Barriers and strategies in addressing abuse: a survey of disabled women's experiences. (PAS Abuse Survey).

Increasing our understanding of abuse against women with disabilities has been identified as a major research priority (NIDRR, 1994). Evidence suggests that violence and abuse pose significant health risks for women with disabilities, who are at greater risk for abuse than non-disabled women (Furey 1994; Gill, 1996; Young, Nosek, Howland, Chanpong & Rintala, 1996; Stimpson & Best, 1991; Sobsey, Gray, Wells Pyper & Reimer-Heck, 1991; Sundram & Stavis, 1994; Waxman, 1991). The social context of disability, including factors such as inaccessibility, reliance on support services, poverty and isolation, is critical for understanding women's increased risk for abuse.

One critical contextual issue relates to women's use of caregivers or personal assistants. Indeed, abuse by personal assistance providers has been identified by women with disabilities as a particularly significant problem (NIDRR, 1994). Approximately 4.5 million women use personal assistance services (PAS), which are defined as one or more persons assisting another person with tasks which the individual would typically do if they did not have a disability (Litvak, Zukas, & Heumann, 1987). The majority of community-based PAS services are provided by unpaid, informal providers (79%), while approximately 11% of users receive a combination of paid, formal and informal services, and only 10% receive exclusively formal, paid services (Rutgers University Bureau of Economic Research, 1990). For many women with disabilities, access to quality PAS is a critical requirement for personal independence and community living (Litvak & Kennedy, 1991).

Abuse has unique meaning for women with disabilities in the context of personal assistance services relationships. This meaning is integrally related to the experiences of dependence and interdependence in disability, and encompasses the life experience of disabled women who may require assistance with personal care, equipment, medication, finances and auxiliary services such as adaptive transportation. Thus, when PAS abuse occurs, women's abilities to engage in daily life activities are compromised along with their personal health and safety.

Very little is known about women's experience and management of PAS abuse. The majority of research has focused on the experiences of sexual abuse among children and adults with developmental disabilities (Sobsey, 1994). Only a few studies have focused on women with physical disabilities who did not have cognitive disabilities.

Sobsey and Doe (1991) were among the first to report the patterns of sexual abuse and assault among children and adults with developmental disabilities. In their review of 162 reported cases of sexual abuse in North America, the mean age of victims was 19.2 years, with a range of 18 months to 57 years. The majority of victims were women (81.7%) and the majority of offenders were men (90.8%). Over 50% of the abusers had a relationship with the victim that was similar to those found among nondisabled victims of abuse. These included biological family members, acquaintances, strangers, dates and step family members. However, in another 44% of the cases, the abusers had a relationship with the victim that was specifically related to the person's disability. Nearly 28% of these included personal assistance services and health care providers.

Three studies have focused on the experiences of abuse among women with physical disabilities and they are also the only studies that have examined other types of abuse among persons with disabilities (Nosek, Young, & Rintala, 1995; Young, Nosek, Howland, Chanpong, & Rintala, 1997; Riddington, 1989). The Disabled Women's Network of Canada (Riddington, 1989) surveyed 245 women, among whom 40% had experienced abuse and 12% had been raped. Spouses and ex-spouses were the most common perpetrators, followed by strangers, parents, service providers, and dating partners. Less than half of the women reported the abuse because of their fear and their dependency on the abuser.

In the United States, Nosek, Young, and Rintala (1995) distributed a survey questionnaire to 439 women with physical disabilities and 421 women without physical disabilities that included questions regarding physical, emotional and sexual abuse. The incidence of abuse among women with and without disability was similar; 62% of both groups reported some type of lifetime abuse. Half of both groups had experienced physical or sexual abuse. Husbands or live-in partners were the most common perpetrators of physical or emotional abuse. Unlike the women with developmental disabilities described in the previous study, male strangers rather than acquaintances or family members were the most common perpetrators of sexual abuse for women in both groups. There were two important differences between the women with and without physical disabilities. Women with disabilities were more likely to experience abuse by personal assistants and health providers and they were more likely to experience a longer duration of abuse than women without physical disabilities.

In summary, the incidence of abuse among women with disabilities appears high. Like women without disabilities, the abusers are often men Who are known to the victim and most assaults occur within the home or place of residence. However, unlike nondisabled women, women with disabilities are vulnerable to abuse from personal assistance providers who are essential to their independence.

