Childhood Disability-Related Abuse: A Retrospective Proof-of-Concept Study

Abstract

Although the phenomenon of disability-related abuse has been well-documented in adults with disabilities, the occurrence of disability-related abuse in childhood has not been studied. Therefore, the purpose of this study was to establish proof of concept for childhood disability-related abuse. American adults (n = 485) retrospectively report on physical, sexual, and disability-related abuse that they experienced before the age of 18. The sample consisted of 382 participants with no disability, 55 participants with an adult-onset disability, and 48 participants with a childhood-onset disability. Disability-related abuse was conceptualized as involving either (a) the denial of assistive technology or (b) the denial of care, permission, or assistance with an activity of self-care. Childhood denial of assistive technology was rare in all groups (1.3%-2.1%), but denial of care, assistance, or permission was significantly higher in the childhood-onset disability group (20.8%) than either the adult-onset (7.3%) or no-disability (6.5%) groups. The three groups did not significantly differ in the rates of reported childhood physical or sexual abuse. This study provides preliminary proof-of-concept evidence for childhood disability-related abuse, particularly denial of care.

Keywords

abuse neglect disability disabled proof of concept denial of care

The increased and elevated rates of violence against people with disabilities have been well-documented in the scientific literature. This is demonstrated by recent systematic reviews and meta-analyses on violence against both adults (K. Hughes et al., 2012) and children (Jones et al., 2012) with disabilities, as well as lifetime abuse of those with disabilities (R. Hughes, Lund, Gabrielli, Powers, & Curry, 2011). For example, in their meta-analysis of abuse against children with disabilities, Jones and colleagues (2012) found that children with disabilities were 3.68 times more likely than children without disabilities to experience any maltreatment and 4.56 times as likely to experience neglect.

Researchers have consistently found that people with disabilities, including children with disabilities, experience higher rates of physical and sexual abuse than do their peers without disabilities (Jones et al., 2012; R. Hughes et al., 2011). However, researchers who study the abuse of adults with disabilities have found that adults with disabilities are also at increased risk for types of abuse specific to the presence of disability, sometimes referred to as disability-related abuse (Nosek, Foley, Hughes, & Howland, 2001; Oschwald et al., 2015; Saxton et al., 2001, 2006). Disability-related abuse refers to abuse which relies on the specific vulnerabilities that people with disabilities experience and thus would be unlikely to be experienced by those without disabilities. McFarlane and colleagues (2001) defined disability-related abuse as follows: (a) denial of assistive technology, such as wheelchairs, canes, walkers, or respirators and (b) denial of assistance with or refusal to allow someone to perform a basic activity of daily living, such as rising out of bed, eating or drinking, getting dressed, or going to the bathroom. Although individuals without disabilities could experience these things in the event of temporary illness or injury or in cases of extreme restraint by a perpetrator, they do not have the same propensity for prolonged reliance on equipment or human assistance in daily living and thus do not have the same vulnerability to these forms of abuse.

Measuring Disability-Related Abuse

Because disability-related abuse is generally specific to those with disabilities, relatively few studies have examined its prevalence (Hughes et al., 2011). In one of the first studies to measure disability-related abuse, McFarlane and colleagues (2001) adapted the Abuse Assessment Screen (AAS; Soeken, McFarlane, Parker, & Campbell, 1997) to include items specific to disability-related abuse. This adaptation consisted of one item assessing past-year physical abuse (“Within the last year, have you been hit, slapped, kicked, pushed, shoved, or otherwise physically hurt by someone?”), one item assessing past-year sexual abuse (“Within the last year, has anyone forced you to have sexual activities?”), one item assessing past-year denial of assistive technology (“Within the last year, has anyone prevented you from using a wheelchair, cane, respirator, or other assistive devices?”), and one item assessing past-year denial of care, assistance, or permission (“Within the last year, has anyone you depend on refused to help you with an important personal need, such as taking your medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink?”). All items have a dichotomous yes/no response option as well as a second question allowing the respondents to indicate the perpetrator or perpetrators of that abuse (intimate partner, care provider, health professional, family member, or other). The first two items were taken directly from the AAS, whereas the second two items were developed based on the results of a national survey of women with disabilities (Nosek et al., 2001), McFarlane and colleagues (2001) referred to this new four-item measure as the Abuse Assessment Screen-Disability (AAS-D) and piloted the AAS-D on a sample of 511 adult women with physical disabilities. They found that 7.8% of participants screened positive for past-year physical abuse, sexual abuse, or both, and an additional 2.0% screened positive for past-year disability-related abuse.

Since its initial development, the AAS-D and modifications of it have been used with a number of different populations. For example, Milberger and colleagues (2003) surveyed 177 women with physical disabilities using a modified version of the AAS-D to assess abuse that occurred “since the age of 18.” One hundred women reported histories of abuse, and 85 provided information on the type of abuse. Of those 85, 87% reported physical abuse, 66% reported sexual abuse, 19% reported denial of assistive technology, and 35% reported that denial of care, assistance, or permission related to an activity of self-care. In another example, Robinson-Whelen and colleagues (2014) modified the AAS-D to ask about lifetime rather than past-year abuse. They surveyed 213 women with diverse disabilities who were participating in a randomized controlled trial of an abuse awareness program. One hundred and fifty-two participants (71.4%) screened positive for any abuse, with 66.5% of the sample reporting physical abuse, 45.1% reporting sexual abuse, 5.6% reporting denial of assistive technology, and 16.4% reporting denial of care, permission, or assistance with self-care. In a third example, Findley, Plummer, and McMahon (2015) used a modified version of the AAS-D to assess past-year physical abuse, sexual abuse, denial of assistive technology, and denial of care permission, or assistance with self-care in a sample of 101 college students with disabilities. Twenty-one percent of participants reported experiencing some form of abuse over the past year, with 7.9% reporting physical abuse; 5% reporting sexual abuse; 1% reporting denial of assistive technology; 5% reporting denial of care, assistance, or permission; and 3% reporting financial abuse.

