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
• 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)
• 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
• 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
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
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
Solution Matrix
– Public options• Waiver• General Medicaid• Early Intervention• Educational Services
– Private options• Insurance• Private Pay
– Network support• Funding• Coordinated service
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
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
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
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
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
Resource Materials
• TAP Consensus for Autism
• Fee Schedule
• Sliding Fee Scale
• Illinois insurance mandate briefing
• Illinois CHBS Waiver briefing
• Illinois CHBS Waiver application