Access to Quality Services for Individuals with ASD: Challenges and Potential Solutions

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. TAP Training Centers • University of Illinois-Chicago • Southern Illinois University • The Hope Institute for Children and Families • Illinois State University • University of Illinois at Urbana-Champaign TAP Service Centers • 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. TAP Outreach Centers • Easter Seals LaSalle and Bureau County • Illinois Center for Autism TAP Collaborative Partners • 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

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