Disability-Related Abuse in Childhood

We are not aware of any studies examining disability-related abuse in childhood, either retrospectively or prospectively. Flindley and colleagues (2015) added two “general questions” about childhood (“before the age of 17”) physical and sexual abuse to their survey and found rates of 35.67% and 26.7% for retrospectively reported physical and sexual abuse, respectively. However, they did not provide the wording for those questions nor did they ask about childhood disability-related abuse.

It is possible that childhood disability-related abuse may have some overlap with neglect or medical neglect. As Proctor and Dubowitz (2014) note, “neglect” is a heterogeneously defined term in the world of child maltreatment. In general, neglect is thought as of failing to provide the “basic” needs of a child, such as food, habitable shelter, clothing, although what constitutes a “basic” need is often controversial, contextual, and unclearly defined (Proctor & Dubowitz, 2014). Neglect can also be broadly expanded to include things such as the failure to provide needed medical care in a timely manner (“medical neglect”), failure to provide or enforce attendance at an appropriate educational setting (“educational neglect”), failure to provide adequate supervision (Smith, Ireland, Thornberry, & Elwyn, 2008), or emotional neglect of a child (Proctor & Dubowitz, 2014).

Proctor and Dubowitz (2014) also note that the definition of neglect may change as children age or develop and their needs change. Thus, the type of behaviors that would constitute disability-related abuse via denial of assistance, care, or permission may only be relevant to very young typically developing children but may persist much longer in children with disabilities due to their functional limitations. Thus, such forms of abuse may not be considered as potential dangers by clinicians or child welfare workers who are unfamiliar with disability, either in general or specific to that child or adolescent. Similarly, denial of assistive technology may not fall under the recognizable umbrella of “medical neglect” due to the fact that the child or adolescent may own the device but be prevented from accessing it when needed (e.g., Saxton et al., 2006). This difficulty may be further exacerbated by the fact that disability and child welfare professionals are often siloed within their own systems. These professionals may not be aware of the needs, practices, standards, or terminology of the other system and may not work closely together (Corr & Santos, 2017). Thus, it is not clear to what extent, if any, disability-related abuse during childhood would be categorized or treated as neglect in reporting. Similarly, practitioners, including rehabilitation psychologists, who work with individuals with disabilities may not know to ask about disability-related abuse as part of their client history and it may not be documented in official records. Thus, disability-related abuse may go undetected and unreported despite the fact that it can lead to considerable physical and psychological harm (Saxton, Curry, et al., 2001; Saxton, McNeff, et al., 2006).

Purpose and Research Questions

The purpose of the present study is to conduct an exploratory, proof-of-concept study using a brief measure of retrospective physical, sexual, and disability-related abuse in adults with no disabilities, those with childhood-onset disabilities, and those with adult-onset disabilities. In particular, we are exploring the prevalence of two types of disability-related abuse (denial of assistive technology and denial of care, permission, and assistance) in all three groups to examine (a) to what degree disability-related child abuse is retrospectively reported by participants and (b) if participants with childhood-onset disabilities do indeed report greater prevalence of this abuse than those who did not report having a disability during childhood. Our research questions are follows:

How do participants with no disabilities, adult-onset disabilities, and childhood-onset disabilities compare their retrospective reporting of physical abuse, sexual abuse, denial of assistive technology, and denial of care, permission, or assistance with self-care before the age of 18?

What is the combined reported prevalence of disability-related abuse (i.e., denial of assistive technology and denial of care, assistance, or permission) before the age of 18 in each of three groups?

Does the addition of childhood disability-related abuse significantly change the proportion of participants who screen positive for any child abuse?

Who do participants report as the perpetrators of childhood disability-related abuse?

Method

Recruitment and Procedures

Participants were recruited as part of a larger study of violence victimization, disability, and mental health. Participants were recruited via Amazon Mechanical Turk (MTurk), an online participant recruitment system in which participants are paid small amounts (called “micro-compensation”) for completing advertised tasks (Buhrmester, Kwang, & Gosling, 2011; Mason & Suri, 2012). Participants were paid US$40 for completing the survey. To participate, participants had to (a) be age 18 or older, (b) be living in the United States, and (c) correctly answer five questions regarding their rights as participants. All data were anonymously collected from MTurk on a secure, university-based Qualtrics server, and responses were never linked to a participant’s name or MTurk identification number at any time. All procedures and recruitment materials were approved by a university institutional review board (IRB) prior to data collection.

MTurk has consistently been shown to be a recruitment platform that allows researchers to quickly and economically collect valid and reliable data (Buhrmester et al., 2011; Lund, Nadorff, Winer, & Seader, 2016; Mason & Suri, 2012; Thomas, Lund, & Bradley, 2015). MTurk samples are generally more demographically diverse than college student samples (Buhrmester et al., 2011). Lund, Nadorff, Galbraith, and Thomas (2018) found that about 20% of participants in their sample identified as having a disability or disabilities. This is roughly equal to prevalence of disability in the United States (Brault, 2012).

