Children with special health care needs (CSHCN) are defined by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB) as:
“…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1
This definition is broad and inclusive, and it emphasizes the characteristics held in common by children with a wide range of diagnoses.
Following are resources that may prove useful as families, youth and individuals with disabilities, and professionals work together to address the unique needs of CSHCN.
Family to Family Health Information Center
Utah Family Voices is Utah’s Family to Family Health Information and Education Center (F2FHIC). The overall purpose of Utah Family Voices at the Utah Parent Center has been to improve access to quality care and to provide support for children and their families with special health care needs in their communities by empowering families with information and advocacy.
This intensified focus began in 2004 when the Center began assisting families to ensure that they can make informed choices about their living environment, service providers, types of supports and the manner in which supports are provided. This is accomplished by providing education, information and training to families. These activities have been conducted through a partnership with Utah Family Voices (UFV). Through the UFV project, we collaborate with community, state and national agencies and systems level organizations that serve children with special health care needs and their families to promote the philosophy of individual- and family-directed supports.
Utah Family Voices Family to Family Health Information Center is dedicated to improving access to quality care and to providing support for children with special health care needs and their families in their community by empowering families with information and advocacy. They have created a series of information sheets to help you and your family! Contact the Utah Family Voices staff by calling 801-272-1068 for copies of the information sheets and information on CSHCN, health, the following topics and MUCH more:
- Alternative Therapies
- Applying for SSI on Behalf of a Child with Special Needs
- Caring for the Caregiver
- Depression and Anxiety
- Disability and Air Travel
- Genetic Counseling
- Medicaid D Program
- Menstrual Management
- Oral Health Care
- School Health Care Plan
- Understanding Puberty
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 visiting this site, 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.
The Children with Special Health Care Needs Bureau (CSHCN) is a part of the Utah Department of Health, Division of Family Health and Preparedness and is part of the federally funded Maternal Child Health (Title V) agency for Utah.
CSHCN oversees many programs for children with special health care needs. Each is unique in its services for children and youth with special health care needs.
CSHCN provides and promotes family-centered, coordinated care and facilitates the development of community-based systems for these children and their families.
CSHCN activities focus on reduction of preventable death, disability and illness in children due to chronic and disabling conditions.
The goals include:
- All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home.
- All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
- All children will be screened early and continuously for special health care needs.
- Services for children with special health care needs and their families will be organized in ways that families can use them easily.
- Families of children with special health care needs will partner in decision making at all levels, and will be satisfied with the services they receive.
- All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.
Services and Programs include:
- Autism System Development
- Child Health Advanced Records Management (CHARM)
- Children’s Hearing Aid Program (CHAP)
- Critical Congenital Heart Defect (CCHD) Screening
- Cytomegalovirus (CMV) Public Health Initiative
- Early Hearing Detection and Intervention (EHDI)
- Fostering Healthy Children Program (FHCP)
- Integrated Services Program
- Kurt Oscarson Children’s Organ Transplant Fund
- Newborn Bloodspot (Heelstick) Screening Program
- Technology Dependent Waiver
- Utah Birth Defects Network (UBDN)
Utah Family Voices staff contributes content to and supports the Medical Home Portal.
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 (CYSHCN) as partners in the Medical Home model. The long-range goal is to improve outcomes for CYSHCN 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!
Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. They stay on top of public and private sector health care changes that affect our children and families through the collective efforts of our families: a volunteer Coordinator in every state; 10 Regional Coordinators; and a small staff working in several locations around the country. Together, they share the expertise and experiences of families from around the country with state and national policymakers, the media, health professionals, and other families. They work in public and private hospitals, public health programs, in state capitals, in Washington, DC, serving on boards and task forces, working in partnership with health professionals and policymakers, bringing the family perspective to policy discussions and decisions. There are almost 40,000 Family Voices members – families of children with special health needs and friends and professionals who know and love our children.
CHIP is a state health insurance plan for children. Many working Utah families who don’t have other health insurance may qualify for CHIP.
The Utah Medicaid program pays medical bills for people: who qualify for a category of Medicaid; [Categories are listed on the General Information page, under “Utah Medicaid Programs. Categories of Medicaid and who qualifies.]; who have low income or cannot afford the cost of health care; who have resources (assets) under the federal limit for the category of Medicaid. An individual must qualify each month for continued coverage. The monthly income standard varies between approximately 55% and 133% of the Federal Poverty Level, depending on category. A person whose income exceeds the monthly income limit may be considered for the Medically Needy program. This program, also referred to as the “spenddown” program, allows a person who is otherwise eligible either to pay “excess” monthly income to the State of Utah or to accept responsibility for a portion of their monthly medical bills.