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
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
Integrating Young Adults with Autism Spectrum Disorder into Your Practice: Tips for Adult Health Care Clinicians | Tip sheet for adult practices caring for young adults with Autism Spectrum Disorder (ASD) with suggestions to help adult health care clinicians successfully integrate young adults into their practices
Integrating Young Adults with Intellectual and Developmental Disabilities into Your Practice: Tips for Adult Health Care Clinicians | Tip sheet for adult practices caring for young adults with intellectual and developmental disabilities (ID/DD) with suggestions to help adult health care clinicians successfully integrate young adults into their practices
Telling Your Story Resources | The voices and stories of parents can have a significant impact on public policy changes that improve services to and outcomes for children and families. This webinar, PowerPoint slides (pdf), and workbook (doc) on “Telling Your Story for a Public Policy Purpose” can help parents tell their story more effectively and with more of an impact.
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.
Working with Adult Allies | Webinar from the Autistic Self-Advocacy Network (ASAN) explores how youth self-advocates and adult allies can collaborate effectively
Sharing Your Story for a Public Policy Purpose | Webinar from the Autistic Self-Advocacy Network (ASAN) explains how to use personal stories for advocacy in different situations
Participating in Advisory Groups | Webinar from the Autistic Self-Advocacy Network (ASAN) on what youth self-advocates need to know in order to serve on boards and other groups
Leadership is a Journey: A Series for Youth Self-Advocates | Webinar series from National Center for Family/Professional Partnerships (NCFPP) in collaboration with the Autistic Self-Advocacy Network, Kids As Self-Advocates, and Youth MOVE supports the identification of leadership as a journey and support understanding and learning in key leadership development area
Starting and Sustaining a Youth Advisory Board Series | Webinar series for organizations that seek to develop a youth advisory board