Success Stories

The Brand Called SPAN: The Statewide Parent Advocacy Network

By Jennifer Bolden Pitre, M.A. J.D.
Director of Integrated Systems, SPAN

At its core, the Statewide Parent Advocacy Network (SPAN), is a movement for parent leadership across systems. With a diverse staff at all levels, SPAN serves the full diversity of New Jersey families. The SPAN leadership team includes AMCHP Family Scholars and a current MCH LEAD & LEND Fellow.

SPAN health programs have expanded significantly with three Health Resources and Services Administration (HRSA) State Implementation Grants, designed to create and sustain improvements across all six core outcomes for children and youth with special health care needs in New Jersey. Key partners include the American Academy of Pediatrics – New Jersey Pediatric Council on Research and Education; NJ Departments of Health, Children & Families, Human Services, and Labor; Boggs Center, University Center of Excellence in Developmental Disabilities (DD), DD Council, and Disability Rights NJ; NJ Hospital Association and NJ Association of Teaching & Children’s Hospitals; the NJ Autism Centers of Excellence; disability-specific groups, such as the Arc of New Jersey/Mainstreaming Medical Care, Autism New Jersey, Parents of Autistic Children, the Chinese Autism Center and the NJ Alliance of Family Support Organizations (children’s mental health); the NJ Primary Care Association; and numerous other collaborators, such as the Family Support Center of New Jersey. The SPAN Community of Care Consortium for CYSHCN has more than 200 member affiliates.

The SPAN Family Centered Medical Home (MH) model is designed to engage both physicians and parents. With the help of dedicated medical champions, the MH project has engaged more than 30 practices and trained more than 100 medical students/interns. Modeled on the SPAN Family Resource Specialist Training, which includes 24 hours of classroom training plus practical experience in the field, more than 80 parent leaders have been trained to be active participants on their MH team and to outreach to practices encouraging their participation in medical home activities. (SPAN parent leadership development program was recognized by AMCHP as an Emerging Best Practice in 2009.) Practice teams have been supported by four county-based Learning Collaborative – with more than 150 participants – and monthly educational conference calls.

Initial outcome data show the increased participation of all families of CYSHCN (including Immigrant families) in all systems/aspects of their children’s care and improvements in coordinated, comprehensive care in participating medical homes that are part of an integrated, community-based system. For more information about SPAN, visit their website or contact Jennifer Bolden Pitre, Director of Integrated Systems, or Malia Corde, Medical Home Program Director.

Family Involvement in the Wisconsin Title V Program

By Amy Whitehead
Statewide CYSHCN Coordinator, Wisconsin Department of Health Services, Division of Public Health, Wisconsin Family Delegate, and
AMCHP Family & Youth Leadership Committee Chair

Infrastructure for the Wisconsin Title V Children and Youth with Special Health Care Needs (CYSHCN) Program is designed as a Collaborators Network, which includes Regional Resource Centers, Parent to Parent, Family Voices and statewide projects addressing national performance measures. To maximize family-centeredness and family professional partnerships, family involvement is woven throughout the network. Family leaders are hired because of their professional skills, systems expertise and life experience. They are connected to families at the local level with established channels for communication to keep current on the strengths and gaps in the system of supports. This model has been in place for more than 10 years. To build on this infrastructure, we have recently made a concentrated effort to encourage family leaders to seek national MCH opportunities to strengthen their knowledge base and further develop their policy/advocacy skills.

From this effort, there has been an increase in the number of state family leaders involved in national opportunities. We have three graduates of the AMCHP Family Scholar Program. Both the Wisconsin Family Voices co-director and Parent to Parent director have attended the annual conference. From this family involvement effort, family leaders have:

  1. Acquired a broader understanding of MCH; how it fits into the larger scheme of public programs/policies and how CYSHCN fits into MCH
  2. Discovered strategies from other states, which has broadened the possibilities for family advocacy, models of practice, service delivery and more
  3. Increased their level of comfort and skill in serving on state decision-making teams
  4. Learned to channel information in two directions – first, by listening for pressing needs and experiences of families at the local level and sharing those with national decision makers; and second, by taking cutting-edge information from the national level and passing that on to local families

This approach to strengthening family involvement in the Wisconsin Title V Program has been effective and illustrates one activity in the state. For more information, visit the program website or contact Amy Whitehead.