Table of Contents
This guide's purpose is to assist 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.
You are a partner with your child’s doctor and health care team. In order to be effective, it is important that you learn about your child’s condition.
It’s important to find out what services and supports can best meet your child’s needs.
Wherever your journey begins, there are many programs described in this Navigation Guide that can assist you in caring for your child with special needs.
In Wisconsin, there are many ways to support families with children with special needs.
There are so many things to consider in transitioning to adulthood: health care, employment, education, housing, decision making, are just a few.
Children develop skills in playing, learning, speaking, moving and interacting with others. When a child does not gain skills at a particular age or acquires skills much later than their same-age peers, it is called a developmental delay.
Children and youth with special health care needs often require educational support.
The Children and Youth with Special Health Care Needs Southern Regional Center is supported by the Wisconsin Department of Health Services, Division of Public Health, Children and Youth with Special Health Care Needs Program with funding from the Maternal and Child Health Title V Services Block Grant number B04MC21385. The original publication (2011) was supported by funding from the U.S. Health Resources and Services Administration, Maternal and Child Health Bureau, through grant number H6MMC11063, Wisconsin State Implementation Grants for Improving Services for Children and Youth with ASD.
The Waisman Center, at the University of Wisconsin–Madison, is dedicated to the advancement of knowledge about human development, developmental disabilities and neurodegenerative diseases. It is one of 9 national centers that encompass both an Intellectual and Developmental Disabilities Research Center designated by the National Institute of Child Health and Human Development, and a University Center for Excellence in Developmental Disabilities (UCEDD) designated by the Administration on Developmental Disabilities.
We are grateful to the members of the Guide Workgroup and the Review Committee who provided invaluable feedback and suggestions. Thank you to the Community Systems Practice Group, Community of Practice on Autism Spectrum Disorder and other Developmental Disabilities, and to the Children and Youth with Special Health Care Needs Network for supporting the development of this Navigation Guide and for their dedication to getting timely and accurate information into the hands of families.
The 2011 guide was written and compiled by Lynn Renner and Joanne Juhnke, edited by Amy Whitehead, Sharon Fleischfresser, and Tim Markle. Subsequent updates by Lynn Havemann, Lisa Koob, Rachael Kramer, Amy Lyle, Liz Hecht, Stacy McCarthy Myers, Sonja Oetzel, Meredith Vitaioli and Tim Markle. The original document was designed by Allison Gritton. Subsequent formatting and design
by Cheri Sanders.
Thank you to the following organizations for their assistance:
- ABC for Health
- Autism Society of Southeastern Wisconsin
- Autism Society of Greater Wisconsin
- Family Voices of Wisconsin
- Parent to Parent of Wisconsin
- Regional Centers for Children and Youth with Special Health Care Needs
- Well Badger Resource Center
- Wisconsin Division of Health Services, Department of Public Health
- Wisconsin Department of Public Instruction, Division for Learning Support
- Wisconsin Family Ties
- Who are Children and Youth with Special Health Care Needs (CYSHCN)?
Anyone from birth to age 21 with a long term physical, developmental, behavioral or emotional illness or condition.
- Asthma, diabetes, sickle cell anemia, cystic fibrosis, childhood cancers and heart disease
- Attention Deficit Hyperactivity Disorder (ADHD) and mental health conditions
- Down syndrome, cerebral palsy and autism spectrum disorder
- Hearing and vision impairments
- Spina bifida, muscular dystrophy
- …and many other health conditions