Needs Assessment Report from the Washington State disAbility Advocacy Project This project is supported by Grant No. 2006-FW-AX-K015 awarded by the Office on Violence Against Women, U.S. Department of Justice. The opinions, findings, conclusions, and recommendations expressed in this publication are those of the authors and do not necessarily reflect the views of the Department of Justice, Office on Violence Against Women. Needs Assessment Report -dAP Table of Contents Section1–OverviewoftheProject.................... 3 Section 2 – Overview of Selected Communities . . . . . . . . . . . 5 Section 3 – Overview of the Needs Assessment Plan . . . . . . . 7 Section4–NeedsAssessmentFindings................. 12 GapsandBarrierstoServices............ 12 Gaps and Barriers to Effective Outreach . . . . 28 Opportunities for Collaborative Advocacy . . . 32 Appendix A – Mission & Vision of the disAbility Advocacy Project 36 Appendix B – Criteria for the Selection of Pilot Sites . . . . . . . . 37 Appendix C – Themes from Focus Groups and Interviews . . . 38 Appendix D -Demographic and Statistical Information . . . . . 48 2 Needs Assessment Report -dAP _____________________________________ Section1OverviewoftheProject In 2006, the disAbility Advocacy Project (dAP) of the Washington State Collaboration received a three year award from the Office on Violence Against Women, Education and Technical Assistance Grants to End Violence Against Women with Disabilities Grant Program. The lead agency for the grant is the Washington State Coalition Against Domestic Violence. The collaborative partners of the disAbility Advocacy Project include the Abused Deaf Women’s Advocacy Services, Disability Rights Washington, and the Washington Coalition of Sexual Assault Programs. Survivors of domestic violence or sexual assault who have disabilities need accessible services wherever they choose to seek them – whether at a local domestic violence program, a local sexual assault program, or a disability advocacy agency. The immediate goal of the dAP partnership is to improve the accessibility of services for survivors with disabilities at the local level. Needs Assessment To accomplish this goal, the dAP decided to conduct a needs assessment in a variety of Washington state communities that reflect the demographic and cultural diversity of the state. Following the needs assessment, the partners want to form pilot sites, which we call dAP Community Collaborations (dAPCC) in communities where local advocates and people with disabilities will collaborate on projects aimed at addressing the gaps and barriers to services identified by the needs assessment. The dAP will provide technical assistance and support as needed to the dAPCCs. Prior to embarking on this project, the dAP partners evaluated our capacity for conducting a needs assessment and for supporting dAPCCs. The partners determined that we had the time and resources to conduct needs assessments in four communities and ultimately to support three community collaborations. Four communities were selected to participate in the project based on demographics and the presence of domestic violence, sexual assault and disability advocacy resources in the community. The partners also developed criteria for determining which of the four communities would eventually be selected as dAPCCs (see appendix B). The partners engaged in significant planning prior to beginning their needs assessment activities. Working with the Vera Institute of Justice, the technical assistance provider for the project, the dAP developed a comprehensive plan that outlined the processes and activities that would be undertaken in the needs assessment. For a detailed summary of that plan, please see Section 3 of this report. The needs assessment plan was carried out in October and November of 2007. Nineteen focus groups or interviews were conducted by dAP partners with a variety 3 Needs Assessment Report -dAP of points of view represented. The staffs of domestic violence and sexual assault programs in all four communities participated, disability advocates from all four areas also took part in focus groups and interviews. People with disabilities were scheduled to have their own focus groups in each community as well. Following the focus groups and interviews, the dAP partners compiled and synthesized their findings into this report. Strategic Planning Once our needs assessment findings have been accepted by the Office on Violence Against Women (OVW), we will engage in a strategic planning process. One of our first steps will be to select which three of the four communities will act as dAPCCs in years two and three of the grant. Following that determination, we will identify activities that will address the needs of the three community collaborations, as identified in the needs assessment. The strategic planning process will include discussions among the core partners of our collaborative, as well as input from invited guests who have particular expertise to offer. Among the experts will be domestic violence and sexual assault advocates, disability advocates, people with disabilities, and survivors. From these discussions, and through the ongoing support of our technical assistance provider, the Vera Institute of Justice, we will develop a strategic plan that will address the gaps and barriers identified by our needs assessment, utilize the strengths and assets already present in the three selected communities, create opportunities for collaborative advocacy among advocates and organizations, and adopt strategies for the sustainability of the project beyond the life of the grant. 4 Needs Assessment Report -dAP _____________________________________ Section2OverviewoftheCommunitiesInvolved The dAP conducted needs assessment activities in four communities; Tacoma, Spokane, Grays Harbor, and Pullman. Three of the four will be selected to continue with the project as a dAPCC. Each of the four communities has unique strengths and challenges, and these are discussed below. Tacoma Area Tacoma is a large city located 30 miles south of Seattle on the I-5 corridor. It has an active, healthy disability advocacy community that has expressed strong interest in participating in this project. There is both a Center for Independent Living (CIL) and a large community resource center (Tacoma Area Center for Individuals with Disabilities or TACID) that serves the disability community and promotes self- determination. The two organizations work well together and have expressed strong interest in our project and in improving existing relationships with local domestic violence and sexual assault programs. In addition, the domestic violence and sexual assault advocacy available in Tacoma is varied and diverse. The Tacoma YWCA, the Korean Women’s Association, and the Sexual Assault Center of Pierce County all participated in our needs assessment activities and want to continue to make connections that will improve their advocacy for people with disabilities. Another resource in the community is an inter-agency group, called Untold Stories, that meets at TACID. They organize workshops on domestic violence and disabilities. Representatives come from a wide variety of domestic violence and sexual assault programs, disability advocates, social service agencies, and survivors. The group works together to identify, plan, organize and implement domestic violence trainings for the public and disability trainings for domestic violence and sexual assault agency staff. Spokane Area Spokane is a large city on the eastern edge of Washington. Although it has a large metropolitan area, the city falls off into rural communities rather quickly, unlike the metropolitan sprawl of the I-5 corridor in western Washington. Both the Spokane YWCA (domestic violence program) and the Safety Response Center (sexual assault program) have worked hard to understand accessibility and have taken steps in their communities to make connections in the disability community. The Safety Response Center has close ties with a relatively new organization called the Partnership, a multi-discipline task force to address sexual assault among people with developmental disabilities. In the disability community, there is strong support for connecting the disability and domestic violence and sexual assault advocacy communities. Spokane’s CIL, the 5 Needs Assessment Report -dAP Coalition of Responsible Disabled (CORD) has devoted much time and energy to this work, and the staff and board of the Partnership have also expressed strong interest in having the dAP come to Spokane. Grays Harbor Area Grays Harbor County, on the central Washington coast, contains two small cities and extensive rural areas. Grays Harbor has been a dAP pilot site in the past, headed by the DV Center of Grays Harbor. It has been difficult for the pilot site to recruit community-based disability advocates and self-advocates to be a part of pilot site activities. Grays Harbor is served remotely by the Center for Independent Living in Tacoma, approximately 80 miles away. Disability advocacy in the Grays Harbor area is fragmented and lacks funding. They have a strong advocacy community for people with developmental disabilities, with a small, but active People First chapter and a local Arc with a strong parent coalition. The local National Advocates for Mental Illness (NAMI) chapter and Clubhouse have recently re-organized and have not expressed strong interest in participating in the project. Most other disability resources in the community are service-based, rather than having an advocacy focus. The DV Center of Grays Harbor and Beyond Survival (the local sexual assault program) both have expressed interest in the work of the project and have demonstrated a commitment to increasing accessibility for survivors with disabilities. The two programs have experienced a high rate of turnover recently among their advocates, due in part to the economic pressures facing the Aberdeen- Hoquiam area. Both programs are maintaining their quality of work as they address these challenges. Pullman/Whitman County Area Pullman, located in Whitman County in southeast Washington is the most rural of our four communities. Alternatives to Violence of the Palouse (ATVP) is the local domestic violence and sexual assault program and has been involved in the disAbility Advocacy Project as a pilot site through earlier rounds of OVW funding. ATVP has made a strong, organization-wide commitment to making their services more accessible and has integrated their consciousness of disability issues throughout their program. There is a CIL in Spokane, approximately one and one- half hours by car, that makes regular (though not frequent) trips to Pullman and Whitman County. The CIL, the Coalition of Responsible Disabled or CORD, has expressed strong interest in the disAbility Advocacy Project and has already made meaningful connections with domestic violence and sexual assault programs both in Spokane and in many of the rural areas of eastern Washington. Pullman is the home of Washington State University, and the disabilities studies community at WSU has also been involved at the Pullman pilot site. 6 Needs Assessment Report -dAP ___________________________________________ Section3OverviewoftheNeedsAssessmentPlan Goals for the needs assessment Through our needs assessment activities, we hoped to learn from people with disabilities about their experiences of domestic and sexual violence and the barriers they face when seeking services. Perhaps even more importantly, we wanted to learn from people with disabilities why they may choose not to access domestic violence and sexual assault services. Additionally, we wanted to ascertain how people with disabilities learn about resources in their communities, thereby identifying opportunities for organizational change in outreach strategies utilized by advocacy organizations. We also wanted to learn from domestic and sexual violence advocacy programs and disability advocacy agencies about their organizational accessibility (physical, programmatic, and attitudinal) and how they remove barriers to access. We wanted to identify opportunities for organizational change in service delivery and examine outreach strategies utilized by community-based advocacy organizations. Finally, we wanted to identify strategies that would support collaborative advocacy and respect the choices made by survivors with disabilities. One way we hoped to accomplish this goal was to identify ways that community based organizations are already collaborating. Boiling these objectives down, we identified four statements that defined the goals of our needs assessment. They are: 1. Identify gaps and barriers to services experienced by survivors with disabilities when they seek domestic violence and sexual assault services from community-based domestic violence, sexual assault or disability advocates. 2. Identify the current strengths and assets of community-based domestic violence, sexual assault and disability advocacy organizations currently providing domestic violence and sexual assault services to survivors with disabilities. 3. Identify gaps and barriers to effective outreach by community-based advocacy organizations that discourage survivors with disabilities from seeking domestic violence and sexual assault services. 