Family to Family Health Information Center @ Family Voices-NJ

Family to Family Health Information Center @ Family Voices-NJ

SPAN is the Familiy Voices State Affiliate Organization for National Family Voices.  Our Family to Family Health Information Center works to enhance access to quality healthcare and other services for children, youth and young adults with special healthcare needs and their families, and to support families in their parenting and advocacy to promote positive health and wellness for their children.  Family Voices-NJ, affiliated with National Family Voices, works to “keep families at the center of children’s healthcare.”

·         Providing information about health insurance, partnering with healthcare providers, health literacy, and community services for children and youth with special healthcare needs

·         Giving you tools to appeal denials of services

·         Assisting with access to family resources including services, supports, and health promotion

·         Helping you find healthcare providers

·         Offering family-to-family emotional support

·         Linking you to leadership opportunities to improve healthcare and health coverage for children with special needs

US Department of Health and Human Services Health Resources and Services Administration Maternal and Child Health Bureau.  This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant H8MC07997, NJ Family to Family Health Information Center, at $95,700/year. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.


NJ Department of Health Division of Family Health Services Special Child Health and Early Intervention Services

NJ Council on Developmental Disabilities

Mercedes Rosa
Project Director
Lauren Agoratus
Family Voices-NJ Coordinator
What families/professions are saying about this project:

“Losing my insurance turned out to be a blessing in disguise. I have a 13 year old with Down syndrome and autism. He has major behavioral challenges and at the suggestion of his Neurologist, he was taking 3 different medications that made his behaviors worse and made him gain 40-50 pounds.  I was desperate when I contacted SPAN because I could no longer afford the medications and was overwhelmed with his other health challenges. SPAN recommended the Federally Qualified Health Center near my home and over time, we were able to wean him off the medications. I worked with SPAN to develop a positive behavior plan for school and they helped us get connected with Special Child Health Services and the Family Support Organization.  I am so amazed that my son is now a totally different kid. He lost 30 pounds in 6 months and his overall health and behavior has significantly improved. He can run around the park without wheezing!”

Key Resources of Interest:

Title:  Healthcare Advocacy Toolkit Guide for Families and Individuals with Developmental Disabilities

Description:  This guide provides an overview of critical information needed by families of and individuals with developmental disabilities to access health insurance and health care.


Mental Health Crisis factsheet

Quick tips, resources, and contacts on what to do in a mental health crisis.

Title:  Changes to services from the Division of Developmental Disabilities

Check out ARC of NJ homepage describing how families of children in DDD were moved to PerformCare.  Also see item on the new requirement on Medicaid eligibility for anyone 21 and older for DDD services.  There is also a problem reporting form link.

Title: Healthcare Financing Fact Sheet Series

Description: This 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

Link to specific resource in Resource section:…

Link to Spanish Fact Sheet Series:

Title: Healthcare Advocacy Across the Lifespan: What Parents of Children with Disabilities Need to Know

Description: This guide summarizes information on education, health, human services, early intervention, and other agencies that help children with special healthcare needs and their familie


Title: Maximizing Coverage Under NJ’s Autism & Other Developmental Disabilities Insurance Mandate: A Guide for Parents & Professionals

Description: This guide 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


Title: Transition to Adult Life On-Line Resource Guide

Description: This interactive on-line resource guide for youth with special needs and their families provides information on how youth can figure out what they want to learn and earn, and where and how they want to live, and get the services they need to accomplish their goals.


Title: Being a Healthy Adult: How to Advocate for Your Health and Healthcare

Description: Being A Healthy Adult: How to Advocate for Your Health and Health Care, 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.

Link: and…(Spanish)

Title:  Transition Tip Sheets for Teens

Description:  These fact sheets, in English and Spanish, provide useful tips for teens with special needs and their parents on transition processes and resources.

Link: (English) and

Title: Transition to Adult Healthcare: NJ Action Blueprint

Description: This guide, developed by the Boggs Center University Center of Excellence on Develpmental Disabilities 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 adults with disabilities.


Title: Preparing for a Hospital Stay

Description:  This fact sheet contains tips for parents on preparing for a hospital stay for their child with special healthcare needs.


Need help with unpaid medical expenses?  FInd out about NJ’s Catastrophic Illness in Children Relief Fund at
Title: Surviving a Hospital Stay with your Child with Special Healthcare Needs…And After!
Description:  This fact sheet has tips for parents about dealing with their child’s hospitalization and preparing to go home
Why is healthcare reform so important for children with special healthcare needs and their families?  Check out the Family Healthcare Story Book at…
Where can I find out information on my child’s disability? Go to to access the former National Dissemination Center for Children with Disabilities-condition specific information in English/Spanish
Access Exceptional Parent Magazine’s yearly reosurce guide on specific conditions at
Access an interactive kids/teens/parents site at
Locate the closest Special Child Health Services Case Management Unit at ttp://
Check out the ARC Summary of NJ’s Medicaid Managed Care changes at

We also have a national column the 1stof each month for family caregivers of children with special needs at


National Family Voices – National Center for Family Professional Partnerships: National Family Voices works to “keep families at the center of children’s healthcare,” with a special focus on children and youth with special healthcare needs.  Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.  Through its national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care.  Family Voices-NJ @ SPAN is the NJ state affiliate for National Family Voices.  National Family Voices also houses the National Center for Parent-Professional Partnerships, which has many resources on how families and family organizations can work effectively with professionals, state agencies, and others, at the individual, program, state, and national level.  SPAN partners with FV on the NCFPP, providing Serving on Groups train the trainers for family organizations and Leading by Convening: The Partnership Way trainings for state agencies, professional organizations, and family-led groups as well as webinars and other connections to leadership opportunities for diverse youth and young adults with special healthcare needs in collaboration with the Autistic Self-Advocacy Network, Kids As Self Advocates (KASA), and Youth MOVE.  Link to Family Voices:; link to National Center for Family-Professional Partnership: 
Leadership is a Journey: A Series for Youth Self-Advocates: A webinar series that supports the identification of leadership as a journey and support understanding and learning in key leadership development areas.

Catalyst Center/National Center for Health Insurance and Financing for Children and Youth with Special Healthcare Needs: Go to

Got Transition: Got Transition aims to improve transition from pediatric to adult health care.  Go to

National Center for Ease of Use of Community-Based Services: Go to

National Center for Medical Home Implementation (a project of the American Academy of Pediatrics): (NJ’s Medical Home Initiative, a collaboration of SPAN, AAP-NJ, the NJ Department of Health, and other partners, is featured as a promising practice at

National Newborn Screening & Global Resource Center:


Bright Futures for Families

Description:  Bright Futures for Families helps parents make decisions for their cihldren by providing parents with the resources they need to become confident, well informed, and active partners in their children’s health and development.  The resources provide insight and guidance as parents plan health visits and discussions with the professionals who share in the care of their children.



Mercedes Rosa, Project director

Lauren Agoratus, Central/Southern Regional Coordinator

Shirley Johnson, Northern Regional Coordinator

Jeannette Mejias, Bilingual Parent to Parent Coordinator (Statewide)