Looking Beyond Prevalence

Abstract

The abuse of individuals with disabilities is a widespread problem that has received minimal attention in scholarly research on intimate partner violence (IPV). As a result, the literature offers neither a general demographic profile of IPV survivors with disabilities nor an examination of the relationships between IPV and individuals with specific types of disabilities. This article addresses these gaps by reporting the results of a retrospective case study review of 886 client files, covering an 8-year service period in a non-residential domestic violence disability program. The study examined key demographics along with familial, social, and contextual aspects of IPV among women with disabilities, and provides crucial information for service providers who must understand the multifaceted and unique needs of survivors. Findings are discussed in terms of their relevance to abuse-related outcomes and corresponding best practices with this population.

Keywords

intimate partner violence abuse disabilities

Intimate partner violence (IPV) affects women and men of varying cultural, ethnic, socioeconomic, and familial backgrounds. These identifying factors shape both the resources available to address IPV and the actions a survivor takes in response to abuse. Effective service provision requires a thorough understanding of these factors and their unique presentation for each survivor. This study examined the diverse demographic backgrounds of women with disabilities who sought assistance for issues related to their experiences of IPV from an agency working exclusively with this population.

Early research on IPV against women with disabilities established prevalence rates, risk factors for abuse, types of disability-related abuse, and the range of perpetrators (e.g., Milberger et al., 2003; Nosek, Howland, Rintala, Young, & Chanpong, 2001; Saxton et al., 2001; Young, Nosek, Howland, Chanpong, & Rintala, 1997). For example, it is now well established that women with disabilities are more likely to be abused than both women without disabilities and men with disabilities, and for longer periods of time (R. B. Hughes, Lund, Gabrielli, Powers, & Curry, 2011; Nosek et al., 2001; Smith, 2008). Furthermore, women with disabilities are more often subject to severe forms of physical abuse, including being kicked, punched, or bitten (Brownridge, 2006), yet also experience subtle forms of abuse exploiting aspects of disability, such as withholding medication or denying needed supports (Lund, 2011). The most common perpetrators of violence are former or current intimate partners (Young et al., 1997), but family members, caregivers, personal assistants, and medical providers also may be perpetrators (Curry et al., 2009; Milberger et al., 2003).

An important limitation of the current literature on IPV and disability is the absence of data from diverse samples of women. A literature review of 21 major studies on this topic noted the underrepresentation of women of color (R. B. Hughes et al., 2011). While demographic characteristics do vary geographically, and sample populations are often reflective of the areas in which research is conducted, their significance has nonetheless been largely unexplored. Acknowledging diversity further entails exploring the range of similarities and differences among women based on disability type. Literature on violence and women with disabilities has included a range of disabilities in study samples, yet generally fails to examine abuse among specific disability groups (R. B. Hughes et al., 2011), particularly among women with physical or sensory disabilities (K. Hughes et al., 2012). In general, women with disabilities are often further disadvantaged by structural inequalities related to race, gender, socioeconomic status, sexual orientation, and age (Ortoleva & Lewis, 2012). Explorations of the ways diversity and disability-specific factors may affect the experience of abuse for women with disabilities are essential for ongoing knowledge and skill development. A critical first step is the determination of a demographic profile of women with disabilities who were able to access support services for IPV.

Method

This retrospective study examines the client files of female survivors of IPV with disabilities who received services from Barrier Free Living, Inc.’s disability-specific non-residential domestic violence program, the Secret Garden.

Definition of IPV and Disability

The criteria used to determine disability and the definition of IPV are based on those utilized at the agency. At the time of agency intake, clients provided medical documentation and/or self-reported a disability diagnosis. Using standards set by the Americans With Disabilities Act (1990, P.L. 101-336), the agency defines disability as “a physical or mental impairment that substantially limits a major life activity” (Sec. 12102, para. 1). Beginning with this umbrella definition of impairment, the Secret Garden further categorizes disability as physical, psychiatric, developmental, or sensory. For the purposes of this study, physical disabilities encompass mobility disabilities and illnesses affecting physical functioning, such as a heart condition; mental illness is categorized as psychiatric disability; developmental disabilities include chronic physical and/or mental conditions affecting an individual prior to the age of 22, such as autism or mental retardation (Developmental Disabilities Assistance and Bill of Rights Act of 2000, P.L. 106-402); sensory disabilities comprise those disabilities affecting the sensory functions of hearing and seeing.