Only two studies have specifically investigated personal assistance services abuse. Ulicny, White, Bradford and Mathews (1990) conducted a survey of 91 male and female users of 15 randomly selected independent living center attendant services programs. Attendant users were asked to report their frequency of exploitation by PAS providers, their responses to previous exploitation, and their engagement in behaviors hypothesized to be related to theft by PAS providers (e.g., letting provider buy drugs and medication, bring friends to their home, charge items to their credit card, have a key to their home, etc.). They found that 40% of the respondents reported financial abuse while 10% reported physical abuse. All respondents who reported physical abuse also reported experiencing theft. Of the respondents who reported an incidence of exploitation, 25% reported that they refused to confront the PAS provider because of fear of retribution and 19% overlooked the exploitation to avoid having to locate a new provider. The only consumer behavior significantly associated with exploitation was allowing the PAS provider to bring friends to the consumer's home. Commonly mentioned strategies to prevent theft included consumers keeping valuables under lock and key, carefully screening PAS provider applicants, regularly monitoring medications and bank accounts, and signing their own checks. The study did not differentially examine the experiences of men and women PAS users or additional forms of abuse.

To more deeply explore the nature and management of PAS abuse by women with disabilities, Saxton, Curry, Powers, Maley, Eckels and Gross (2001) conducted a qualitative study of 72 women PAS users. Focus groups and individual interviews were conducted to investigate how women defined personal assistance abuse, the barriers they faced in handling abuse, and strategies they recommended to prevent or stop abuse. Verbatim transcripts were coded and analyzed using established ethnographic and content analysis techniques (Denzin & Lincoln, 1994). Study participants revealed numerous forms of PAS abuse, including physical and sexual abuse, medication manipulation, equipment disablement or destruction, neglecting to provide needed services, abuse of children and pets, and several types of verbal abuse. Women also described a number of barriers to addressing abuse, including: (a) difficulty recognizing it and having their experiences validated; (b) feelings of shame or embarrassment; (c) lack of PAS providers and emergency back-up services; (d) fear of institutionalization or loss of their children if they reported the abuse; (e) difficulties in setting limits with providers, particularly family and friends; and (f) lack of access to abuse resources such as crisis services, support groups and domestic violence shelters. Finally, the participants shared many different strategies that they believed women and others could use to manage PAS abuse. Strategies proposed by the women included learning about domestic violence resources and approaches for hiring, training and supervising PAS providers; having access to emergency and back-up PAS; using humor to maintain positive relationships; and participating in support groups.

The purpose of this survey study was to build upon the findings from our qualitative study by clarifying women's level of experience of various forms of abuse, which abusive behaviors women considered most harmful, which barriers women perceived as creating the greatest obstacles to ending PAS abuse, and which strategies women perceived as most helpful for preventing or stopping PAS abuse. The following research questions were examined:

1. To what extent do women with disabilities experience abuse, including abuse by personal assistance services providers?

2. What forms of personal assistance abuse do women with disabilities consider most hurtful?

3. What are the most critical barriers that impede women's handling of personal assistance abuse?

4. What are the most important strategies that women and others can use to prevent and/or stop personal assistance abuse?

For each of these questions, we were also interested in understanding the extent to which factors such as type and severity of disability, ethnicity, relationship of PAS provider and provider payment had an impact on women's responses.

Method

Participants

Two hundred women, 18 years of age or older, with physical disabilities or physical and cognitive disabilities were recruited through independent living centers and disability services agencies in Portland, Oregon, the San Francisco Bay Area, Chicago and St. Louis. Women who lived in non-congregate community residences and used personal assistance services provided by family members, friends or paid personnel at least 3 times per week were invited to participate. Although the study focused on investigating personal assistance services abuse, women's experience of abuse was not a requisite for participation.

Participants ranged in age from 21 to 92, with a mean age of 50 years. Fifty-six percent (n = 113) of the women were Caucasian. Forty-three percent (n = 86) of the women were culturally diverse: 60 were African American, 14 were Hispanic, 7 were Asian, and 5 were Native American. One woman did not disclose her ethnicity. Thirty-three percent of the women completed grade school or high school, 42% attended some college, and 25% had completed a college degree. Twenty percent of the women were employed in paid jobs, 8% performed volunteer work, 9% were students, and 63% were not engaged in work or school. Thirty-nine percent of the women were single, 13% were married or living with a partner, 36% were separated or divorced, and 12% were widowed.

With regard to disability, 77% (n = 153) of the women reported that they had a mobility disability, 4% had a learning disability, 4% had a mental health disability, 3% had a visual disability, 2% had a speech disability, and 1% had a heating disability. Sixteen percent (n = 32) of the women self-identified as having cognitive disability and/or received developmental disabilities services for persons with cognitive disability. Sixty-seven percent (n = 134) of the women, experienced disability after the age of 21, 18.5% (n = 37) were born with disability and 13% (n = 26) developed disability during childhood. Three participants did not disclose the time of onset for their disabilities. Eleven percent (n = 21) of the women indicated they experienced mild disability, 32% (n = 63) indicated they had moderate disability, and 57% (n = 113) reported they had severe disability. Three women did not disclose the severity of their disabilities. Twenty-one women reported they used a ventilator, 70 indicated they used a power wheel chair, and 18 women used augmentative communication devices.

