SW 644: Issues in Developmental Disabilities
The Regional Centers for Children and Youth
with Special Health Care Needs (CYSHCN)
Liz Hecht
Waisman Center for Excellence in Developmental
Disabilities (UCEDD) and Southern Center for Children and
Youth with Special Health Care Needs (CYSHCN)
The Children and Youth with Special Health
Care Needs Program is located within the
Wisconsin Department of Health Services,
Division of Public Health and is supported with
funding from the Maternal and Child Health
Title V Services Block Grant, Maternal and
Child Health Bureau, Health Resources and
Services Administration, U.S. Department of
Health and Human Services.
Children with Special Health
Care Needs: Who are they?
Children 0-21 years of age with a long
term, chronic illness or condition that is:
 Behavioral
 Physical
 Emotional
 Developmental
And requires services beyond a typically
developing child.
Examples include:
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AD/HD
Asthma
Autism
Behavioral/Emotional
Brain Injury
Cerebral Palsy
 Chromosomal
Abnormalities
 Depression/Anxiety
 Developmental
Delays
 Diabetes
 Fragile X
 Rare diseases
CYSHCN…
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1 out of every 12 children and youth
15% - 18% of total population
90% live longer than 20 years old
237,000 live in Wisconsin
The 2001 National Survey of Children with Special Health Care Needs
(SLAITS DATA) http://mchb.hrsa.gov/chscn/index.htm
CYSHCN Regional Centers
http://www.dhs.wisconsin.gov/health/children/resourcecenter/index.htm
Five Regional Centers for CYSHCN:
Northern Regional Center
https://www.co.marathon.wi.us/cyshcn.asp
Phone: 866-640-4106
Northeast Regional Center
https://www.northeastregionalcenter.org
Phone: 877-568-5205
Southeast Regional Center
https://www.southeastregionalcenter.org
Phone: 800-234-KIDS (5437)
Southern Regional Center
https://waisman.wisc.edu/cshcn
Phone: 800-532-3321
Western Regional Center
https://www.co.chippewa.wi.us.ccdph/CSHCN
Phone: 800-400-3678
6 Focus Areas
Reflecting CYSHCN National Performance Measures:
 Early and continuous developmental
screening
 Family participation in decision making at all
levels
 Comprehensive care with medical home
 Adequate public and/or private sector
insurance
 Organized service systems for easy use
 Youth transition initiatives
Information
 Identifying resources and supports
about such issues as:
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State and county programs
Diagnosis specific informaiton
Education/schools
Emotional supports
Home care
Recreation programs, etc.
Assistance
 Problem-solving with families based
on their questions
 Providing consultation about health
insurance/coverage
 Navigating programs/services
 Parent supports (groups, trainings,
matches, advocacy)
 Follow up to ensure need was
addressed adequately
Training and Technical Assistance
Examples:
 Roadmaps
 Community Resources
 Did You Know, Know You Know
 Youth Health Training
 Ages and Stages Questionnaire
 Topical, in response to requests
 Guardianship, Medicaid (HCOS), Diabetes
CYSHCN “Hubs of Expertise”
Purpose: to support efforts to meet the needs of CYSHCN
outcomes
 Family Health Leadership: Family Voices of Wisconsin,
Parent to Parent of Wisconsin
 Medical Home: Northeast Regional Center for CYSHCN,
Children’s Hospital of Wisconsin-Fox Valley
 Access/Health Benefits: ABC for Health, Inc.
 Youth Health Transitions: UW-Department of
Pediatrics, American Family Children’s Hospital
Wisconsin Statewide Medical Home Initiative
(WISMHI)
Promoting medical home with primary care providers and
families
 Outreaches to primary care providers and families to
promote Medical Home implementation
 Provides training and technical assistance in early
identification including developmental screening using
standardized tools
 Establishes a cadre of Medical Home Champions in
partnership with professional organizations
For more information
Christine Breuing, MS, Program Administrator
920-969-5330
cbrenig@chw.org
Family Health Leadership Hub:
Family Voices of Wisconsin
 Supports parents of diverse populations as
leaders
 Ensures the inclusion of a “family voice” in
public policy and system change
 Increases access to information so that families
can be effective “navigators” of their care
For more information:
Barbara Katz, Co-Director
barb@fvowi.org
608-233-3726
http://www.fvowi.org
Family Health Leadership Hub:
Parent to Parent Wisconsin
 Matches families to trained volunteer
parents and to other support
opportunities
 Connects parents who participate in the
program by listserv
For more information
Robin Mathea, Director
rmathea@chw.org
715-361-2934
www.p3pwi.org
Access and Health Benefits Hub
 Provides training and education to Regional
Centers for CYSHCN and other CYSHCN
partners regarding health benefits
 Provides direct health benefits counseling
to under and un-insured individuals
For more information
Bobby Peterson, Project Director
bobbyp@safetyweb.org
608-261-6939 ext. 201
www.safetyweb.org
Youth Health Transition Hub
 Establishes a Transition to Adult Health Care
Interdisciplinary Work Group
 Identifies model transition activities and
materials available
 Creates toolkit of most effective materials
 Convenes a statewide summit with national
experts on youth health transition
 Partners with the Community on Transition
For more information:
Kristin McArdle
kmcardle@uwhealth.org
608-890-7990
Presenter contact information
Elizabeth Hecht
Waisman Resource Center
Southern Regional Center for CYSHCN
hecht@waisman.wisc.edu
Southern Regional Center for CYSHCN at the
Waisman Center
800-532-3321
608-265-8610
See Transcript for Biographical Information