Effective Advocacy at the Intersection of Domestic Violence and Traumatic Brain Injury /
A Collaboration between the Florida Coalition Against Domestic Violence and the Brain Injury Association of Florida /
TABLE OF CONTENTS
Section / Page NumberPeace of Mind Florida / 2
- Background
- What We Believe
- Our Purpose
Identified Need / 3
Critical Dialogue Key Themes / 5
Findings and Recommendations for Implementation / 9
Appendix
Instructions for Small Group Facilitators / 19
Guest Speakers and Event Facilitator Biographies / 19
Discussion Questions / 22
Small Group Themes / 24
Resources / 27
Glossary of Key Terms / 28
Peace of Mind Florida: Effective Advocacy at the Intersection of Domestic Violence and Traumatic Brain Injury
Peace of Mind Florida
Background
Peace of Mind Florida is a collaboration between the Florida Coalition Against Domestic Violence (FCADV) and Brain Injury Association of Florida (BIAF). In October 2010, as a result of the Office of Violence Against Women (OVW) Disability Grant Program, FCADV and BIAF joined together to form Peace of Mind Florida. Peace of Mind Florida is a partnership designed to address how FCADV and BIAF will increase their capacity to provide training and technical assistance at the intersection of domestic violence and traumatic brain injury to their respectivemembership organizations, staff and allied professionals.
What We Believe
The Peace of Mind Florida collaborative believes all Floridians who are survivors of domestic violence and traumatic brain injury should live in an environment that is accessible, responsive, comprehensive, and multicultural. Additionally, the environment must have sustainable services that foster empowerment-based advocacy and promote community integration and participation. Specifically, survivors should have options that offer them an autonomous life free of violence.
Our Purpose
Through this project, FCADV and BIAF intend to collaboratively create sustainable system changes and provide training and technical assistance to certified domestic violence center Advocates and Resource Facilitation Coordinators as they address the unique needs of survivors of domestic violence living with a disability as a result of a traumatic brain injury. This report includes recommendations for service providers who serve individuals at the intersection of domestic violence and traumatic brain injury.
Identified Need
During the Peace of Mind Florida Needs Assessment, survivors of domestic violence and individualsliving with a disability as a result of a traumatic brain injury consistently said that they value services from organizations that show a commitment to empowerment-based advocacy services by: respecting survivors’ right to confidentiality, believing and validating survivors’ experiences, promoting access to community resources, acknowledging injustice, respecting survivors’ autonomy, and helping survivors plan for safety.
Services based on empowerment are supportive of a survivor’s right to and need for self-determination. Advocacy is a balanced partnership, rather than one guided by directives and mandated services.
Survivors of domestic violence and domestic violence advocates reported that when an empowerment-based advocacy model is being actively practiced, the culture of the organization was more likely to be safe, accessible, and welcoming.
Some individuals living with a disability as a result of a traumatic brain injury reported that family members are vital in their recovery process.Other survivors reported that family members were not helpful as they do notunderstand “the new me.”
The Needs Assessment revealed a gap in service provision when working with family members, includingcaregivers, who are frequently the primary voice for individualsliving with a disability as a result of a traumatic brain injury. Survivors of traumatic brain injury reported that they often rely on the support and guidance offered by family members, friends, or caregivers to successfully reach their goals and/or utilize community resources. In contrast, survivors of domestic violence have reported that they cannot always rely on family members, friends, or caregivers for support due to confidentiality and safety concerns.
Data was collected from survivors of domestic violence, individuals living with a disability as a result of a traumatic brain injury, and service providers. The data revealed that most service providers were following an empowerment-based model of working with survivors. However, it was unclear if caregivers were also approaching survivors from an empowerment and strength-based perspective when providing needed support.The collaborative discussed this issue during the strategic planning process to determine if an empowerment-based advocacy model is feasible when family members are actively engaged in the recovery process for survivors. Additionally, data collected during the Needs Assessment revealed, at times, inconsistencies in advocates following the empowerment-based advocacy model which is a tenement of FCADV Program Standards. This led to additional dialogue to determine solutions to enhance advocates understanding of the model when working with survivors of domestic violence living with a disability as a result of a traumatic brain injury.
As a result of findingsfrom implementation of the Peace of Mind Florida Needs Assessment and discussions between the collaborative partners during the strategic planning process, the collaborative partners decided to host Critical Dialogues with key stakeholders to determine evidence-informed practices when working with survivors of domestic violence who are living with disabilities as a result of a traumatic brain injury. Critical Dialogues are learning conversations, which are structured, facilitated group exchanges among key stakeholders to explore in-depth ideas about a set of topics. Participants are asked to offer ideas and to suspend judgments. In a Critical Dialogue, the information-seekers benefit from a praxis of ideas, which are refined through group dialogue and through a series of progressive conversations that support identification of important themes. The themes are tested within the group for accuracy.