With regard to type of personal assistance used, 63% (n = 126) of the women received personal care (e.g., assistance with activities such as dressing, bathing, and eating). Of these women, 38% received personal care from a family member or friend while 62% received care from someone else. Eighty-three percent of these women had paid personal care providers while 17% had unpaid providers. Ninety-two percent (n = 184) of the women used homemaking services; 39% had homemaking provided by a family member or friend and 61% had it provided by someone else. Seventy-two percent of these women received paid homemaking services while 21% received unpaid homemaking services. Other forms of assistance used by women included transportation (n = 162), managing finances (n = 61), help at work or school (n = 35) communication assistance (n = 33), and childcare (n = 11).

Procedure

Independent living centers and disability agencies mailed an information packet to approximately 1600 women they identified as meeting the criteria for study participation. The packet included an invitation to participate in the study; a consent form; a stamped, return postcard to complete if they wished to participate; and a wallet-sized card that listed domestic violence resource information for their community. To ensure their participation, women who received developmental disabilities services were personally invited to participate by staff from developmental disabilities agencies in Portland and the San Francisco Bay Area. Finally, to promote the participation of women who received informal personal assistance services, 50 study packets were distributed by independent living center staff. These packets included the survey questionnaire for women to independently complete as well as the invitation letter, consent form, and domestic violence resource information. Women indicated their consent to participate by mailing their interest postcards or independently completed survey questionnaires. Each woman was paid $10 for participating in the study.

Postcards and independently completed questionnaires were mailed by participants to the interview team at Berkeley Planning Associates (BPA). Two hundred and three postcards were received from women interested in participating in the study, a response rate of 13%. Thirteen women returned independently completed questionnaires by mail, representing approximately 26% of the questionnaires distributed by independent living centers. Although these response rates are low, they are not considered unusual given the general mail-out methodology used. Furthermore, the study focused on abuse, a topic that many women may not choose to respond to given their lack of exposure or their fear of participating if they are currently experiencing mistreatment.

Women who returned interest postcards were contacted by a trained telephone interviewer to confirm their interest in and eligibility for the study, and to schedule a telephone or in-person administration of the survey at a convenient, safe time and location. A total of 156 postcards resulted in telephone interviews: Forty-seven women who returned postcards were not surveyed because they were subsequently determined not to be eligible for the study (did not use PAS), they elected not to participate once contacted, or they were not reachable at the contact number provided. Thirty-one surveys were administered in-person as a disability accommodation, primarily for women with cognitive disabilities. In-person interviews were conducted by the study researchers from the Oregon Health and Sciences University and the World Institute on Disability.

Telephone surveys were conducted by experienced interviewers from Berkeley Planning Associates. Interviewers completed a detailed training program that included general interviewing skills, administration of the survey protocol, talking to women about abuse, mandatory abuse reporting requirements and procedures for handling abuse disclosure, and strategies for interviewing persons with cognitive disabilities. Interviewers were provided with a comprehensive written training manual and participated in role-play survey administration practice sessions.

Participant's survey responses were directly entered into an electronic file by the interviewers. Interviewers also confirmed that each woman received a domestic violence resource card and telephone follow-up was provided by the BPA study coordinator if a woman disclosed current abuse. All survey data were entered and cleaned by BPA research staff and a SPSS file and data dictionary was provided to the OHSU researchers for subsequent analysis.

Survey instrument. The survey included 5 major sections. The first section included a series of demographic questions, including age, gender, marital status, education, employment, disability type and severity, types of PAS used, relationship of PAS provider and whether the provider was paid or unpaid. The second section listed 31 behaviors of PAS providers identified as potentially abusive by women who participated in our previous qualitative study (Saxton, Curry, Powers, Maley, Eckels and Gross, 2001). These behaviors included "makes decisions or choices without asking; touches sexually in unwanted ways; withholds, overdoses or steals medication; hits, kicks, slaps, shoves or is otherwise physically abusive; neglects or abuses children in home; and forges checks, uses credit cards, steals money or other things." They were asked to rate on a 4-point scale (range 0 to 3) how much hurt each behavior would cause for someone with a similar disability (0 = not hurtful; 1 = a little; 2 = quite a bit; 3 = a lot). Women were also asked to indicate whether they had ever experienced the behavior in their lifetime. The standardized item alpha for the behaviors was .96. A follow-up question asked if any of these experiences had kept women from doing their jobs, being as healthy as possible, and living independently.

