Montana UCEDD Leverages Community Partnerships to Address Violence Against People with Intellectual Disabilities.

September 12, 2016

"Nothing About Us, Without Us" is the driving principle behind the community-based participatory research (CBPR) study, The Safety Project. Self-advocates are too often excluded from participating in research targeting the needs of their community. To increase inclusion, researchers at the University of Montana's Rural Institute for Inclusive Communities are partnering with self-advocates and other community partners to develop, implement, and evaluate an innovative and accessible group safety awareness program for men and women with intellectual disabilities. This article describes two vital community partnerships used in The Safety Project.

The Community Advisory Board (CAB) consists of six self-advocates, two men and four women, from Western Montana. These self-advocates represent community organizations such as People First, Self Advocates Becoming Empowered, and Special Olympics. Through in-person monthly meetings, CAB members provide input to ensure that both the content and format of the program materials are accessible to people with intellectual disabilities and that their processing needs and preferences are accommodated. The CAB members have made recommendations on the language used in the eight-session, weekly intervention curriculum. Suggestions included using plain language, shorter phrases, and fewer words in questionnaires and presentation materials, and adding descriptive images to help convey important concepts.

At the beginning of the project, CAB members created respectful meeting guidelines that are revisited in each meeting. The CAB members are compensated monthly for their time and expertise. The investigators believe this compensation has helped to strengthen commitment to and investment in The Safety Project as well as clarify that the CAB's role is that of advisor versus research participant in the intervention program.
The National Advisory Board (NAB) includes three self-advocates and three mentors from across the country. The mentors each support one of the self-advocates in their participation on the board. National involvement is important due to the implementation of The Safety Project in 12 centers for independent living in various regions of the country. The researchers, consultants, and the NAB hold quarterly teleconferences to ensure that the project addresses the needs of people in the intellectual disability community. Like the CAB, self-advocates on the NAB are involved in all phases of the project including its development, implementation, evaluation, and dissemination of the findings. They help ensure that all project materials are both linguistically and structurally accessible. The NAB also monitors adherence to the project objectives and timeline. The NAB's mentors - who together bring rich insight and expertise in disability rights, advocacy, domestic violence support services, and CBPR - provide technical, communication, and informational support to the self-advocates and offer larger programmatic and evaluation advice to the researchers. The NAB members receive an annual honorarium for their time and expertise.

The researchers rely on these advisory boards for continual guidance on creating and maintaining opportunities for candid conversations. In one NAB meeting, a self-advocate member emphasized the importance of ensuring that "each person has a chance to have a voice on every slide." That individual's mentor followed up by reiterating that question format is important so that agreement or disagreement can be shared, accepted, and addressed by all members. Additionally, the advisory boards are proving to be a significant vehicle for people with intellectual disabilities to participate, promote themselves and their professional activities, organize, and nurture relationships within the disability community.
Together with the CAB and the NAB, we are modeling how "partnering" differs from simply "involving." NAB mentor and disability rights leader Michael Baily stated: "[The project] is far from simple and to move beyond tokenism or paternalism to actually partnering is a big and revolutionary step. Empowerment: It scares people who love to be in control. All I am saying is how valid I think this project is."