Family to Family Health Information Center @ Family Voices-NJ

Keeping families at the center of children’s healthcare

Working 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

What is Family Voices?

National 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 the tools to make informed decisions
  • Advocates for improved public and private policies
  • Builds partnerships among professionals and families
  • Serves as a trusted resource on health care

National Family Voices also houses the National Center for Parent-Professional Partnerships (NCFPP), 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 levels. SPAN partners with Family Voices 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. We also provide 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.

What is the State Affiliate Organization?

SPAN is the Family Voices State Affiliate Organization for National Family Voices. Family Voices-NJ works to “keep families at the center of children’s healthcare.” The SPAN 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. We help by:

  • Providing information about health insurance, partnering with healthcare providers, health literacy, and community services for children and youth with special healthcare needs
  • Giving families the tools to appeal denials of services
  • Assisting with access to family resources including services, supports, and health promotion
  • Helping families find healthcare providers
  • Offering family-to-family emotional support
  • Linking families to leadership opportunities to improve healthcare and health coverage for children with special needs

Library

Resources & Materials

Healthcare Advocacy Toolkit Guide for Families and Individuals with Developmental Disabilities  |  This 3-part 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 Fact Sheet  |  Quick tips, resources, and contacts on what to do in a mental health crisis

Mainstreaming Medical Care Program  |  The latest Medicaid updates, Medicaid problem reporting form, and other healthcare issues affecting those with developmental disabilities

Healthcare Financing Fact Sheet Series  |  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.

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

Health Care Options for Autism and Other Developmental Disabilities: A Guide for Parents and Professionals  |  This guide was created for parents and professionals who need to understand health-coverage options for the treatment of autism and other developmental disabilities. It describes different types of health-coverage plans, which federal and state laws apply to these types of plans, how those laws affect which benefits are covered and provides tips on accessing benefits.

Family Guide to Transition Services in New Jersey  |  This guide is a cohesive document on the transition process, services, and supports available to families in NJ that aims to answer questions and make transition to adulthood a successful period for youth/young adults with disabilities and their families.

Being a Healthy Adult: How to Advocate for Your Health and Healthcare  |  Developed by the Boggs Center, 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.

Transition Tip Sheet for Teens  |  This fact sheet provides useful tips for teens with special needs and their parents on transition processes and resources.

Transition to Adult Healthcare: NJ Action Blueprint  |  This guide provides an overview of the barriers and recommendations to achieve patient-centered medical care for emerging adults with disabilities. (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).

Preparing for a Hospital Stay  |  This fact sheet contains tips for parents on preparing for a hospital stay for their child with special healthcare needs.

Surviving a Hospital Stay with your Child with Special Healthcare Needs…And After!  |  This fact sheet has tips for parents about dealing with their child’s hospitalization and preparing to go home

Family Healthcare Story Book  |  Explains why healthcare reform is so important for children with special healthcare needs and their families

Categories of Disability Under IDEA  |  Definitions of disability terms from the IDEA regulations, available in English and Spanish

About Specific Disabilities  |  Brief, detailed fact sheets that define different disabilities, describe the characteristics, offer tips for parents and teachers, and connect readers with related information and organizations with special expertise in that disability

More Information

Useful Links & Websites

Exceptional Parent Magazine  |  Exceptional Parent Magazine’s yearly resource guide on specific conditions, newsletter, and more

Kids Health  |  Interactive website with sections for parents, kids, teens, and educators provides articles, slideshows, videos, health tools, lesson plans, and more

NJ Case Management Units by County  |  Locate the closest Special Child Health Services Case Management Unit (SCHCS CMU) to connect with case managers who work with a child’s parents, physician, and/or specialists to evaluate an affected child’s strengths and needs; and collaborate with the family and community-based partners to develop and individual service plan (ISP) for the child and family.

Arc of New Jersey’s Mainstreaming Medical Care Program  |  The latest Medicaid updates and a Medicaid problem reporting form as well as other resources for healthcare issues affecting those with developmental disabilities

NJ’s Catastrophic Illness in Children Relief Fund  |  Help with unpaid medical expenses

Hopeful Parents  |  National column for family caregivers of children with special needs (Note: This blog has been discontinued, but the archived articles are still available for reference.)

Catalyst Center  |  National Center for Health Insurance and Financing for Children and Youth with Special Healthcare Needs

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

National Center for Ease of Use of Community-Based Services  |  Advancing policy and practice solutions that improve the ease of use of community-based services for families with a child with special health care needs (CSHCN) and give youth with disabilities and special health care needs from under-served communities a better future

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—featured as a promising practice

National Newborn Screening & Global Resource Center  |  National resource center for newborn screening provides newborn screening information and assists families with questions about why babies need newborn screening tests, how they are tested, and much more

Bright Futures for Families  |  Helps parents make decisions for their children by providing them with the resources they need to become confident, well informed, 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. 

What Our Families Say

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!

Contact Us


PROGRAM STAFF

Lauren Agoratus

Family Voices NJ Coordinator
Regional Family-to-Family (F2F) Coordinator

Kasey Dudley

Regional F2F Coordinator

Shirley Johnson

Essex Family WRAP
Regional F2F Coordinator

Jeannette Mejias

Regional F2F Coordinator

Deepa Srinivasavaradan

Regional F2F Coordinator

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 US Department of Health and Human Services (HHS) under grant H84MC07997, NJ Family to Family Health Information Center, at $96,750/year through 2022. 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 US Government.