To further ensure the validity of our data, we employed an “attention check” item following the AAS-D items, which were located approximately in the middle of the survey. The item was phrased as follows: “To account for random clicking, please select “Agree” as your answer to this item.” Of the 520 participants who completed the item, only six (1.2%) failed the attention check and thus were removed from the sample. An additional 25 participants were removed from the sample for choosing “do not wish to say” to the disability identification item, and four more participants were removed for not providing the age of onset of their disability. Thus, the final sample size for these analyses was 485.

To analyze whether the 25 participants who were excluded for choosing not to identify their disability status differed from the 485 participants who did provide an answer to the item, we conducted a series of tests to compare the two groups. There was no difference between the groups in terms of education, χ²(7) = 8.36, p = .302; White race, χ²(1) = .287, p = .592; or age, t(508) = 1.29, p = .198. There was a significant difference in terms of gender, χ²(2) = 12.17, p = .002, with males being underrepresented (n = 3; 12%) in the group that did not disclose. However, this result should be interpreted with caution, given the small overall sample of those who did not disclose. Researchers may wish to examine whether there are constant gender differences in anonymous disability disclosure patterns in men and women. In addition, those who chose not to disclose disability status were more likely to report experiencing childhood sexual abuse, n = 9; 36%; χ²(1) = 5.03, p = .025, but did not significantly differ in their reporting of experiencing childhood physical abuse, n = 12; 48%; χ²(1) = 1.589, p = .208.

Participants

The participants in this study resided in 48 states and Washington, DC. The only two states not represented were North Dakota and South Dakota; two participants (0.4%) did not provide their state of residence. The most well-represented states were California (9.1%; n = 44), Texas (8.9%; n = 43), New York (6.2%; n = 30), Pennsylvania (6.2%; n = 30), and Florida (5.8%; n = 28).

The mean age of the total sample was 39.44 years (SD = 12.79; range = 18-79). In terms of gender, the total sample was 60.0% (n = 261) female and 39.6% (n = 192) male. Two participants (0.4%) identified their gender as “other”—one who identified as a transman and one who identified their gender as “queer.” In terms of race/ethnicity, 75.1% (n = 364) of the sample identified as White, non-Hispanic. A complete breakdown of race/ethnicity responses for the entire sample is available in Table 1.

Table 1.

Sample and Subsample Demographics.

Variable	No Disability (n = 382)	Adult-Onset Disability (n = 55)	Childhood-Onset Disability (n = 48)	All (n = 485)
Age in years (M, SD, range)	35.59 (12.61; 18-79)	44.49 (12.83; 23-72)	33.98 (10.83; 19-65)	36.44 (12.79; 18-79)
Gender
Male	40.6% (155)	36.4% (20)	35.4% (17)	39.6% (192)
Female	59.2% (226)	63.6% (35)	62.5% (47)	60.0% (291)
Other	0.3% (1)	0% (0)	2.1% (1)	0.4% (2)
Race/ethnicity
African American/Black	8.1% (31)	7.3% (4)	10.4% (5)	8.5% (41)
Arab/Middle Eastern	0.5% (2)	0% (0)	0% (0)	.4% (2)
Asian/Pacific Islander	7.3% (28)	3.6% (2)	8.3% (4)	7.0% (34)
Hispanic/Latino	7.6% (29)	9.1% (5)	8.3% (4)	7.8% (38)
Native American/ Alaskan Native	0.8% (3)	1.8% (1)	4.2% (2)	1.2% (6)
White/Caucasian	79.1% (302)	85.5% (47)	77.1% (37)	79.6% (386)
Other/not stated	0.5% (2)	0% (0)	0% (0)	0.4% (2)
White, non-Hispanic only	74.6% (285)	80% (44)	72.9% (13)	75.1% (364)

Disability

One hundred and three participants (21.2%) identified as having a disability or disabilities. Participants who did so were then asked to indicate what type or types of disabilities they have, with the response options of “physical/orthopedic,” “Deaf/hard of hearing or hearing impairment,” “blindness or visual impairment,” “psychiatric or mental health disability,” “traumatic brain injury,” “attention deficit hyperactivity disorder (ADD/ADHD), ” “autism spectrum disorder (including Asperger’s),” “chronic health condition,” and “learning disability.” Participants could select more than one option, and an “other” option was also provided. Responses to the other option were recoded to the appropriate category; this included one instance of multiple sclerosis (recoded as physical/orthopedic), one instance of multiple sclerosis and broken back (recoded as physical/orthopedic), one instance of “lack of limbs” (recoded as physical/orthopedic), one instance of epilepsy (recoded as chronic health condition), one instance of diabetes (recoded as chronic health condition), one instance of hidradenitis suppurativa (recoded chronic health condition), one instance of depression (recoded as psychiatric/mental health), one instance of anxiety (recoded as psychiatric/mental health), and one instance of dyslexia (recoded as learning disability). The most common types of disabilities reported were psychiatric or mental health disability (48.5%; n = 50), physical or orthopedic disability (40.7%; n = 42), and chronic health conditions (29.1%; n = 30). Data on all disability types can be seen in Table 2.

Table 2.

Disability Type by Subsample.

