Children and Youth with Special Health Care Needs Program

Promoting quality care for children and youth with special health care needs in Wisconsin.

Program Goal To assure that children and youth with special health care needs are:  identified early, receive high quality coordinated care, and their families receive 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 (exit DHS):

• English: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities (exit DHS; PDF, 10  MB)

• Español: Una guía de navegación para las familias de Wisconsin con niños y jóvenes con necesidades especiales de atención de salud y discapacidades (exit DHS; PDF, 10.8 MB)

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 200,000 or 15.5% of Wisconsin children have a special health care need, of which: 

• Over 1 in 6 children missed 11 or more days of school due to illness
• Over 1 in 9 families reports spending 11 or more hours each week providing or coordinating their child's care
• Over one third of families currently insured report their insurance is inadequate
• Over 1 in 4 families reports spending $1,000 or more each year for out of pocket medical expenses.

Source: Child and Adolescent Health Measurement Initiative. 2009/2010 National Survey of Children with Special Health Needs, Data Resource Center for Child and Adolescent Health website.

For more Wisconsin specific data on CYSHCN, go to: SLAITS-CYSHCN Summary Report (publication date: 01/09) (PDF, 94 KB)

2012 Maternal and Child Health Bureau Core Outcomes

The Program advances the 2012 National Performance Outcomes, strengthening:

• Parent Leadership
• Medical Homes
• Health Insurance Coverage
• Screening and Identification
• Coordinated Services
• Transition to Adult Life

The Wisconsin Department of Health Services, Division of Public Health, Bureau of Family and Community Health, 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 Child Health Bureau website.. (exit DHS)

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Last Updated: March 12, 2013