A network of families and friends speaking on behalf of children
and families with special health care needs.

This is Family Voices

In New Jersey, about 100,000 children have chronic or acute health conditions that may limit their school and play activities. Where do their families turn for health care guidance? A friendly voice? Words of encouragement?

Family Voices can help.

Family Voices was started in 1993 as a national, consumer-based clearinghouse and networking group focusing on children's special health needs. Our data collection encompasses subjects like family-friendly doctor referrals, education, and sharing thoughts and ideas from a consumer-based perspective. Family Voices has 7,000 members nationwide - families, friends, and professionals who know and love our children.

Each state has their own chapter of Family Voices. Family Voices - New Jersey informs families and professionals about public and private health care changes in our state. We also share the expertise and experiences of families with policy makers, the media, health professionals and other families. We serve on state and local boards and task forces. We bring the family perspective to policy discussions and decisions.

These Are Our Children

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.

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.

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.

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.

These Are Our Principles

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

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.

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

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

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

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

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

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: 
familyvoices@spannj.org

OR

CALL US AT:
(609) 584-5779 (Lauren Agoratus),
(908) 277-2883 (Louise McIntosh),
or 1-800-654-7726

OR

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