Building Our Future Together Through Family Navigation: A Pilot Program Elizabeth Trenkamp, MT (ASCP), Stephanie Weber, PsyD, Jennifer Smith, PsyD-BCBA-D, Abbey Walter, MSW, LISW, Janet Seide, BS Leadership Education in Neurodevelopmental and related Disabilities (LEND) program The University of Cincinnati University Center of Excellence in Developmental Disabilities (UCEDD) The Division of Developmental and Behavioral Pediatrics (DDBP) Cincinnati Children’s Hospital Medical Center Results To Date 20 referrals Eight families enrolled Increased number of referring providers from five to seven (systematically increasing capacity of Family Navigator and integrating this service into clinical programming of DDBP) Background & Goals Family Navigation: Utilizes family members in the navigation role Takes advantage of the unique bond that develops from having similar life experiences and challenges Addresses the multitude of challenges facing families Takes a holistic approach by building a bridge that ensures effective and open communication between families and providers Activates families to move forward with accessing services and resources Gives balance to the clinical side of evaluation and treatment Provides mentorship for families to build their confidence, motivation, and sense of empowerment Goals of Family Navigation: Help families build upon their sense of confidence and competence Increase overall quality of life for families Examine the impact of caregiving on family members Offer family-to-family support and guidance Families identify their strengths and develop an action plan Methods of Program Development Preparation Phase: Recruited Family Navigator (LEND graduate in Family discipline) Conducted literature search and held interviews with other Family Navigation programs across the US Obtained foundation funding to support Family Navigator stipend, supplies and trainings Completed trainings to build skills of Family Navigator in interpersonal communication, reflective and empathic listening, Motivational Interviewing, professional boundaries, patient confidentiality, ethical decision making, documentation, health literacy, and mentoring/coaching Observed a multitude of clinical appointments and conducted “mock appointment” role-plays with various parent-professionals Obtained approval from Institutional Review Board for examining outcomes of program Announced program launch to wider division Implementation Phase: Educated referring providers on making referrals to Family Navigation following family Information Sharing and Summary meeting (ISS) Received referrals for families of children 6 years and under who were newly diagnosed with any diagnosis Contacted and began enrolling families into navigation Families complete pre navigation outcome measures: 1) Parent-Patient Activation Measure 2) Family Quality of Life Survey 3) Parenting Stress Index (Long form) Examples of Goals in Family Action Plans: Get established in school services and other needed services Engaging in appropriate organized group activities Narrow down services that are essential. Build a routine around services so we are more structured Making sure we have the appropriate services and supports in the educational setting To reach and become a member of the Autism community in Cincinnati Conduct navigation with individual families for a duration of 12 months (+/- 6 hours navigation in person or by email or phone) Share Benefits and Expectations of Family Navigation sheet with families Help families in developing an individualized plan of action by identifying families’ strengths and guiding development of action-oriented goals Explore with families what the needed steps are to achieve their goal Provide targeted resources to families Answer families’ questions/concerns regarding DDBP services, community resources, insurance/financial resources, transportation, school and parental needs Families complete post navigation outcome measures: 1) All pre-navigation measures 2) Satisfaction with Interpersonal Relationships with Navigator Supervised by a DDBP Social Worker and Psychologist Moving Forward Continue to build the Family Navigation program into the continuum of care in DDBP Increase the number of referring providers and extend the eligible age range Disseminate research findings Secure ongoing funding for program sustainability Barriers Obtaining access to electronic medical record (Epic) for documentation, correspondence with referring providers, and coordination of care Obtaining employment status of Family Navigator as a part-time FTE Building awareness of this service into a large division Integrating Family Navigation into existing clinic processes What families are saying about Family Navigation “I don’t know that we would have taken advantage of all the resources without Family Navigation.” “Without Family Navigation, we fear that we will never be able to get organized and move forward.” “So helpful to have Family Navigation so we can know that we can do it in small steps.” “Family Navigation is another outlet for parents so they are not in it alone.” Acknowledgments The Family Navigation Pilot Program in DDBP at Cincinnati Children’s Hospital Medical Center is supported through funding from the Jack H. Rubinstein Foundation for Developmental Disabilities as well as the Maternal Child Health Bureau (LEND #T73MC00032) and the Administration on Intellectual and Developmental Disabilities 90DD0696.