The concept of the autism spectrum is new and state agencies have not yet caught up with changes in diagnoses, prevalence, or the need for services by individuals with autism spectrum disorders. Asperger’s has only been recognized in the United States for about two decades and diagnosis for all spectrum disorders remains more of an art than a science because diagnosis is based on observation and history rather than medical tests. Traditionally many individuals with autism spectrum disorders have been diagnosed with mental retardation, schizophrenia, depression, ADHD or other things, so when they were served it was frequently because of the diagnosis of mental retardation or mental illness and services were not developed based on the underlying autism disorder. Further, the diagnosis of full scale autism was considered rare. Although there are pockets of services across the country, including in Delaware, state agencies historically provide services to very specific populations (cognitive impairments, traditional developmental disabilities, mental illness) or for very specific services (employment). Adults must be eligible for services and even when eligible, may receive services only when they are available. This is fundamentally different than educational services which are an entitlement and legally must be provided whether readily available or not.
1.There is little to no funding available to support this target population.
Funding for disabilities services is a complex combination of federal, Medicaid, Medicaid waiver, and state funds that are awarded to state agencies such as the Division of Developmental Disabilities (DDDS), the Division of Vocational Rehabilitation (DVR) and the Division of Substance Abuse and Mental Health (DSAMH) for the delivery of services. Typically, states provide some services directly, and purchase other services from community providers through contracts, grants, and fees for service. As the deinstitutionalization movement has grown and service trends have changed, state agencies increasingly purchase primary services from community providers.
2.Funding mechanisms in place do not adequately address the needs of individuals on the spectrum.
Medicaid waiver funding does not provide the ongoing therapies that adults with autism require (behavioral, speech, sensory), so the waiver either needs to be amended or there must be an alternative source to provide those needed supports.
There is no additional funding to support adults with Asperger’s Disorder.
The ICAP is the assessment tool that DDDS has adopted; however, it was not normed on individuals with autism nor does it capture some of their needs. There must be a dialogue about using an additional tool or finding a way to assess the needs that are not currently assessed. One recommendation is to have a dialogue with the ICAP developer to see if he can do further research to amend the tool.
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