Midwest Advocacy Project (MAP)

The Mayo Clinic TBIMS will conduct one site specific research project for the 2007-2012 NIDRR funding cycle. The Midwest Advocacy Project (MAP) was selected because: (1) it meets a chronic need clearly identified by individuals with TBI, their families and significant others; (2) it builds on our previous NIDRR funded research; (3) it was unanimously endorsed by the consumer and professional members of our Regional TBI Advisory Council; and (4) it capitalizes on the strengths of Mayo Clinic’s TBIMS research program and clinical practice with well established community linkages including past successful collaboration with the regional Brain Injury Associations (BIA). The MAP is innovative because it is the first randomized clinical trial of its kind to scientifically test the efficacy of advocacy training for individuals with TBI, their families and significant others in effective self and system advocacy skills to improve their health and that of their communities. The project is aligned with the NIDRR research goal of maximizing participation by individuals with disabilities. Individuals with TBI, their families and significant others, and organizations representing them will be involved in the implementation, evaluation, and dissemination phases.

The target populations for the MAP are individuals with TBI, their families and significant others in three contiguous Midwest states, the regional state BIAs, public policy makers, the TBI research community, and other health care professionals. This project will be completed in three phases: (1) Development of TBI-specific measures of advocacy activity and of perceived control and self-efficacy to be used in Phase 2; (2) Implementation and evaluation of the MAP in three contiguous Midwest states; and (3) Assessing the MAP’s state-wide impact on the greater TBI community, state systems and public policy change, and on the media.

Want to get involved and learn more about improving brain injury services but not sure how to go about it?

Becoming a successful advocate is an important way to improve services for individuals with TBI, their family members, and significant others. The Brain Injury Associations of Minnesota, Iowa, and Wisconsin are partnering with the Mayo Clinic TBI Model System in a research study to identify how to best teach advocacy to people touched by TBI to improve their health and that of their communities. This groundbreaking study is expected to advance the science of TBI research.

If you are at least 18 years old and a person or family member/significant other affected by a moderate to severe TBI a year or more ago, you are invited to contact us about participating in this research study. You will be asked to attend four monthly training sessions in Minneapolis, Des Moines, or Madison depending on your state of residence. Travel expenses will be covered for those residing at least 60 miles from the training site. All participants will receive a research stipend upon completion of the four sessions.

The intent of the project is to train dedicated and passionate survivors of brain injury and family members to be effective self-advocates, advocates for others, and community organizers. Contribute to important TBI research and join with others eager to gain better advocacy skills and know-how.

Please contact the Brain Injury Association of Minnesota at 1-800-669-6442; Brain Injury Association of Iowa at 1-800-444-6443, or Brain Injury Association of Wisconsin at 1-800-882-8292 for additional information and an application.