4. Identify the elements that contribute to effective collaborative advocacy between community-based domestic violence and sexual assault advocacy programs and community-based disability advocacy organizations. Methodology To ensure that our community needs assessments were comprehensive, we utilized a variety of available data in addition to new data. We used both quantitative and qualitative data analysis, ranging from descriptive statistics from previous 7 Needs Assessment Report -dAP community surveys to thematic coding of new focus group and interview data. Due to the exploratory nature of our needs assessment goals, the majority of the new data was collected through focus groups and interviews. Target Audiences for Focus Groups and Interviews Our needs assessment focused on domestic violence and sexual assault services for people with disabilities. Those services might be provided by a domestic violence program, a sexual assault program, or a disability advocacy organization. There are four distinct groups of individuals who have first-hand experience regarding the provision of domestic violence and sexual assault services to individuals with disabilities: a) survivors with disabilities, b) community-based disability advocates, c) community-based domestic violence advocates, and d) community-based sexual assault advocates. Consequently, we interviewed or conducted focus groups with individuals belonging to each of these four target groups. Methodological Framework We are employing a modified version of the “Getting to Outcomes” (GTO)1 methodology of doing a needs and resources assessment. GTO is a comprehensive program planning and evaluation process that was originally designed to improve substance abuse prevention program planning, and is now being expanded to other social and health areas, such as mental health, intimate partner abuse and sexual violence. Our evaluator is experienced in using GTO and worked with dAP staff to collect and analyze appropriate data to arrive at a thorough understanding of the context in the selected communities for addressing the needs of survivors with disabilities. Needs Assessment Activities Conducted in Four Communities To ensure geographic and demographic diversity, we selected communities from a rural and a small urban area, and two urban communities from opposite sides of the state. Our rural community is centered on the small town of Pullman, in the far eastern part of the state. The small urban setting is in an economically depressed area of the state on the Pacific coast, called Grays Harbor. This community includes the small cities of Aberdeen and Hoquiam. One of our larger, urban communities, Tacoma, is located on the I-5 corridor in western Washington. The other, Spokane, is on the eastern edge of the state. Breakdown of Focus Groups and Interviews In all, we conducted 19 focus groups and interviews. Below is a breakdown of needs assessment activities by target group and community, including the number of participants. We conducted interviews and focus groups in three populations that were not located within our selected communities because we felt that without these important perspectives, large segments of individuals might not be represented. 1 More information about GTO can be found at http://www.rand.org/pubs/technical_reports/TR101/ 8 Needs Assessment Report -dAP Community Domestic Violence (DV) Disability Advocates People with Disabilities (total # of and Sexual Assault (SA) (# of participants) (# of participants) participants) Advocates (# of participants) Tacoma • 40 DV/SA advocates • 6 Disability advocates • 27 people with disabilities or survivors • Pierce County YWCA (DV) (20) • Korean Women’s Association (DV) (6) • Sexual Assault Center of Pierce County (SA) (14) • Center for Independence (CFI) (6) Note: CFI covers both Tacoma and Grays Harbor • Tacoma Area Center for Individuals with Disabilities (14) • Pierce County YWCA shelter residents (13) Grays Harbor • 9 DV/SA advocates • 6 Disability advocates • 0 people with disabilities or survivors • DV Center of Grays Harbor (DV) (5) • Beyond Survival (SA) (4) • Center for Independence (CFI) (6) Note: CFI covers both Tacoma and Grays Harbor A focus group was scheduled, but not held due to capacity issues faces by the DV Center of Grays Harbor Spokane • 18 DV/SA advocates • 5 Disability advocates • 5 people with disabilities or survivors • Spokane YWCA (DV) (8) • Safety Response Center (SA) (10) • Coalition of Responsible Disabled (3) • The Partnership (2) • Coalition of Responsible Disabled (invited guests) (5) Pullman – Whitman County • 12 DV/SA advocates • 4 Disability advocates • 6 people with disabilities or survivors • Alternatives to Violence of the Palouse (DV/SA) (12) • Local disability advocates (4) • Alternatives to Violence of the Palouse (invited guests) (6) Other Perspectives • 5 DV/SA advocates • 4 Disability advocates • 0 people with disabilities or survivors • Northwest Network (DV) – advocates for gay, lesbian, bi-sexual, transgendered community (5) • Advocate who works in the Deaf and deaf- blind communities (1) • Advocates for survivors of traumatic brain injuries (3) 9 Needs Assessment Report -dAP Focus Group Processes and Protocols Each focus group was conducted using a “Confidentiality, Safety & Disclosure” plan that was developed in consultation with the Vera Institute of Justice and approved by OVW. Accessibility was ensured in a variety of ways. We had local organizations collect any requests for reasonable accommodations, we researched our meeting sites to ensure that they were accessible, and we asked all participants at the beginning of each focus group or interview if there were any access issues that could be addressed that would make their participation more effective. At the beginning of each focus group, we administered a brief survey, which we called an orientation exercise. These surveys were tailored to the participants of the focus group and designed to help participants focus on issues of service delivery and outreach. Additionally, the exercise provided important quantitative data for our needs assessment. Relevant data from those surveys has been included in Section 4 of this report. During the focus groups and interviews we used a variety of techniques to ensure that all who wished to participate were included. In many cases, we went around the room asking each person if they had any comments – assuring the group that it was alright to “pass.” We often asked questions in several different ways, and gently steered conversation back to the subject at hand when it strayed. We found an effective technique was to refer participants back to a comment made by another participant, rather than continually re-stating the question. During each of the focus groups, the discussion was documented by a note taker on a computer. When possible, notes were taken verbatim to capture the substance and tone of what each participant said. Many quotes from the focus groups are included in our findings report. Compiling the Data from the Focus Groups and Interviews As each of the focus groups were completed, the notes were distributed electronically to each of the dAP partners for review. Each dAP partner independently coded themes for each type of focus group (disability advocates, domestic violence and sexual assault advocates, people with disabilities). At the November partner meeting, each partner brought their identified themes to the table and participated in a group coding process facilitated by the project’s evaluator. Partners shared the themes they had identified for each focus group question, and each unique theme was written on a large card and placed on a “sticky wall” so that the entire group could view the themes. After the partner meeting, all themes were compiled into comprehensive tables. These tables became particularly valuable to us as we compared the perspectives of the four groups and synthesized their understanding of gaps and barriers to services for survivors with disabilities. Those tables are included in Appendix C of this document. The reader is encouraged to refer to them as the findings discussion evolves in the next section. 10 Needs Assessment Report -dAP At the December partner meeting, the themes from the tables were organized into broad categories: • Gaps and barriers to services for survivors with disabilities; • Gaps and barriers to effective outreach to survivors with disabilities by advocacy organizations; • Strengths and assets of the advocacy organizations and opportunities for collaborative advocacy. 11 Needs Assessment Report -dAP ___________________________________________ Section4NeedsAssessmentFindings The findings listed in this section are organized into headings and sub-headings to assist the reader. No attempt at prioritizing the findings has been made, and the order in which they are listed does not necessarily reflect the importance the dAP attaches to any given finding. Prioritizing these themes will be done during our strategic planning process. In various places in this section of our report we have used personal pronouns to identify survivors, advocates, or abusers. These individuals could be of any gender. For expediency, however, we have chosen to use the pronouns “she” or “her” for advocates or survivors because the majority of those we spoke with were female. When referring to abusers, we used the pronouns “he” or “him.” National studies indicate that the majority of abusers are male, which also aligns with what we heard in the focus groups. Gaps and Barriers to Services FINDING -Access is more than ramps and ADA bathrooms. Real access happens after survivors get in the front door. A major theme related to the gaps and barriers that survivors with disabilities face when they seek community services, is that real access is about what happens after they get in the front door. Although significant barriers exist in physically getting to a community services organization, this study finds that substantial barriers to services exist when a survivor begins working with advocates. For an organization to be fully accessible to a survivor with a disability, the building and office space must be physically accessible, processes and protocols at the organization must be navigable, and the staff must be willing to examine and change attitudes and pre-conceived notions that perpetuate bias against people with disabilities. Additionally, survivors must believe that advocates are comfortable talking about issues of abuse and have resources and strategies to offer. What we learned from domestic violence and sexual assault advocates In many cases, domestic violence and sexual assault organizations fail to recognize that survivors with disabilities have unique service needs. Without this understanding, intake processes are confusing or inappropriate, reasonable accommodations are not offered, and services offered are not individualized to the survivor’s needs. As a consequence, the survivor feels unwelcome and may not get what they need. 12 Needs Assessment Report -dAP Recognition that survivors with disabilities have unique needs is a first step for domestic violence and sexual assault programs. This recognition will allow the organization to change their practices in order to become ready to provide effective, thoughtful services to survivors of domestic and sexual violence who have disabilities. For example, many domestic violence and sexual assault advocates said they felt unsure of how to respectfully approach the topic of disability with survivors. An advocate who is uncomfortable sends the signal that they don’t know how to work with people who have disabilities, and thus trust is not established. “I did an intake with a young girl. She couldn’t read our form, she pretended to read it – I was embarrassed.” -sexual assault advocate What we learned from disability advocates Disability advocates are usually comfortable asking about and skilled in addressing disability issues. We found, however, that most have little experience or training about discussing abuse issues with a survivor. During the pre-focus group surveys, disability advocates were asked how often they received training about ways to serve people with disabilities who experienced domestic or sexual violence. One third of the advocates replied, “once.” The remainder said, “less than once a year.” Discussions at the focus groups provided further information. Disability advocates shared that they were often unsure how to respond when abuse was disclosed to them. This creates a problem for survivors. If the disability advocate is not comfortable and skilled when talking about the abusive situation, the survivor is unlikely to continue the discussion. Survivors may also be dissuaded from seeking appropriate referrals or future support. It is important to recognize that sharing experiences of personal abuse is frightening and potentially dangerous for a survivor. If the person to whom the survivor discloses reacts poorly, it can further a survivor’s isolation and confirm fears she will not be believed or will be blamed for the abuse. This can jeopardize the survivor’s safety or inhibit her desire to seek help from other advocates. However, participants in the disability advocate focus groups reported that their organizations do not screen for abuse, nor have core job training about how to support victims who choose to disclose abuse. What we learned from people with disabilities People with disabilities note that it is a significant barrier when an advocate or service provider cannot deal forthrightly with disability issues. Provider hesitation often causes people with disabilities to be reluctant to disclose their disability to service providers because they have learned that when their disability becomes known, they are treated differently than others. If a survivor does not disclose her 13 Needs Assessment Report -dAP disability, the advocate is often unable to identify the individual’s service needs and offered services are therefore inappropriate or insufficient. This can be especially problematic for survivors with invisible disabilities, such as mental illness, traumatic brain injuries, learning disabilities and/or many medical conditions whose disabilities are not apparent to advocates. People with invisible disabilities often decline to disclose to service providers unless they believe they will not be discriminated against, and any advocacy plan developed without full knowledge of the survivor’s service needs is therefore incomplete. “You go into their office and you want to say something, but . . . they don’t know how to bring a subject up because it’s a touchy subject. It’s like a big white elephant in the middle of the room.” -person with a disability Provider discomfort plays a role in the relationship between survivors with disabilities and disability advocates, too. Survivors with disabilities spoke about feelings of shame, guilt and low self-esteem that were created or exacerbated by their abusers. When disability advocates are uncomfortable talking about a person’s experiences of abuse, it makes a topic that is already very hard to talk about even harder. Summary With some notable exceptions, most domestic violence and sexual assault programs have not examined their practices, policies and protocols or engaged in meaningful staff discussions about programmatic or attitudinal accessibility at their programs. Disability advocacy organizations have not developed methods of screening for abuse and supporting survivors who disclose abuse. FINDING – There is incomplete knowledge among the three types of advocates about appropriate service provision to survivors with