The Secret Garden uses standards established by the New York State Coalition Against Domestic Violence (2011) to define IPV which states that domestic violence entails “physical, sexual, psychological, disability-related, and economic abuse, and is perpetrated by one person against their intimate partner. Domestic violence can also be perpetrated by and/or against a member of the same family or household” (para. 1). Because some individuals with disabilities utilize personal assistance services or require aid from medical professionals on an intimate basis, we included these providers as potential perpetrators of IPV. This is consistent with several empirical studies (Curry et al., 2009; Milberger et al., 2003; Nosek, Hughes, Taylor, & Taylor, 2006) and more accurately reflects a comprehensive definition of IPV against individuals with disabilities.

Study Population and Setting

Secret Garden, located in New York City, is one of few programs nationwide dedicated exclusively to serving survivors of domestic violence with disabilities. Clients may be self-referred or referred from outside service agencies. Client eligibility criteria include the following: (a) current or previous experience of domestic violence, (b) a diagnosed or self-identified disability, and (c) a minimum age of 16 years.

Data Collection

Data collection commenced in January 2010 upon receipt of Columbia University Institutional Review Board approval. In adherence with the Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191), the Secret Garden destroys client files after a case has been closed for 7 years. Therefore, client files opened during the service period spanning January 2002-December 2009 (N = 1,056) were included for review. Of these client files, 81 were damaged during a series of floods at the facility over the study period, 70 addressed male survivors of IPV with disabilities, 1 referred to an individual who identified as transgender, and 18 did not include information on the client’s gender. The aforementioned cases were excluded from analysis; this study focuses on the remaining client files of female survivors of IPV with disabilities (n = 886).

Relevant information covering nearly 100 variables was extracted from various records within client files (e.g., psychosocial intakes, mental status exams, progress notes, hospital records, police reports). Variables included in the current analysis are as follows: age; race/ethnicity; country of origin; type of disability; marital status; employment status; whether client had children, and if so, with whom; history of physical and sexual abuse; utilization of police, medical services, and order of protection; and relationship with the abuser.

Data Analysis

Data analysis was conducted using SAS 9.2. We report frequencies and percentages for all outcomes. Percentages represent the percentage of available responses for each reported item. Because the amount of missing data varied across items, we report the frequency representing each percentage for each response. For tests of association between two categorical variables, Pearson’s χ² test of independence was used to examine whether the variables were independent of each other.

Results

Please refer to Tables 1 and 2 for detailed results. Main results and their implications are highlighted in the discussion section. Notable findings regarding demographic characteristics, marital status, children, past history of abuse, and additional psychosocial factors are discussed. The impact of disability type is explored for relevant variables.

Table 1.

Sample Demographic and Psychosocial Characteristics.

	n	%^a
Disability type
Physical disability	499	56.3
Psychiatric disability	636	71.8
Sensory disability	120	13.5
Developmental disability	74	8.4
Race/ethnicity
White	183	22.4
Non-White	635	77.6
Born within the United States	422	47.6
Born outside of the United States	214	33.7
Marital status
Married	329	42.8
Of married women: Married to abuser	273	83.5
Children (within women with children)
Has child(ren) (% of total)	602	76.2
Children in common with abuser	294	61.3
Abuser has harmed children	131	31.6
Lost custody of children	70	19.7
Involvement with New York City Administration for Children’s Services	84	28.4
Have obtained an order of protection^b	336	73.2
Additional factors^c
Have called police due to abuse	523	80.8
Have sought medical attention due to abuse	303	48.5
Have current order of protection	384	60.8
Have obtained order of protection in past	164	32.8
Abuser is client’s current or former intimate partner	721	86.6

Percentages represent the percentage of valid responses.

