1. 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)

2. 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.

3. 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.

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

5. 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) http://mchb.hrsa.gov/chscn/index.htm

6. 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

7. 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

8. 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.

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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