disabilities. Survivors with disabilities have incomplete knowledge of the array of services available to them. When a survivor of domestic violence or sexual assault has a disability, it is difficult to find all the services they may need. If the survivor turns to a domestic violence or sexual assault advocate, the advocate may not have the experience and knowledge to ascertain how the survivor’s disability might impact an advocacy plan created to address the abuse. If, on the other hand, she approaches a disability 14 Needs Assessment Report -dAP advocate, these advocates may have incomplete knowledge of advocacy practices that will address the abuse. People with disabilities often don’t know the full range of service options that are available to them, or distrust those options. DOMESTIC VIOLENCE AND SEXUAL ASSAULT ADVOCATES Lack of knowledge of the impact of disability The vast majority of domestic violence and sexual assault advocates expressed a belief that they serve everybody and are welcoming and non-judgmental regarding a survivor’s disability. At the same time, they report that they are not accustomed to regularly serving people with disabilities, which can make service provision less fluid and heighten advocate discomfort. Survivors with disabilities reported that a service provider who is uncomfortable discussing issues related to disability sends the message that people with disabilities are not welcome or will not receive appropriate services; the dichotomy is apparent. Domestic violence and sexual assault advocates understand that people who talk about their abuse are frequently not believed or deemed credible. But many of these same advocates lack understanding of how the experience of living with a disability – i.e., confronting daily misunderstandings or assumptions and bias about disability – influences a person’s daily choices and decisions. Cultural misperceptions and the stigma associated with disability are influential forces affecting the survivor on many levels. It may affect internalization and recognition of abuse, whether or not to disclose, who to disclose to, and how to seek support. Abusers often exploit a survivor’s fears by utilizing societal bias to coerce, manipulate and isolate the targeted person. The compounding impact of living with these realities leaves survivors with disabilities an array of inadequate options. “My caregiver sometimes refused to bring my groceries. He’d say, ‘who is going to take care of you? I’m the only one who wants to do this nasty job.’” -person with a disability If the survivor believes a domestic violence or sexual assault advocate engages in any behavior or practice that reflects a misunderstanding or assumption about what people with disabilities can and cannot do or need, the person seeking services is faced with an all too familiar daily hurdle – from a resource that promotes itself as accessible and welcoming. For example, many domestic violence and sexual assault advocates host support groups for survivors. Advocates reported that survivors with disabilities often felt more isolated when attending support groups comprised of women who were unfamiliar with the experience of living with a disability. Despite the good intentions of the advocates, these survivors were provided with a service that did not meet their needs. Participants in the focus groups for people with disabilities related several stories of similar circumstances, 15 Needs Assessment Report -dAP leading them to the conclusion that the service provider could not accommodate their disability. Confusing social service system for people with disabilities Domestic violence and sexual assault advocates were baffled by the complicated, and often contradictory, workings of the disability social service system. Many domestic violence and sexual assault advocates felt stymied by barriers to eligibility for such programs as Supplemental Security Income (SSI), Social Security Disability Income (SSDI), Medicaid, and GAU (a Washington state program for individuals who are deemed “unemployable” due to disability). “I don’t know what services are out there. I wonder what is out there that I don’t know about.” -domestic violence advocate Domestic violence and sexual assault advocates seemed to underestimate the need people with disabilities have for a network of services that provide needed support – and the fragility of that network. When one needed support disappears, the entire support network can collapse. Moreover, domestic violence and sexual assault advocates had limited or no contacts within the disability advocacy community to help them learn about how domestic violence or sexual assault affects people with disabilities or how to navigate the service system. DISABILITY ADVOCATES Lack of knowledge of the dynamics of abuse, advocacy strategies For survivors with disabilities, seeking services from disability advocates may address barriers relating to access or bias. Indeed, disability advocacy organizations were clearly more successful in developing support groups and other resources that alleviated some of the sense of isolation that most people with disabilities, and particularly survivors, experience. However, disability advocates are not familiar with the principles of safety planning or other advocacy practices that support survivors’ decisions and hold abusers accountable. Lack of familiarity with domestic or sexual violence advocacy Many disability advocates have a limited understanding of what domestic violence and sexual assault advocates do, or how those services might be added to a person’s support network. They have an incomplete knowledge of how abusers can manipulate systems and exploit societal bias against people with disabilities. Disability advocates receive little or no training about options for survivors of domestic violence and sexual assault, including legal remedies, housing options, economic benefits (i.e. civil protective orders, family violence option under the Temporary Assistance to Needy Families program, or HUD housing placement). 16 Needs Assessment Report -dAP SURVIVORS WITH DISABILITIES Unaware of full array of service options Survivors with disabilities who use domestic violence and sexual assault services appreciate that support, but often are not aware of any available assistance to access the disability service system. Conversely, survivors with disabilities who use disability advocacy organizations find many needed supports, but do not always receive necessary advocacy to address abuse issues. People with disabilities have incomplete knowledge of the services that are available to them when they experience abuse. Survivors who were familiar with disability advocacy services discussed their lives through a lens of their disability and expressed frustration about the lack or inadequacy of advocacy that related to the abuse they experienced. If, on the other hand, survivors were familiar with domestic violence and sexual assault services, they talked of their experiences of abuse and how they were dealing with those issues, but expressed frustration that issues relating to their disabilities were not adequately addressed. SUMMARY Domestic violence and sexual assault advocates have not yet figured out what practices they engage in that unintentionally mirror societal bias against people with disabilities. They have not yet found ways to talk openly with survivors about where they need support. Domestic violence and sexual assault advocates don’t have strategies to help them figure out what they don’t know about providing accommodation and support to people with disabilities who are experiencing abuse. Disability advocates have not found ways to talk about abuse with people who come to them for services or familiarize themselves with basic information about the dynamics of domestic violence and sexual assault. Some disability advocates were eager to begin work on this issue and suggested that internal processes should be established wherein survivors with disabilities could provide regular input to advocates on how services could be more effective for people who experience abuse. FINDING – Washington’s Mandatory Reporting law for ‘vulnerable adults’ is poorly understood. The autonomy and safety of all survivors with disabilities is threatened by the limited understanding of advocates. This could be a subsection under “Incomplete Knowledge,” but the gaps in knowledge among all three groups – domestic violence, sexual assault and disability advocates -warrants its own heading. Washington State law defines a class of individuals as “vulnerable adults,” and requires certain workers, volunteers or other staff to report to the state and/or law enforcement if they have reason to believe a vulnerable adult is being abused. Some Washington residents who have disabilities are considered vulnerable adults as defined under state law, but many are not. 17 Needs Assessment Report -dAP Differing views of the value of mandatory reporting Disability advocates tend to view mandatory reporting requirements as a small beacon of hope in a dark morass of abuse that takes place in institutional settings. Although the independent living movement has made strides in ending the forced segregation of people with disabilities, many people with disabilities end up living in congregate residential facilities such as, “schools” for people with developmental disabilities, nursing homes, psychiatric hospitals, boarding homes and adult family homes. The nature of these facilities is that staff have control of what is documented regarding a resident and in many cases over communications a resident has with others. When a staff member or a volunteer becomes abusive, the victim has virtually no avenue to seek help. Mandatory reporting laws require any staff member or volunteer to report to authorities outside of the facility when they have reason to believe that abuse is occurring. Disability advocates value mandatory reporting requirements highly, because it is often the only way abuse can be revealed. Domestic violence and sexual assault advocates tend to view mandatory reporting for adults as a grotesque obligation that runs counter to their values and often endangers the survivor. A core value of domestic and sexual violence advocates is to honor the choices and autonomy of survivors. Mandatory reporting undermines this principle. There are practical as well as philosophical consequences of mandatory reporting that concern advocates. Among these consequences is that an abuser often retaliates against a survivor when he finds out that a report has been made to authorities. This can be true whether the survivor reports herself, or if authorities are alerted by others. Mandatory reporting laws sometimes force advocates to expose the survivor to retaliation by her abuser. The point of view of both groups of advocates is accurate, but incomplete. Mandatory reporting requirements can be either beneficial or harmful to survivors of abuse, depending on the circumstances. However, because of a lack of understanding about the legal requirements of reporting, difficulties in rooting out institutional abuse, and the dynamics of domestic and sexual violence, these differing perspectives make it difficult for disability advocates and domestic and sexual violence advocates to have productive discussions on the topic. Neither group has a nuanced understanding of the subject, and their clashing points of view overlay other aspects of this subject, as discussed below. Conflation of “disability” and “vulnerable adult” Although the focus group questions did not specifically mention the subject of mandatory reporting, the topic was raised in virtually every focus group. It became clear that there was massive misunderstanding among advocates regarding who in Washington state is considered a legally defined vulnerable adult. In some cases, advocates seemed to use the terms “person with a disability” and “vulnerable adult” interchangeably. When there is a danger of abuser retaliation, this confusion on the part of advocates represents a potentially dangerous situation for the majority of people with disabilities in Washington who do not, in fact, fall under the state’s definition of 18 Needs Assessment Report -dAP vulnerable adult. If a mandatory reporter cannot make the distinction between “disability” and “vulnerable adult,” all survivors with disabilities are at risk. Advocates do not have the training necessary to address this problem. A first step must be to determine if the survivor is – or is not – a legally defined vulnerable adult. If she is a vulnerable adult, the second step involves building an advocacy plan that takes into account both safety and autonomy for the survivor, given the requirements of mandatory reporting. Limited understanding of mandatory reporting can threaten safety and autonomy Disability advocates did not express a complete understanding of the impact and unintended consequences regarding loss of autonomy and safety that could result from making a mandatory report. The potential escalation of violence by an abuser when he discovers that the authorities have been called represents a threat to the safety of the survivor. The situation can be compounded if the survivor is unaware the report has been made, and she will be unprepared for her abuser’s retaliation. Sexual assault advocates have an incomplete understanding of the value of mandatory reporting in institutional settings. Although many sexual assault advocates reported that they had worked with survivors in congregate residential facilities, they expressed frustration at the difficulty they sometimes faced working with staff or facility rules. A better understanding of the requirements for facility staff to file mandatory reports could provide advocates with some leverage when advocating for a resident. Is there a “safe” way to make a mandatory report? Domestic violence and sexual assault advocates wanted clarification about the “safest” way to make a mandatory report. A number of issues surfaced in the focus groups: Who is a legally defined vulnerable adult? How do you determine if the survivor you are working with is defined as such? How and when do you tell the survivor that you are a mandatory reporter, and how do you explain the possible repercussions for the survivor? How can you find resources for a survivor if, after learning the advocate is a mandatory reporter, she chooses not to disclose the abuse she is experiencing? “[The problem is] not only who