Disability Category	Adult-Onset (n)	Childhood-Onset (n)	χ²	p value
Physical/orthopedic	43.6% (24)	37.5% (18)	0.3997	.5272
Deaf/hard of hearing or hearing impairment	3.6% (2)	4.2% (2)	0.0193	.8895
Blindness or visual impairment	0% (0)	6.3% (3)	3.541	.0598
Psychiatric or mental health	49.1% (27)	47.9% (23)	0.0141	.9053
Traumatic brain injury	10.9% (6)	0% (0)	5.560	.0184
Attention deficit hyperactivity disorder (ADD/ADHD)	7.3% (4)	27.1% (13)	7.299	.0069
Autism spectrum disorder (including Asperger’s)	0% (0)	12.5% (6)	7.300	.0069
Chronic health condition	32.7% (18)	25.0% (12)	7.414	.3892
Learning disability	3.6% (2)	6.3% (3)	0.3791	.5381

In addition to their type of disability, participants were also asked, “If you have a disability or disabilities, at what age did you first acquire a disability?” The responses were then coded into two categories: childhood-onset (onset before the age of 18) or adult-onset (onset at age 18 or older). Forty-eight participants were placed in the childhood-onset group, and 55 were placed in the adult-onset group. The mean age of onset for the childhood-onset group was 9.09 years of age (SD = 5.93; range = 0-17). The mean age of onset for the adult-onset group was 31.08 years (SD = 11.42; range = 18-64). A comparison of disability types between the two groups can be seen in Table 2. As expected, autism spectrum disorders and ADHD were more common in the childhood-onset group, whereas traumatic brain injury was more common in the adult-onset group. The two groups did not differ significantly for any other disability category. In addition, the childhood-onset and adult-onset groups did not significantly differ in terms of the number of types of disabilities endorsed, t(101) = .929, p = .355.

Demographic comparisons between groups

Our analyses consisted of three groups: participants without disabilities (n = 382), participants with adult-onset disabilities (n = 55), and participants with childhood-onset disabilities (n = 48). The participants in the three groups did not significantly differ in terms of gender, χ²(2) = .6531, p = .721, or percentage of participants identifying as White, non-Hispanic, χ²(2) = .8186, p = .664. The childhood-onset disability group did not differ from the no-disability group in terms of current age, t(428) = –.847, p = .398. As can be expected given that the prevalence of disability increases with age (Brault, 2012), the adult-onset disability group was significantly older than both the no-disability group, t(435) = 4.879, p < .001, and childhood-onset disability group, t(100.90) = 4.509, p < .001. Demographic breakdowns for all three groups are available in Table 1.

Measure

In addition to the demographic and disability-related items described above, we used an expanded version of the AAS-D (McFarlane et al., 2001). Like that used by Robinson-Whelen and colleagues (2014), the version of the AAS-D used in our study asks about participants’ experiences with lifetime physical (“Have you ever been hit, slapped, kicked, pushed, shoved, or otherwise physically hurt by someone?”) and sexual (“Has anyone ever forced you to have sexual activities?”) abuse and also includes two disability-related abuse items. One of these items assesses denial of assistive technology (“Has anyone ever prevented you from using a wheelchair, cane, respirator, or other assistive devices?”), and the other assesses denial of assistance with or prevention from performing basic activities of daily living (“Has anyone you depend on ever refused to help you with or prevented you from doing an important personal need, such as taking medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink?”). Items are answered on a dichotomous (yes/no) basis. The item on denial of assistive technology also includes a “not applicable” option, which was combined with the “no” option for the purposes of our analyses, as described in our treatment of missing data. Items asking about who perpetrated each type of abuse follow each question.

To assess retrospective childhood (i.e., before the age of 18) abuse, we created new items to follow each lifetime abuse item. These items assessed physical abuse (“When you were under the age of 18, were you ever hit, slapped, kicked, pushed, shoved, or otherwise physically hurt by someone?”), sexual abuse (“When you were under the age of 18, did anyone ever force you to have sexual activities?”), denial of assistive technology (“When you were under the age of 18, did anyone ever prevent you from using a wheelchair, cane, respirator, or other assistive device?”), and denial or prevention of care (“When you were under the age of 18, did anyone you depend on ever refuse to help you with or prevented you from doing an important personal need, such as taking medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink?”) before the age of 18. Each item had yes/no response options. For each type of abuse, participants were asked, “if yes, who?” with the response options of “parent,” “care provider,” “health professional,” “other family member,” or “other.” The “other” option allows participants to enter text to specify a response. Participants could select multiple perpetrator types of each type of abuse.

Analyses

As described in the introduction, the main purpose of this study is to provide proof of concept for the measure of disability-related abuse (i.e., denial of assistive technology or personal care) in individuals with childhood-onset disabilities via retrospective reporting. Thus, the focus of our analyses is on the last two childhood abuse–related items (“When you were under the age of 18, did anyone ever prevent you from using a wheelchair, cane, respirator, or other assistive device?” and “When you were under the age of 18, did anyone you depend on ever refuse to help you with or prevented you from doing an important personal need, such as taking medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink?”). If these items are indeed assessing particular vulnerability specific to childhood disability, we would expect to see higher rates among those with childhood-onset disabilities compared with those with adult-onset or no disabilities. Thus, we used both individual and three-group chi-square tests to compare the rates of endorsement across each group. In addition, we compared the rates of childhood physical and sexual abuse across each group to see whether the childhood-onset disability group was just more vulnerable to abuse overall. In line with the work done by McFarlane and colleagues (2001) with the original AAS-D, we also examined whether the inclusion of disability-related abuse items increased the percentage of participants screening positive for childhood abuse overall. Finally, as part of the exploratory nature of this study, we included descriptive data on the reported perpetrators of childhood disability-related abuse.

