TESTIMONY OF AUTISM SPEAKS BEFORE THE HEALTH SUBCOMMITTEE OF THE U.S HOUSE OF REPRESENTATIVES COMMITTEE ON ENERGY AND COMMERCE

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1 TESTIMONY OF AUTISM SPEAKS BEFORE THE HEALTH SUBCOMMITTEE OF THE U.S HOUSE OF REPRESENTATIVES COMMITTEE ON ENERGY AND COMMERCE HELPING FAMILIES WITH NEEDED CARE: MEDICAID S CRITICAL ROLE FOR AMERICANS WITH DISABILITIES JANUARY 16, 2008 Autism Speaks greatly appreciates the opportunity to present this written testimony to the Subcommittee. Medicaid plays an extremely important role in the lives of the many thousands of American families that are affected by autism. Summary: Both by design and default, Medicaid plays a critical role in the lives of persons with autism. The Centers for Medicare & Medicaid Services ( CMS ) has been pursuing policies contrary to the needs of persons with autism. Rather than limit autism services in the schools and out, the CMS should support successful state service models.

2 2 Autism Speaks, the world s largest autism advocacy organization, welcomes the opportunity to offer written testimony on Medicaid s critical role for Americans with autism. A complex neurobiological disorder that typically lasts throughout a person's lifetime, autism is part of a group of disorders known as autism spectrum disorders. Today, one in one hundred and fifty individuals is diagnosed with an autism spectrum disorder. Autism spectrum disorders are more common than pediatric cancer, diabetes, and AIDS combined. They occur in all racial, ethnic, and social groups and are four times more likely to strike boys than girls. Autism spectrum disorders impair a person's ability to communicate and relate to others and are associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Autism spectrum disorders vary greatly in severity. Some people with autism spectrum disorders need little or no support. Others need a great deal of help to live safely in their communities. Private health insurance often fails to provide the assistance needed by people with autism spectrum disorders. Some private health insurance policies even contain blanket exclusions for the treatment of autism. Even when private health insurance provides some benefits, it almost always denies benefits for the behavioral treatments long established as effective. Autism Speaks is advocating for change in state laws that allow insurers to deny or severely limit coverage for autism spectrum disorders. For instance, Autism Speaks strongly supports Pennsylvania House Bill 1150, which would require private health insurers to provide medically necessary coverage. In Pennsylvania and elsewhere, the inadequacy of private health insurance coverage has focused attention on the critical role of Medicaid in serving persons with autism spectrum disorders.

3 3 Medicaid spending for services for people with autism spectrum disorders and other developmental disabilities has increased substantially in recent years. Children with disabilities comprise a significant portion of all Medicaid recipients, and an even more significant portion of disabled children use the Medicaid system as their primary insurer. While the number of persons with autism spectrum disorders served by Medicaid is not known, studies suggest that the prevalence of autism spectrum disorders among Medicaid enrollees has increased over time. This rise parallels disturbing trends in school census and epidemiological data of ever greater numbers of affected children. Medicaid serves persons with autism spectrum disorders through state plan services to low-income persons and persons with disabilities, and through specialized waiver programs that serve targeted populations without regard to the income of anyone other than the individual served. Five states have waivers targeted solely at persons with autism spectrum disorders. One such state is Maryland, the first state in the nation to target Medicaid services specifically to children with autism spectrum disorders. Maryland s waiver provides intensive individual support services, after-school activities, respite care, supported employment, case management and other services to the most severely affected children in the state. Like all waiver programs, Maryland s program is capped. Approximately nine hundred children are served by the waiver. Another twenty-three hundred children are on a waiting list. Unless the number of waiver slots is expanded, these children may wait years for services. In contrast to waiver services, Medicaid plan services are not limited to a fixed number of slots and can be delivered in schools. The Medicare Catastrophic Coverage Act of 1988 allows school districts to receive payment from Medicaid for health services listed in an individualized education program that are delivered to Medicaid-eligible children. When necessary services are

4 4 covered by a state Medicaid program, the financial responsibility of the state Medicaid agency precedes that of the school system. Recent actions by the Centers for Medicare & Medicaid Services call into question the agency s commitment to fulfill that responsibility. For instance, proposed agency rules would deny federal financial participation for habilitation services, as well as for rehabilitation services furnished as intrinsic elements of educational programs. Autism Speaks and other disability groups have been actively engaged in this rulemaking, and have submitted comments to CMS criticizing the proposed rules. Although the Medicare, Medicaid, and SCHIP Extension Act of 2007 blocks them from being implemented before June 30, 2008, the proposed rules are especially worrisome in light of the cutoff in 2007 of federal financial participation for applied behavioral therapy services for Medicaid-eligible South Carolina school children with autism spectrum disorders. Autism Speaks understands that CMS acted in part because services were limited to school settings. The cutoff led South Carolina to discontinue funding services for almost 3,000 children and brought to an end a successful eight-year old state program. Autism Speaks is also concerned about interim final regulations on optional state plan case management services. These regulations, which become effective on March 3, 2008, would limit claims for federal financial participation for case management services. This could only exacerbate the problems school and public health systems face in financing services for children with autism spectrum disorders. The Maryland State Department of Education, for instance, estimates that the new regulations will reduce federal financial participation for autism waiver services by $700,000.

5 5 Autism Speaks fears that restrictive CMS policy will chill state efforts to provide appropriate services to persons with autism spectrum disorders. We worry about a bureaucratic Alphonse and Gaston routine, with the federal government looking to the states to fund services, the states looking to the federal government, and persons with autism spectrum disorders suffering in consequence. There is no real economy in engendering service cutbacks to a vulnerable and growing population of disabled Americans. Finally, Autism Speaks urges the Subcommittee to act on H.R. 1881, the Expanding the Promise for Individuals with Autism Act of 2007 (the EPIAA ). This legislation authorizes funding for a comprehensive set of federal-state partnerships to provide evidence-based treatments, interventions, and services for those with autism spectrum disorders. H.R will fill gaps in Medicaid services and provide help to those not eligible for Medicaid. The EPIAA is an appropriate and necessary follow-up to the Committee s profound work in 2006 on the Combating Autism Act, for which the autism community will be forever grateful. Again, Autism Speaks greatly appreciates this opportunity to present its views, and stands ready to assist the Subcommittee in any way it can to ensure that American families receive all necessary assistance in dealing with autism spectrum disorders.