The Statewide Parent Advocacy Network (SPAN), New Jersey's Family to Family Health Information Center, the New Jersey Chapter of the American Academy of Pediatrics, and the New Jersey Title V program (administered out of the New Jersey Department of Health), partnered to support six regional medical home learning collaboratives. The collaboratives utilized a quality improvement methodology to facilitate practice transformation, build capacity among diverse family leaders, and strengthen systems of care for children and youth with special health care needs. Thirty diverse practices participated in this initiative, including Federally Qualified Health Centers (FQHCs), private practices, and children's hospitals. The initiative was support by three State Implementation Grants from the Maternal and Child Health Bureau of the Health Resources and Services Administration.

Implementation Insights:
    • Foster and maintain partnerships between Title V and other state agencies serving children and families, Family-to-Family Health Information Centers, and state chapters of the American Academy of Pediatrics.
    • Engage diverse parent/caregiver and youth partners as members of core improvement teams and in all phases of project planning, implementation, evaluation, and improvement.
    • Offer on-site technical assistance and support to help practices implement and test changes that support patient- and family-centered care.
    • Create medical home "Communities of Practice" that connect pediatric practices with other health and community services such as children's hospitals, FQHCs, Title V, state and local agencies, and disability organizations.




 Background Information

  • Type of Practice: Statewide Community of Care Consortium (COCC) co-facilitated by a family advocacy organization, Title V, and state chapter of the American Academy of Pediatrics. For details about the COCC, view the "More Information" tab.
  • Location: Statewide, New Jersey
  • Population Served: The initiative included 30 pediatric practices and served over 3,000 families, including approximately 1,500 immigrant families, with information, training and support. Approximately 110 diverse family leaders were trained as medical home parent partners.

 Pediatric Medical Home Implementation Strategies

  • Determine the needs of pediatric clinicians, families, and children in a particular state, region, and/or community.
  • Engage the following state and community-based partners in a Community of Care Consortium, focused on improving systems of care for children and youth with special health care needs:
      • State Department of Health
      • State Title V program
      • State chapter of the American Academy of Pediatrics
      • State Primary Care Association
      • State Association of Children's Hospitals
      • Family-to-Family Health Information Centers
      • Additional community agencies and advocacy groups
  • Utilize the multidisciplinary Community of Care Consortium to plan, implement, and evaluate activities related to improving systems of care for children and youth with special health care needs, including a medical home learning collaborative.
  • Recruit diverse practices to participate in a medical home learning collaborative, including the following:
      • Pediatric primary care practices
      • Family medicine practices
      • Federally Qualified Health Centers
      • Children's hospitals
  • Connect each participating practice with a Title V case management unit and a Family-to-Family Health Information Center Family Resource Specialist.
  • Convene a multidisciplinary core improvement team within each participating practice, including the following team members:
      • Pediatric physician champion
      • Nursing staff
      • Administrative staff
      • Parent/caregiver partners
  • Train participating practice teams on the implementation of Plan-Do-Study-Act cycles for continuous quality improvement.
  • Provide each practice with an opportunity to conduct a medical home self-assessment using the Medical Home Index and the Medical Home Family Index.
  • Provide technical assistance and support to each participating practice, include the following activities:
      • Coaching to assist practices with planning and implementing Plan-Do-Study-Act cycles
      • Monthly educational webinars
      • On-site technical assistance visits with representatives from the state chapter of the American Academy of Pediatrics and the state Family-to-Family Health Information Center
      •  Provision of tools and resources
      • Regional in-person learning sessions
      • Workshops and education specifically for parent/caregiver partners
  • Create "Communities of Practice," which foster connections between medical practices, parent partners, and local clinicians who participated in the medical home learning collaborative to sustain successful changes and improvements in quality of care.

 Challenges

  • ​Participating practices indicated that it was difficult to find time to implement Plan-Do-Study-Act (PDSA) cycles. The Statewide Parent Advocacy Network addressed this challenge by developing tools to outline and track progress on PDSA cycles.
  • Practices reported difficulty in engaging diverse parents/caregivers in quality improvement efforts. The Statewide Parent Advocacy Network integrated bilingual Family Resource Specialists on core improvement teams. These professionals helped practices to engage other bilingual/bicultural parents and caregivers in quality improvement efforts.
  • Practices indicated a need for community resources organized in an easy-to-use and easy-to-share manner.  Project staff compiled resources, organized by topic, into binders that were shared with participating practices. Binders were used to educate practice staff. Additionally, resources were photocopied and distributed to families. Binders included resources on the following topics:
      • Healthcare financing information for families
      • Transition (to adult life) resources for clinicians and families
      • Screening "flow charts" for practices and families
      • Screening and services resources by county
  • Receiving adequate payment for pediatric medical home transformation remains a challenge. Many payers are moving to value-based payment systems which include criteria similar to the National Committee for Quality Assurance (NCQA) patient-centered medical home recognition. The New Jersey Chapter of the American Academy of Pediatrics provides ongoing technical assistance and support to practices working on obtaining NCQA patient-centered medical home recognition through the use of certified NCQA coaches.

 More Information

  • Statewide Community of Care Consortium (COCC):
      • The focus of the COCC is to help New Jersey improve performance on the Maternal and Child Health Bureau six core outcomes for children and youth with special health care needs (CYSHCN) and their families.
      • One of the ways this is implemented is through the activities of the COCC workgroups, which include the following:
              • Medical Home and Community Resources
              • Early and Continuous Screening (in collaboration with Help Me Grow)
              • Transition to Adulthood
              • Adequate Public and Private Insurance
      • Each workgroup is co-chaired by a parent and professional to emphasize the importance of partnership and collaboration to meet the needs of and improve outcomes for CYSHCN and their families. 
      • Family leaders serve on each workgroup, and youth with special health care needs are represented on the Transition Workgroup.
      •  The goals of the COCC include the following:
          • Design and implement the leadership and infrastructure to achieve and sustain an integrated, community-based system of services for CYSHCN and their families.
          • Improve active participation of families in all aspects of their children's care and systems change and improvement activities.
          • Improve access to family-centered, coordinated, comprehensive care for CYSHCN through medical homes that are part of an integrated, community-based system of services.
          • Enhance access to early and periodic screening using evidence-based screening tools and connecting children and families to services and supports.
          • Increase focus on the unique needs of youth with special health care needs, including health care transition, in systems of care serving New Jersey youth.
      • The COCC has expanded its focus to include activities aimed at improving birth outcomes through the following initiatives:
          •  Partners for Prevention of Birth Defects and Developmental Disabilities, funded by the New Jersey Department of Health and New Jersey Department of Human Services Office for Prevention of Developmental Disabilities
          • Improving Birth Outcomes initiatives, including its Infant Mortality Collaborative Improvement and Innovation Network (CoINN) team.
  • For more information, contact Diana Autin, Executive Co-Director for Health and Family Support at the Statewide Parent Advocacy Network: diana.autin@spannj.org.
  • Download the Medical Home Index and the Medical Home Family index on the National Center for Medical Home Implementation "Tools and Resources for Practices" Web page.