Treatment of missing data

All participants had responses for at least one of the childhood abuse–related items on the AAS-D; however, some participants were missing responses to particular items. Because participants completed the lifetime item for each type of abuse before completing the childhood-specific item for that type of abuse, we looked to see whether those participants who were missing data for that item had answered “no”—or, in the case of the denial of assistive technology item, “no” or “not applicable”—to the associated lifetime abuse item. In all cases, they had done so, so we treated their missing responses to the associated childhood abuse item as “no [abuse].” To ensure that this did not artificially inflate or deflate the rates of abuse, however, we also re-ran all chi-square analyses for Research Question 1 with the missing responses excluded item-wise. This did not notably change the proportion of respondents reporting any type of childhood abuse in any group, nor did it change the significance level of any analyses. Thus, the analyses in which these missing responses are treated as “no abuse” response are included in the “Results” section below. The effects of item-wise deletion versus treating missing responses as “no abuse” responses are shown in Table 3.

Table 3.

Handling Missing Data for Childhood Abuse Prevalence.

Type of Abuse by Disability Group	Prevalence with Item-Wise Deletion of Missing Responses (%)	Prevalence With Missing Responses Treated as no Abuse (%)	χ²	p value
Physical abuse
No disability	58.9	58.6	.008	.931
Adult-onset	61.8	61.8	—	—
Child-onset	72.9	72.9	—	—
Sexual abuse
No disability	16.5	16.5	—	—
Adult-onset	18.2	18.2	—	—
Childhood-onset	29.2	29.2	—	—
Denial of assistive technology
No disability	1.6	1.3	.1145	.735
Adult-onset	2.1	1.8	.0095	.923
Childhood-onset	2.5	2.1	.0171	.896
Denial of care, assistance, or permission
No disability	6.6	6.5	.0015	.969
Adult-onset	7.3	7.3	—	—
Childhood-onset	21.7	20.8	.0115	.915

Results

Rates of Each Type of Childhood Abuse by Disability Group

Physical abuse

More than half of those with no disability (58.6%; n = 224) reported physical abuse. Of those with an adult-onset disability, 61.8% (n = 34) reported experiencing childhood physical abuse, compared with 72.9% (n = 35) of those with a childhood-onset disability. There were no significant differences in the percentage of participants reporting physical abuse between the three groups, χ²(2) = 3.411, p = .182, or in individual between-group comparisons.

Sexual abuse

Sixty-three participants without disabilities (16.5%) reported experiencing childhood sexual abuse. This compares to 10 (18.2%) of those with adult-onset disabilities and 14 (29.2%) of those with childhood-onset disabilities. Again, there were no significant differences in the rates of childhood sexual abuse between groups, χ²(2) = 4.656, p = .0975. However, when between-group differences were assessed separately, those with childhood-onset disabilities were significantly more likely to report childhood sexual abuse than those without any disabilities, χ²(1) = 4.660, p = .031. Those with adult-onset disabilities did not differ significantly from either those without disabilities, χ²(1) = .0986, p = .753, or those with childhood-onset disabilities, χ²(1) = 1.731, p = .188.

Denial of assistive technology

Experiencing denial of assistive technology during childhood was rare in all groups. Five participants without disabilities (1.3%) reported experiencing this type of abuse. One participant each from both the adult-onset (2.1%) and childhood-onset (2.1%) groups reported experiencing this type of abuse. As expected, the groups did not differ significantly on this item, χ²(2) = 0.241, p = .886, nor did they differ significantly in individual between-group comparisons.

Because a large number of participants (n = 190; 39.2%) indicated that the assistive technology item was “not applicable” to them on the lifetime denial of assistive technology item, we also conducted analyses examining only participants who had selected “yes” or “no” to the lifetime denial of assistive technology item. In doing so, we excluded one participant with missing data and 190 who had selected “not applicable” on the lifetime denial of assistive technology item; this resulted in a subsample of 294 participants. Of these 294 participants, 34 had missing data on the childhood denial of assistive technology item. Seven participants (2.4% of 294; 2.7% of 260) responded “yes” to the childhood denial of assistive technology item. The subsample sizes for each of three groups were as follows: no disability, 218 (28 missing); adult-onset disability, 42 (three missing); and childhood-onset disability, 34 (three missing). This resulted in five participants without disabilities (2.3%; 2.6% when those with missing data were excluded), one participant with an adult-onset disability (2.4%; 2.6%), and one participant with a childhood-onset disability (2.9%; 3.2%) reporting childhood denial of assistive technology. Unsurprisingly, this difference was not significant, either when participants missing data were excluded, χ²(2) = 0.039, p = .981, or counted as “no” responses, χ²(1) = 0.053, p = .974.

Denial of care, permission, or assistance

Twenty-five participants without disabilities (6.5%) reported denial of care, permission, or assistance with an activity of daily living during childhood, as did four participants (7.3%) with adult-onset disabilities. In contrast, participants with childhood-onset disabilities were about 3 times as likely as the other two groups to report denial of care, assistance, or permission during childhood, with 20.8% (n = 10) reporting such experiences. As expected, this difference was significant, χ²(2) = 11.82, p = .002. Participants without disabilities did not significantly differ from those with adult-onset disabilities, χ²(1) = .0412, p = .839. However, participants with childhood-onset disabilities were significantly more likely to report this type of abuse than both those without disabilities, χ²(1) = 11.644, p < .001, and those with adult-onset disabilities, χ²(1) = 4.0131, p = .0451).

