Children and Youth with Special Health Care Needs

Children and Youth with Special Health Care Needs (CYSHCN) is a program that promotes quality care for young people in Wisconsin. One in every five Wisconsin children has at least one special health care need. Estimates of children with special health care needs in Wisconsin are around 235,000.

Children and youth with special health care needs are those who have a chronic physical, developmental, behavioral, or emotional condition. They also require health and related services of a type of amount beyond that generally required. CYSHCN conditions include:

This definition is purposely broad, inclusive, and not condition specific. This is because the CYSHCN Program recognizes that all children and youth with special health care needs, regardless of their condition, require quality of care that includes:

• Early identification.
• High quality care that works together.
• Support within family environment.

CYSHCN works with national, state, and community partners. Together, they connect youth to the right services and close service gaps. They also help avoid repeat services and set up policies that better serve families.

Impact on Wisconsin families

CYSHCN serves Wisconsin families. In Wisconsin, over 220,000 kids (about 17.5%) have special heath care needs. Of these:

• More than 1 in 10 miss 11 or more days of school due to illness or injury.
• More than 1 in 6 families have a family member leave a job, take a leave of absence, or reduce work hours because of their child’s health.
• About 1 in 10 families that are currently insured have insurance that doesn’t meet their needs.
• About 1 in 5 families spend $1,000 or more each year for out-of-pocket medical expenses.

This information comes from the Child and Adolescent Health Measurement Initiative, 2020–2021 National Survey of Children’s Health. The Data Resource Center for Child and Adolescent Health has more data on CYSHCN.

National Standards for Systems of Care

There are National Standards for CYSHCN that support a comprehensive, coordinated, and family-centered systems of care for CYSHCN. In Wisconsin, we are focused on Youth Health Transition and Medical Home.

Youth Health Transition Initiative

Health transition is the change from pediatric to adult health care services. For children and youth with special health care needs, this change can be confusing and challenging for themselves and their families. Wisconsin works with the Youth Health Transition Initiative at the University of Wisconsin Waisman Center to improve the systems that serve youth with special health care needs while also preparing youth and their families with the knowledge and skills necessary to promote self-determination, wellness, and successful navigation of the adult service system.

Medical Home Initiative

The Wisconsin Medical Home Initiative is dedicated to promoting the concepts of medical home for primary care clinicians, families, and service providers throughout Wisconsin.

A medical home is a trusting partnership between families, their child(ren), and their pediatric primary health care team. A medical home means that your health care team:

• Knows your child’s health history
• Listens to your concerns and needs (as well as your child’s)
• Treats your child with compassion
• Has an understanding of their strengths
• Develops a care plan with you and your child when needed
• Respects and honors your culture and traditions

Your health care team can help you and your child access and coordinate specialty care, other health care and educational services, in and out of home care, family support, and other public/private community services that are important to the overall well-being of you and your child.

Resources

• CYSHCN Team Engagement for Quality Improvement: Welcome Booklet, P-02349 (PDF) —Introduces families and health care teams to CYSHCN. Find tips from health care team members and family representative team members. These can help with quality improvement work.
• (English version) Finding Your Way: A Navigation Guide for Wisconsin Families Who Have CYSHCN and Disabilities—Helps families who may have concerns or questions about their child’s development. They may have recently received a diagnosis of a special health care need or disability. Learn about programs, services, and systems of support. The guide also has contact details and links to other resources.
• (Spanish version) Encuentre su Camino: Una guía de orientación para las familias de Wisconsin que tienen niños y jóvenes con necesidades de atención médica especiales y discapacidades
• Well-Visit Planner: A great tool for your next visit with your child’s physician. In about 10 minutes or less you can get a personalized, printable Well-Visit Guide that you can present to your physician. The guide helps you remember the important issues you want to talk to your physician about and they can keep a copy in their file to do a check-in with you at your next visit.
• Providers and Teens Communicating for Health (PATCH)
• Wisconsin Integrated Transition Planning Project
• Youth Health Transition Initiative
• Got Transition

Who to contact for help

Select a link for more contact details:

• CYSHCN contacts—Find a list of program coordinators and specialists.
• Children’s Resource Centers—Find a Children’s Resource Center. Wisconsin has five centers. They can help families get answers, find services, and connect with community resources. Their services are free and private.
• Maternal and Child Health Bureau contacts—Get more information about CYSHCN program funding. Funds come from:
  • Maternal and Child Health Title V Services Block Grant.
  • Maternal and Child Health Bureau.
  • Health Resources and Service Administration.
  • U.S. Department of Health and Human Services.
  • Other funding sources.