The third section of the survey asked women to rate on a 4-point scale (range 0 to 3) the extent to which 16 different factors, identified through the qualitative study, were barriers to stopping or preventing PAS abuse (0 = not a barrier; 1 = a small barrier; 2 = a medium barrier; 3 = a big barrier). Factors included "shortage of qualified personal assistance providers; lack of emergency, back-up personal assistance; too embarrassed to talk about the abuse; don't know whom to call; lack of accessible shelters or temporary housing; and fear of backlash from the personal assistance provider." The standardized item alpha for the barriers was .89.

The fourth section of the survey asked women to rate on a 4-point scale (range 0 - 3) the helpfulness of 25 strategies, identified through the qualitative study, to stop or prevent PAS abuse (0 = not helpful; 1 = sort of helpful; 2 = quite helpful; 3 = very helpful). Strategies included "setting limits about what treatment is and isn't appropriate; being able to choose who provides personal assistance services; being asked about abuse by a doctor, nurse, case manager or other professional; having a back-up personal assistance provider lined up; access to a 24-hour crisis line to call if there's a problem; calling the police; and reminding yourself not to put up with abuse or mistreatment." The standardized item alpha for the strategies was .82.

The final section of the survey included 2 questions commonly used to screen abuse among women without disability: "Have you ever been hit, slapped, kicked or otherwise physically hurt by anyone?" and "Either as a child or adult, has anyone ever touched you in a way you did not want to be touched or forced you into sexual activity you did not want?"

Results

Incidence of Abuse

Our first research question examined participant's lifetime experience of PAS abuse and their lifetime experience of physical and sexual abuse by any perpetrator. Table 1 presents the percentage of women who reported experiencing each form of abusive behavior by PAS providers. Those behaviors reported to occur quite commonly (at least 20% of women affected) included examples of poor job performance, threatened or actual neglect, verbal abuse, exerting control or denying the women's choices, threatened physical abuse, rough treatment, and financial abuse. Physical abuse or alteration of medications was reported by approximately 14% of the respondents while inappropriate sexual touching was reported by 11% of the women.

Chi-square was used to evaluate the impact of demographic factors on abuse incidence. For this and all subsequent analyses, ethnicity data were collapsed into Caucasian and ethnic minority categories due to the small cell sizes for individual ethnic groups. Severity of disability was consolidated into mild or moderate disability and severe disability categories. PAS provider type was collapsed into family and nonfamily (friend or someone else) categories. Provider payment arrangement (paid, unpaid) for personal care was selected for follow-up analysis because personal care was utilized by 63% of the participants and it is a form of PAS that can include intimate contact between provider and user. To accommodate the multiple comparisons performed, p-values were set at .01.

Women with cognitive disabilities did not report significant differences in their incidence of abuse compared to women with physical disabilities, nor did level of disability severity have a significant impact on reported abuse incidence. However, significantly more women who had paid PAS providers reported they experienced gossip compared to women with unpaid providers ([chi square] = 6.29; p = .01).

Table 2 presents the multiple significant differences in abuse incidence that were found between ethnic minority and Caucasian women and between women who had family PAS providers and nonfamily providers. Chi-square was used to examine the relationship between women's ethnicity and use of family or nonfamily PAS providers. Caucasian women were significantly more likely to use nonfamily providers compared to ethnic minority women who tended to use family PAS providers ([chi square] = 5.22; p = .02). Thus, there seems to be a relationship between ethnicity, use of nonfamily providers and incidence of lifetime abuse.

Lifetime abuse by any perpetrator. Responses to follow-up questions that asked the lifetime incidence of physical and sexual abuse by anyone indicated that 67% of the women experienced physical abuse and 53% of the women experienced sexual abuse. These rates of physical and sexual abuse are approximately twice those typically found for nondisabled women (National Research Council, 1996). No significant differences related to any of the demographic factors were found for these forms of abuse.

Hurtful PAS Behaviors

Our second research question examined the forms of personal assistance abuse women with disabilities consider most hurtful. Mean hurt ratings were calculated for each behavior and rank ordered. Table 3 lists the behaviors from most hurtful to least hurtful. All of the behaviors were rated within the quite hurtful to a lot hurtful range (M = 2.05 to 2.81). Behaviors rated 2.5 or higher (above the midpoint between quite hurtful and a lot hurtful) could be clustered into categories that include (a) physical, sexual, verbal and financial abuse or threat of abuse, (b) neglect, (c) withholding or destruction of equipment, (d) inappropriate administration of medications, (e) providing PAS while intoxicated, and (f) inappropriate exertion of physical or verbal control (e.g., pushes beyond limits, makes decisions without asking). Those PAS behaviors identified as most hurtful (2.5 or above) and having an incidence rate of 20% or higher included stealing money or personal items, forging checks or credit cards, threatening physical harm, being drunk or high on the job, insulting or putting down, yelling or screaming, making decisions without asking, handling roughly, snooping in belongings, denying choice and ignoring requests.