is a mandatory reporter, but who is a vulnerable adult? What are the dangers that mandatory reporting brings? A lot of advocates haven’t thought of that.” -domestic violence advocate 19 Needs Assessment Report -dAP Summary Mandatory reporting is a complex subject. Lack of training for advocates poses dangers to people with disabilities whether or not they are a legally defined vulnerable adult. There is also confusion about who is considered a mandatory reporter and what their responsibilities are under the law. There is a lack of training for advocates regarding the best advocacy practices when a legally defined vulnerable adult discloses abuse to a mandatory reporter. Additionally, there is a lack of recognition by some advocates that mandatory reporting can also be a constructive tool for advocates, especially in institutional settings. FINDING – Reasonable accommodations that could make services accessible are often not offered by advocates or requested by survivors with disabilities. The result is that domestic violence or sexual assault services are often inadequate or inappropriate. The importance of advocates’ building trust with a survivor who has a disability emerged as a paramount need among all focus group participants. People with disabilities learn to trust a service provider when they believe that their disability will not prevent them from accessing services. Accommodations are the most common way that providers can demonstrate that disability is not a barrier to their services. There are two ways a person can get a needed accommodation -they can request it, or the service provider can ask – directly or indirectly -when the need for accommodations becomes apparent. Most people with disabilities have had bad experiences asking for accommodations because they are often made to feel that they are placing a burden on the provider, even for simple, no-cost accommodations. For example, a person who has hearing loss may ask a service provider to speak loudly and clearly. After the first few minutes, the provider forgets, and begins speaking more softly. When the person with hearing loss is forced to make a second or third request, she begins to feel that the provider does not perceive her request for accommodation as important. Alternatively, if in the above example the service provider perceives that the client has hearing loss, she could ask if her voice is loud enough. If, upon receiving a negative answer she adapts her behavior by consistently speaking loudly and clearly and periodically checks to be sure she is understood, the person with hearing loss is likely to feel that what she says is valued by the provider, and a relationship based on trust has been initiated. Accommodation provision and accommodation awareness Domestic violence and sexual assault advocates were proud of some of the physical and interpersonal accommodations they had achieved, such as wheelchair ramps and TTY machines. However, when talking about how they asked survivors about accommodations needs, it becomes clear that there is confusion among domestic 20 Needs Assessment Report -dAP violence and sexual assault advocates about what it means to provide accessible services. When discussing the subject of accommodations with domestic violence and sexual assault advocates, it becomes necessary to note the distinction between accommodation provision and accommodation awareness. Most domestic violence and sexual assault advocates state that they provide accommodations when asked. However, in the pre-focus group surveys, 63% of domestic and sexual violence advocates reported that they ask about accommodations in the initial screening call, when a survivor may be particularly concerned about being declared ineligible for services. Another 12.3% said that they do not ask survivors about accommodation needs. During the focus groups, many advocates said that they struggle to find ways to ask about accommodations respectfully, which may increase the likelihood that a survivor will not ask for what could be perceived as “special treatment.” It is not clear to domestic violence and sexual assault advocates if their organization provides reasonable accommodations. When responding to the survey, 26.3% of domestic and sexual violence advocates said they were “unsure” if their organization provided requested accommodations. Domestic violence and sexual assault advocates need a process to increase their awareness of the kinds of accommodations a survivor with a disability might need. For example, a few domestic violence and sexual assault advocates described policies and practices that helped them become aware of accommodations a survivor might need. When talking with a survivor, these advocates often described examples of accommodations they had provided to past program participants to emphasize that disability had no effect on eligibility for services. Also, these advocates described a process of regularly asking the survivor about accommodations, at the initial screening call, during intake, and after the survivor has been declared eligible for services. “We have moved beyond ADA compliance. We have taken a step forward as a team, not as individuals. ” -domestic violence advocate People with disabilities say that accommodations routinely are not provided Although the vast majority of domestic violence and sexual assault advocates report that they ask about the need for accommodations when talking with survivors, people with disabilities expressed deep frustration with many aspects of service delivery. They spoke of the many barriers they routinely experience, both from domestic and sexual violence advocates and from other service providers. All of the typical barriers, described in the list below, could be eliminated with low cost – or in many cases, no cost – accommodations. People with disabilities stated that: 21 Needs Assessment Report -dAP • Domestic violence and sexual assault advocates are uncomfortable talking about disability; • Domestic violence and sexual assault advocates underestimate the barrier created by the lack of accessible transportation; • Paperwork is often a barrier for individuals with cognitive or learning disabilities, people who have difficulty writing, people who are blind or have low vision, people who are Deaf (or others for whom English is not their first language); • Communication can be a major issue for Deaf people, individuals who do not speak clearly, or are non-verbal. Communication can also break down if a service provider talks to a person as if they were a child, simply because they have a disability; • Shelter policies and rules, such as chore requirements, resistance to service animals, requirements to take prescribed medications, personal questions about diagnoses and types of disability make people with disabilities feel the shelter is not welcoming to them; • Questions about accommodations are often perceived as methods to screen people out of services; • Materials are not accessible or welcoming to people with disabilities, such as brochures in small fonts, materials that do not portray people with disabilities, posters and outreach materials that use jargon, such as “intimate partner.” “I didn’t get abused by my partner, I got abused by my caregiver. That poster isn’t written for me.” -person with a disability Summary Domestic violence and sexual assault advocates are not well informed about providing accommodations to people with disabilities. Moreover, they sometimes lack the skills or training to become more aware of possible service needs and how to ask survivors about them. People with disabilities do not feel welcome and are not receiving the accommodations they need to access domestic violence and sexual assault services. FINDING – Survivors with disabilities believe in many cases that they are not eligible for domestic violence and sexual assault services. Multiple issues around “eligibility” for domestic violence and sexual assault services emerged from the focus groups. People with disabilities often believe they will not receive services if they seek them. In some cases, their belief is justified. 22 Needs Assessment Report -dAP Screening people out of services All participants noted that there was a perception among survivors that answers they provided to screening questions would determine whether or not they received services. Domestic violence and sexual assault advocates clearly observed that survivors carefully weighed their responses to questions about disability and accommodation needs in particular. Indeed, in some cases, domestic violence and sexual assault advocates acknowledged that they often felt the screening process needed to be changed so that people were screened in, rather than out. “A lot of people are desperate for help and they don’t want to say the wrong thing. How do you get them to be honest and not feel like you are going to kick them out? People are afraid.” -sexual assault advocate Eligibility when the abuser is a personal attendant Eligibility is also a primary concern for people with disabilities who are abused by their personal attendant (caregiver). Domestic violence advocates are accustomed to thinking of abusers as “intimate partners,” (i.e. boyfriend/girlfriend/spouse) and their definition of this term often does not extend to people who provide personal assistance services (PAS). The issue of abuse by PAS workers is at the front of the minds of people with disabilities and disability advocates. Many domestic violence advocates, while seemingly aware that abuse happens in some PAS relationships, have not thought through the implications around eligibility for services. The advocates at ATVP in Pullman are notable exceptions, and some of their work on this issue may be able to be exported to other domestic violence programs. Survivors with disabilities who are men Eligibility for services is also a concern for men with disabilities who are victims of abuse. The perception of people with disabilities and disability advocates is overwhelmingly that domestic violence and sexual assault programs are for women who experience abuse. Many domestic violence and sexual assault advocates note that this perception has some basis in fact. One sexual assault advocate stated that her program’s screening practices likely screen out men with disabilities who have been sexually assaulted because of their gender. 23 Needs Assessment Report -dAP “Men don’t feel they are in a position to do anything about it. Like the [local domestic violence agency], they only serve women. Well, they will help, but they don’t make it readily apparent. You have to push it.” -disability advocate Summary The way that screening is conducted by many domestic violence and sexual assault organizations creates barriers for people with disabilities who are seeking services. Eligibility criteria often do not take into account the needs of people with disabilities. Many domestic violence programs do not address eligibility issues for survivors whose abuser is a PAS worker. Policies and practices at many sexual assault and domestic violence programs have the practical effect of excluding men with disabilities who are survivors. Policies and practices at many sexual assault programs were developed without a full understanding of the negative effect those practices have on survivors of sexual assault who have disabilities. One domestic violence organization has developed and provides training on screening tools that do not rely on gender to determine who is an abuser and who is a victim in a relationship. The knowledge and experience of this organization can help us as we move into implementation of our strategic plan. FINDING – Abusers use tactics that are designed to exploit the disabilities of the survivor. Survivors with disabilities often stated that their options are limited because the resources they use to maintain autonomy and independence are often controlled and exploited by their abuser. When asked how an abuser “uses your disability against you,” survivors with disabilities rattle off a laundry list of tactics. Abusers maintain power over the person through control of: • Medical equipment; • Finances, often by being appointed as the victim’s legal payee; • Medications; • Disability services (including access to the case manager or social worker); • Access to the telephone or other communication. For example, if a survivor is Deaf or has speech that is difficult to understand, abusers often control communication with others because they are able to “translate” for the person; and/or • Access to friends and family members who provide necessary support. 24 Needs Assessment Report -dAP Tactics that exploit social bias Tactics utilized by abusers against survivors with disabilities usually exploit the social bias, misinformation and stigma surrounding people with disabilities. For example, if a survivor wants to leave, her abuser knows she has little choice because of the lack of affordable accessible housing and that, in fact, she may be faced with a nursing home or homelessness. Abusers often exploit the diminished credibility that people with disabilities experience every day. Survivors reported that they often heard comments such as, “Nobody will believe you, you’re crazy.” “If you leave me I’ll get the kids, no judge in his right mind would give you custody.” “I’ll tell them you get nutty when you don’t take your meds.” All focus group participants noted criminal justice system personnel do not treat people with disabilities as credible. What this means for domestic violence and sexual assault advocates Because many tactics used by abusers are specific to a survivor’s disability, domestic violence and sexual assault advocates must communicate with survivors about disability-related issues in order to effectively safety plan and support survivor autonomy. This becomes even more important when one considers that a person with a disability may need a network of coordinated services that a safety plan must comprehensively address. “People with disabilities don’t have credibility. They threaten your benefits, you have to give up control over your budget, your spending. . . You’re afraid they’re going to take your children.” -disability advocate Safety planning is not the only reason advocates need to communicate effectively with survivors with disabilities. Survivors may need assistance in prioritizing their options, figuring out how their abuser may react to actions they take, and how to safely share information with other supportive individuals. Sexual assault advocates are familiar with abusers who seek to “groom” potential victims. People with disabilities are sometimes targeted by such an abuser because of their perceived vulnerability. Summary Advocates who are providing services to survivors do not have a full understanding of how abusers use the survivor’s disability against them, either directly or by exploiting societal bias. Advocates do not fully understand the implications this has for providing services to survivors. 