December 16, 2014

Help Us Help Families of Children and Youth with Special Health Care Needs/Disabilities

Share the Caring - DonateIn this season of giving, we hope that you will consider a contribution to Family Voices to help us continue our work to keep families of children and youth with special needs and disabilities at the center of health care.

For over 20 years, Family Voices has pursued the dream of family-centered care for families with children and youth with special health care needs and disabilities. We have assisted families in navigating systems of services, mentored new generations of family leadership and infused programs and policies with the voices of families across the country. 

Family Voices helps families through a nation-wide network of 55 family organizations representing every state and the District of Columbia.  Each family organization provides one-to-one assistance, mentorship, training, and practical opportunities for families to help them partner in their child's health care and become partners with professionals in effective change. Daily, new generations of families find help through Family Voices State Affiliates and Family-to-Family Health Information Centers - help to learn from their peers, find the resources that they need to thrive as a family, and pay back by working with other families to improve life for those who follow.


Mom, Dad, and daughter


For the family of Jana, immigrants to our country, family-to-family support has been invaluable. Jana is a beautiful little girl in Connecticut who has autism and needs intensive support with activities of daily living. Through help from Family Voices of Connecticut/PATH they found information they needed about autism and new approaches to help Jana learn.

“We are seeing Jana make advances every day now. Without Family Voices of Connecticut/PATH, these things would not be happening.”

- Jana’s Mom

Highlights of Our Achievements:

  • Extensive technical assistance, training, and mentorship, for a network of 55 family-led organizations,
  • A successful effort to ensure funding Family-to-Family Health Information Centers for another year,
  • Support for family leadership in diverse communities through the Polly Arango Initiative,
  • A Spanish version of the very popular Bright Futures Family Pocket Guide,
  • Launch of a new Family Voices project website providing health and wellness tools, tips, and resources, and
  • Dissemination of information critical to our families through newsletters, listservs, social media, blogs and other online sites, reaching thousands of families and professionals.

New & Ongoing Challenges:

  • A lack of tailored information and help for our families seeking services through the ACA,
  • Disparities in health care for minority populations,
  • Lack of Medicaid expansion in 23 states,
  • Uncertainty around continued funding for CHIP,
  • Changes to Title V Block Grant reporting with as yet undefined roles for families,
  • Cuts to state budgets and political wrangling that eliminate services for families, and
  • Lack of permanent funding for Family-to-Family Health Information Centers.


Family of 4


Learning about a child’s special needs, navigating systems, and finding support are daunting challenges for families. Alejandra was born with hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent. Searching the internet for programs and support Alejandra's mom learned about South Dakota Parent Connection, a Family-to-Family Health Information Center and the State Affiliate of Family Voices. Thanks to that connection Alejandra will be ready for preschool next year and the family has a new network of support and relationships.

Our Committment to Families
We have a lot of work still to do.  Our network of family leaders brings together individuals with a variety of skills and experiences, each with a passion, generosity of spirit and shared vision of families as partners.  Working together we have proven that we can make a difference. Our partnerships will help us continue to be effective in keeping families at the center of children’s health care.

Our Request to You
Please consider a gift to Family Voices to help us continue to improve services for families of children and youth with special needs. Please make a donation, or become a member, or renew your membership.


Momand daughter


Adilynn’s mother cherishes the gift of life. Addie has a rare immune disorder that has required numerous hospitalizations. Thanks to many wonderful plasma donors, Addie gets infusions of antibodies bi-weekly. She has gained weight and is now on the normal spectrum. Addie's family received support from Raising Special Kids, the Family Voices State Affiliate and Family-to-Family Health Information Center in Arizona.

“Addie is the light of our lives. She inspires all who know her” - Adilynn’s Mom


Your gift will help us offer the gift of quality health care to families of children/youth with speical health care needs.  Your contribution will help us:

  • ensure that families have access to family-to family assistance in every state
  • get news and resources out to families through our e-newsletters and social media
  • provide training to family leaders on helping families get health  coverage,
  • develop tip sheets to help families partner with their child’s providers, and
  • support parent participation at leadership conferences.

On behalf of all of the families who will benefit from your support, thank you!