T-tests were used to detect the influence of demographic factors on mean hurt ratings. There were no significant differences in women's hurt ratings as a function of ethnicity, whether the PAS provider was a family member, friend or someone else, whether the women experienced a physical or cognitive disability or whether the women used paid or unpaid PAS. However, significant differences were found for severity of disability. Women with mild or moderate disabilities rated denial of a communication device (mean = 2.29; sd = .99) as significantly more hurtful (t = 6.88; p = .01) than women with severe disabilities (mean = 1.85; sd = 1.23). In contrast, women with severe disabilities rated arrives late/leaves early (mean = 2.41; sd = .76) as significantly more hurtful (t = 7.46; p = .01) than women with mild or moderate disabilities (mean = 2.08; sd = .89).

Percentages were calculated for women who indicated that their experience of these PAS abuse behaviors had impeded their employment, health care or independent living: 29.9% of the women reported the abuse behaviors impeded their obtaining or maintaining employment; 64.4% indicated that the behaviors impeded taking care of their health; and 60.9% reported that the behaviors impeded their living independently.

Barriers that Impede Women's Handling of Abuse

Our third research question focused on identifying the most critical barriers that impede women's handling of personal assistance abuse. As shown in Table 4, mean importance rankings were calculated for each barrier and rank ordered. All of the barriers were rated within the medium to big range (mean = 2.26 to 2.68). Barriers identified as the greatest (mean rating 2.5 or higher) for PAS abuse prevention and management included PAS provider factors (low wages, shortage of qualified providers and lack of back-up providers), lack of knowledge about abuse resources (don't know whom to call), embarrassment, and fear of provider backlash.

T-tests were used to examine the influence of demographic factors on mean importance ratings for PAS management barriers. There were no significant differences in mean barrier importance ratings as a function of women's ethnicity, type or severity of disability, or whether the PAS provider was a family, friend or someone else. Women who used unpaid PAS rated the personal assistant being a relative (mean = 2.75; sd = .44) as a significantly greater barrier (t = 7.15; p = .01) than women who used paid PAS (mean = 2.20; sd = .89). Women who used unpaid PAS also rated the personal assistant being a friend (mean = 2.75; sd = .44) as a significantly greater barrier (t = 8.54; p = .01) than women who used paid PAS (mean = 2.12; sd = .93).

Abuse Response Strategies

Our final research question investigated women's perceptions of the most helpful strategies that they and others could use to prevent and/or stop personal assistance abuse. As shown in Table 5. mean helpfulness ratings were calculated for each strategy and rank ordered. Consistent with women's ratings of key barriers, having a back-up personal assistant and being able to choose one's personal assistant were rated as the most helpful strategies for preventing or stopping abuse. Strategies that received a mean rating of 2.5 or higher focused on: (a) accessing resources (crisis line, emergency transportation, shelters, support groups); (b) defining the PAS relationship (setting appropriate limits, having clear personal assistant job duties); (c) building women's personal assistant management and communication skills (clear communication with PA, reminding oneself what behavior is and isn't okay); and (d) training women and their personal assistants to recognize abusive behavior.

Women also rated receiving help to screen personal assistants and to screen for abuse as helpful (mean = 2.56; sd = .77). However, only 21% of women indicated that their health provider had ever asked them about abuse. Women reported the following preferences for the person who should perform abuse screening: (a) 53.5% by a therapist; (b) 62.3% by a nurse; (c) 64.1% by a doctor; (d) 68% by a case manager; (e) 69% by an independent living staff person; (f) 75.9% by a religious person; and (g) 76.5% by a counselor.

T-tests were performed to evaluate the impact of demographic variables on women's mean helpfulness ratings for the abuse management strategies. Payment arrangement, severity or type of disability, or relationship to PAS provider (family, nonfamily) were not significantly related to strategy helpfulness ratings. There was one significant difference in strategy helpfulness ratings between ethnic minority women and Caucasian respondents. Ethnic minority women indicated that religious support (mean = 2.43; sd = .84) was significantly more helpful (t = 6.38; p = .01) than Caucasian women (mean = 2.10; sd = .93).