25 Needs Assessment Report -dAP FINDING -Survivors with disabilities don’t feel welcome at domestic violence and sexual assault programs. The primary barrier for people with disabilities when they seek domestic violence and sexual assault advocacy services is a belief that advocates will not have the time or knowledge to provide services or accommodations that best fit their situation. People with disabilities and disability advocates talked about their experiences working with other service providers and described their frustrations when service providers fail to take time to listen and support people in: • Understanding and filling out forms; • Discussing options that address legitimate fears about bias against people with disabilities; or • Explaining in clear language what services are available to a program participant. “I didn’t have a good experience at _______. It’s not a very welcoming building, it’s a maze in there and there are no signs. I finally got up to the receptionist and there was nothing there.” -person with a disability Challenges for domestic violence and sexual assault organizations When seeking services, survivors with disabilities want the services provided to be appropriate to their circumstances, taking into account how their disability might require accommodation. They want service providers to demonstrate they are willing to take the necessary time to establish trust with survivors. For domestic violence and sexual assault advocates in particular, survivors want them to demonstrate a willingness to increase their knowledge base about how disability issues affect survivor decision-making, autonomy and abuser accountability. It can be an organizational challenge for domestic violence and sexual assault programs to figure out ways to find more time when working with, for example, people with cognitive disabilities. It takes time to go over every form, check for understanding or figure out how to deal with memory issues. Many of these same challenges are present when working with survivors who are Deaf, have cerebral palsy, or are non-verbal. 26 Needs Assessment Report -dAP “One of the things I’ve learned is that even when you have a lot of resources available, it takes time to figure out what works. . . . Trust happens on both sides when you have face-to-face time.” -disability advocate Inappropriate or illegal practices In some cases, domestic violence and sexual assault advocates wanted to “help” survivors with disabilities by asking about their disability or diagnosis. These advocates voiced the opinion that knowing this information would prepare them for situations that might arise. People with disabilities, however, often found questions about their particular disability or diagnosis as invasive and an attempt to screen them out of services. Domestic violence and sexual assault advocates who proposed this approach seemed unaware of the Americans with Disabilities Act or Fair Housing Act proscriptions against inquiring about a person’s disability and are missing an opportunity to build trust. “We ask them during intake about medications. It’s good for us to know what meds they are on . . . so we can respond in the right way.” -domestic violence advocate Summary Peer-reviewed national studies show that survivors with disabilities disclose abuse less often than other survivors. In our focus groups, people with disabilities supported this finding by saying that they do not believe they will get the services they need when they disclose abuse to a service provider. Survivors with disabilities reported that they did not feel welcome at many domestic violence or sexual assault advocacy organizations. A second reason for lower disclosure rates may be that survivors with disabilities have had negative experiences with domestic violence or sexual assault programs. In our pre-focus group survey, we asked people with disabilities if they had contacted a domestic violence or sexual assault advocate about the abuse that happened to them (or someone they knew). Of the 52.8% who replied “yes,” only half said they got “what they wanted.” 27 Needs Assessment Report -dAP Gaps and Barriers to Effective Outreach to Survivors with Disabilities FINDING -Disability advocates don’t know what domestic violence and sexual assault advocates offer, domestic violence and sexual assault advocates are largely unaware that disability advocates exist. Outreach efforts used by advocacy organizations have often failed to communicate to people with disabilities, and in some cases to other advocates, what services they offer. Disability advocates expressed frustration about not knowing what to do or not feeling that they could do anything further for a person with disabilities who disclosed abuse. Some disability advocates wondered if a person with a disability would be eligible for domestic violence and sexual assault services, particularly if the abuser was a personal assistant. Survivors with disabilities echoed this confusion, and in talking with domestic violence and sexual assault advocates, it became clear the majority had not given the matter much thought, either. Disability advocates also expressed reservations whether the domestic violence and sexual assault program had the time or skills to provide appropriate accommodations and services. Lack of trust was a major issue. Many domestic violence and sexual assault advocates have had little or no contact with Centers for Independent Living or other disability organizations, although there are some notable exceptions. One domestic violence advocate, when asked about existing relationships with disability advocates, replied, “I didn’t know there were disability advocates. What do they do?” “I didn’t know there were disability advocates. What do they do?” -domestic violence advocate FINDING – Domestic violence and sexual assault programs rarely have outreach materials that are welcoming to survivors with disabilities. There were multiple issues regarding the outreach and program materials created by domestic violence and sexual assault programs. • Materials and brochures don’t show people with disabilities receiving services, raising the question if they were welcome. 28 Needs Assessment Report -dAP • Materials and brochures are usually not available in large print or other alternate formats. • Materials and brochures don’t contain clear language and/or try to say too much. • Materials and brochures don’t help people with disabilities understand that what they are experiencing is abuse. • Materials and brochures don’t explain what to expect when you contact a domestic violence and sexual assault program. • People in wheelchairs can’t reach brochure holders. • Materials and brochures use jargon and limiting language, such as “intimate partner violence.” One person with a disability said, “I didn’t get abused by my partner, I got abused by my caregiver. That poster isn’t written for me.” “The poster says, ‘if you are abused by your partner . . .’ What does that mean? It tells me if my caregiver is being [abusive] to me, it doesn’t count.” -person with a disability In the pre-focus group surveys, domestic violence and sexual assault advocates were asked if they had any outreach materials specifically for people with disabilities. 78.4% responded either “no” or “not sure.” Disability advocates usually do not have materials about abuse available for people with disabilities that seek information. When those materials are available, they are often brochures distributed by domestic or sexual violence advocacy programs that are seldom written with people with disabilities in mind. FINDING – All three groups of advocates do community outreach activities, but there has been little or no coordination between disability advocates and domestic and sexual violence advocates. Both groups of advocates maintain a community presence and have an intuitive knowledge of the value of such a presence. Both groups report that they have insufficient resources to expand their community presence where they would like it to be. Domestic violence and sexual assault advocates are largely unaware of where people with disabilities meet in their communities. For the most part, disability advocates have not partnered with domestic violence and sexual assault advocates. 29 Needs Assessment Report -dAP FINDING – Transportation is a major concern for survivors with disabilities. Outreach efforts currently being utilized by advocates do not communicate a willingness to solve transportation problems. Transportation is major barrier for people with disabilities, and one that advocates must take into account in their outreach efforts. People with disabilities express strong desire for one-stop shopping for services. Shelter advocates expressed concerns about confidentiality of their shelter if a resident uses paratransit services. Advocates need to think through this issue so people aren’t denied shelter because of their disability. “A lot of people use paratransit, but they don’t understand our need to keep our location confidential. The closest place to drop them off is Safeway. We don’t want different drivers coming here.” -domestic violence advocate Sexual assault advocates, on the whole, had more flexibility to meet with survivors in their homes or in other accessible locations. Domestic violence advocates need to do more problem-solving around accommodating those who face transportation issues. People with disabilities identify transportation as one of the most critical of the network of services that allows them to live independently. Survivors who do not have adequate, accessible transportation do not have the option of using many services. If an organization’s outreach materials do not indicate agency willingness to address transportation issues, the survivor will likely not consider using those services. FINDING -Domestic violence and sexual assault programs don’t do outreach where people with disabilities are. People with disabilities primarily find out about resources via word of mouth. In the pre-focus group survey, people with disabilities were asked how they learned about resources and events in their community. 94.4% said they learned about things happening in their communities by “talking to my friends and family,” which was the most frequently selected answer. The next most frequent was “radio, TV or newspaper,” with 86.1%. “Community events” and “social service agencies” were also high on the list of methods used to gather information. 30 Needs Assessment Report -dAP Participants suggested that general outreach efforts focus on public areas that people with disabilities access, such as food banks, bus stops, health clinics and grocery stores. Survivors with disabilities described how helpful it is when community agencies coordinate to provide services in one place at a specified time – particularly food and health services. 31 Needs Assessment Report -dAP Strengths and Assets of Advocacy Organizations and Opportunities for Collaborative Advocacy It is worth taking the time here to talk about the term, “collaborative advocacy.” Advocacy is a word that has a variety of meanings. It can mean one person assisting another in achieving that person’s specific goals, or it can mean an organization asserting the rights of an aggrieved community of people. In the domestic violence, sexual assault and disability advocacy worlds, people talk of individual advocacy, system advocacy and legal advocacy. So, on what type of advocacy, one may ask, will these advocates collaborate? The dAP uses the term “collaborative advocacy” to encompass all possible types of advocating. Our partners have all engaged in collaborative system advocacy, by cooperating with other agencies to achieve systemic goals. The concept of collaborative advocacy relating to an individual’s needs is less clear to us. Confidentiality issues alone present enormous challenges to advocates from different disciplines cooperating to provide domestic violence and sexual assault services to a survivor. This section is titled, in part, “opportunities for collaborative advocacy,” and represents a starting point where domestic violence programs, sexual assault programs, disability advocates, and survivors with disabilities can begin the difficult conversations that – we hope – will lead to meaningful collaborations that support the decisions of survivors with disabilities. FINDING – The three types of advocates and people with disabilities have many shared values that can provide a strong foundation for successful collaboration. Domestic violence and sexual assault advocates described their main strengths as being non-judgmental, welcoming and supporting survivor autonomy. Disability advocates talk about the importance of self-advocacy, promoting self-determination and individualizing their services. People with disabilities want their choices to be respected. The three groups have strong, shared values around these issues. These shared values can be a basis for collaboration. All three groups talked about the benefit of learning from and listening to people with disabilities. Building systems and processes that feature the input of survivors with disabilities represents a major opportunity for collaborative advocacy. 