Prevalence of Any Disability-Related Abuse

Among those without disabilities, 29 participants (7.6%) reported at least one type of disability-related abuse. One reported both denial of assistive technology and denial of care, permission, or assistance. Twenty-four reported denial of care, permission, or assistance only, and four reported denial of assistive technology only. Of those with adult-onset disabilities, four (7.3%) reported some form of disability-related abuse, with one reporting both forms of disability-related abuse and three reporting denial of care, assistance, or permission only. Of those with childhood-onset disabilities, 10 (20.9%) reported some form of disability-related abuse, with one reporting both types of abuse and nine reporting denial of care, assistance, or permission only.

Perpetrators of Childhood Disability-Related Abuse

With regard to denial of care, permission, or assistance, 21 participants without disabilities (84% of those without disabilities who reported denial of care) reported that the abuse was perpetrated by a parent, six (24%) reported another family member was a perpetrator, six (24%) reported a caregiver as perpetrator, and one (4%) reported another individual (teacher) as a perpetrator. Among those with adult-onset disabilities who reported childhood denial of care, all four reported that the perpetrator was a parent. Among those with childhood-onset disabilities who reported childhood denial of care, eight (80%) reported that a parent was the perpetrator, two (20%) reported that another family member was the perpetrator, and two (20%) reported that a health professional was the perpetrator.

With regard to denial of equipment, participants without disabilities indicated that the perpetrator was a parent (n = 3; 60%), care provider (n = 3; 60%), health professional (n = 3; 60%), or other (“friend”; n = 1; 20%). The one participant with an adult-onset disability who experienced childhood denial of equipment indicated that the perpetrator was a parent, and the one participant with a childhood-onset disability indicated that the perpetrator was a health professional.

Effects of Including Disability-Specific Childhood Abuse Items on Overall Rates of Childhood Abuse

When only physical and sexual abuse were included, 62.3% (n = 238) of those without disabilities, 65.5% (n = 36) of those with adult-onset disabilities, and 75.0% (n = 36) of those with childhood-onset disabilities screened positive for abuse. When both types of disability-related abuse were included, three more participants without disabilities screened positive for childhood abuse (63.1%; n = 241), and the number who screened positive in the adult-onset and childhood-onset disability categories remained unchanged. Thus, all participants with disabilities who reported some form of disability-related abuse during childhood also reported either physical or sexual abuse during childhood. Because of the high rate of physical abuse reported by participants, we also examined the effects of including only sexual abuse and disability-related abuse. This increased the percent screening positive from 16.5% (n = 63) to 20.7 (n =79) in the no-disability group, 18.2% (n = 10) to 23.6% (n = 13) in the adult-onset disability group, and 29.2% (n = 14) to 39.6% (n = 19) in the childhood-onset disability group. The change was not significant for the no-disability group, χ2(1) = 2.214, p = .137, the adult-onset disability group, χ²(1) = .495, p = .482, or the childhood-onset disability group, χ²(1) = 1.154, p = .283.

Discussion

In this study, we sought to provide a proof of concept and pilot measure analysis for the presence of disability-related abuse in childhood, as measured by retrospective self-report. We found that participants with childhood-onset disabilities were about 3 times as likely as those with either adult-onset disabilities or no disabilities to report childhood denial of care, permission, or assistance with self-care activities. This suggests that denial of care, permission, or assistance during childhood and adolescence may indeed be a product of specific vulnerability created by the presence of a disability rather than a universal vulnerability seen in children. In contrast, childhood denial of assistive technology was rarely reported by participants in any group, suggesting that it may be uncommon in childhood regardless of disability status. Perpetrators of disability-related abuse were mostly parents, but other family members, care providers, and health care professionals were also cited as perpetrating this abuse.

The rates of childhood abuse in this sample, particularly physical abuse, were high across groups. The high rates of physical abuse may, in part, be due to the fact that asking about physical violence that occurs before the age of 18 also incorporates physical violence and physical bullying from peers. Bullying or peer victimization is increasingly being recognized as a prevalent issue; for example, Wang, Iannotti, and Nansel (2009) studied bullying victimization in a representative sample of more than 7,000 American middle and high school students and found that more than 20% reported having been involved in physical bullying over the past 2 months, as a victim, perpetrator, or perpetrator victim. As with other forms of abuse and violence, peer victimization has been consistently linked to mental health problems (Fedewa & Ahn, 2011), including suicide and suicidal ideation (Klomek, Sourander, & Gould, 2010). Thus, asking about childhood abuse in addition to adult abuse may allow researchers to capture a broader picture of an individual’s experiences with victimization. In addition, the fact that the items asked about specific behaviors (e.g., punching, kicking) rather than using the terms “physical abuse” may have increased the likelihood of participants endorsing the item. Studies of bullying assessment have found that asking about specific behaviors rather than using broad terminology tends to increase likelihood that students may endorse victimization (deLara, 2012; Naylor, Cowie, Cossin, de Bettencourt, & Lemme, 2006), as not all students may be sure if their victimization constitutes “bullying.” Similarly, not all people may conceptualize their physical victimization as physical “abuse.”