Women who have children were significantly more likely to obtain an order of protection, χ²(1) = 23.92, p < .001.

The mean age of the sample is 43.4 years (n = 804, SD = 11.3, range = 19-81 years).

Table 2.

Shared Similarities and Differences Within Disability Type.

	n	%^a
Sought medical attention due to abuse
Physical disability	191	49.1
Psychiatric disability	234	50.0
Sensory disability	39	44.3
Developmental disability	32	57.1
Currently employed
Physical disability	45	11.3
Psychiatric disability	60	12.7
Sensory disability	14	15.4
Developmental disability	3	6.1
History of physical abuse as a child
Physical disability	129	49.8
Psychiatric disability	150	47.0
Sensory disability	26	50.0
Developmental disability	14	36.8
History of sexual abuse as a child
Physical disability	134	48.2
Psychiatric disability	177	49.0
Sensory disability	14	24.1
Developmental disability	16	38.1

Percentages represent the percentage of valid responses.

Discussion

The findings illustrate the extent to which women with disabilities are diverse socially, culturally, and demographically. Each woman’s assessment, intervention, outreach, safety planning, and criminal justice needs are shaped by her disability profile. Accordingly, meaningful social work-related services must consider not only aspects of identity that have been long recognized for their importance (e.g., race/ethnicity, sexual orientation, immigration status) but also the full range of modifications required to ensure equal access across disability types.

Women of color comprised the majority of this sample. Previous research focusing on Caucasians with disabilities likely excludes countless women who have sought assistance. Furthermore, a significant proportion of the sample was born outside of the United States. This diversity reflects the larger population of New York City from which the sample was drawn. For instance, 36.9% of New York City’s residents are foreign born, and 56% are non-White (United States Census Bureau, 2010). In areas with diverse international populations like New York City, women with limited experience in the United States may need assistance with a range of issues, such as immigration, navigating a foreign criminal justice system, and contending with cultural bias.

In this sample, the most common perpetrators of abuse were intimate partners. This finding debunks the stereotype that women with disabilities are asexual or undesirable as intimate partners, a belief that has fueled the failure of IPV service agencies and researchers to acknowledge IPV among women with disabilities (Mays, 2006), and offers a clear direction for improving IPV interventions. If a woman is dependent on her intimate partner for assistance with activities of daily living (ADLs), reporting abuse could result in the loss of the individual responsible for helping her meet her most basic needs. In addition, a woman’s fear that leaving the relationship will lead to further isolation is an obstacle to successful separation and safety planning. A practitioner may assist survivors in establishing plans for backup care, provide guidance on hiring and managing those who assist them, or facilitate achievement of new skills or skill levels (e.g., using adaptive equipment for cleaning and cooking) that will decrease their need for support from others for ADLs (Saxton et al., 2001).

The number of women in the sample who were married or had children also challenges stereotypical portrayals of women with disabilities as single and childless (Mays, 2006). Almost half were married, and two thirds had children. IPV interventions must consider the needs of these women as spouses and mothers. Legal advocacy may be warranted to assist with divorce or custody proceedings. The possibility of losing custody of one’s children is a great deterrent to reporting abuse among women with disabilities, as perpetrators may erroneously claim that disability negatively affects parenting ability (Ortoleva & Lewis, 2012). On the other hand, having children may prompt a woman with disabilities to take steps to address abuse she is experiencing. The finding that women with children were significantly more likely to obtain an order of protection than women without children raises the possibility that mothers may be moved to seek assistance to protect their children. Practitioners should comprehensively address various options and potential outcomes with clients.

