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:  AD/HD  Asthma  Autism  Behavioral/Emotional  Brain Injury  Cerebral Palsy  Chromosomal Abnormalities  Depression/Anxiety  Developmental Delays  Diabetes  Fragile X  Rare diseases

CYSHCN…  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)

CYSHCN Regional Centers Five Regional Centers for CYSHCN: Northern Regional Center Phone: Northeast Regional Center Phone: Southeast Regional Center Phone: KIDS (5437) Southern Regional Center Phone: Western Regional Center Phone:

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: 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

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

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

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 ext

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

Presenter contact information Elizabeth Hecht Waisman Resource Center Southern Regional Center for CYSHCN Southern Regional Center for CYSHCN at the Waisman Center See Transcript for Biographical Information