When our son David was diagnosed with autism and bipolar disorder at age 3, our family joined millions of others on a long, winding journey to find the right special needs services. Sometimes we felt totally lost. (Our Programming VP Angie Lassiter calls it “The Parking Lot Moment.” You come out of a doctor’s appointment or a school meeting. You climb in your car, grip the steering wheel, and think, “What am I going to do NOW?”)
Though David still faces many challenges as a young adult, the Guiding Star helped us steer out of the parking lot and down the road to support for independent living. The Guiding Star is a way of organizing your journey so you don’t feel lost or overwhelmed when you look for services.The five points of the Guiding Star are five tasks that can keep you oriented and on the right road–no matter what system you must navigate. It helps you turn problems into priorities. It lets you start from where you are today, and take this journey one step at a time. Family Road Map Institute’s learning tools and Facilitator/Coach training programs help families and young adults use the Guiding Star to find better services for behavioral, developmental, and other special health needs. Since a group of parents started this project in 2007, hundreds of family members from Maine to Hawaii have followed the Family Road Map. Because life just gets easier when you’ve got a plan.
As the mother of a child with autism, Wendy Besmann saw patterns of interaction between families and treatment providers that impeded the flow of service delivery. 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 “Skip the Drama! How to Listen to Test Scores” from Family Road Map. 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 Family Road Map curriculum based on the book is now taught from Maine to Hawaii by peer support and clinical/social work providers who participate in the Family Road Map Certified Trainer and Facilitator collaborative.
A Californian who transplanted decades ago to Knoxville, Tennessee, Besmann started Team Up for Families in 2007 as a Tennessee-based initiative that produced the workbook Team Up for Your Child with sponsorship from National Alliance on Mental Illness (NAMI) Tennessee. A curriculum grew out of Team Up, taught by a family support partners working all over the country in “system of care agencies funded through grants from the federal Substance Abuse and Mental Health Services Administration (SAMHSA). The content in this curriculum grew and changed as trainers from Maine to Hawaii contributed their own experiences and cultural perspectives. In 2017, Besmann collaborated with a group of trainers to publish Family Road Map as a step-by-step Guide and curriculum for workshops, support groups, and case management. In 2018, she collaborated with a group of young adult leaders and her co-author Kimberly Douglass (an associate dean and associate professor at Middle Tennessee State University) to produce Young Adult Road Map as a step-by-step Guide and curriculum for people in their teens and twenties.
The next challenge for Besmann and Family Road Map Institute is to gather data that will keep the curriculum reliable and relevant across multiple contexts. Team Up for Families, the original initiative, was charted as a non-profit in 2018 to pursue this objective. The view that informed Besmann’s earliest design was rooted in her own personal experience, but it was 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 and her FRMI/TUFF colleagues (led by new TUFF Executive Director Heather Hall) hope to produce comparative effectiveness research that indicates the impact of family navigation training on child health outcomes.
Other Family Road Map Institute Leaders
Angie Lassiter, Assistant Director of Programs for Family Road Map Institute
Heather Hall, MS, Executive Director of Team Up For Families (TUFF), a family-run, training, advocacy, and research organization dedicated to proving the effectiveness of problem-solving skills on increased access to appropriate services and supports for families and young adults. She obtained her Master of Science in Library and Information Science from The University of Tennessee at Knoxville College of Communication and Information. While completing her degree, she won the “Best Technical Project” Award in 2017 for her business plan, “Experience Tennessee.” From April 2017 – April 2018, Heather worked as the Strategic Development Lead for Family Road Map Institute. During her time there, she edited Family Road Map and Young Adult Road Map, while designing and editing the Family Road Map Lesson Plan. She also is the primary author for the Young Adult Road Map Lesson Plan. Now Executive Director of Team Up For Families, Heather will seek partnerships with other agencies and organizations to fulfill TUFF’s mission of training, advocacy, and research for families.
Keva Clark, M.Ed, Family Road Map National Master Trainer
Crystal Karenchak, Family Road Map Master Trainer
Wanda Cummings, Family Road Map Master Trainer
Sue Emley, Family Road Map Master Trainer
Susan Wood, Family Road Map Master Trainer