Family to Family Health Center

Goal: The overarching purpose of SPAN's Family to Family Health Information Resource Center is to provide the information and support that families of children and youth with special health care needs require to effectively partner in decision-making at all levels to achieve appropriate community-based systems of services for their children. The goal of the Family to Family Health Information Resource Center is to improve the participation of families of children and youth with special health care needs as partners in decision-making and their satisfaction with the services received by their children and families.

Objectives: The Family to Family Health Information Resource Center will help families make informed choices about health care to promote good treatment decisions, cost effectiveness and improved outcomes; provide information regarding the health care needs of and resources available for children and youth with special health care needs; identify successful health delivery models; develop and help implement models for collaboration between families and health professionals, including health care providers, managed care organizations, and state agencies; and conduct outreach to and provide training and guidance regarding the care of children and youth with special healthcare needs to families, health professionals, schools and others.

Activities: The Family to Family Health Information Resource Center will coordinate, facilitate, and provide training to parents of children and youth with special health care needs, providers, and other stakeholders on relevant issues through workshops and conferences; provide direct technical assistance and facilitate peer-to-peer technical assistance including information and referral, short-term assistance, and in-person assistance to families; collect, develop/revise, and disseminate to families and others, information on relevant issues to meet identified needs and/or gaps in available, culturally competent, family friendly materials; provide intensive family support to targeted immigrant and limited English proficient families of children with significant disabilities and special health care needs; and provide input & feedback to the Maternal Child Health Bureau & state agencies on the ongoing operations of technical assistance and training activities to inform policy decisions. Each year, 4000 families and professionals will participate in training; 4000 families and professionals will receive telephone or email technical assistance; 500 families will receive more intensive support; over 115,000 families and professionals will receive information through newsletters, newspaper articles, and website access; 15 pediatric practices will participate in medical home sessions; and the family perspective will be represented in 250 policy meetings on topics that impact children and youth with special healthcare needs and their families.

As part of this project, SPAN Family to Family will:

§ Conduct focus groups with families and evaluate information obtained from volunteers to determine best approaches to reach diverse families of children and youth with special health care needs

§ Develop regional and county based Family Health Resource Centers to provide training, technical assistance, and leadership skills development of families.

§ Design educational materials, forums and training sessions to supplement existing training and educational programs and provide training and information-sharing opportunities to parents, providers and stakeholders.

§ Provide direct peer-to-peer technical assistance to expand the capacity to respond to technical assistance requests.

§ Collect and disseminate, through methods such as an existing website and newsletter, information on relevant issues as well as develop original materials to assist children and youth with special healthcare needs, parents, providers, and stakeholders with information on topics such as home health care, and home and community services and supports.

§ Collect and analyze data to identify measurable outcomes and effective strategies in serving children and youth with special healthcare needs determine satisfaction levels, and to track intake, utilization, and costs.

Coordination: 21 state agencies (NJ Department of Health Title V and Early intervention programs, NJ Department of Human Services Division of Medical Assistance); disability, advocacy, family support, and health professional organizations; and universities will partner with SPAN to implement the project and coordinate services.

Evaluation Methods & Outcomes: The Family to Family Health Information Resource Center will measure its effectiveness through surveys, evaluations, and family focus groups and interviews. 90% of training and technical assistance participants will indicate the information is high quality, relevant and useful, and 85% of sampled participants post-training and TA will indicate that the information and skills assisted them in partnering with professionals and securing appropriate services. 85% of sampled state agencies, legislators, and policy makers will indicate that input from parents has a meaningful impact on them.

SPAN's Family to Family Health Information and Resource Center received initial and four years of funding from the Centers for Medicare and Medicaid Services of the U.S. Department of Health and Human Services. The Center is now funded by the Maternal Child Health Bureau-HRSA of the U.S. Department of Health and Human Services.

As part of our Family to Family Health Information Center, we are providing information related to the issues of health care for children with special health care needs. Some links are specific to New Jersey, but there are many that will be a help to everyone. Below is a recent listing of website links that we have found valuable and hope they will be of benefit to others.

If you have found valuable links that you would like us to incorporate into future digests, please send them to Diana MTK Autin, Diana.autin@spannj.org.

Would you like to help families like yours meet their child’s needs and their own?

Health Resource Parents volunteer to provide other parents with emotional support and information about critical resources for children with special health needs. Training is provided.

If you would like to ask questions or become part of the Health Resource Parent Network,
leave your name, phone number and county at

1-800-654-SPAN; extension 110
or email the coordinators at
familyvoices@spannj.org .

Please note: Organizations serving children with special needs are welcome to attend the train the trainer for their own knowledge and are welcome to volunteer!