Although the rates of denial of care, permission, or assistance were much higher in the childhood-onset disability group than the no-disability and adult-onset disability groups, all participants with childhood-onset disabilities who reported experiencing disability-related abuse during childhood also reported experiencing physical abuse, sexual abuse, or both during childhood. Even when examining childhood sexual abuse and disability-related abuse only, adding in disability-related abuse did not significantly increase the number of participants who screened positive for childhood abuse. Thus, it appears that disability-related abuse is relatively common among those with childhood-onset disabilities, but may occur largely in tandem with other, more commonly recognized forms of abuse. Still, disability-related abuse may confer additional risk, such as malnutrition, infection, or dehydration (Nosek et al., 2001; Powers et al., 2008), that may not be as prevalent with other forms of abuse. Thus, we would still advise clinicians and researchers to assess for disability-related abuse in addition to other, more common forms of abuse to better understand an individual’s experiences and vulnerabilities.

Limitations and Future Directions for Research

This study represents an exploratory, proof-of-concept study and thus has several limitations that should be noted. First of all, like many studies of child abuse (e.g., Berlin, Appleyard, & Dodge, 2011; MacMillan, Tanaka, Duku, Vaillancourt, & Boyle, 2013), the study relies on retrospective self-report. Because participants are being asked to recall experiences from their childhood, it may be possible that some of them could have forgotten about, misremembered, or misrepresented their experiences during childhood (Thornberry, Knight, & Lovegrove, 2012). In general, the research on concordance between retrospective self-reported childhood abuse and other forms of abuse reporting has been moderate but mixed (Smith et al., 2008). As Smith and colleagues (2008) note, both retrospective self-report and reliance on report of substantiated abuse have distinct advantages and limitations. Retrospective self-report may be influenced by things such as participant mood, memory, or re-contextualizing or reframing of events. Conversely, reliance on official records of substantiated abuse may have a tendency to produce false negatives. This may be an especially important consideration when asking about disability-related abuse, which may not be reported as abuse, formally assessed, or documented in child welfare records. Researchers may wish to examine for the presence or absence of disability-related abuse findings in child welfare records as well as the concordance between retrospective self-report of disability-related abuse and other forms of reporting. Similarly, researchers may wish to replicate this study in a sample of exclusively young adult participants due to the shorter time of recall required.

A second limitation of this study is the cross-sectional, self-reported nature of disability status. It is possible that some participants who reported adult-onset disabilities may have experienced some unrecognized symptoms or effects of their disabilities during childhood that may have still served to increase their vulnerability to abuse even prior to their diagnosis or recognition of disability. For example, an individual with a psychiatric or learning disability that was first diagnosed at the age of 20 may have experienced pre-diagnosis symptoms during childhood or adolescence that may have made them more vulnerable to abuse. Conversely, experiencing early abuse or neglect could make some individuals more vulnerable to developing disabilities in childhood or adolescence as a result of the physical or psychological consequences of abuse (Corr & Santos, 2017). Accordingly, longitudinal studies of disability status and abuse, including disability-related abuse, in childhood may be beneficial to better understanding this directionality. In addition, individuals may have had a childhood disability that resolved with treatment and may no longer have considered themselves to have a disability at the time of participating in the study, despite being vulnerable to disability-related abuse during childhood. Furthermore, not all participants with disabilities may have required disability-related assistance with activities of daily living, although all children do require some assistance with such activities when young, with the need for assistance generally decreasing as age increases. Thus, it may be helpful for researchers in future studies to ask whether the needed care that was denied was directly related to one’s disability status or related functional limitations.

A third limitation of the present study is that we assessed simply the presence of abuse-related experiences and not their magnitude or frequency. Although this is common in abuse research (see, for example, Finkelhor, Shattuck, Turner, & Hamby, 2014; McFarlane et al., 2001; Robinson-Whelen et al., 2014), it limits our ability to assess any differences in the intensity, topography, or duration of the maltreatment. Given that this study provides initial evidence of childhood disability-related abuse as a meaningful construct in individuals with childhood-onset disabilities, future research should examine the frequency, duration, and specific nature of childhood disability-related abuse.

A fourth limitation of this study is the small sample size (n = 48) of individuals with childhood-onset disabilities. Although acceptable for a small proof-of-concept study like this one, a small sample limits generalizability and our ability to do certain within-group analyses, such as analyses of disability-related abuse by disability type. Such analyses could be useful in future, larger studies of this type, as it is possible that the prevalence and experience of disability-related abuse could differ by disability type. For example, Hall-Lande, Hewitt, Mishra, Piescher, and LaLiberte (2015) analyzed child welfare and special education data for Minnesota and found that children who were receiving services for autism were significantly underrepresented in terms of medical neglect allegations, whereas children with other disabilities were significantly overrepresented in terms of medical neglect allegations. Thus, researchers should use larger samples in future studies to better understand if and how the prevalence of disability-related abuse differs by type of disability or other demographic characteristics, such as gender.

A fifth limitation of this study is that the online, MTurk-based means of data collection and the required comprehension check likely excluded participants with more significant cognitive limitations from participating. The survey was text-based but screen-reader accessible, thus allowing participation from those who use screen readers due to a visual disability. Given that children with intellectual disabilities may be particularly vulnerable to abuse (Jones et al., 2012), researchers may want to experiment with ways to directly recruit this population, such as contacting developmental disabilities agencies and using community-based research methods to ensure that all items are cognitively accessible (Oschwald et al., 2014).

