Uncertainty and complexity are major themes of The Politics of Autism.
Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."
[In] the U.S., IPS {Individualized Placement and Support] traditionally is delivered within states' mental health versus DD service systems, and this raises important questions related to its implementation with fidelity in autistic individuals served by the DD system. First, we are finding that in the California system of Regional Centers (state centers to provide services for people with disabilities), a single service coordinator takes responsibility for all service coordination (e.g., housing, independent living, transportation and mental health) in addition to supported employment for their large caseloads. Service delivery in general may be less integrated than it is in the mental health system, where it is customary for large teams working with the client on their employment, independent living, mental health, and general case coordination, to meet regularly to discuss client services. This is likely because in the mental health system, employment is considered a critical component of mental health. Employment is not at the core of what Regional Center coordinators do, and they may be unable to even stay abreast of all the employment programs and services available to their clients, given their many responsibilities. It also bears mention that, the improved integration of vocational and mental health services for autistic workers could be very useful given the high percentage of autistic individuals with mental health issues (Rast et al., 2021).
Surprisingly, upon initiating the Project we anticipated that adapting IPS for the autistic adults would be our largest challenge. Instead, we are finding that service system issues are more critical and although service systems differ by county, state, and locality, we believe that integration issues are common to them all. While both efforts may be costly and require systems change, as stated in the opening section of this Commentary, helping persons with autism to achieve lasting CIE is perhaps the most cost-effective, and socially beneficial way to improve outcomes for them, so it remains a worthy goal with potential synergistic outcomes. It is still early days, but we are hopeful that we are building a partnership within our local DD service community that can help break down barriers between agencies, engage in coordinated problem solving, and think creatively about resource and funding streams and thereby co-create a more integrated, comprehensive, and responsive supported employment system for all California adults.
