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
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. http://www.arcnj.org/
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: http://www.spanadvocacy.org/content/health-care-financing-factsheets-eng…
Link to Spanish Fact Sheet Series: http://www.spanadvocacy.org/content/healthcare-financing-factsheets-spanish
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.
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 http://www.spanadvocacy.org/content/transition-tip-sheet-teens-spanish(Spanish)
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.
We also have a national column the 1stof each month for family caregivers of children with special needs at www.hopefulparents.org.
NATIONAL TECHNICAL ASSISTANCE CENTERS
Catalyst Center/National Center for Health Insurance and Financing for Children and Youth with Special Healthcare Needs: Go to http://cahpp.org/project/the-catalyst-center/
Got Transition: Got Transition aims to improve transition from pediatric to adult health care. Go to http://www.gottransition.org/
National Center for Ease of Use of Community-Based Services: Go to http://www.communitybasedservices.org/
National Center for Medical Home Implementation (a project of the American Academy of Pediatrics): https://medicalhomeinfo.aap.org/Pages/default.aspx (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 https://medicalhomeinfo.aap.org/practices/Pages/NJ.aspx)
National Newborn Screening & Global Resource Center: http://genes-r-us.uthscsa.edu/
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)