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Understanding Caregiver Abuse as Domestic Violence: Systemic Change in Wisconsin
by Howard Mandeville and Maria Hanson
Many women with developmental disabilities have positive relationships with family, friends, and caregivers. We know that most direct support relationships are strong and genuine. But we also know that when a person with disabilities experiences violence, most often it is at the hands of a family member or a paid caregiver. These assaults and other abusive tactics allow perpetrators and systems to gain and often maintain power and control over the victim.
Power and control can play out in the lives of individuals with developmental disabilities in two ways. At the individual level, caregivers and family members may use isolation and abusive tactics to maintain power and control over the person with a developmental disability. The second means of power and control plays out in the structure of caregiving agencies that often depend on hierarchical and authoritative styles that grant powerful roles to caregivers in their relationships with consumers. The service models employed by agencies can also add to the isolation of both caregiver and consumer. Caregivers who must meet agency expectations to manage the lives of consumers and contain their behavior, without full consideration for their equality and interdependence, can act out their authoritative role in an abusive manner. Also, the isolation and privilege granted by this systemic power and control is a prime environment for abusive individuals to act out upon individuals with disabilities. All individuals, regardless of gender, face risk in these situations of power and control. Women with developmental disabilities, based on pervasive gender bias, face a higher risk of abuse.
About five years ago the volume of stories of abuse spilling out of our supported residential programs reached a tipping point in Wisconsin. Our Department of Health and Family Services fielded rumors and reports that prompted the development of local forums on abuse of people with developmental disabilities. These elicited difficult questions and disturbing stories of abusive caregiving relationships. Stories sometimes included system responses based on denial and cover-up. Agencies sometimes did not report abuse to law enforcement or their own system monitors for fear of consequences to their reputation or funding. Other stories indicated a tolerance for abusive relationships because of an apparent belief that punishment-based support was legitimate. Still others illustrated the risk of isolation, over-work, and lack of adequate supervision and support of caregivers.
Partnering to Address Abuse
The Wisconsin Council on Developmental Disabilities (WCDD) and the Wisconsin Coalition Against Domestic Violence (WCADV) created a partnership to understand these stories of abuse and identify systemic remedies. Both organizations are statewide advocacy groups fueled with a belief in the power of policy advocacy, system change, public awareness, coalition building, and targeted training. As we embarked on our joint project, representatives of these parallel but distinct systems quickly learned that there were a number of reciprocal lessons to be learned about each of our advocacy cultures. Disability advocates learned from advocates in the domestic violence field that responding to abuse as if caregiver stress is the central issue can unintentionally create an enabling sympathy for those caregivers who use stress as an excuse to hurt vulnerable people. Advocates from the world of domestic violence learned from disability advocates that in caregiving relationships gender was not the overwhelming determinant for who would be the victim or the perpetrator individuals of both genders were often represented in both positions. The advocates from the worlds of disability and domestic violence crafted a collaborative initiative targeting policy and practice changes in the developmental disabilities, domestic violence, sexual assault, and law enforcement systems.
Policy and Practice Changes in the Disabilities Field
The central insight from the domestic violence field is that family relationships in which power and control are noticeably out of balance have a higher risk of violence, while family relationships based on equality are more likely to be nurturing and safe. Imbalance in power and control is more lethal when combined with extreme social isolation.
When this insight is applied to typical supported residential arrangements, what do we find? Even in respected agencies, it is typical to find caregivers who understand their role to be primarily custodial they have responsibility for the person and control over the persons time, money, relationships, food, and movement. In the big and small aspects of relationship, the care-giver has the power; the person relying on his or her support does not. Often these relationships play out in environments isolated from any significant formal or informal scrutiny.
We undertook a project to inform the developmental disability system that the imbalance of power and control built into caregiving relationships supports overt and subtle violence against individuals with disabilities by those closest to them. This power imbalance is so pervasive it permeates program policy, agency culture, professional practice, and the personal dynamics in paid relationships. We developed training outlines and materials flexible enough to be tailored to learners in various roles in the service system: direct support professionals, program managers, system monitors, and policymakers, as well as people who rely on supports and their families. WCADV and WCDD hosted a series of train the trainer events to develop a core group of teachers equipped to bring our message to the various constituencies we identified. We organized this group as a speakers bureau and marketed it statewide through provider and advocacy networks. About 2000 people attended workshops, inservice trainings, and conferences where our presentations were made.
