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