Families of children with special health care needs are their children’s best advocates and among the most knowledgeable about what is working well and not so well in the system. They are necessary sources of information and support professionals in helping to improve policies, procedures and programs, and are important allies in more general efforts to create better systems of services and care.
The broad definition of special health care needs includes those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by others generally.
Families are the core of our communities, as well as the constants in their children’s lives; as such, they are crucial in making any system work - whether it is related to healthcare, financial, education, recreation, any other resource or services that families use.
As the core, families should be supported and connected to other families as soon and often as possible. Families’ helping other families is vital in making connections for healthy emotional support and effective navigation of the system of care from those who use and live it.
Various programs in CSHCN are developed to help families coordinate care and receive services that are needed by children with special health care needs and their families. CSHCN believes and works in partnership with families on the following:
- Families of CSHCN partner in decision-making regarding their child’s health;
- CSHCN receive coordinated, ongoing, comprehensive care within a medical home;
- Families of CSHCN have adequate private and/or public insurance to pay for needed services;
- Children are screened early and continuously for special health care needs;
- Community-based services are organized so families can use them easily;
- Youth with special health care needs receive the services necessary to make transitions to adult health care.
Family Involvement is what helps all families, in partnership with professionals, make the best informed decisions so all children, youth and individuals with special health care needs will have optimal health, reach their dreams as well as their maximum potential.
Utah Family Voices supports the voice of families in decision-making, leadership and systems change. Family Voices provides information, training, support around healthcare and community services to families and professional partners.
There are various opportunities for parents to be involved in Family Leadership training, events and for the “family voice” to be included in local community, state, national committees, projects and forums.
For more information please contact Utah Family Voices.
For information on being involved in legislative activities that affect your family and community, please visit Legislative Coalition for People with Disabilities.
Successful systems must involve family members, including parents and families who are representative of culturally diverse communities, and children and youth with special health care needs, in meaningful, ongoing leading roles focused on developing culturally competent systems at all levels of policy, programs, and practice.
Having family involvement in program and policy improves the quality of system of service. Families give important and detailed information on the communities they live in, what works, what doesn’t work for their families and others in efforts to be cost effective not only for the family but for the system of services as a whole.
CSHCN partners with Utah Family Voices, which is funded by the Maternal and Child Health Bureau within Health Resources and Services Administration as the state Family-to-Family Health Information Center. Utah Family Voices has trained consultants who themselves are parents of children with special health care needs to assist other families to find relevant resources, provide credible information, emotional support and encourage empowerment.
Parents and families with children who have special health care needs often need help navigating complicated issues and the system of care. There are many resources, services and support groups that are available to families of children with special health care needs,
There are federally funded centers that are run for families by families that are available in every state. These organizations can assist families to find other credible support groups. To get information and support please contact one or all of the following organizations:
- Utah Family Voices Family to Family Health Information Center - funded in part by the Federal Maternal and Child Health Bureau
- Utah Parent Center – funded in part by the Federal Office of Special Education Programs
- Allies with Families – funded in part by the National Federation of Families for Children’s Mental Health
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