Contact this group if/when: you live in Utah or are moving to Utah from another state and have a child or loved one with an existing genetic condition in need of genetics care and care coordination.
801-272-1051 or 800-468-1160
Contact this group if/when: you need emotional or family support, you are having difficulty navigating the system, you just moved to the state with a child with special needs, you would like training on how to take a more active role in your child’s care. This organization is run by parent volunteers that understand the challenges of raising a child with special health care needs.
Bureau of Maternal and Child Health, Utah Department of Health
*Los coordinadores de atención de habla hispana están disponibles.
Contact this group if/when: you need help getting a diagnosis for your child with special needs or have a diagnosis and need help identifying services for your child and need help getting insurance to cover the needed testing and services.
This multidisciplinary team of professionals works with families to coordinate care planning, provide education, and find resources in the community for children and youth with often unique and complex chronic health care needs. They are experienced in working with healthcare providers and insurance, including Medicaid.
There is no cost to connect with ISP. ISP has offices in Salt Lake City and Ogden. They also have traveling clinics throughout Utah, including St George, Vernal, Moab, Blanding, Richfield, and Price.
Utah Department of Health
801-584-8284 or 800-829-8200
The mission of CSHCN is to improve the health and quality of life for children with special health care needs, and their families, through early screening and detection, data integration, care coordination, education, intervention, and transition.
Contact this group if/when: you want to learn about newborn screening benefits, your doctor has told you that your child has a positive newborn screen result that requires additional testing, you want to learn more about the disorder your child is being tested for, you are having trouble seeing a specialist for follow-up testing or care, or you want to know how your hospital is performing compared to others.
For eligibility, call 866-435-7414. For general information call 801-538-6155.
Contact this group if/when: you need medical insurance coverage for your child with special health care needs or need help finding out if you qualify for a waiver.
Contact this group if/when: you would like to apply for a Medicaid Waiver.
The following Medicaid Waivers are available for children in Utah (click on the links for more information about that waiver):
- Community Supports Waiver for Individuals with Intellectual Disabilities or Other Related Conditions
- Medicaid Autism Waiver (eligibility based on parents’ income)
- Medically Complex Children’s Waiver (eligibility based on child’s income) 801-538-6578 or 800-662-9651 opt. 5
- Waiver for Technology Dependent Children (eligibility based on child’s income) 801-584-8270 or 800-829-8200
For questions about eligibility, contact Medicaid at 866-435-7414.
**For assistance in applying for a waiver, call the Utah Family Voices at 800-468-1160.
Go to the Portal if/when: you want to find information about
- caring for children with a variety of genetic conditions and related problems/disabilities
- resources to help children and families manage their conditions and thrive in society
- local and nationwide providers of services for children with special needs and their families
- how to collaborate with clinicians in the medical home model of care