State Spotlight: New Jersey

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New Jersey contains an extremely diverse population for a geographically small state. New Jersey's team consisted of was led by the State Parent Advocacy Network-NJ (SPAN and family-Led organizations. In addition the team consisted of representation from the New Jersey Departments of Health, Human Services, Children and Families and Labor; the Governor's Council on Autism; three state DD agencies, three state autism advocacy organizations; immigrant and CBOs; county Special Child Health Services Case Management Units & Region Early Intervention Collaboratives; county Family Support Organizations; Child Care Resource & Referral Agencies; Community Action Programs; American Academy of Pediatrics; NJ Primary Care Association and individual Federally Qualified Health Centers.

To view New Jersey's State Grantee Profile, click here.

To learn more about New Jersey's work, visit SPAN's Community of Care Consortium for Children with Special Health Care Needs or MCHB Core Outcomes for Children & Youth with Special Health Care Needs webpages.

Project Activities

The project goals were to:

  • Strengthen leadership and infrastructure to sustain an integrated, community-based system of services for CYSHCN-ASD/DD and their familiesNew Jersey Guide.PNG
  • Improve access to family-centered, coordinated care through medical homes
  • Increase effective transition for youth with ASD/DD
  • Improve active participation of families of children with ASD/DD

Project activities are outlined below.

Community of Care Consortium

This consortium was successfully expanded (adding over 50 members) and provides a mechanism for families and professionals to come together to improve New Jersey's performance outcomes on the Maternal and Child Health Bureau's six core outcomes for CYSHCN.

The consortium helped to:

  • Establish parent and professional co-chaired workgroups
  • Develop resource materials and trainings
  • Disseminate county and regional resource directories

To visit the Community of Care Consortium webpage, click here.

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Medical Home Learning Collaboratives

These collaboratives led to improvements in use of validated screening tools and partnerships with families and community-based services through the use of nationally-validated self-assessment tools and family surveys.

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New Jersey Youth Excelling to Lead & Learn

The team's efforts strengthened NJ YELL, a statewide youth group.

The result of this work included:

  • Increased leadership within the state
  • Development and presentation of youth/family/health provider panels
  • Trainings on transition
  • Creation of transition resource tools

To view NJ YELL's Facebook page, click here.

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Family-Professional Partnerships

Partnerships between families and medical professionals were expanded and strengthened with the support of family resource specialists, workshops, and trainings for professional to improve their capacity to work with families.

Trainings were provided to parent leaders on:

  •  Medical Home Parent Partner Training
  • SPAN Resource Parent Training

Successes & Lessons Learned

New Jersey's successes included:

  • Introducing the six core outcomes to ASD advocates
  • Engaging the larger stakeholder group
  • Increasing knowledge of and access to available healthcare financing, community based services, family support, and transition services
  • Increasing routine use of standardized screening tools and medical "homeness" of practices participating in medical home learning collaboratives
  • Engaging diverse parent leaders and highlighted the barriers to underserved parents of children with ASD in identification, evaluation, and services

While New Jersey made progress in reducing the average age of identification and improving medical homeness, the average age of identification is still high and work needs to be done to reach more practices and increase the number that can effectively serve CYSHCN and their families.

To access more of New Jersey's resources through SPHARC's search engine, click here.