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."
The U.S. Department of Health and Human Services (HHS) has released the 2022 Report to Congress on Supportive Services for Individuals with Autism. This report was requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96.
From pp. 76-77 of the report:
The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinatecare among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disabilityassociated life stressors may have to shoulder additional burden of navigating complicated gatekeeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,371 but tools designed specifically for families following a diagnosis of autism are currently limited.372 To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that anindividual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.373,374