32 Needs Assessment Report -dAP FINDING – Advocates understand that collaboration with other organizations in their communities allows them to provide better advocacy. Domestic violence and sexual assault advocates understand that in order to support survivors and work for social change, they need to ally themselves with other community members and organizations. Most advocacy organizations spend some of their time trying to establish relationships with other organizations. Unfortunately, when domestic violence and sexual assault programs talk about collaborating in the community, they are not – for the most part -referring to disability organizations. Disability advocates seem to know about the domestic violence and sexual assault programs in their communities, but, with few exceptions, have not established working relationships with them. This chapter is about strengths, assets and opportunities for collaborative advocacy. It is interesting to note a positive development that has come about because of the dAP’s involvement in planning this Needs Assessment. We were able to introduce the domestic violence and disability organizations to each other in Spokane. Advocates and management from the two organizations have formed relationships that have changed each participant organization’s policy and practice. We look to this developing relationship as a way that advocacy organizations can collaborate to do this work. FINDING -Cross training is merely a first step to effective collaboration. To create a successful partnership, in-depth exploration of a variety of issues must take place. All three groups of advocates have engaged in a limited amount of cross training and understand its benefits. Perhaps more importantly, they also know its limitations and are eager to find more meaningful ways to collaborate. “That’s what it is coming down to – bringing domestic violence and disability workers together, because the biggest agencies aren’t getting things done.” -disability advocate Although disability advocates feel that they have many community connections and resources at their disposal, they receive limited training or coordination with domestic violence and sexual assault advocacy organizations. At the same time, 33 Needs Assessment Report -dAP domestic violence and sexual assault advocates feel that there is a lack of resources for survivors with disabilities. This exemplifies the need for improved communication between both kinds of advocates to determine how to work more closely together. Cross-training about each other’s work, practices and philosophical approach is merely the first step in relationship building. Domestic violence and sexual assault advocates can offer information about maintaining confidentiality, safety planning, healing from trauma, system and abuser accountability, and system change advocacy strategies. Disability advocates can offer strategies to support autonomy and independence in a culture where people may not expect a person with a disability to live independently or to work and contribute to society. FINDING – Many advocacy organizations have developed a “culture of learning” that makes change – and planning for change – easier. Many of the advocacy organizations that participated in our focus groups have developed innovative methods of sharing knowledge within their organizations. In each case where we observed strong internal communication, we found that the organization had developed a “culture of learning,” either a formal or informal system where learning from each other was valued by both staff and management. Each organization had its own methods of operationalizing this culture of learning as it relates to accessibility. Among the models we observed were: • Integrating practice across an agency by using a comprehensive manual that is continually updated; • Scheduling formal and informal times for staff to share what they have learned; • Developing “intake” systems where a large amount of time is invested on the front end to get a full picture of a survivor’s needs and resources, building in opportunities for multiple staff members to participate in the process; • Building accessibility discussions into all phases of organizational planning; • Building time into staff meetings to share practices and resources; • Encouraging informal resource sharing among staff; • Rotating staff members assigned to outreach outings. “Where I’ve had the most training and education was from my peers.” -sexual assault advocate 34 Needs Assessment Report -dAP FINDING -The “disability community” is not a single, identifiable entity. This creates confusion among some advocates, but represents an opportunity for creating change in local communities. One of things that domestic violence and sexual assault advocates find confusing about working within the “disability community,” is that it does not seem to be a homogenous community. Several domestic violence and sexual assault advocates expressed frustration when trying to make connections with the disability community because it seemed to be a series of smaller communities, identified by type of disability. This perception is largely true. The Deaf community has historically organized and developed a particular culture informed by language (American Sign Language). The Blind disability organizations were exceptionally powerful in governmental lobbying and organizing among themselves. The developmental disability advocacy world has often worked in an insular fashion. Organizing across disability is rare and not typical among “the disability community.” In the disAbility Advocacy Project, we are asking people with disabilities and their advocacy organizations to come together. That assumption alone is powerful and asks a lot. Disability Rights Washington is a statewide agency that works cross- disability, and the Centers for Independent Living are also cross-disability organizations. There are CILs operating in each of our four needs assessment communities. Their presence and willingness to participate represents opportunities for domestic violence and sexual assault advocates to have a comprehensive resource for understanding the many facets of the disability community. 35 Needs Assessment Report -dAP _____________________________________ AppendixAMissionandVisionofthedisAbilityAdvocacyProject Vision, mission and context for our work The vision of the disAbility Advocacy Project is that people with disabilities and Deaf individuals who experience domestic or sexual violence are aware of the range of services that are available to them and they have the same access to those services as others. We believe that all people should have equal opportunity to participate in a society where Abilities, rather than disabilities, are recognized. 36 Needs Assessment Report -dAP ___________________________________________ AppendixBCriteriafortheSelectionofPilotSites Criteria for Selection of Pilot Sites Our collaboration has determined that we will use the following criteria to determine which three communities will operate as pilot sites in years two and three of the grant. 1. Pilot sites should be selected to reflect the geographic and demographic diversity of Washington state. 2. It is important that a potential pilot site have existing community-based resources; a domestic violence program, a sexual assault program, and a Center for Independent Living (CIL) or similar disability advocacy agency. 3. It is important that the local advocates express a strong interest in the project and a willingness to do the work necessary to form a strong collaborative presence in the community. 4. The local advocacy organizations should also express a desire to work with the dAP to receive technical assistance and create and document model collaborative advocacy strategies between domestic violence and sexual assault and disability advocates. 5. The community would optimally include a specialized program or resource unique to the state that addresses issues of domestic and sexual violence. 6. The advocacy organizations in the community should express a strong interest in improving domestic violence and sexual assault services for individuals with disabilities; and 7. The advocacy organizations in the community should express a strong interest in improving outreach regarding domestic violence and sexual assault services for individuals with disabilities. 37 Needs Assessment Report -dAP _____________________________________ AppendixCTablesofFocusGroupThemes Focus Groups and Interviews with Domestic Violence/Sexual Assault Advocates Focus Group Question: What have you done at your program for survivors with disabilities that you are proud of? ServicesAccessible,flexibleandadaptedStaffBuildingacultureofrespectCollaboration Accessibility Fostering respect • Collaborate with other • Support groups • Staff is nonjudgmental – organizations that • Free transportation treat all people with specialize in mental • People can bring their own respect health and disability interpreter • Staff recognizes that issues • Allow service animals everyone has the same • Community partnerships • Improved physical rights • Leveraging resources – accessibility • Treat people like a human especially in small • Services are client-directed being communities – focus on what the client • The sexual assault wants and their programs reject the individualized needs notion that people with Adapted Services disabilities are asexual • Not relying on usual • Understand that they are method of services currently working with • Varied in outreach – wide people who don’t identify variety of methods – go their disability where people are Training and Development • Flexibility with crisis line • Foster a culture that is • Ask about disability on receptive to learning intake • Flexibility (NW network, • Willingness to figure out praxis) accessibility needs • Staff is trained to be • Trying to talk about what accessible works and what doesn’t • Education through • Disentangling mental conferences health, substance use and dv/sa trauma (also a barrier to serving people with disabilities) Focus group question: When you took the volunteer or new employee training, did you learn about specific disability-related domestic violence/sexual assault issues? 38 Needs Assessment Report -dAP Majority of training occurs during the 30-hour advocacy training and/or during an anti- oppression training. Generally, there is a lack of communication among staff and/or cross- training. TopicsCoveredinTrainingNeedMoreTraining Disability Awareness Cross-training within own agency • General disability awareness • Lack of integration about info throughout • Values questionnaire/assessment agency • Learning about working with individuals • Need cross training who have issues with mental health and • Staff need to educate each other and share sexual assault -who can benefit from info their services • Conflicting information among staff -not all • Learning about who they could serve (or staff are trained not) • Need internal staff training – across • People talked about specific disabilities services/jobs • Basic training More Detailed Training Accessibility • Need ongoing training • Learned to use TTY • Need training to figure out who is a • How to improve physical accommodations mandated reporter • Working with service animals • It is important to have practical experience • People are confused to ask about disability, Policies when to ask, how and also • How to provide written material accommodation • Self-identification of disability and figuring out accommodation Cross-training with other agencies • Need cross training across community orgs Focus group question: Do you have contacts in the disability community to help you learn about how domestic violence/sexual assault issues affect people with disabilities? LimitedAwareness/ContactwithDisabilityOrgsWhatWouldImproveCollaboration Didnotknowdisabilityorgsorselfadvocates LimitedexperiencewithDeafadv/orgs Participatedinexistingtaskforces Didnotdistinguishbetweensocialserviceanddisabilityadvocateorg Facetofacecontactwithotheradvocates/orgssoyouknowwhotocontact Needcontactlist/directorywithallprovidersandwhatservicestheyoffer– includingmorethanoneissue(mh/dv) Needtimetomakecontact Goouttocommunitytoidentifyneeds, offerservices Crosstraining–internal/external Includesurvivorinput Anti-oppressionvalueofbothkindsoforganizationshelpedcollaboration Confidentialityisabarriertocollaboration Providingaccessibility/lackofaccessibilityisbarriertocollaboration 39 Needs Assessment Report -dAP Entire staff of each agency needs to be involved in collaboration • Entire org develop relationships – not individual based, combats high turn over of staff, burnout • Need to develop a web of relationships across orgs • Collaboration without services – doesn’t help, no relief • Services within agency are compartmentalized – one person “doing it” (responsible for disability training, etc.) Focus group question: Often survivors who have a disability will not tell an advocate that they have one. Why do you think that is? Is there any question you ask during intake that might make a person with a disability hesitant/afraid to disclose they have a disability? PhysicalBarriersPolicyandPracticeBarriersBarrierstotheSurvivor Phoneisbarrier HospitalsettingisabarrierLackofTrust Ittakestimetobuildtrust Timetolisten–survivorshaveacomplexsituationthattakestimetoworkthrough–oftendon’tdisclosebecauseadvocatesdon’taskenoughquestionsIntakeorScreeningBarriers Lackofconfidentiality Fillingoutpaperwork Needtoknowdiagnosis, medstobeprepared Screeninginoroutforservices RulesStaffPerceptions ADV/orgperceptionthatPeoplewithdisabilitieslivesarecontrolledandlackofautonomy Advocatessometimesassumetheskillsofapersonwithadisability Fearoflosingtheirchildren-shameandguilt Generaldiscouragementwithsystemresponseinthepast Peoplewithdisabilitiesmisunderstandwhatisanunhealthyrelationship Peoplewithdisabilitiesdistrustdomesticviolenceandsexualassaultadvocates Lackofoutreachandnotenoughaccesstoself- advocates 40 Needs Assessment Report -dAP Focus group question: What are the barriers you have to serving people with disabilities? AccommodationBarriersPolicyBarriersServiceBarriers Physical Accommodation • Disentangling mental Lack of Trust • Accessibility of housing health, substance use, • It takes time to establish units dv/sa issues is complex trust • Materials not translated and confusing • How to ask intrusive • Need transportation • Shelter policies questions -asking about • Need funding for cab • Filling out paperwork disability – integrate into rides/pros and cons of • Need more time to talk intake questions or being on a bus line about what works and separating out as • Need ASL interpreters what doesn’t demographic question and then we have service What is Accommodation? need questions • Uncertainly about what • Need a welcoming accommodation is environment • Lack of accommodation provision and awareness: Staff Perceptions including the range/types • Discomfort talking with of people with disabilities, people with disabilities equipment, transportation • Complexity of disability • Reading – learning culture disabilities – hard to • The perception that people know if someone cannot with disabilities might read/fill out paperwork