Utah Family Voices was started as a volunteer effort in 1993, in partnership with our National Family Voices network, as a way of helping to advocate for and assist families in navigating and accessing health care and family support services that are family-centered and culturally appropriate for all children and youth with special needs.  Families of children and youth with special health care needs and disabilities are the center of any system of care and are the necessary voices to help ensure safety and wellness to not only survive but thrive in home and community settings.  To speak with a staff member from Utah Family Voices please call 801.272.1068.

Because the needs of our children and youth are chronic and complex, parents and caregivers are often challenged with finding the resources to provide and finance services for their children.  A grant from the federal Maternal and Child Health Bureau (MCHB) is currently funding Utah Family Voices to operate and sustain Utah’s Family-to-Family Health Information Center, housed under the Utah Parent Center to help address the various issues.  Through this project, Utah Family Voices assists families of children with special health care needs/disabilities and the professionals who work with them.  Utah Family Voices is staffed by parents of children with special needs who have experience and expertise in navigating the maze of services and programs.

Utah Family Voices provides statewide assistance in a variety of ways to families of children and youth with special health care needs and disabilities as well as professional providers and partners.

• Provide accurate information about the Affordable Care Act and how it may help
• Provide education about the benefits of a Medical Home
• Provide emotional and peer support through direct contact by phone, email and/or in person to families
• Assist with navigation of credible information and referrals so families can access the appropriate public and private resources and services.
• Provide information and education so families can make informed decisions and advocate effectively for the needs of their child and family.
• Present customized trainings and workshops for families and professionals on a variety of topics
• Develop newsletters, fact sheets and website materials for families and professionals on relevant issues.
• Provide information and training for families to develop or enhance their involvement and leadership opportunities in the system of care for children and youth with special health care needs and disabilities.
• Maintain essential partnerships and actively collaborate on health care, disability, legislative, system and policy change issues at any local, state and national level that may impact the lives of children and youth with special needs and their families.
• Provide information and training to professional partners and health care providers on family-centered care and family involvement.

Utah’s Care Notebook

In caring for a child with special health care needs, families get information and paperwork from many sources.  The Care Notebook is designed to help organize the information in a central place to assist both families and providers.  By the Medical Home Portal website, you may download the complete Care Notebook and compile your own binder or download separate forms.  Documents are available in both Microsoft Word and Adobe PDF formats.

Utah Family Voices staff contributes content to and supports the Medical Home Portal to view the extensive resources available.
The Medical Home Portal aims to provide ready access to reliable and useful information for families and professionals to help them care for and advocate for children with special health care needs (CSHCN) as partners in the Medical Home model.  The long-range goal is to improve outcomes for CSHCN and their families by enhancing the availability and quality of healthcare, related services and coordination of care.
When you visit this portal, you can expect to:

• Learn about your child’s condition.
• Find out about caring for your child’s special needs.
• Find out how to work with schools and educators.
• Use care notebooks and find needed forms.
• Learn about managing your child’s transitions.
• And much more!