1. SW 644: Issues in Developmental Disabilities Wisconsin Council on Children’s Long- Term Supports Building a Family Support System for Children and Youth with Disabilities and their Families Liz Hecht Waisman Center for Excellence in Developmental Disabilities (UCEDD) and Southern Center for Children and Youth with Special Health Care Needs (CYSHCN)

2. Children’s Long-Term Support Council The Council for Children with Long-Term Support Need (CCLTS) is charged with providing recommendations to the Secretary regarding services, supports, and other assistance that addresses the needs of children with long-term support needs and their families who want to live, learn and participate in all aspects of community life…  The needed infrastructures,  Accountability measures and mechanisms,  Financing systems,  Training programs and  Program design elements

3. Why is a Council important?  Allows families to contribute their expertise to the design, implementation and evaluation of systems of support  Assures dialogue between DHS and families, advocates, counties and providers

4. Our Vision A comprehensive and coordinated set of supports and services that are designed to ensure that children with disabilities and their families have access to a continuum of family-centered and directed resources, supports, services and other assistance.  Promotes family well-being, independence, productivity, participation and inclusion in the community  Promotes participation in a range of community activities  Provides access to information  Includes a partner who can help coordinate and access flexible supports and funding

5. A well coordinated system  The Medicaid Katie Beckett Program  The Family Support Program  The Community Options Program  The Children’s Long-Term Support (CLTS) Medicaid Waiver, including services under the CLTS Waiver for Intensive In-Home Treatment for children diagnosed with Autism

6. CCLTS Accomplishments  1999: Children’s committee Foundation for A System of Long-Term Support For Wisconsin Children and Families  2000-2003: Broad consensus for concepts from DFHS, families, counties and service providers DDES staff hired to work in the new Children’s section DOH CYSHCN Regional Centers created Coordination with Medicaid – dialogue Children’s committee meets quarterly “No Place Like Home” budget initiative ¾ million Family Care holds promise to end waiting list for eligible groups over 18  2004: Children’s Waivers roll out statewide

7. CCLTS Accomplishments  2005: Children’s Council appointed Waiting list budget initiative fails Funding for 500 children with autism passes Functional Screen rolls out statewide  2006: Waiting list initiative passes $4.6 million  2007: New funding to support transition, crisis and urgent needs Family Care has growing impact on county children’s service system  2008: COMPASS concepts developed by Council  2009:State Budget includes 1 of 3 elements of COMPASS Waiting list initiative passes $4.6 million  2010: COMPASS Threshold pilot 2 counties

8. CCLTS Accomplishments In 2000, 600 children were served in home and community-based waivers and 2500 with family supports; in 2011, 5000+ children and families received long-term support funding. In 2011, waiting lists for support dropped for the first time in 25 years.

10. COMPASS WISCONSIN: Support for Families and Children with Disabilities to pursue their hopes and dreams with assistance that is:  family designed and controlled; is individualized and seamless; last as long as is needed; and involves a variety of community partners. Information, Assistance and Eligibility Determination Outcomes-Based Planning and Implementation for Support to Families Funding for Services

11. Threshold provides a unified point of intake, application and eligibility determination for children’s long-term support (CLTS) services. Threshold serves families who:  Live in Racine, Walworth, Kenosha and Waukesha counties  Have children at home who have long-term support needs  wish to apply for CLTS services for their children including: Katie Beckett Program Family Support Program Community Options Program Chidlren’s Long-Term Support Medicaid Wavier – including in-home intensive treatment for children with autism

12. Current Challenges in Children’s System  Family Care restructuring has created many challenges  County funding and infrastructure are under intense pressure; Adding new children without needed infrastructure has resulted in a system that is shaky in its ability to maintain core CLTS values CLTS service processes are complicated and inefficient with rules, forms, & procedures resulting from multiple waivers and ways of matching funds.

13. Current Challenges in Children’s System  DHS has completed three biennial budgets without infrastructure funding.  Family Care continues to expand and has an impact on the infrastructure of more counties.  Concurrently, services for children with Autism diagnoses increase and the Insurance Mandate creates both opportunity as well as extensive staff resource demands.  CMS has increased scrutiny of waivers and has made new, costly demands on staff and infrastructure  This has created an increasingly fragile system, especially as it relates to infrastructure and promotion of family-centered, cost-effective approaches to service delivery

14. Why ADRCs and not Family Care?  Children have unique developmental needs that change rapidly  Supporting children requires coordination with multiple systems  Parents have a unique responsibility in the life of their minor child  ADRCs are struggling with economic and structural issues  All long-term support needs should be included in a children’s system including mental health  The CLTS-Functional Screen requires a unique set of skills and knowledge  We can build on what works

15. Contact Information: Elizabeth Hecht Council Chair hecht@waisman.wisc.edu 608-263-7148 See Transcript for Biographical Information