Family Voices New Jersey

Need help with unpaid medical expenses?
Catastrophic Illness in Children Relief Fund

Family Healthcare Story Book:
Why children with special healthcare needs and their families need healthcare reform now!


Where can I find information on my child's condition? National Dissemination Center for Children with Disabilities-condition specific information in English/Spanish yearly resource guide on specific conditions and monthly magazine (subscription) explaining health conditions to children interactive kids/teens/parents site

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The Statewide Parent Advocacy Network
is the Family Voices State Affiliate Organization for New Jersey.

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this 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.

To learn more about the national initiatives of the National Family Voices, please visit the Family Voices website at .

If families or professionals have questions on medical issues affecting
special needs children, Family Voices can help.

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Do you have a child with special health care needs?

Do you need information about health care or insurance?

Would like to help promote responsive, accessible, quality health care and health insurance?

Call Family Voices of New Jersey!

We provide information, assistance and outreach in working toward better health care systems for families of children with special health care needs in New Jersey.  Family Voices tackles medical issues affecting special children such as managed care, insurance issues, SSI, and new changes in special education.  We have videos, literature, and a national and statewide newsletter-all of which are free.  Family Voices also has a speaker’s bureau for presentations for families and professionals as well.  Call us at (973) 642-8100.

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Special Education Medicaid Initiative

Special Education Medicaid Initiative Schools are sending letters for parents to consent to access Medicaid for related services such as therapies on IEPs. Typically, if the district wants to access employer insurance, parents need to be aware that if they sign consent, it may count against the child's lifetime or yearly cap if their plan was "grandfathered" under healthcare reform and still has a limit on benefits. However, if they have a Medicaid HMO it's a win-win because it doesn't count against the child's cap, and the schools can get federal matches and provide more services. But there's a glitch. If the child has a Medicaid waiver it will count against their medical expenses. What they should do is write that they're not consenting but that the district has made them aware of the Medicaid initiative. They do not need to put the reason why they're not consenting. Otherwise districts get penalized if there's no proof they informed parents. Please note that on page 5 of the regulations it states "In order to avoid duplicating claims, LEA [school district] service claims will not be processed for a student who also receives services under a waiver program." so hopefully if a parent is unaware and signs, it's a safety net. Please note that Medicaid HMOs should not be requesting IFSPs (early intervention) or IEPs (special education) and reducing services at home because a child gets some services at school. The school services are needed for FAPE (free appropriate public education) and home services are medically-necessary so they're not the same. If parents have problems, please contact us or fill out the Medicaid problem form

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Bright Futures: Family MattersHeart
A free electronic newsletter for families and professionals about news, information, and activities in the maternal and child health community. To subscribe, send an email to Bev Baker-Ajene.

family2family newsletter cover - dec 08 Bright Futures - Family Matters

Bright Futures
2011 issues (in PDF format)
2010 issues (in PDF format)
2009 issues (in PDF format)
2008 issues (in PDF format)
2007 issues (in PDF format)
2006 issues (in PDF format)
2005 issues (in PDF format)
2004 issues (in PDF format)
2003 issues (in PDF format)
2002 issues (in PDF format)
2001 issues (in PDF format)

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Group of Children with sign saying "Friday's Child"

Friday's Child Newsletter

"Friday's Child" Newsletter Archives

Vaccination Awareness Website

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What is Family Voices? 

Family Voices-NJ is the New Jersey chapter of National Family Voices, which advocates to “keep families at the center of children’s healthcare,” with a special focus on children with special healthcare needs. We are also part of SPAN’s Family to Family Health Information Center ( and the Integrated Systems Grant ( for children with special needs.

The Family Voices Coordinator can help in three key areas: health care and health coverage, family support, and education issues for children with special healthcare needs. We help families and professionals, write articles, letters to legislators, and comment at public hearings on a state and national level. Family Voices can help parents of children with special healthcare needs get the services and supports they need.

