1. Access to Quality Services for Individuals with ASD: Challenges and Potential Solutions Georgia Winson, M.S., LCPC Chief Administrator The Autism Program of Illinois Hope Institute for Children and Families MCHB-State Implementation Grantee

2. Nonprofit organization providing educational, residential & healthcare services to children ages 5-21 with developmental disabilities The Hope School founded by Dr. Charles & Mrs. Jordan in 1957 as one-room schoolhouse Today encompasses 6+ programs and initiatives to impact 23,000+ children and families including: The Hope School Learning Center The Hope Center for Residential Services The Hope Health and Wellness Center Noll Medical Pavilion The Autism Program of Illinois (TAP)

3. largest statewide network of services for Autism Spectrum Disorders in nation impacts more than 16,000+ children and families across Illinois offers diagnosis, treatment, training, consultation, resources and community planning trains educators, links healthcare providers and helps families affected with an ASD more than 30+ network partners across the state

4. University of Illinois-Chicago Southern Illinois University The Hope Institute for Children and Families Illinois State University University of Illinois at Urbana-Champaign Charleston Transitional Facility Easter Seals Children’s Development Center Rockford Easter Seals Metro Chicago Easter Seals Peoria-Bloomington Easter Seals Southwestern Illinois Kreider Services, Inc. Trinity Services, Inc. Easter Seals LaSalle and Bureau County Illinois Center for Autism American Academy of Pediatrics – Illinois Chapter ARC of Illinois Developmental Disability Services Metro East Foundation for Autism Today & Tomorrow (FASTT) Have Dreams Illinois Early Childhood Intervention Clearinghouse Little Friends Center for Autism TAP Training Centers TAP Service Centers TAP Outreach Centers TAP Collaborative Partners

5. Autism: Challenges to Access Prevalence: 1 in 100-estimated 29,000 school age children in Illinois Paucity of: –Trained workers across all disciplines –Community-based programs –Appropriate educational supports –Research on evidence-based practice –Linkage across central service sectors –Public and private funding Pervasive nature of ASD –Across functional domains –Across the lifespan –Across environments –Across all socio-economic, racial and ethnic divides Intensity of service

6. Statistics to Service in Illinois Statistics –Children with ASD vs. CSHCN: equal percentage uninsured –Children with ASD vs. CSHCN: lower percent have adequate coverage (parent report) –Children with ASD vs. CSHCN: lower percent adequately covered (parent perception) –Children with ASD vs. CSHCN: greater percent out of pocket expense –Children with ASD vs. CSHCN: greater impact on employment-greater reliance on public insurance Impact on Service –Workforce deficits –Proliferation of “easy” solutions –Decreased access to quality services and providers

7. Solution Matrix –Public options Waiver General Medicaid Early Intervention Educational Services –Private options Insurance Private Pay –Network support Funding Coordinated service

8. Solutions: Public Options Public Options-cross cutting issue –Funding Streams Adaptive Functioning vs. Dx Waiver –ASD vs DD –Wide range of service options –High cost-small number served –Federal funding to support BCBAs –Rule changes to allow reimbursement of BCBAs through federally funded Early Intervention General Medicaid –Limited provider types –Limited eligibility Early Intervention –Broaden provider types Education –Federal funding for BCBAs

9. Legislative Solutions Legislative solutions –Federal funding to support BCBAs: Opposition of other provider groups –Rule changes to allow reimbursement of BCBAs through federally funded Early Intervention: Education regarding effective use of BCBAs within Early Intervention –Insurance Mandates –Legislation to Support Habilitative Services

10. Solutions: Private Options Insurance –Illinois insurance mandate –Caps on service –Self insured not covered –Threat posed by “evidence-based” practice Private Pay –Not possible for most families –Qualified workers not readily available

11. Solutions: Networks Harness existing system Necessity for and utilization of multiple funding streams Workforce development Unity of parents and providers Equal access Standards for service

12. Making It Happen Multi-faceted Solution Necessary Policy and rule changes Consensus Coordinated Action –Alignment with existing funding streams –Review of funding mix –Development of fee schedules and sliding fee options –Development of workforce development programs –Ongoing quality improvement

13. Resource Materials TAP Consensus for Autism Fee Schedule Sliding Fee Scale Illinois insurance mandate briefing Illinois CHBS Waiver briefing Illinois CHBS Waiver application