The Best Practices Workgroup, comprised of all levels of staff from FCADV and BIAF, coordinated and hosted the Critical Dialogue experience.
Critical DialogueKey Themes
Structure of Critical Dialogues
Participants
Participation at the Critical Dialogues event was by invitation through FCADV and BIAF members. Participants included: survivors of domestic violence, individuals living with a disability as a result of a traumatic brain injury, survivors of domestic violence also living with a disability as a result of a traumatic brain injury, domestic violence advocates, caregivers, traumatic brain injury support group leaders, and allied professionals.
Language
Throughout the dialogues, and in this document, the word “survivor” refers to individuals who have experienced domestic violence, individuals living with a disability as a result of a traumatic brain injury, and/or individuals who have experienced domestic violence and are living with a disability as a result of a traumatic brain injury.
Overview of the Event
The event was scheduled from 8:00 a.m. to 5:00 p.m. and included time for each participant to introduce themselves to the group. Guest speakers presented relevant background material to provide context for the day’s discussions. April Burgess-Johnson, a domestic violence advocate and trainer from Asheville, North Carolina, facilitated the event. She provided instructions for participants and speakers available in Appendix 1. The event facilitator’s biography is in Appendix 2. Participants were divided into five pre-determined groups for the small group dialogue sessions. There were two 1½ hour smallgroup dialogue sessions. Each group included representatives from the targeted audiences: survivors of domestic violence, individuals living with a disability as a result of a traumatic brain injury, individuals who experienced domestic violence and are living with a disability as a result of a traumatic brain injury, community service providers, and/or caregivers. Following the small group dialogue sessions, the event facilitator led two conversations with the entire group of attendees during which the participants identified recurring themes and developed recommendations by consensusconcerning best practices when working at the intersection of domestic violence and traumatic brain injury.
Guest Speakers Presentations
In order to establish common language and to frame the dialogues, three nationally recognized content area experts were asked to present information about personal experiences, current research, and effective strategies for addressing domestic violence and traumatic brain injury.
Sarah DeWard discussed the unique and nuanced challenges experienced by domestic violence survivors living with disabilities as a result of a brain injury. The existence of the injury means that survivors live with a constant reminder of the batterer and abuse. She explained that legal settings are especially challenging for survivors living with a disability as a result of a brain injury because court-related communication requires detailed, sequential, rapid, and clear statements.This type of communication may be impossible for individuals living with a disability as a result of a brain injury. Consequently, survivors may be viewed as less credible in court. Ms. DeWard presented the lack of accessible communication mechanisms in the legal system for survivors of brain injury as an under-recognized form of societal oppression.
For service providers, she discussed challenges with coordination of services and confidentiality. Survivors of domestic violence and traumatic brain injury tend to work with more service providers from varied backgrounds, and therefore more confidentiality concerns to navigate, as well as increaseddifficulty coordinating services effectively. She discussed the need for service providers to ensure survivor-centered advocacy and an empowerment philosophy to best meet the needs of survivors. She described strategies that local centers could employ to improve accessibility for domestic violence survivors living with a disability as a result of a traumatic brain injury, such as adapting shelter guidelines to be easier to remember and follow. Also, safety planning is an activity that often requires a lot of mental capacity because of the high number of things to remember. Ms. DeWard suggested creatingsafety plans that are functional, concrete, and concise.
Diane Dugan’s presentation was drawn from her personal experience as a family member of an individual living with a disability as a result of a traumatic brain injury and as an advocate. Ms. Dugan’s uncle sustained a traumatic brain injury after a car accident as a child. Subsequently, her mother became his caregiver when he was an adult. She recalled changes to his personality, appearance, and behavior that were not always immediately understood by those around him. Ms. Dugan’s mother cared for her brother, balancing his care with the needs of her family and the demands of her job. The family took an active role in educating him about his own medical care and helped him navigate service systems to obtain an apartment. He lived on his own, worked as a janitor, and had much joy in his life. Ms. Dugan reflected about how this experience impacted her and influenced her decision to seek a career in social work.
She recalled an experience working in a women’s substance abuse recovery program where she saw many survivors of domestic violence. She noticed the high number of women who disclosed they had experiencedhead injuries. When she reported the head injuries to her program managers, she was told that the survivors could seek support for those injuries after they completed rehabilitation for substance abuse. She cautioned against having programs that are structured so rigidly that they do not allow appropriate diagnosis, treatment, or aftercare for the myriad of co-occurring issues survivors may be experiencing.