Discussion

The findings suggest that women with physical and physical and cognitive disabilities experience abuse by any perpetrator at approximately twice the rate than women without disabilities. Abuse by personal assistants takes many forms and poses significant obstacles to women's capacities to live independently, care for their health and work. Forms of PAS abuse include physical, sexual, verbal and financial abuse, threat of physical abuse, neglect, withholding or destruction of equipment, inappropriate administration of medications, providing PAS while intoxicated, and inappropriate exertion of physical or verbal control.

Women validated the importance of a number of barriers to PAS abuse management previously identified through our qualitative study. Barriers identified as most critical included low provider wages, don't know whom to call, shortage of qualified providers and lack of back-up providers; embarrassment, and fear of provider backlash. Women also highlighted a number of strategies for preventing or stopping PAS abuse, including having backup providers, choosing one's provider, having access to abuse resources (e.g. crisis line, support groups, emergency transportation), and having information and support necessary for clarifying and managing the PAS relationship.

Some differences in women's experiences and perceptions were associated with demographic factors, such as ethnicity, type and severity of disability, relationship to PAS provider, and provider payment arrangement. However, as a whole, women's responses were consistent across the survey. These findings challenge assumptions commonly held that women with particular characteristics, such as cognitive disability, are more vulnerable, face different barriers to PAS abuse management, and require different strategies to prevent or stop PAS abuse.

Caucasian woman reported higher levels of several forms of abuse compared to ethnic minority women. Women with nonfamily providers also reported a higher incidence of several types of abuse compared to women who used family providers. However, ethnic minority women were significantly more likely to use family providers than Caucasian women. The interpretation of these findings is unclear. It is possible that ethnic minority women experience lower levels of PAS abuse associated with having family caregivers. It is also possible that abuse disclosure is impacted by ethnicity or by having a family provider.

Although thought provoking, caution is recommended in interpreting these findings due to several notable limitations of the study; the most critical being the lack of representativeness of the sample. Women were selectively invited to participate in the study and a fairly small proportion of those women invited to participate elected to do so. In contrast to the general population of women with disabilities, a higher proportion of study participants experienced severe disability, had PAS providers who were not family or friends and received paid PAS. Thus, it is possible that women who chose to participate were more likely to have had abuse experiences than nonparticipants, and their identification of barriers and strategies may have been skewed by their experiences with formal PAS providers and systems. Participants were also recruited through disability service agencies or independent living centers and, through these connections, may have been made more aware of disability and abuse issues than the general population of women with disabilities. A final sampling limitation relates to our collection of data from primarily urban settings. It is possible that women from rural communities would report different abuse experiences and/or perceptions related to abuse management barriers and strategies than women from urban areas.

Another limitation of the study concerns the accuracy of women's self-reporting. The study asked women to report their abuse experiences and it is possible that their recollections were not accurate. However, literature on the accuracy of self-reporting indicates that when respondents clearly understand what information is being requested, have access to the information, and are willing to respond, the accuracy of self-report increases (Armstrong, Jensen, McCaffrey, & Reynolds, 1976; Laing, 1988), and can be as good or even better than other evaluation techniques.

Given these limitations, the study has a number of implications. Foremost, it suggests that abuse against women with disabilities is a problem that requires attention. However, rather than responding to the problem by increasing professional monitoring and supervision of care, women's level of endorsement of strategies such as choosing one's own personal assistant, setting appropriate limits with personal assistant, accessing support group and crisis line, and reminding oneself what is okay and what is not okay, suggest that the most useful approaches involve building women's capacities. The findings indicate that this can be accomplished by providing information, validation and resources that will enable women to clarify what behavior is abusive and should not be tolerated. Women also desire increased opportunity and support to find and select qualified PAS providers; to access emergency back-up providers, shelters and other essential services; and to manage their personal assistance relationship, whether with family members, friends or formal providers. While some of these strategies involve increasing women's knowledge and skill, most point directly to the need for system improvements, such as creating easy ways for women to obtain emergency personal assistance, providing wages that recognize the value of qualified PAS providers, enhancing the accessibility of shelters and crisis hot lines, and providing support groups and training experiences related to recognizing abuse and managing personal assistance relationships.

The findings also suggest that women receive little support from professionals to identify and respond to abuse and they would welcome being asked about their experiences and assisted to sort out their management options and access needed resources. Once again, such assistance would emphasize providing information and support to women in contrast to professional monitoring, reporting and intervention.

That women identified calling the police as one of the least helpful strategies suggests that additional effort is needed to clarify women's knowledge of circumstances under which abuse qualifies as a crime and police can be a useful resource. It also may indicate a need for bolstering officer knowledge, sensitivity and response to abuse against women with disabilities.