Nearly half the sample had histories of childhood physical or sexual abuse. Women with physical and sensory disabilities were more likely to be survivors of childhood physical abuse; women with psychiatric disabilities were more likely to be survivors of childhood sexual abuse. The disparity of abuse rates across disability groups in this sample suggests the extent to which a woman’s experience of IPV may be shaped by disability status and highlights an important area of further inquiry. Many worthwhile questions remain unexplored. For instance, are women with physical and sensory disabilities more likely to experience childhood physical abuse because the barriers to reporting abuse made it difficult to access help? Did abusers target these groups because of their perceived vulnerability? Likewise, do women with psychiatric disabilities develop mental health conditions such as post-traumatic stress disorder as a result of childhood sexual abuse, or does psychiatric disability precede the childhood abuse? Discovering answers to these critical questions is impossible when women with disabilities are treated as a homogeneous group in research on IPV.

Almost 72% of this sample was diagnosed with a psychiatric disability of some type, and the majority of women with physical disabilities also had a psychiatric disability. However, less than half of all safe homes, shelters, and transitional housing services in the United States provide mental health services to survivors of IPV (Douglas & Hines, 2011). Agencies addressing IPV, particularly those serving women with disabilities, must offer comprehensive mental health services. This unmet need warrants immediate attention. Untreated mental illness further compromises a woman’s ability to respond effectively to abuse and other unsafe situations (Hoog, 2004). Likewise, a woman’s ability to respond effectively to abuse is influenced by her economic status, which is often connected to employment status (Smith & Strauser, 2008). Few women in the sample were employed, with a range of only 6% to 15% reporting current employment at the time of contact with the Secret Garden. Findings are consistent with research indicating women with disabilities who have experienced physical and sexual abuse are more likely to be unemployed (Smith & Strauser, 2008). While the direction of the relationship between past abuse and unemployment is not clear, this finding indicates the need for vocational and financial assistance for survivors of IPV with disabilities. Moreover, it guides practitioners to consider the additional needs such as permanent housing and accessible affordable health care accompanying unemployment and low socioeconomic status among women with disabilities who have experienced IPV.

Limitations

The data examined in this study were originally collected by social workers at client intake and were intended for internal agency monitoring of clients’ service needs. As is the case with all secondary analyses, we had to contend with the limitations of the original data including incomplete case notes and psychosocial assessments. Variables were sometimes defined or categorized differently than the researchers would have chosen, thereby altering the questions we sought to answer. Missing information within client files for certain variables was the largest limitation. A number of potentially informative variables had to be dismissed due to missing information across a large number of files. These included variables such as the individual’s highest level of education, duration of IPV, and frequency of various types of IPV. Such variables would have enhanced our understanding of survivors of IPV with disabilities and added to our recommendations for best practices with this population. Finally, our sample included only the client files of women with disabilities who had sought assistance for IPV. Information about women who are unable or choose not to access such services is also worthy of exploration.

Directions for Future Research

The study findings present a multicultural profile of women with disabilities who have sought services for issues related to their experiences of IPV. Additional research should use diverse samples to develop and empirically validate interventions for survivors with disabilities. Currently, IPV interventions used with the general population include crisis intervention, safety skills promotion, connection to information and resources, and long-term individual and group counseling. Despite assertions that intervention methods should address the interplay of disability, abuse, and related psychosocial dimensions (Copel, 2006), the potential utility of these interventions with women with disabilities remains unexplored.

Conclusion

Women with disabilities are a population of unique individuals with multifaceted needs, desires, and strengths. Research that does not recognize and explore this heterogeneity will yield practices and programs that fail to address important social, environmental, and political implications of race, marital and parental status, and disability type. This study is the first step in a line of research aimed at uncovering the demographic and disability-specific factors influencing the needs and actions of survivors of IPV with disabilities. These findings, in turn, can be used to inform the development of culturally sensitive, evidence-based interventions for this vulnerable population.

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 and/or authorship of this article: The Loreen Arbus Foundation has generously provided funding to assist with the analysis and dissemination of the research detailed in this article.