In another setting, she noted the difficulty in obtaining complete records for teenage clients and saw many boys diagnosed with developmental delays who might have experienced brain injuries. Ms. Dugan shared examples from her work about survivors whose lives had been impacted by brain injury in a variety of ways. For example, one man became aggressive towards his wife as an after-effect of his brain injury. Upon calling a crisis line, his wife reported that she was scared to seek protection from the police due to her fear that they would misunderstand her husband’s injury. She only wanted protection for herself, not punishment for her husband. Another survivor had developed a strategy for self-advocacy that included carrying around a book that described the impact of her traumatic brain injury. When it seemed that a service provider was in need of additional information about how to best serve her, the survivor would provide them with the book to help them understand her experience. Ms. Dugan suggested that advocates develop tools to assist survivors in improving their ability to self-advocate when interfacing with service providers.
Kenya Fairley provided insight about some of the most relevant research about the intersection of domestic violence and traumatic brain injury. She noted that traumatic brain injury is a serious but often undiagnosed consequence of domestic violence. Her materials showedthat “brain injuries were associated with diminished cognitive abilities, which could help explain the apparent memory, attention, and concentration problems reported by many battered women.” She reiterated that livingwith a traumatic brain injury is a constant reminder of the experience of domestic violence, and advocated that service providers take care to respond to the physical and emotional needs of survivors. She reviewed several research studies, which revealed that among domestic violence survivors seeking emergency shelter or care in the emergency department, rates of traumatic brain injury ranged from 30-74%. The high rate of traumatic brain injury among domestic violence survivors is not met with an adequate service response.Instead, injuries are often overlooked or misinterpreted. A survivor’s headaches, dizziness, and memory loss can cause frequent disorientation and confusion (resulting in missed appointments), complaints of noise intolerance, difficulty with concentration, and ongoing fatigue or insomnia. These reactions are often misunderstood by health professionals and other service providers, and survivors can be labeled as “noncompliant, bothersome, or extremely impatient.” She cited studies which suggested that survivors who are perceived as “difficult” could be referred to advanced treatment including a neuropsychological evaluation, a neurological evaluation, or rehabilitation. Ms. Fairley noted that domestic violence shelters are often noisy places and can be a challenge for people with low noise tolerance. She discussed resources available for helping professionals to improve services to domestic violence survivors living with a traumatic brain injury.
Complete bios of guest speakers and the event facilitator are in Appendix 2.
Table Dialogues
Dialogue participants were divided into five groups and each group was facilitated by either a guest speaker or collaborative team member. The table facilitators were asked to communicate the structure for the critical dialogues, including group guidelines, using the speaker instruction form created for the event(See Appendix 1).The table facilitators were also responsible for recruiting a volunteer note-taker, monitoring time allotted for critical dialogues, leading the table through the discussion questions, orchestrating a conversation about emerging themes, and overseeing audio recording of the table dialogues.
Questions
Each table was provided with copies of questions which were used as discussion guides. Questions were developed usinga multi-step process. During the needs assessment process, the Best Practices Workgroup coordinated a series of focus groups with survivors to gather information about their service experiences and recommendations for service providers. For the purpose of continuity, the focus group questions were utilizedas a starting point, refined by the Best Practices Workgroup, and then further expanded by the Critical Dialogue Event Facilitator, to develop the questions used for the Critical Dialogues. The questions focused on three major concepts: 1) Safety, 2) Accessibility, and 3) Role of Caregivers/Social Support. The questions are listed in Appendix 3.
Information Synthesis
Following the small group dialogues, each table was asked to report on themes that emerged intheir conversations. The smallgroupgenerated themes were written on flip chartsin front of the entire room and sorted into four major categories: Safety, Accessibility, Role of Caregivers/Support People, and Other. Major discussion points for each of the small groups can be found in Appendix 4.
Following the small group reports, all participants were led through a process to identify recurring topics that emerged in multiple small groups. These recurring topics were then discussed inmore depth, and constitute the key findings and recommendations in this report.
Findings and Recommendations for Implementation for domestic violence advocates and service providers working at the intersection of domestic violence and traumatic brain injury.
The participants in the critical dialoguescame to consensus to establish ten clear objectives to improve the quality, effectiveness, and accessibility of services for people who are survivors of domestic violence living with adisability as a result of a traumatic brain injury.The objectives are not ranked based on priority or preference.
The ten objectives are:
- Provide service management support
- Treat survivors with respect
- Offer community and survivor education
- Use person-first language and person-centered planning
- Ask survivors what they need
- Ensure timely and widely available services
- Promote testing and diagnosis availability
- Create a holistic service approach
- Promote community among survivors, including peer support
- Communicate clearly and often
Implementation Strategies