The findings highlight the need for additional research in a number of areas. Foremost, it is unacceptable that we do not have accurate population-based data on the prevalence of abuse against women with disabilities, given the voluminous literature available related to abuse against nondisabled women and the disturbing findings that have come from research to-date using purposeful samples. Research is also needed to further clarify women's experience of abuse by informal PAS providers (family members, friends) as well as strategies to prevent and respond to abuse in the context of those relationships. Findings from this study also highlight a number of strategies that have promise for promoting women's response to abuse. Additional research is needed to evaluate the usefulness of these approaches. Finally, it is critical that the investigation of abuse against persons with disabilities expands to include men. To date, virtually all research has focused on women and virtually nothing is known about the nature and response to abuse by men, who are also in relationships with PAS providers and face many of the same barriers identified by the women in this study.

Abuse against women with disabilities has become increasingly acknowledged in the last decade. Further research, model and policy development, and dissemination is essential if we are to genuinely assist persons with disabilities to promote their response to abuse. Such efforts must acknowledge and address the myriad of contextual barriers that stand in their way.

Table 1. Percent of women who reported lifetime experience of abuse
behaviors by personal assistance services providers (n = 200).

Behavior                                Percent

Leaves or doesn't show up                62.0
Does an inadequate job                   51.0
Arrives late/leaves early                49.0
Insults or puts down                     40.5
Ignores requests                         40.0
Makes decisions without asking           39.0
Steals money or items                    35.5
Yells or screams                         35.5
Gossips about woman                      33.0

Forges checks/credit cards               30.0

Denies choices                           29.0
Threatens to leave                       28.5
Interferes in personal business          27.0
Blocks path/puts things out of reach     26.0
Denies time alone                        26.0
Snoops in belongings                     25.0
Drunk or high on job                     23.0
Handles roughly                          21.0
Neglects physical needs                  19.5
Pressures for money                      20.0
Threatens physical harm                  20.0
Pushes beyond limits                     15.5
Violates body privacy                    15.0
Physically abusive                       14.0
Withholds, immobilizes or breaks         14.0
equipment
Withholds, steals, overdoses             13.5
medications
Touches sexually in unwanted ways        11.0
Withholds communication device           10.0
Threatens to hurt or hurts pets           7.0
Forces unwanted sexual activity           5.5
Abuses woman's children                   5.0
Table 2. Chi-square for significant differences in abuse incidence
related to ethnicity and relationship of PAS provider.

                                              Ethnicity

                                               Minority

Behavior                                 Observed    Expected

Denies choice                     No        68          60
                                  Yes       17          25

Drunk or high on job              No        74          65
                                  Yes       11          20

Pressures for money               No        76          68
                                  Yes        9          17

Neglects physical needs           No        76          68
                                  Yes        9          17

Touches sexually in unwanted      No        82          76
ways                              Yes        3          10

                                              Ethnicity

                                              Caucasian

Behavior                                 Observed    Expected

Denies choice                     No        70          78
                                  Yes       41          33

Drunk or high on job              No        76          85
                                  Yes       35          26

Pressures for money               No        82          90
                                  Yes       30          22

Neglects physical needs           No        80          88
                                  Yes       30          22

Touches sexually in unwanted      No        92          99
ways                              Yes       19          13

Behavior                                 [chi square] *

Denies choice                     No          6.63
                                  Yes

Drunk or high on job              No          9.26
                                  Yes

Pressures for money               No          7.99
                                  Yes

Neglects physical needs           No          8.34
                                  Yes

Touches sexually in unwanted      No          8.92
ways                              Yes

                                        Relationship of PAS Provider

                                               Family member

Behavior                                   Observed    Expected

Does an inadequate job            No          24          17
                                  Yes         13          20

Arrives late/leaves early         No          28          20
                                  Yes         10          19

Forges checks/credit cards        No          30          23
                                  Yes          8          15

Blocks path/puts things out of    No          32          26
reach                             Yes          5          11

Snoops in belongings              No          34          28
                                  Yes          4          11

Handles roughly                   No          31          26
                                  Yes          6          11

Pressures for money               No          36          29
                                  Yes          1           8

Violates body privacy             No          36          30
                                  Yes          1           8

                                        Relationship of PAS Provider

                                             Non-family member

Behavior                                   Observed    Expected

Does an inadequate job            No          33          40
                                  Yes         53          46

Arrives late/leaves early         No          36          45
                                  Yes         51          43

Forges checks/credit cards        No          47          54
                                  Yes         40          33

Blocks path/puts things out of    No          54          60
reach                             Yes         32          26

Snoops in belongings              No          56          63
                                  Yes         31          24


Handles roughly                   No          55          60
                                  Yes         30          25

Pressures for money               No          61          68
                                  Yes         26          19

Violates body privacy             No          63          70
                                  Yes         24          18

Behavior                                 [chi square] *

Does an inadequate job            No          7.30
                                  Yes

Arrives late/leaves early         No         11.1
                                  Yes

Forges checks/credit cards        No          6.95
                                  Yes

Blocks path/puts things out of    No          6.91
reach                             Yes

Snoops in belongings              No          8.27
                                  Yes

Handles roughly                   No         11.05
                                  Yes

Pressures for money               No         11.26
                                  Yes

Violates body privacy             No          9.99
                                  Yes

* p < .01.
Table 3. Mean hurtful ratings for PAS behaviors (n = 200).

