental Disabilities. Joan Petersilia, Joseph Foote, and Nancy Crowell, (Eds.) Washington, DC: National Academy Press.
  • Oliver, M. (1996) Understanding Disability: From Theory to Practice. London: Macmillan.
  • Powers, J., Mooney, A., & Nunno, M. (1990). Institutional abuse: A review of the literature. Journal of Child and Youth Care, 4, 81-95.
  • Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Journal of Sexuality and Disability 9(3): 243-259.
  • Sobsey, D., Wells, D., Lucardie, R, & Mansell, S. (1995). Violence and Disability: An Annotated Bibliography. Baltimore, MD, Brookes.
  • Sorensen, D. 1997. The Invisible Victims. Impact. Minneapolis, MN: University of Minnesota, Institute on Community Integration (UAP)/Research and Training Center on Community Living.
  • Sullivan, P. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24 (10), 1257-1273.
  • Swedlund, N., & Nosek, M. (2000). An exploratory study on the work of independent living centers to address abuse of women with disabilities. Journal of Rehabilitation 66(4): 57-64.
  • Tharinger, D., Horton, C. & Millea, S. (1990). Sexual abuse and exploitation of children and adults with mental retardation and other handicaps. Child Abuse and Neglect 14: 301-312.
  • Wilson, C. &. Brewer, N. (1992). The incidence of criminal victimization of individuals with an intellectual disability. Australian Psychologist 27(2): 114-117.

Notes

  1. The data on criminal victimization are obtained from the National Crime Victimization Survey (NCVS). Since 1973, the Bureau of Justice Statistics has conducted the survey annually in about 84,000 U.S. households with nearly 150,000 persons aged 12 or older. The NCVS is designed to measure the public's exposure to crime as reported by victims, even if the incident was never brought to the attention of a law enforcement agency. Data collection is carried out for BJS by the Bureau of the Census. The survey report, "Criminal Victimization, 2003" (NCJ-205455), was written by BJS statistician Shannan M. Catalano and can be accessed at: www.ojp.usdoj.gov/bjs/abstract/cv03.htm.
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  2. This research was funded by the New Jersey Council on Developmental Disabilities (#13ML4R). Denise Goobic, MA, Director of the DD Offenders Project/New Jersey Arc and Sue Gottesman, Esq., Legislative Coordinator, New Jersey Council on Developmental Disabilities, provided assistance in planning and implementing the project. Special thanks to Adelaid Daskam and Sam Jenkins of the NJ Self-Advocacy Project who served as co-facilitators for the focus groups and to the participants in the groups who took the time to share their thoughts and experiences on the subject of abuse.
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Text Description of Figure 1

Types of abuse were coded as physical, emotional, sexual, financial, neglect, denial of rights and other. Abusers were coded as either unknown or known. The latter included family, friends, institutional staff, community caregivers, students/teachers, health professionals, coworkers/boss, police/security personnel, or other PWD. Settings were coded as home, community, work, school, institutional, or correctional. Comments regarding examples of abusive situations were coded as "reported-yes" or "reported-no." Events that were reported were also coded for whom they were reported to, including family, friend, staff, health professional, police, or other. Reasons for not reporting were coded fear of retaliation, fear of losing caregiver, fear of not being believed, and not knowing to whom to report. Outcomes from reporting were coded as disbelief, no follow-up and follow-up.

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Copyright (c) 2006 Bernadette West, Sampada Gandhi



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