As the mother of a child with autism, Wendy Besmann saw patterns of interaction between families and treatment providers that often meant service delivery was frustrating for everyone. She developed a systemic view of this process and condensed it into a 100-page workbook full of practical charts, checklists, and strategies for parents. “Specialists are not always good at explaining complicated matters in simple terms,” she observes in a section called “How to Listen to Test Scores” from Team Up for Your Child: A Step-By-Step Guide to Working Smarter with Doctors, Schools, Insurers, and Agencies. Besmann offers six handy ways to politely but firmly say to a provider, “Please explain this data more clearly so I can understand your recommendations.” The underlying power/authority message: Take control of the conversation, build credibility as a knowledge player, and form a mutually-advantageous working partnership with the power gatekeeper.” An interactive “Road Map/Hoja de Ruta curriculum based on the book is now taught from Maine to Hawaii by parent paraprofessionals who participate in Besmann’s Team Up for Families trainer collaborative.
Road Map/Hoja de Ruta family workshops incorporate games and tools that range from play parachutes to scrapbooking materials in order to help parents experience effective interactions. Since providers typically shape the dynamics that families encounter, Besmann is now developing a Road Map curriculum that will use many of the same playful techniques to teach provider staff such as medical students and case workers a systemic view of power transactions in family/provider relationships. This holds positive implications for patient-centered care.
With enough funding, Besmann can upshift to her next challenge, to enhance Road Map’s systemic approach by gathering hard data that will keep the curriculum reliable and relevant across multiple contexts. The view that informed Besmann’s earlier designs was rooted in her own experience, and gradually broadened through the experiences of parent trainers who implemented and refined the curriculum. However, this ever-widening anecdotal process indicates that an Asian-American immigrant family in urban Honolulu and a Latino family in rural Arkansas may need different tools for navigating their environments. Besmann wants to fund data specialists who can train and assist parent paraprofessionals in identifying relevant public information and organizing it into data sets that can tell real stories about local needs. Besmann would use these data to test and refine curricula according to location and context. The approach is analogous to “personalized medicine,” in which an individual patient’s health data can be used to design ever more precise treatments for his or her medical needs.