Author Biographies

Michelle S. Ballan is assistant professor of social work at Columbia University and faculty associate for the Columbia University Center for Bioethics. Her research, teaching, and service is dedicated to individuals with intellectual and developmental disabilities. She has published more than 20 manuscripts. She is the recipient of several awards including the prestigious 2010 Columbia University Presidential Teaching Award, Texas Excellence Teaching Award, and Services for Students with Disabilities Faculty Award. She is a mentor for international human rights disability advocates affiliated with the Institute for the Study of Human Rights. She convenes the Columbia University Seminar on Disability Studies and is the Faculty Advisor for the Disability Caucus. She is the recipient of the 2010 Association on Higher Education and Disability Recognition Award for her outstanding contributions to campus programs for students with disabilities and the 2011 recipient of the Early Career Award from the American Association on Intellectual and Developmental Disabilities. In 2013, she received a grant from the Loreen Arbus Foundation to explore the impact of IPV on women with disabilities. She serves on the editorial board of Social Work and is a reviewer for numerous journals in the fields of disability studies. She is a board member for Services for the Underserved and has worked as a practitioner and an educator in various community settings with individuals with disabilities including the New Jersey Brain Injury Association, Women Helping Women, Safeplace and schools.

Molly Burke Freyer received her MSW from Columbia University and is pursuing a PhD in social work at New York University. Her work with survivors of domestic violence (DV) with disabilities commenced during her internship at the King County District Attorney’s Office. Upon graduation with her MSW, she served as the assistant director of Barrier Free Living’s Non-Residential Domestic Violence Program, a DV agency serving individuals with disabilities. She is currently the project director of a retrospective case study of the demographics of 1,000 clients of a DV program for individuals with disabilities.

C. Nathan Marti is a biostatistician at the Oregon Research Institute. He has extensive experience with complex data analyses, such as hierarchical linear modeling, structural equation modeling, and meta-analysis. He has served as a statistical consultant on numerous projects, many of which include intervention assessments and involve psychometric assessment of instruments. He is currently involved in a project assessing the impact of homework in cognitive behavioral therapy with the Treatment for Adolescents With Depression Study team. He also has extensive experience managing and cleaning large, complex data.

Jules Perkel, LMSW, is a social worker practicing domestic violence counseling and therapy at Barrier Free Living’s Non Residential Domestic Violence Program, the Secret Garden. Ms. Perkel first began working with survivors of domestic violence with disabilities during her first year social work master’s internship at Barrier Free Living’s Non-Residential Domestic Violence Program. She received her MSW at Columbia University’s School of Social Work.

Katie A. Webb, LCSW, is assistant director at Barrier Free Living’s Non-Residential Domestic Violence Program for individuals with disabilities. She formerly served as the liaison to the Brooklyn District Attorney’s Office as part of the Barrier Free Justice Project, which serves crime victims with disabilities. She trains professionals and community members throughout New York City and State on working with victims of interpersonal violence who have disabilities. She received her master of science in social work from New York University.

Meghan Romanelli, LMSW, currently works at Barrier Free Living’s Non-Residential Domestic Violence Program, the Secret Garden. She provides individual and group counseling to survivors of DV who have a wide range of disabilities, including physical, intellectual, developmental, sensory, and psychiatric diagnoses. She also serves as the liaison to the Brooklyn Family Justice Center, King’s County District Attorney’s Barrier Free Justice Project—providing services to individuals with disabilities involved in criminal court cases—and Project SHIELD, which provides advocacy for survivors of sexual assault with intellectual and developmental disabilities. In addition to her work with Barrier Free Living, she co-facilitates the Lesbian, Gay, Bisexual, & Transgender Community Center’s Lesbian Cancer Initiative’s LBT Cancer Survivor Support group.

References

Americans with Disabilities Act of 1990, Pub. L. No. 101–336, §12102 (1991).

Brownridge

D. A.

(2006). Partner violence against women with disabilities: Prevalence, risk, and explanations. Violence Against Women, 12, 805-822.

