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 Innovation Station Highlight: Practices in Family Leadership Development

By Kate Taft
Program Manager, Child Health, AMCHP

The AMCHP Innovation Station is any easy way to find emerging, promising and best practices in a wide variety of MCH topics, including family leadership development. Two examples of model practices in family involvement/leadership that can be found in Innovation Station are the New Jersey Statewide Parent Advocacy Network (SPAN) Parent Leadership Development Project and the Rhode Island Pediatric Practice Enhancement Project (PPEP).

SPAN Parent Leadership Development Project: The New Jersey SPAN Parent Leadership Development activities are aimed at building the capacity of families to advocate on behalf of their children, and partner with health, education, and other professionals. This statewide program involves more than 500 parents of CYSHCN per year. The program provides intensive leadership development, ongoing peer-to-peer support, and leadership practice opportunities for families; particularly underserved families. The diverse SPAN staff consists of parent leaders who started out needing help to advocate on behalf of their own children and families, and then developed a passion to help others and change systems so that parents would not face the same challenges and barriers. All SPAN programs and activities are based on the input of staff, the volunteer SPAN Resource Parents, and input from the families being served. The impact of parent participation is reflected in victories such as having their recommendations included in the recommendations of the Governor’s Blue Ribbon Panel on Immigrant Affairs Panel and decision by the state Department of Education to hold additional hearings in multiple locations at more easily accessible times and places. To find out more about SPAN work with parent leadership development, visit spannj.org.

Pediatric Practice Enhancement Project (PPEP): The Rhode Island PPEP is a cost-effective model of utilizing parents on-site in pediatric primary and specialty care practices to work directly with families identified by the physician as needing assistance with system navigation, resource identification, peer support and education. Developed in 2003, the overall goal of PPEP is to improve short- and long-term health outcomes of CYSHCN. The project places and supports trained parent consultants in clinical settings to link families with community resources, assist physicians and families in accessing specialty services, and identify systems barriers to coordinated care. The primary role of the parent consultant is to create linkages between the family, pediatric practice, and the community as a whole. The PPEP model demonstrates that utilizing a paraprofessional to reinforce health care messages, perform care coordination, and provide patient education is more cost effective than utilizing a nurse or social worker. Furthermore, they found that a paraprofessional matched culturally and linguistically is more effective in improving health outcomes. More information about PPEP can be found at: health.ri.gov/ family/specialneeds/ppep.php.

By sharing information on successful practices through Innovation Station, AMCHP hopes to encourage replication and spread innovative practices between states to improve health outcomes. For more information about these, as well as other emerging, promising and best practices in maternal and child health, visit amchp.org/ innovationstation.