Funded Projects

Problem:

Children and youth with special health care needs face many challenges when they reach early adulthood and attempt to transition to adult health care. This project attempts to improve the process through a partnership between a community agency and 2 university based pediatric programs.

Goals and Objectives:

Goal 1: To generate a transition program for CSHCN through a partnership between a community-based organization, Support for Families of Children with Disabilities and UCSF and San Francisco General Hospital. Objective 1: Hold monthly meetings with staff at clinics and with support for family leadership to help initiate and implement program (start of program onward through year 5) Objective 2: Organize advisory group of key stakeholders (Support for families, independent pediatricians, Local Title V director, AAP member and San Francisco Unified School district, Golden Gate Regional Center and Jewish Vocational Services) by Month 6. All advisory members have been contacted and confirmed. Objective 3: Develop ways to independently fund program after grant funding ends (all 5 years). Goal 2: Establish an on-site community-based program at both UCSF Medical Center and SFGH that would link CYSHCN and their families to appropriate resources in their specific communities. Objective 1: Hire a member of a community agency (Support for Families) within the general pediatrics practice at Mt. Zion and San Francisco General Hospital with medical oversight from medical director and social work. Hiring complete. Objective 2: Develop the physical space for a resource library and bring the outside community resources to the families and staff in the clinic (Month 6). Each clinic has identified space for resources. Stock and maintain resource library for families updating materials as needed. Objective 3: Develop transition plans and assessments through pilot testing of materials in first 6 months of grant for implementation. Iterative process between review from patients, providers, staff and advisory board. Goal 3: Initiate a transition assessment process and transition plan for children and youth with special health care needs (CYSHCN) starting at 12 years of age. Objective 1: Generate a registry of patients (100 per site) that are children with special health care needs and would require a transition plan. Children will be identified through social work and providers in the clinic. (All 5 years) Objective 2: Perform transition assessments in youth identified as needing transition assessments (Starting month 9) and develop transition plan with feedback to providers and social workers on plan and action. Coordinator will be responsible for implementation and follow up of plans. Objective 3: Evaluate if transition planning and assessments improve transition readiness and transition outcomes (insurance stability, housing planning, vocational goals) (all 5 years).

Methodology:

Since initiation of funding, each site has met monthly through joint meetings between staff (social workers, clinicians and Support for Families and project directors) to discuss implementation and how to effectively integrate the community agency into a working pediatric clinic structure. This has been a very productive endeavor as we integrate our transition coordinator into the clinic and have them actively engage in the patient care process. For the first three months we have implemented the pilot materials with families. Thus far we have worked with approximately 8 families to test the intake forms and assess individual needs of clients. We will finalize our survey form before full implementation this fall. We completed hiring of a permanent transition coordinator. The coordinator is a fluent in English and Spanish and a mother of an older child with special health care need, who is trained in nursing. We then plan to start assessments of children identified by our social workers and clinicians to address the transition and family needs of qualified youth. We have created the physical location for materials so that all children in both clinics can get resources and references normally only available at our community partner site. Finally, staff and residents have been notified of the program and are getting information about the various community programs available to families to enhance the educational experience to residents in how they can assist their CSHCN. Coordination Family Voices: They are our primary liaison between the different services and providers. San Francisco CCS (Title V). Dr. David Hayashida is on our advisory board and an active participant with assisting our patients with title V. We are also working with our State Title V agency. San Francisco Unified School District: coordinating with schools. San Francisco Department of Public Health: linking youth with programs.

Evaluation:

Implementation procedures are part of a Plan-Do-Study-Act Framework. We are currently pilot testing materials. We will then be performing a baseline transition assessment survey. This survey will be performed yearly through the program. Success will be ascertained by whether or not transition discussions and plans are generated.

Experience to Date:

In addition to our "transition services" our transition coordinator also provided general community family supports for CSHCN for 53 families, assisting families with social services and knowledge about supporting the family and children. This is not part of our formal report as we do not measure non-transition aged youth. Year two has been focused on expanding the transition materials that families need and to also generate a more "curriculum" based transition information guide for families. Dr. Whittle has incorporated the transition coordinator experience and is finalizing the learning module on transitions as part of the developmental pediatrics rotation. This Includes health care transition as a topic or sub-topic in the resident continuity clinic talks, which are provided before the start of resident clinic every day. For example, the topic for one week in December is on Children with Trisomy 21; this "talk" can include introduction of the process of health care transition to residents Dr. John Takayama has also started a pilot "continuity clinic for children with special health care needs" with one third-year pediatric resident; half of her clinics are dedicated to see CYSHCN with special social work and preceptor (Dr. Takayama) support and supervision which also works with the transition coordinator.