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.
US Government Accountability Office
Autism Research and Support Services:
Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened
GAO-24-106446
Published: Feb 28, 2024. Publicly Released: Feb 28, 2024.The National Institutes of Health (NIH), within the Department of Health and Human Services (HHS), plays a key role in supporting the coordination of autism activities across 18 federal agencies, including the Departments of Defense and Education. For example, NIH manages the Interagency Autism Coordination Committee (IACC), a federal advisory committee composed of federal agencies and public members, through its Office of National Autism Coordination.
GAO found that NIH, in support of the IACC and the National Autism Coordinator, generally followed six of eight key collaboration practices that GAO's prior work has shown can be effective in enhancing and sustaining interagency collaborative efforts among federal entities. For example, NIH has taken steps to bridge organizational cultures by convening meetings of the IACC.
Assessment of the National Institutes of Health's (NIH) Role in Supporting Coordination of Federal Autism Activities Compared with Leading Practices for Interagency Coordination
GAO found NIH efforts to support interagency coordination partially followed the remaining two collaboration practices, including ensuring accountability. For example, although IACC strategic plans describe high-level progress made toward autism activities, they generally have not described how progress made relates to goals. NIH officials stated their progress tracking approach is driven by established processes, some of which are required by law. Establishing a clear process for tracking progress would help to determine progress toward IACC's goals and that interagency efforts are effective.
NIH helps ensure federally funded autism activities are not unnecessarily duplicative through various activities, such as holding meetings and through data and information reviews. However, GAO found the processes used by NIH's Office of National Autism Coordination were not documented. For example, NIH does not have written procedures describing the steps these staff should follow when reviewing federal autism research information for potential duplication. Although NIH officials stated that they believe current monitoring processes are sufficient, documenting these procedures will help ensure they are properly designed and executed to provide reasonable assurance that duplication is not occurring.
