Mother laughing with her two children.

A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities

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Finding Your Way

Copyright 2011
UPDATED – 2013/2015/2017/2020

Finding Your Way: PDF

Three purple-outlined figures under purple stars and semi-circle. Southern Regional Center Children and Youth with Special Health Care Needs

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.

Five white overlapping circles on blue background. Waisman Center, University of Wisconsin-Madison

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.

Green shape of Wisconsin

Acknowledgements
We are grateful to the members of the Guide Workgroup and the Review Committee who provided invaluable feedback and suggestions. Thank you tot 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
Blonde boy blowing bubbles

DEFINITION

  • 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.
    Examples include:
  • 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