think they won’t get • Personal assistance issues services • Hard to distinguish between access needs vs. System Coordination service needs • Advocates are discouraged • Who is a vulnerable adult? with lack of services and • Don’t understand system resources for people with and rules/services for disabilities people w/disability • State systems need to be • Lack of experience with coordinated Deaf/Deaf Blind • Community orgs need to be Community coordinated • Confidentiality issues • People with disabilities are left out of support groups or do not fit in – become more isolated Focus group question: What should disability advocates do to inform people with disabilities about domestic violence and sexual assault? Service/OrganizationalNeedsStaffInteractions Haveaccessiblewrittenmaterialsaboutdomesticviolenceandsexualassault Clarifyrolesbetweendv/saadvocatesanddisabilityadvocates Collaborateanddoco-advocacy—donot Haveanopenapproach–believeandrespectsurvivors Donotmakeassumptions Includecaregiversasabusers Understandthatpeopleclosetoyoucould 41 Needs Assessment Report -dAP just hand off survivors to domestic violence and sexual assault agencies • Maintain confidentiality about abuse • Do safety planning • Acknowledge that people with disabilities are sexual and have a right to relationships • Participate in cross-trainings with domestic violence and sexual assault advocacy orgs and disability advocate orgs • Use special tools to screen for domestic violence and sexual assault • Educate staff about mandatory reporting considerations when the abuser is also the caretaker • Bigger need for public awareness – including educating disability advocates that domestic violence and sexual assault advocates exist be perpetrators • Respect survivors’ choices and decisions • Understanding why people with disabilities are exploited is a larger issue • Be open with LGBT community • Play a role in prevention – get info before bad things happen • Dispose of stereotypes about receiving domestic violence and sexual assault services (e.g., requires divorce) Focus Groups and Interviews with Disability Advocates Focus group question: What have you done at you organization for people with disabilities who have experienced domestic violence or sexual abuse that you are proud of? AccommodatingServicesEmpoweringPracticesCollaboration&Training • Office is a safe place • Know how to connect • Provide education/ • Communication with people people with individualized workshops with disabilities – we info/resources, break • Have many community know how learn to isolation, empowerment partners. Can communicate with • Making folks feel safe – provide/receive training anyone. We follow seeing the danger from them through with their • Know how to hook people problem and learn how to up with peers – either interface support groups or other • Individualized responses to community groups (in problems/barriers contrast to domestic • Assistance with legal violence and sexual bureaucratic assault advocates who barriers/processes experienced difficulty finding support groups for survivors with disabilities) • Link self-advocacy principles to violence awareness. Empowering people to be leaders 42 Needs Assessment Report -dAP Focus group question: Do volunteers and employees receive training on how domestic violence/sexual assault issues affect people with disabilities? No or limited training currently offered; both dv/sa and disability advocates believe in collaborative advocacy, but are not actively engaged in cross-training or other collaborations. CurrentandSuggestedTopicsforTrainingOtherTrainingIssuesCurrenttrainingfordomesticviolenceandsexualassaultissues None–domesticviolenceandsexualassaultisnotacomponentofanytraining,eitheratlocalcenteroratregionaltrainings AdvocatesneedconcretestepsabouthowtoworkwithsurvivorsSuggestedtopics Mandatoryreportingisnotfullyunderstood–notonlywhois/isnotavulnerableadult,butthedangerofretaliationbyabuserwasnotbroughtupbydisabilityadvocates. Trainingshouldaddressstickyissues– peoplewithdisabilitiesasperpetrators, mandatoryreporting,familymembersasperpetrators,retaliation(esp.whensystemfailsthevictim),perpetratorswhoaretheguardianorpayee,lackofcredibilityofpeoplewithdisabilitieswhendealingwithAPS,police,otherfirstresponders Letstaffbeguidedbypeoplewithdisabilitieswhohaveexperienceddv/sa–letthemguideusabouthowtochangeourmaterials/policies/practicestoaddressdv/saissues. Cross-trainingwithinownagency Lackofsharingofstaffknowledgeamongsteachother,needtoworkasateambetter. Cross-trainingwithotheragencies Needcrosstrainingacrosscommunityorgs Needtoworkbetterwithotherorgs.Wedon’tknowwhoincommunityprovidestrainingondomesticviolenceandsexualassault.Needtoteacheachother,workasateam(co-advocacy). Focus group question: When you are contacted by a person with a disability who is experiencing domestic violence/sexual assault, what do you do? • Reluctant to recommend mental health services because they often don’t address the problems • Provide information & referrals • Any successful approach will blend self-advocacy with domestic violence and sexual assault training • Take the time necessary to figure out what is going on • Mandatory reporting is often the first thought when abuse issues surface • Want more info on accessibility/availability of domestic violence and sexual assault services in their community • Need to build partnerships with domestic violence and sexual assault advocates • Abuse is not always physical or criminal – sometimes psychological • Need clarification about abuse by family members • Use technology for creative solutions to problems 43 Needs Assessment Report -dAP Focus group question: Sometimes people with disabilities who experience domestic violence or sexual abuse don’t disclose their experience. Why do you think that is? LackofTrustIdentifyingtheAbuseBarrierstoServicesFear/LossofResources • Many social service • Don’t identify what Lack of Services • Fear cops won’t agencies seek to is happening to • There are few peer believe or abuser preserve family them as abuse support groups will interpret. first and • Don’t want to for people with Lack of credibility foremost. Can betray the disabilities who • Fear of losing kids lead to distrust relationship with experience dv/sa – people with • People with abuser • Men aren’t served disabilities at high different by domestic risk of losing ethnicity, culture, violence and parental rights sexual sexual assault • Fear of losing orientation, adds orgs/don’t get the housing, PAS, another layer of help they need independence advocacy • Fear of retaliation considerations Discouraged with by abuser • People want time to Services • Don’t want to rock know/trust • Are accustomed to the boat – they agency before things going may lose what going there. wrong or not they have. “The People with happening at all situation you disabilities are when seeking know is safer more likely to talk help. They are than the situation with a friend than discouraged and you don’t” a domestic need to feel safe • Guilt/shame – if violence and before disclosing PAS worker is sexual assault abuser, survivor agency may feel guilty • domestic violence complaining and sexual about people who assault advocates perform essential should be tasks consistently • Money plays key present to build role – can only trust afford to live in certain areas, hard to find new place if you leave Focus group question: What should domestic violence and sexual assault programs do for outreach to people with disabilities? Service/OrganizationalNeedsStaffInteractions Needstrategiesthatreachpeopleingrouplivingsituations Outreachtoruralareas Websitesormaterialsshouldhavedomesticviolenceandsexualassaultinfo&resources,clearlanguagethathelps Havedomesticviolenceandsexualassaultadvocatesthatunderstanddisability; understandhowtoworkwithinterpreters Anyeffortmustbesustained–needtimetobuildtrust Takingtimeisimportant–peoplewith 44 Needs Assessment Report -dAP people understand what they have experienced is abuse, and what to do/expect when you contact domestic violence and sexual assault program • Presentations to people with disabilities in accessible meeting rooms -with food and accessible transportation. Make people feel welcome • Hold meetings at different times during the day, to accommodate different schedules • Need to include a domestic violence and sexual assault component in self- advocacy trainings • Do no harm! Don’t jeopardize home, kids, necessary supports • Increase networking through DSHS, DVR, 211 system . . . • There should be clarity about what the domestic violence and sexual assault program will and will not do • Brochures reachable by people in wheelchairs • Brochures for men with disabilities – are they welcome • Language in materials should be general, broad and welcoming • domestic violence and sexual assault programs should exhibit flexibility about transportation for people with disabilities • People with disabilities often need a network of services to provide needed support. Good advocates need good connections to other advocates -if one link in the chain breaks, it all collapses • Linking info/websites – there should be info about domestic violence and sexual assault on disability websites and vice- versa disabilities need more of your time, and giving it is the single most important thing you can do • Do no harm! Don’t jeopardize home, kids, necessary supports • A person’s disability is often blamed for the things that go wrong in their lives. Don’t blame the abuse on a person’s disability • There are tactics of abuse that are specific to people with disabilities, so safety planning needs to be individualized Focus Groups and Interviews with People with Disabilities Focus group question: Who in your community serves you the best? What makes their service the best? Can you give some examples? Services Staff Interactions • Support groups • Offer one place to go to get services – jobs, mental health care, food, homelessness, undocumented • Building trust is essential • Face to face contact • Spending a long time with each person, listening 45 Needs Assessment Report -dAP • Free food and clothes, and meeting people like yourself (night gathering) • Mental health service agencies • Transportation is available, close by • Available service is hard to get to • Have a feedback process, complaint process • Credibility – certain organizations have a reputation for “knowing their stuff” • Service is appropriate to what is needed • People have fears about mandatory reporting and it’s effect on confidentiality • Do not be judgmental • Do not make assumptions about what people need, access to things • Consistency over the long haul • Valuing people • Respect • Know the whole person • The receptionist is an important first contact who needs to be well trained and welcoming Focus group question: What advice would you give an advocate about how to better serve people with disabilities who have experienced domestic violence/sexual assault? • Understand that when things are not accessible it takes more time; people should not be penalized for being late • Be an active listener and model respect • Ask the person what they need, don’t tell them what they need • Take time to build trust • Resources need to fit basic survival needs • Be compassionate and be genuine • Offer help with paperwork (and explain things calmly) • Remember to check in and ask questions • Don’t be afraid to ask and talk about disability • There needs to be diversity in outreach material – people need to be able to identify with the materials -includes, class, race, disability, language Focus group question: Often there are good reasons not to tell a service provider things about you, for example, about your disability or about bad things that happened to you. What do service providers do or say to make you trust them? What do service providers do or say that makes you hesitant or careful about giving too much information about yourself? • Earn the right to ask personal questions • Don’t minimize a person’s situation • Be open and honest • Be an active listener • Consistency and prompt response – no matter what the question is • People want their advocate to understand their fears – understand “what the stakes are” for receiving help — potential loss of housing, children • When a person has multiple issues, dv/sa is often ignored/is secondary: mental health providers, substance use providers are not responding to dv or sa • Advocates need to develop individual strategies for each person • Good signs that clearly tell someone where to go • Offer help connecting to other effective resources in community Focus group question: What do abusers say or do that makes people with disabilities think nobody will believe or help them? 46 Needs Assessment Report -dAP PhysicalActionsVerbalAbuse • Isolation Fostering • Monitor daily actions • Fostering false dependency – can’t function • Threats to kill without abuser • Economic abuse • Fostering a fear of the “unknown” • Using kids – threatening to take children, • Fostering systems distrust etc. • Survivors fear of loss of independence Self-Esteem/Guilt • Telling her no one will believe her • Telling other people to not believe her or him • Verbal abuse, cutting down self-esteem • Threats and bullying, intimidation – telling others • Using guilt • Caregiver dynamic – fear of not having services, using guilt, can’t function daily, care giver as saints • Devalued -verbal abuse is tactic to achieve devaluation • All actions above increase people with disabilities’ internalized oppression Focus group question: If domestic violence or sexual abuse programs want to talk to people with disabilities, where should they go to talk about the services they offer? PlacesStrategies Medicalsettings Mentalhealthproviders Disabilityorganizations Substanceuseagencies Publicspaces–busstops,communitybillboards,library Foodbanks,Goodwill Wheretransportationis–accessibletransportation Clubhouses LGBTcommunitycenters Publicizeservicesbutdon’tseekpeopleout: Don’tcometome/letmecometoyou Materialsshouldbeinvariouslanguagesthatreflectpeoplewithdisabilities’perspective Accessible,inclusive,welcomingmaterials Spreadingtheword–“wordofmouth” amongpersonswithdisabilities,peopleshareinfowitheachother–thisisamainwayofgettinginformationaboutresources 47 Needs Assessment Report -dAP ___________________________________________ AppendixDDemographicandStatisticalInformation The State of Washington is located in the upper Northwestern region of the United States and has a population of 6,395,798. Washington’s population is growing, with a net migration rate2 from 2000-2006 that was almost twice the rate of the rest of the country (4.9% in Washington compared to 2.7% in the U.S.)3. In 2005, 12.5% of the state’s population resided in rural counties, which account for 59.4% of the state’s land area4. Rural populations tend to be older, less diverse, are more likely to live in poverty and have lower median incomes than urban populations. The rural counties in the Northeastern, South central and Southeastern regions of Washington have the highest percentage of people who have incomes that are at or below 200% poverty level (over 37% of population). There are twenty-nine federally recognized tribes in Washington State, which are independent sovereign governments with similar status as other states and foreign nations. Disability in Washington The U.S. Census collects data about Figure 3:Age ofPersons withaDisabilityin people who identify as having a disability. Just over 7% of the state’s population reported that they had one disability and 8.6% reported that they have two or more disabilities. The majority of persons in Washington State who have a disability are between 6 and 64 years of age5 (see Figure 3). It is important to note that the prevalence of disabilities among Washington’s population quoted in this section only includes non- institutionalized populations. Unfortunately, U.S. Census provides no information specific to institutionalized 2 Net migration, or the difference between how many people moved in and how many moved out, is one part of population change. The other part is natural change, or the difference between births and deaths. 