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Community of Care Consortium for Children with Special Health Care Needs

Through collaborations with goverment agencies, child- and family-serving organizations, and medical professionals, the Community of Care Consortium is working to improve NJ’s performance on the six core outcomes for CYSHCN and their families, including: early and continuous screening, access to a medical home and community-based services that are easy to use, adequate healthcare financing to pay for needed services, effective transition to adult services, and family engagement at all levels and family satisfaction with services.

Through our work on Integrating Community Systems of Care, a leadership and infrastructure to achieve and sustain an integrated, community-based system of services for CYSHCN and their families has been established in New Jersey.  This Community of Care Consortium has achieved:

  1. increased systemic focus on the unique needs of YSCHN, including health care transition, in systems of care serving NJ youth;
  2. improved access to family-centered, coordinated, comprehensive care for CYSHCN through medical homes that are part of an integrated, community-based system of services; and
  3. increased and improved active participation of families of CYSHCN in all aspects of their children’s care and systems change and improvement activities, and
  4. reduced health disparities and their negative impact on immigrant or limited English proficient children and families; children and families of color; and low or moderate-income children and families.

The Statewide Community of Care Consortium for Children and Youth with Special Healthcare Needs’ Co-Conveners are Diana Autin, Executive Co-Director of SPAN; Marilyn Gorney-Daley, Director of NJ’s Special Child Health and Early Intervention; and Fran Gallagher, Executive Director of the American Academy of Pediatrics-NJ Chapter.   Our Core partners include NJ Departments of Health, Human Services, and Children and Families; the American Academy of Pediatrics-NJ Chapter; and the NJ Primary Care Association.  An additional 65 statewide organizations participate.

Bringing together community and government agencies, families and the medical community to identify gaps, develop recommended improvements, and work together to implement those recommendations.

 

 

This work was initially funded through Integrated Systems of Care Grants from the US Dept. of Health and Human Services Maternal and Child Health Bureau.  SPAN and its partners continue to sustain this initiative through funding from other sources including the NJ Department of Health, the Association of Maternal and Child Health Programs, and the Centers for Disease Control and Prevention, among other funders.

Jeanne McMahon
Project Director
jmcmahon@spannj.org
9736428100
Mercedes Rosa
Medical Home Coordinator
mercedesrosa@spannj.org
9736428100
What families/professions are saying about this project: 

“I always knew I needed to partner with my patients’ parents about their individual care, but it never occurred to me that parents could also help me improve my practice overall.  Our parent partners are an incredible source of information and ideas.  They know about the community resources in our area, and they know what parents need.  They help us figure out what is going right, and what we need to improve.  And they are an incredible resource for the other parents of children with special needs in our practice.  I don’t know how we ever lived without parent partners!”  Pediatrician, NJ Medical Home Practice 

 

Key Resources of Interest: 

Medical Home Information for Families (English) (Spanish)provides families with information on what a medical home is, the role of families as partners in the medical home, and how to make the most of their visit to their child’s doctor

Medical Home Information for Providers (English) (Spanish) provides primary care providers with information on what a medical home is, why it is important to invest in a medical home partnership with families, and helpful resources.

Use the My Health Passport for Teens with Special Needs to share important information with your medical care providers when you visit a doctor’s office or clinic or stay in a hospital, including  their medical history, medications, allergies, how your youth communicates, how they deal with pain, medical procedures, etc.  Also available in Spanish.

Healthcare Transition Summary for Teens with Special Needs (English) (Spanish) summarizes critical healthcare transition information for teens with special needs.

Healthcare Financing Fact Sheet Series is a series of one page fact sheets on NJ resources to finance needed healthcare for children with special needs, including Medicaid, NJ Family Care, Catastrophic Illness in Children Relief Fund, etc.

Healthcare Advocacy Across the Lifespan: What Parents of Children with Disabilities Need to Know is a guide to information on education, health, human services, early intervention, and other agencies that help children with special healthcare needs and their families.

Maximizing Coverage Under NJ’s Autism & Other Developmental Disabilities Insurance Mandate: A Guide for Parents & Professionals provides tips on how to maximize reimbursement under NJ’s ASD & Other DD health insurance mandate that requires insurers to cover services for children with ASD and other DD

Being a Healthy Adult: How to Advocate for your Health and Healthcare, developed by the Boggs Center, is a guide for young adults that includes frequently asked questions and a series of activities to use to become an effective advocate, especially when you have special health care needs.  Access it at http://www.spanadvocacy.org/content/being-healthy-adult-advocating-your-...

Transition to Adult Healthcare: NJ Action Blueprint, developed by the Boggs Center in collaboration with the NJ Developmental Disabilities Transition to Health Care Forum (including SPAN and other members of NJ's Community of Care Consortium for CYSHCN), provides an overview of the barriers and recommendations to achieve patient-centered medical care for emerging young adults with disabilities. Access it at www.spanadvocacy.org/content/transition-adult-healthcare-nj-action-blueprint 

Staff: 

Diana Autin, SPAN Executive Co-Director for Health & Family Support

Jeanne McMahon, Director, SPAN Health and Family Support Programs

Mercedes Rosa, Coordinator, D70 Medical Home Initiative