Behavior                                Hurt Rating

                                        Mean      SD
                                       (range
                                        0-3)

Physically abusive                      2.81      .67

Abuses woman's children                 2.80      .66
Steals money or items                   2.80      .61
Forces unwanted sexual activity         2.78      .75
Forges checks/credit cards              2.77      .68
Threatens physical harm                 2.75      .74
Touches sexually in unwanted            2.74      .78
ways
Drunk or high on job                    2.70      .71

Withholds, steals, overdoses            2.67      .79
medications
Threatens to hurt or hurts pets         2.65      .78
Insults or puts down                    2.63      .72
Neglects physical needs                 2.63      .81
Yells or screams                        2.62      .77
Makes decisions without asking          2.56      .77

Handles roughly                         2.55      .80

Snoops in belongings                    2.55      .82
Withholds, immobilizes,                 2.53      .90
or breaks equipment
Denies choices                          2.53      .90
Ignores requests                        2.51      .82
Pushes beyond limits                    2.51      .84
Threatens to leave                      2.46      .86
Gossips about woman                     2.41      .84
Leaves or doesn't show up               2.39      .74

Blocks path/puts things out             2.39      .86
of reach
Does an inadequate job                  2.38      .75

Denies time alone                       2.37      .86
Violates body privacy                   2.35      .93
Pressures for money                     2.31      .91
Arrives late or leaves early            2.27      .84
Interferes in personal                  2.09     1.10
business
Withholds communication                 2.05     1.15
device
Table 4. Mean importance ratings of barriers to preventing or
stopping PAS abuse (n = 200).

Barrier                                           Importance

                                                Mean         SD
                                            (range 0 - 3)

Low wages for personal assistants               2.68         .69
Don't know whom to call                         2.65         .74
Shortage of personal assistants                 2.65         .69
No back-up personal assistants                  2.62         .70
Embarrassment from the abuse                    2.58         .77
Fear of personal assistant backlash             2.56         .72
Lack of knowledge about how to                  2.49         .74
recruit and train personal assistants
No support available to deal with               2.45         .81
the abusive situation
Crisis line won't understand                    2.37         .91
Personal assistant is a relative                2.32         .84
Personal assistant burnout                      2.31         .75
No shelters available                           2.31         .83
No equipment in shelters                        2.29         .78
No trained help in shelters                     2.29         .78
Unclear what to expect from                     2.29         .81
personal assistants
Personal assistant is a friend                  2.26         .90
Table 5. Mean helpful ratings of strategies for preventing or stopping
PAS abuse (n = 200).

Strategy                                           Helpful Rating

                                                        Mean        SD
                                                   (range 0 - 3)

Having a back-up personal assistant                     2.75        .51
Choosing own personal assistant                         2.75        .62
Access to crisis line                                   2.71        .67
Setting appropriate limits with personal
  assistant                                             2.68        .64
Access to emergency transportation                      2.67        .60
Support groups available                                2.66        .71
Clear personal assistant job responsibilities           2.65        .67
Remind oneself what is and is not okay                  2.65        .58
Clear communication with personal assistant             2.65        .56
Train personal assistant to identify what is
  abusive                                               2.61        .62
Train woman to identify what is abusive                 2.60        .58
Help to screen personal assistants                      2.56        .73
Health professional asking about abuse                  2.56        .77
Women conducting formal evaluations of personal
  assistants                                            2.54        .71
Help to determine what is abuse                         2.53        .62
Access to a shelter                                     2.50        .73
Being able to approve payments to personal
  assistants                                            2.43        .78
Media campaigns against abuse                           2.40        .99
Accessing information about appropriate
  personal assistant behavior                           2.35        .64
Religious support                                       2.25        .91
No advance payments for personal assistants             2.24        .81
Take protective steps against abuse                     1.97        .92
Calling the police                                      1.90       1.09

Acknowledgement

The authors express their appreciation to Ann Cuppola and Sherry Almandsmith at Berkeley Planning Associates for their assistance in collecting the survey interview data. This study was funded, in part, by a grant from the National Institute on Disability and Rehabilitation Research (NIDRR). NIDRR's endorsement of the opinions expressed in this manuscript should not be inferred.

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