Our project also sponsored the development of model policies addressing caregiver abuse and neglect in Dane County (the Madison area). These establish protocols for discerning possible abuse and determining when notifying police authorities is warranted. We include information about the roles of the support, adult protection, and criminal justice systems. A new fact-finding role is identified which is intended to speed up notification of law enforcement. We want these policies to make clear that it is a law enforcement role to investigate whether the abuse discovered rises to a criminal level. It is the support systems responsibility to notify the police of the need for an investigation not to undertake a criminal investigation itself. Based on initial interest in this project, we anticipate that other Wisconsin counties may adapt these policies to fit their systems.
Policy and Practice Change Across Systems
The lives of women and men with disabilities are not contained within the developmental disabilities system. People rely on community infrastructures in their day-to-day lives. When the need arises, they expect to find responsive law enforcement systems and victim support resources. To be responsive, these community systems sometimes need to make accommodations in order to respond effectively to people with developmental disabilities.
Coordinated Community Response (CCR) is a team of players from various systems (criminal justice, domestic violence, sexual assault, health care, etc.) that fosters collaboration that promotes improved responses and more coordinated policies and practices. Developmental disabilities advocates have joined several local CCRs focusing on domestic violence and sexual assault. Their participation has resulted in heightened interest and awareness of disability issues and more competent responses when personnel in other systems encounter individuals with disabilities.
The Legal Advocate Project in Dane County developed a liaison role that bridges the disabilities system and law enforcement. The legal advocate supports crime victims with disabilities, assists law enforcement personnel in interviewing the victim, and fosters better understanding, coordination, and communication between law enforcement and the victims support system. The project has successfully engaged the interest and cooperation of police officers, detectives, and county district attorneys. The impact of this new role is strong in cases in which the district attorney needs help in assisting a crime victim with disabilities to prepare testimony.
Restraining orders are intended to keep alleged abusers away from their victims. The protection afforded Wisconsin citizens by restraining orders may not be available to some people with disabilities for a variety of reasons including:
- Some types of abuse are not defined in law, for example, financial exploitation or forced isolation.
- The status of the alleged abuser is not included in the definition of those against whom an action can be brought. For instance, an adult being harmed by a caregiver cannot bring a domestic abuse restraining order unless living with the caregiver.
- The status of the person being abused can be a limiting factor. An adult whose disability does not conform to the definition of vulnerable adult may not be able to generate a restraining order.
Our project is advocating for statutory revisions to broaden the definitions of who may obtain a restraining order, against whom a restraining order can be brought, and the range of actions for which a restraining order can be brought to include abuse occurring within caregiving arrangements. We also seek changes in the law that address issues involving guardians who are abusive, including the conversion of guardianship and protecting the victim from retaliation exercised through the abusers role as guardian. Restraining orders have long been tools of domestic violence prevention and we continue to use tools and years of experience from the domestic violence movement to improve our work to end abuse against individuals with disabilities.
The Wisconsin Coalition Against Domestic Violence has been advocating for victims of domestic violence since the beginning of the domestic violence movement more than 25 years ago. During that time, battered women and their children have benefited from major changes in community awareness, public policy and funding, and more positive responses from social service, criminal justice and health care systems.
However, women and men with developmental disabilities have rarely experienced the positive impact from these changes. In that 25-year period, thousands of people with disabilities moved from institutions or their family homes into community-based residential support programs. Many joined households staffed by paid caregivers whose role typically included an assumption of authority and control that domestic violence experts understand to be a risk factor for abuse in domestic environments. Now advocates from the domestic violence field and disability advocates are working together to help community supported residential programs be more sensitive to power imbalances that make people with disabilities more vulnerable. The partnership is also coordinating efforts to help domestic violence shelters, rape crisis centers, and law enforcement agencies tailor their responses to victims with disabilities.
Howard Mandeville is Program and Policy Advisor with the Wisconsin Council on Developmental Disabilities, Madison. He may be reached at 608/266-9538 or by e-mail at MandeHJ@dhfs.state.wi.us. Maria Hanson is former Training Coordinator with the Wisconsin Coalition Against Domestic Violence, Madison. The coalition may be reached at 608/255-0539.
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Resources: Resources Related to Violence Against Women with Developmental and Other Disabilities
Citation: Abramson, W., Emanuel, E., Gaylord, V., & Hayden, M. (Eds.). (2000). Impact: Feature Issue on Violence Against Women with Developmental or Other Disabilities, 13(3) [online]. Minneapolis, MN: University of Minnesota, Institute on Community Integration. Available at http://ici.umn.edu/products/impact/133/.
The print design version (PDF, 448K, 28 pp.) of this issue of Impact is also available for free, complete with the color layout and photographs. This version looks the most like the newsletter as it was printed.
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