35 Halsey Street
Newark NJ 07102
Phone: (973) 642-8100 x105
Fax: (973) 642-8080
Problem: The Statewide Parent Advocacy Network (SPAN), home to NJ’s Family to Family Health Information Center/Family Voices, Federation of Families for Children’s Mental Health, Parent to Parent, Parent Training and Information Center, and Integrated Systems for CYSHCN grant, with Co-Conveners NJ Department of Health and AAP-NJ, key state partners NJ Departments of Children and Families (Child behavioral health), and Human Services (Medical Assistance Services; Developmental Disabilities), and key partners Parents of Autistic Children (POAC), Autism NJ, Autistic Self-Advocacy Network, NJAFSOs, Boggs UCEDD, NJ-CDD, and Centers for Independent Living, proposes to improve access to comprehensive, coordinated care for CYSHCN-Autism Spectrum Disorders and other Developmental Disabilities and families.
Goals and Objectives: Goal 1: Strengthen the leadership and infrastructure needed to achieve and sustain an integrated, community-based system of services for CYSHCN-ASD/DD and their families, including ensuring adequate funding to cover needed services, by building on the statewide Community of Care Consortium for CYSHCN and its core outcome workgroups, developed under SPAN’s current D70 grant, which includes representatives from families, state agencies, the UCEDD, the P&A, NJCDD, HMOs, NJ Primary Care Association, Child Care Resource & Referral Agencies, NJAFSO, EI Collaboratives, and disability organizations, to more strongly include ASD/DD disability organizations including the 6 regional autism clinical enhancement programs, to address the six core outcomes and work to implement NJ’s Autism Plan; Goal 2: Improve access to family-centered, coordinated, comprehensive care for CYSHCN-ASD/DD through medical homes that are part of an integrated, community-based system of services that includes effective early, periodic and continuous screening to identify needs and link children and families to services and resources, through expanding and enhancing the focus on ASD/DD in the medical home practices in 5-8 counties that are part of our current D70 project, each pilot project to include at least 1 children’s hospital, 1 FQHC, and 20-30 individual pediatric or family practices per region, each of 3 years; engaging practices in Learning Collaboratives to deepen and sustain quality improvement including on early and periodic screening using a standardized tool; funding 6 community collaborations; providing training to UMDNJ RWJ Medical school students during their pediatric rotation on developmental screening, medical home, and partnering with families and youth with ASD/DD; and training early childhood centers in early ID and community resources for children with ASD/DD; Goal 3: Increase effective transition for YSCHN-ASD/DD, through enhancing participation in their own health decision-making and in systems change, and improving the capacity of families and providers to partner effectively with YSCHN-ASD/DD in the transition process, through providing training and technical assistance to families and professionals and building on and expanding the Youth Advisory Council to impact all aspects of the project; and Goal 4: Improve active participation of families of CYSHCN-ASD/DD in all aspects of their children’s care and systems change and improvement activities and satisfaction with services, through building and supporting the leadership of diverse parents of CYSHCN-ASD/DD to strengthen their capacity to partner with professionals regarding their individual children with ASD/DD and in systems change, with a targeted focus on underserved CYSHCN-ASD/DD and families, with the support of national and NJ family leadership/support organizations.
Coordination: We will integrate these activities with existing initiatives and sustain them through the MCH Title V Block Grant and other state activities, such as Learn the Signs. Act Early, led by Boggs Center.
Evaluation: We will measure the impact of our work through project evaluation by Pamela Kelley, PhD, of the Central NJ Maternal and Child Health Consortium, also the evaluator on our D70 project.