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."
Steven M. Teles, “Kludgeocracy: The American Way of Policy,” New America Foundation, December 2012. Online: https://static.newamerica.org/attachments/4209-kludgeocracy-the-american-way-of-policy/Teles_Steven_Kludgeocracy_NAF_Dec2012.d8a805aa40e34bca9e2fecb018a3dcb0.pdf
Justin Schweitzer, Emily DiMatteo, and Nick Buffie at the Center for American Progress:
Just as it is expensive to be poor, it is expensive to be disabled. Households with disabled adults need 28 percent more income, on average, to achieve the same standard of living as adults without a disability. Moreover, the added costs of medicines and medical procedures, accessibility accommodations in homes and transportation, and many other regular expenses are exacerbated by the fact that disabled workers—if they are able to work and are employed—earn just 74 cents for every dollar earned by their nondisabled counterparts; Black and Hispanic disabled workers, in particular, earn 60 and 61 cents, respectively, for every dollar earned by nondisabled, full-time white workers. The extra cost of living for disabled people is often referred to as the “disability tax.”
Administrative burdens within programs intended to help people with disabilities add another dimension to the disability tax, often financially but also through additional drains on disabled people’s time, energy, and physical and mental well-being. Broadly speaking, experts have identified three categories of costs that administrative burdens impose:
The disability community often uses a metaphor called the “spoon theory,” coined by writer Christine Miserandino, to describe how people with chronic illness have limited energy to spend on daily tasks. This energy—symbolized by spoons—can vary on a given day depending on the individual’s medical condition and other variables. According to this metaphor, each activity uses up a spoon, forcing individuals to make difficult decisions about what activities, no matter how small, they can do. Specifically, administrative burdens often sap what little energy disabled people have, which can make it challenging for them to complete the rest of their daily responsibilities.
- Learning costs derive from the complexity of these systems and a lack of public education and awareness about a program’s existence, eligibility, benefits, and rules as well as how best to navigate the entire process.
- Psychological costs are the health impacts of the stress, stigma, and lack of autonomy that come with navigating these programs’ administrative processes.
- Compliance costs are all the time, energy, and money spent completing administrative requirements. These have also been referred to as the “time tax.”