Family Voices-NJ is also involved in a variety of family support and family caregiver groups. The Family Voices Coordinator serves as the Community Caregiver Action Network volunteer for National Family Caregivers, which helps family caregivers take care of themselves while caring for another ( ), the board of Caregivers of NJ, and the Family Support Center. The coordinator also has a monthly national blog for parents at She teaches free parent classes for the local chapter of NAMI (National Alliance on Mental Illness) and has many resources on children’s mental health including New Jersey’s child behavioral health system.

Family Voices-NJ can help parents navigate the healthcare system. Whether you need to find out about your child’s condition, find insurance, get information on healthcare reform, fight a denied claim, or get SSI (Supplemental Security Income), etc., Family Voices-NJ can help. You can reach the Family Voices Coordinator at

[Link to Healthcare Across the Lifespan, Transition fact sheet, Transition Resources for Health Practitioners, and the Boggs Center transition health guide]

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These Are Our Children

heart bullet Our children with special health needs are like other children. They want a healthy, happy childhood. They want to grow up to be productive adults. They live in our cities, towns and rural areas. They go to school and enjoy community events.

heart divider Our children have challenging health conditions that complicate their lives. Some have special physical, mental or emotional needs. Some live with a chronic illness. Some have a brief but life-threatening medical condition. Some of our children need only an accurate diagnosis, routine treatment or monitoring while others will require life-sustaining technology, treatment and medicines throughout their lives.

heart bullet Our children receive their care from a combination of financing and/or delivery systems. Many New Jersey children with special health needs receive care coordination services from Special Child Health Services Case Management Units.

heart bullet As families, we live every day with the uncertainties and challenges of chronic childhood illness or disability. We know that every child is just one day away from having a special health care need.

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These Are Our Principles

heart bullet Families are the core of any health system and should be respected and valued for our expertise and commitment to our children.

heart bullet Combining talents and resources in a good family - professional partnership creates the best relationship for managing the care of our children with special health care needs.

heart bullet Universal access to quality primary and specialty health care should be available at a reasonable price for all families.

heart bullet An effective, flexible health care system should be guided by medical and family needs, not bureaucratic policies.

heart bullet Comprehensive, coordinated, community-based care should be available for all families.

heart bullet Cost effective care should focus on outcomes, family choice and reduction of bureaucratic, duplicative procedures.

heart bullet Families and health care professionals should be responsible for quality assurance on heath care financing and delivery.

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NEW! Essential Health Benefits

NEW! Supporting patient access to lab results

NEW! Part B (special education) and access to family insurance

Update on NJ Medicaid Managed Care Changes November 27






Healthcare Transition for Teens with Special Needs

Healthcare Transition Summary for Teens Spanish

Medical Assistance Consumer Centers

Special Child Health Services

ARC of NJ summary of NJ Medicaid changes

NJ Dept. Human Services FAQ on Medicaid changes

Family-Centered Care Self Assessment Tool

Medicaid Fact Sheets

Cuidados Administrados de Medicaid para Niños con Necesidades Especiales en Nueva Jersey

The Individual Health Plan

Build a Bright Futures Team for Your Children's Good Health

Medical Issues Facing Special Needs Children - Key Issues

Testimony and Letters regarding Health Care Issues 
and Children with Special Needs

Special Child Health Services County Case Management(.pdf file)
The single point of entry for "Early Intervention from birth to
age three is now at (888)NJEI-INFO

Figuring Out How to Pay Your Medical Bills

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National Family Voices Organization Website

New Jersey Department of Education Website

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There are many ways to help us make sure that children with special health care needs in New Jersey receive the services they need!

Email us at:


1-800-654-SPAN (7726), extension 110


Send your name, address and phone number to:

Family Voices - NJ
c/o Statewide Parent Advocacy Network
35 Halsey St., 4th Floor
Newark, NJ 07102

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