Implications for Measurement, Reporting, and Practice

Our results support the use of disability-related abuse items in measures, including retrospective measures, of child abuse in people with childhood-onset disabilities. This is a novel area of childhood abuse measurement and should be further explored in future studies. In addition, child welfare agencies and workers may benefit from starting to document disability-related abuse as a distinct form of abuse to collect better, more comprehensive data on its prevalence. This would also allow for the comparison of self-report data on disability-related abuse with records of substantiated abuse and better enhance our understanding of the measurement of disability-related abuse. In addition, more comprehensive data could help tease out differences in the prevalence and incidence of disability-related abuse at different points in childhood, such as early childhood, and practice. Furthermore, the collection of such data at a systems level would both facilitate and require that child welfare workers receive training in recognizing and assessing disability-related needs and abuse. This would potentially enhance collaboration and cooperation between disability service and child welfare agencies and enhance disability-related knowledge among child welfare workers, which has been noted as a critical need (Corr & Santos, 2017; Shannon & Tappan, 2011).

In addition, rehabilitation professionals should be aware of and ask about client exposure to disability-related abuse across the lifespan, including in childhood and adolescence. Professionals working with child and adolescent populations should screen for both recent and past disability-related abuse in their clients, and professionals working with adult populations should screen for both childhood and adulthood in their clients. It is well-documented that childhood abuse can have long-lasting and significant effects on adult physical and mental health (Kendall-Tackett, 2002; Wegman & Stelter, 2009). Thus, understanding a client’s full abuse history is an important aspect of obtaining an accurate and helpful medical and psychological history. Because disability-related abuse is not a widely known concept, clients may not self-identify as having experienced this type of abuse if not directly asked about it. Professionals may find it helpful to use assessment measures specifically developed for use with people with disabilities, such as the AAS-D (McFarlane et al., 2001) or the Safer and Stronger programs (Lund et al., 2015; Oschwald et al., 2009). The Safer and Stronger programs use computer-assisted self-interviewing (CASI) technology to educate about and screen for abuse in people with diverse disabilities and may prompt higher rates of disclosure than would be obtained in a traditional face-to-face interview (Oschwald et al., 2009).

Finally, rehabilitation professionals who are working with other providers as part of interdisciplinary treatment teams should increase their colleagues’ awareness of disability-related abuse, including childhood disability-related abuse. For example, they may prompt an occupational therapist or social worker who is providing in-home services to the family of an adolescent with a severe orthopedic disability to assess whether the client is being given adequate assistance and opportunity to get dressed, use the bathroom, and access appropriate food in a timely manner, even if those needs would not normally be screened for due to the client’s chronological age. Likewise, they should also prompt colleagues to be aware of disability-related abuse perpetrated by nonfamily members, such as health care professionals and nonfamily care providers. This may include things such as noting if a client is being left on the toilet for an extended, unnecessary period of time or they are experiencing frequent delays in assistance for getting out of bed in the morning.

Conclusion

Although disability-related abuse has been well-documented in adults with disabilities, very little is known about disability-related abuse in childhood. In this study, we provided proof of concept of childhood disability-related abuse—specifically denial of care, assistance, or permission with activities of self-care—via retrospective reporting among adults without disabilities, with adult-onset disabilities, and with childhood-onset disabilities. Childhood denial of care, assistance, or permission was indeed significantly higher among those with childhood-onset disabilities and stood out as a distinct difference in retrospectively reported childhood maltreatment between the two groups. Further research should further explore the prevalence and nature of childhood disability-related abuse.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a subaward from start-up funds provided to Michael R. Nadorff by Mississippi State University.

ORCID iD

Emily M. Lund

Author Biographies

Emily M. Lund, PhD, CRC, is an assistant professor in the Department of Educational Studies in Psychology, Research Methodology, and Counseling at the University of Alabama. Her research interests include interpersonal violence against people with disabilities, suicide and self-injury and disability, and the experiences of psychology and counseling graduate students with disabilities.

Catherine P. Corr, PhD, is an assistant professor of special education at the University of Illinois. She is interested in supporting the well-being of young children with disabilities (birth-8 years old) and their families. Specifically, her research addresses issues of maltreatment, abuse, neglect, trauma, toxic stress, and poverty in the context of early childhood special education research, policy, personnel preparation, and practice.

Erin Kinavey, MEd, is a doctoral student in special education at the University of Oregon. Her research interests include early childhood education, trauma and maltreatment, and professional development, education, and teacher training in early childhood and special education.

Kelli N. Mott, MA, earned an MEd in child studies from Vanderbilt University, where she was involved in research involving early childhood education, maltreatment, and trauma.

Dalia Chowdhury, PhD, CRC is an assistant professor at University of North Texas, Denton. She works on violence and disability, suicide and trauma, addictions and co-occurring disorders. She is also interested in diversity and multicultural issues within rehabilitation.

Marilyn Hammond, PhD, is the executive director of the Utah Assistive Technology Foundation at the Utah State University Center for Persons with Disabilities. She has been involved in several state and national projects on violence against people with disabilities.

Katie B. Thomas, PhD, is a clinical psychologist at the Clement J. Zablocki VA Medical Center in Milwaukee, WI. She has research interests in interpersonal trauma, emotion dysregulation, and self-harm behavior.

Jared C. Schultz, PhD, CRC, is a professor in the Department of Disability and Psychoeducational Studies at the University of Arizona and the director of research at the UA Sonoran Center for Excellence in Disabilities. He is interested in supervision in rehabilitation counseling, transition services for adolescents, and competitive community-based employment.

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