Promoting quality care for children and youth with special health care needs in Wisconsin.
The Children and Youth with Special Health Care Needs (CYSHCN) program promotes quality care for children and youth with special health care needs in Wisconsin.
This booklet is an introduction for families and health care teams working together to improve care for children and youth with special health care needs. This booklet contains tips from health care team members and family representative team members to help you and your team in your quality improvement work.
To assure that children and youth with special health care needs:
- Are identified early,
- Receive high quality coordinated care, and
- Receive, with their families, the supports they need.
The Children and Youth with Special Health Care Needs Program collaborates with national, state and community-based partners to link children to appropriate services, close service gaps, reduce duplication and develop policies to better serve families.
Finding Your Way: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities assists families who may have concerns or questions about their child's development or have recently received a diagnosis of a special health care need or disability. It provides brief descriptions of programs, services and systems of support and gives contact information and links to learn more about these and other resources.
English and Spanish versions of the Guide can be downloaded from the University of Wisconsin Waisman Center website:
English: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities (PDF)
Español: Una guía de navegación para las familias de Wisconsin con niños y jóvenes con necesidades especiales de atención de salud y discapacidades (PDF)
Who are Children and Youth with Special Health Care Needs?
Children and youth with special health care needs (CYSHCN) are defined by the 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."
The CYSHCN Program works to improve systems of care for anyone from birth through age 21 with a chronic physical, developmental, behavioral or emotional illness or condition. Some examples include ADHD, asthma, autism spectrum disorders, childhood cancers, cerebral palsy, deaf or blind, diabetes, Down syndrome, heart disease, and mental health conditions.
What is the impact on Wisconsin families?
Over 220, 000 or approximately 17.5% of Wisconsin children have a special health care need, of which:
- More than 1 in 9 children with special health care needs miss 11 or more days of school due to illness or injury.
- Over 1 in 6 families with a child with special health care needs have a family member leave a job, take a leave of absence, or reduce work hours because of their child’s health or health conditions.
- About 2 out of 5 families with a child with special health care needs, that are currently insured, have inadequate insurance.
- About 1 out 4 of families with a child with special health care needs spend $1,000 or more each year for out of pocket medical expenses.
Source: Child and Adolescent Health Measurement Initiative. 2017-2018 National Survey of Children’s Health, Data Resource Center for Child and Adolescent Health website.
For more data on CYSHCN, go to the Data Resource Center for Child and Adolescent Health, 2017-2018 National Survey of Children's Health.
The Wisconsin Department of Health Services, Division of Public Health, Bureau of Community Health Promotion, Family Health Section, Children and Youth with Special Health Care Needs Program is funded by the Maternal and Child Health Title V Services Block grant, Maternal and Child Health Bureau, Health Resources and Service Administration, US Department of Health and Human Services and other funding sources. For more information, visit the Maternal and Child Health Bureau website.
Wisconsin has five Regional Centers for Children and Youth with Special Health Care Needs that can help families get answers, find services, and connect with community resources. Their services are free and private.