Study of Adult Services by AspFI

View Phase One of Our Nation-Wide Policy Study

Download Phase Two, the Interview Phase, of Our Study:

Falling Through the Cracks: Services for "Higher-Functioning" Adults

Asperger Foundation International’s nation-wide study is the first of its kind to examine the availability of social services for adults on the higher-functioning end of the Autism spectrum throughout the United States. Each of the 50 states (and the District of Columbia) has complete discretion over which developmental disabilities are included in their service systems, even those states that receive federal funds to administer community-based services through Medicaid waiver programs. Similarly, some state mental health programs will allocate funds for some services for individuals with only diagnoses on the Autism spectrum, while others deny services to even developmentally disabled people with the same co-occurring mental illnesses that would make other consumers eligible. Even within the federal and local guidelines that do exist, there would seem to be such an undue amount of room for individual interpretation of policies at the regional offices, where eligibility determinations are actually made, that the unique needs of this population may go unaddressed.

Our study includes a survey of agencies – typically, the developmental disability, mental health, and vocational rehabilitation units – in each state, in which we interviewed representatives from developmental disabilities, mental health, and vocational rehabilitation agencies in all 50 states and the District of Columbia. We then used that data to create a questionnaire for affected individuals who have applied for services and their families, and to select a smaller number of representative states in which to conduct the survey in part two.

It is our hope that this study will make it easier for individuals and their families to understand if and where they are eligible for the services they need, as well as help state agencies understand what their colleagues are doing in other parts of the country to help the growing population of individuals on the Autism spectrum whose functioning skills do not match their intellectual levels and whose needs cannot be easily addressed by traditional mental retardation service models.