Copel

L. C.

(2006). Partner abuse in physically disabled women: A proposed model for understanding intimate partner violence. Perspectives in Psychiatric Care, 42, 114-130.

Curry

M. A.

Renker

Hughes

R. B.

Robinson-Whelen

Oschwald

Swank

P. R.

Powers

L. E.

(2009). Development of measures of abuse among women with disabilities and the characteristics of their perpetrators. Violence Against Women, 15, 1001-1025.

Developmental Disabilities Assistance and Bill of Rights Act of 2000, Pub. L. No. 106–142, [S] 102, Stat. 1684 (2000).

Douglas

E. M.

Hines

D. A.

(2011). The reported availability of domestic violence services to victims who vary by immigration status, primary language, and disability. Partner Abuse, 2, 427-451.

Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat. 1936. (1996).

Hoog

(2004). Model protocol on safety planning for domestic violence victims with disabilities. Seattle, WA: Abused Deaf Women’s Advocacy Services for the Washington State Coalition Against Domestic Violence.

Hughes

Bellis

M. A.

Jones

Wood

Bates

Eckley

. . .Officer

(2012). Prevalence and risk of violence against adults with disabilities: A systematic review and meta-analysis of observational studies. The Lancet, 379(9826), 1621-1629.

10.

Hughes

R. B.

Lund

E. M.

Gabrielli

Powers

L. E.

Curry

M. A.

(2011). Prevalence of interpersonal violence against community-living adults with disabilities: A literature review. Rehabilitation Psychology, 56, 302-319.

11.

Lund

E. M.

(2011). Community-based services and interventions for adults with disabilities who have experienced interpersonal violence: A review of the literature. Trauma, Violence, & Abuse, 12, 171-182.

12.

Mays

(2006). Feminist disability theory: Domestic violence against women with a disability. Disability & Society, 21, 147-158.

13.

Milberger

Israel

LeRoy

Marin

Potter

Patchak-Schuster

(2003). Violence against women with physical disabilities. Violence and Victims, 18, 581-591.

14.

New York State Coalition Against Domestic Violence. (2011). About domestic violence (Online information sheet). Retrieved from http://www.nyscadv.org/about-domestic-violence/

15.

Nosek

M. A.

Howland

Rintala

D. H.

Young

M. E.

Chanpong

G. F.

(2001). National study of women with physical disabilities: Final report. Sexuality and Disability, 19, 5-40.

16.

Nosek

M. A.

Hughes

R. B.

Taylor

H. B.

Taylor

(2006). Disability, psychosocial, and demographic characteristics of abused women with physical disabilities. Violence Against Women, 12, 838-850.

17.

Ortoleva

Lewis

(2012). Forgotten sisters—A report on violence against women with disabilities: An overview of its nature, scope, causes, and consequences (Northeastern Public Law and Theory Faculty Research Papers Series No. 104–2012). Retrieved from http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2133332

18.

Saxton

Curry

M. A.

Powers

L. E.

Maley

Eckels

Gross

(2001). “Bring my scooter so I can leave you”: A study of disabled women handling abuse by personal assistance providers. Violence Against Women, 7, 393-417.

19.

Smith

D. L.

(2008). Disability, gender, and intimate partner violence: Relationships from the Behavioral Risk Factor Surveillance System. Sexuality and Disability, 26, 15-28.

20.

Smith

D. L.

Strauser

D. R.

(2008). Examining the impact of physical and sexual abuse on the employment of women with disabilities in the United States: An exploratory analysis. Disability and Rehabilitation, 30, 1039-1046.

21.

United States Census Bureau. (2010). Profile of general population and housing characteristics: 2010 demographic profile data. Retrieved from http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=DEC_10_DP_DPDP1

22.

Young

M. E.

Nosek

M. A.

Howland

Chanpong

Rintala

(1997). Prevalence of abuse among women with physical disabilities. Archives of Physical Medicine and Rehabilitation, 78(Suppl.7), S34-S38.