Utilization of a Medicaid-Funded Intervention for Children With Autism

Among children with autism spectrum disorders, participation in intensive behavioral intervention for 20 to 40 hours per week can significantly improve their developmental prognosis ( 1, 2 ). However, such intervention is prohibitively expensive for most families, costing an estimated $41,295 per year for full-time intervention ( 3 ). Public assistance to these families is limited, qualified providers are not widely available, and debate over best practices abounds ( 4 ). As of early 2007, Wisconsin was one of four states (also including Colorado, Maryland, and Indiana) with Medicaid home- and community-based services waivers specifically designed to help families pay for intensive behavioral intervention for children with autism ( 5 ). Total program expenditures in Wisconsin were $31.8 million in 2001–2002, averaging approximately $30,000 per child ( 6 ). Several other states are considering applying for an autism waiver or already have an application under review. Understanding Wisconsin's experience can inform policy makers considering similar measures in other states.

Wisconsin's Medicaid program for intensive intervention underwent a major change on January 1, 2004, when funding was transferred from the state-administered Early and Periodic Screening, Diagnosis, and Treatment program (EPSDT) to a county-managed home- and community-based services waiver. Throughout this period, enrolled families were not necessarily below poverty levels. Most families became eligible via the state's Medicaid TEFRA (Tax Equity and Financial Responsibility Act) plan. TEFRA plans allow states to use Medicaid funds to aid nonpoor families if the child is at high risk of institutionalization and the cost required to provide care within the home is equivalent to or less than institutional alternatives ( 7 ).

A proposal in early 2003 to no longer use EPSDT funds for autism intervention was driven by a directive from the federal Centers for Medicare and Medicaid Services (CMS), which stated that the services were habilitative in nature, not rehabilitative as permitted under Medicaid fee for service. The state initially understood the CMS directive to mean that these services could not be covered by Medicaid, and elimination of the funding was proposed in the state budget process. Legislators and administrators were also concerned about rapidly growing program costs and anecdotes of disproportionate utilization by affluent white families even though the prevalence of autism does not vary by race or socioeconomic status ( 8 ). Creating a plan that would provide coverage by a Medicaid home- and community-based services waiver emerged as a solution for several reasons. CMS allows reimbursement for habilitative services under a waiver. With its ability to restrict total enrollment, a waiver can more easily contain program costs. Waiver support could be managed at the county level (families applied directly to the state under the EPSDT program), thereby increasing the geographic reach and accessibility to families in underserved communities and, in turn, decreasing demographic disparities.

We examined utilization patterns of Wisconsin's Medicaid benefit for intensive behavioral intervention for children with autism by answering the following question: how did enrollees' demographic characteristics compare with those of all families statewide before and after the transition to the home- and community-based services waiver on January 1, 2004? We analyzed data from three sources: state Medicaid administrative records from 2000–2006, geocoded enrollee demographic characteristics, and decennial census data.