3 Northwest Area Foundation -Indicators Website. Accessed online November 28, 2007. 4 Washington State Department of Health (Feb 2006). What is Different About Rural Washington – A rural health snapshot. 5 U.S. Census. 2006 American Community Survey: Washington State. WashingtonState16to64,14% 5to15,7% under5,16% 65andover,42% 48 Needs Assessment Report -dAP persons with disabilities. Income, Housing & Employment among People with Disabilities In Washington State, over 20% of people over the age of five who are disabled live below the poverty level, and only 41.4% are employed6. It is well documented that people with disabilities (including mental illness) are often living below poverty level, are unemployed, and struggle to retain housing7. Even if a person with Figure 1: Percent of County Population with disabilities is employed, they an Income Less than 200% Poverty Level often have a lower income (1999)8 compared to those without disabilities. For example, one study found that the mean household income of women without disabilities increased by almost three times as much as women with disabilities who were employed between 1989 and 2000 (12.6% increase compared to 5.6% increase)9. In addition, both men and women with disabilities experienced a higher decline in employment rate during this entire period, compared to people without disabilities. Income and housing have immense impact on the well-being of people with disabilities. While urban areas of Washington State are experiencing a rise in the cost of living that impacts most rental populations (Seattle’s cost of living is 8% higher than the rest of the U.S.), people with disabilities are routinely “priced out” of housing. In King County (where Seattle in located), four out of five rental households earning less than half of median income pay more than 30% of their monthly income toward housing10. More than two thirds of King County’s residents who have an income of less than $25,000 a year cannot afford more than $625 a month for rent. In Seattle, in 2007, the median two-bedroom apartment rental cost was $853. In Spokane, the second largest city in Washington State, the median monthly rental apartment cost was $530. 18.4to27.8% 27.9to37.4% 37.5to47.0% 6 Ibid. 7 Mental Health: A Report of the Surgeon General (1999) 8 Northwest Area Foundation -Indicators Website. Accessed online November 28, 2007. 9 Stapleton, DC, & Burkhauser, RV (2003). The Decline in Employment of People with Disabilities: A policy puzzle. W.E. Upjohn Institute for Employment Research, Kalamazoo, Michigan. 10 King County Benchmarks 2006: Housing. Available online at: http://www.metrokc.gov/budget/benchmrk/bench06/AffHsg/AffHsg_06nomap.pdf 49 Needs Assessment Report -dAP Urban areas typically offer more resources than rural areas for people with disabilities, including public transportation, accessible shopping and services, hospitals and clinics. However, the catch-22 for people with disabilities living in urban areas of Washington State, such as Seattle, is the rising cost of housing. In 2007, the average federal monthly SSI income was $467 or $5,604 per year – only 25% of the typical one-person income in the U.S.11,12. In King County, WA, the cost of renting a two-bedroom apartment alone would amount to over twice a person’s income13. This represents an increase from 2002’s estimates that 124% of a person’s SSI would Percent of SSI for 1-Bedroom Apartment in 2002 in Select Areas need to go toward of Washington State housing14. According to at least one major 150% national report, a person receiving SSI 125% would need to pay 109.6% of his/her monthly income to rent a one-bedroom % of SSI 100% 94% 84% 124% 78% 107% apartment15. It has 75% been estimated that in Washington State, there is a $595 gap 50% Tacoma Spokane Seattle- Bellevue- Combined Non-Metro State between affordable Everett Areas rent and SSI Region/County recipients’ income – the largest gap among all income earners residing in the state16 . Prevalence of Domestic Violence and Sexual Assault in Washington State Estimates of the prevalence of domestic violence in Washington vary, for many of the same reasons that national rates of abuse are difficult to determine. According to one of the larger population studies of health in Washington State, 26% (499,000) of the women over 18 years old who responded had experienced domestic violence at some point in their lifetime17. From January 1997 through June 2006 at least 359 people were killed by domestic violence abusers in Washington 11 Social Security Administration, Supplemental Security Record. Accessed Online November 30, 2007. 12 Priced Out in 2004 – The Housing Crisis for People with Disabilities. Consortium for Citizens with Disabilities Housing Task Force. 13 Based on a monthly median rental rate of $853 ($10,236 per year). Source: King County AIMS high. Accessed online November 30, 2007 at http://www.metrokc.gov/aimshigh/search2.asp?HHAffordableHousing 14 Priced Out in 2002. Technical Assistance Collaborative and Consortium for Citizens with Disabilities Housing Task Force, Washington, DC., 2003. 15Priced Out in 2004 – The Housing Crisis for People with Disabilities. Consortium for Citizens with Disabilities Housing Task Force. 16 National Low Income Housing Coalition – Out of Reach 2006. 17 MMWR Weekly: Prevalence of Intimate Partner Violence and Injuries -Washington, 1998 (BRFSS). July 07, 2000 / 49(26);589-592. 50 Needs Assessment Report -dAP State18. In 2005, 50% of women who were murdered in Washington were killed by their current or former intimate partner19 . From June 2005 to June 2006, 19,456 Washington adults and children were served at domestic violence emergency shelters20. Of these, 6,147 were sheltered overnight with an average stay length of 19.09 days. Providers turned away over 36,000 people from shelter21. The majority of those served at domestic violence emergency shelters were White (62%), followed by Hispanic/Latina (19%), Native American/Alaska Native (5%) and African/African-American (5%). Domestic Violence/Sexual Assault and People with Disabilities National Research Nationally, the rate of abuse against people with disabilities is quite high. One national study estimated that people with disabilities experience criminal victimization at a rate four times higher than rest of the population (and may be five to ten times higher)22. A five year retrospective study of children with disabilities in a pediatric hospital found that 68% of the children with disabilities were victims of sexual violence and 32% were victims of physical violence23 . Another study indicated that 90% of people with developmental disabilities will be sexually assaulted at some point during their lifetime. Forty percent will experience ten or more incidents24. One study of adult women with disabilities found that 62% had been sexually assaulted and had been victimized by a greater number of perpetrators for longer durations of violence than women without disabilities25. A recent study found that 67% of women with disabilities experienced lifetime physical abuse and 53% experienced lifetime sexual abuse26. These estimates are twice the rates of women without disabilities27. Conditions in staffed housing facilities do not improve rates of abuse against people with disabilities. For 18 If I Had One More Day: Findings and Recommendations from the Washington State Domestic Violence Fatality Review (December 2006). Washington State Coalition Against Domestic Violence. 19 Crime in Washington State 2005, Uniform Crime Reporting Project, Washington Association of Sheriffs and Police Chiefs (2006) and Domestic Violence Fatality Review data. 20 Data provided by 43 domestic violence shelter/safe home programs that contracted with the Washington Department of Social and Health Services. 21 Includes those turned away due to unavailable space/beds, not being a victim of domestic violence, or who had certain needs that they shelter could not accommodate. This is not an unduplicated number. 22 Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Journal of Sexuality and Disability, 9 (3), 243-259. 23 Willging, J.P., Bower, C.M., and Cotton, R.T. (1992). Physical abuse of children: A retrospective review and otolaryngology perspective. Archives of Otolaryngology and Head and Neck Surgery, 118 (6), 584-590. 24 Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse intervention for those with developmental disabilities. Santa Barbara, CA: James Stanfield Company. 25 Nosek, M. A., Howland, C. A., & Young, M. E. (1997). Abuse of women with disabilities: Policy implications. Journal of Disability Policy Studies, 8, 157-176. 26 Powers, L., Currie, M.A., Oschwald, M., Maley, S., Saxton, M., & Eckels, K. (2002). Barriers and strategies in addressing abuse: A survey of disabled women’s experiences. Portland, Oregon: Oregon Health and Science University. 27 National Research Council. (1996). Understanding violence against women. Washington, DC: National Academy Press. 51 Needs Assessment Report -dAP example, one study found that 85% of staffed housing residents reported sexual abuse, and males and females were abused in equal numbers28 . Similar to prevalence rates of domestic violence and sexual assault found in national studies, more men than women -either as intimate partners or as health care workers -are reported to commit acts of physical violence, sexual violence, emotional abuse, or neglect against persons with disabilities29,30 . Low income and unemployment are seen as risk factors for abuse among persons with disabilities. Unemployment or underemployment of persons with disabilities restricts their income and limits their choices for caregivers, leading to an increased risk of physical and sexual violence, emotional abuse, or neglect31. Lack of money also often causes persons with disabilities to live in areas where crime rates are high and the potential for physical and sexual violence is greater than in wealthier neighborhoods32 . Washington State The exact rate of abuse of people with disabilities in Washington is difficult to determine. Not only are there limitations to prevalence data for domestic violence and sexual assault among the general population but low rates of disclosure among persons with disabilities compounds the underreporting of abuse. It has been suggested that persons with disabilities are more reluctant to report crimes of violence, especially if the perpetrator is an individual upon whom the victim depends for essential services33. One study found that only 3% of sexual abuse cases involving people with developmental disabilities are ever reported34. Another study found that 71% of crimes against people with severe intellectual disabilities go unreported (compared to 37% of crimes among the general population)35 . 28 Brown, H., Stein, J. & Turk, V. (1995). Sexual abuse of adults with learning disabilities: Report of a second two- year incidence survey. Mental Handicap Research, 8 (1) , 3-24. 29 Brown H, Turk V. Sexual abuse in adulthood: ongoing risks for people with learning disabilities. Child Abuse Review 1994;3(1):26–35. 30 Marley JA, Buila S. Crimes against people with mental illness: types, perpetrators, and influencing factors. Social Work 2001;46(2):115–24. 31 Stromsness MM. Sexually abused women with mental retardation: hidden victims, absent resources. Women & Therapy 1993;14(3–4):139–52. 32 Curry MAA, Hassouneh-Phillips D, Johnston-Silverberg A. Abuse of women with disabilities: an ecological model and review. Violence Against Women 2001;7(1):60–79. 33 Tyiska, C.G. (1998). Working with victims of crime with disabilities. Office for Victims of Crime Bulletin. Washington, DC: U.S. Department of Justice. 34 Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse intervention for those with developmental disabilities. Santa Barbara, CA: James Stanfield Company. 35 Wilson, C. & Brewer, N. (1992). The incidence of criminal victimization of individuals with an intellectual disability. Australian Psychologist, 27 (2), 114-117. 52 Needs Assessment Report -dAP Institutional Settings Institutions and congregate care facilities for people with disabilities There are two state psychiatric hospitals and five institutions that serve developmentally disabled persons36 ,37. There are hundreds of nursing homes across the state as well as numerous group homes, adult family homes, boarding homes and other congregate care facilities. There is no reliable data on the prevalence of abuse among people with disabilities living in institutional settings. 36 Western State Hospital (Pierce County), Eastern State Hospital (Spokane County) 37 State institutions for people with developmental disabilities (5): Fircrest (King County), Rainier (Pierce County), Frances Haddon Morgan (Kitsap County), Yakima Valley (Yakima County), Lakeland Village (Spokane County) 53