This isn't precisely what I was looking for, altho it is an example of it.
We are increasingly assessing the quality of health care on a "report card basis". Doctors in particular are pressured to provide care according to "best practice" in particular things that can be enumerated and/or measured. Thus, did you screen for colon cancer when the person turned 50? Did you you prescribe a statin if blood work came back with certain numbers? Etc. As we get better at not killing off (on purpose or inadvertently or through accident or neglect or criminalizing or whatever) people who had mental illness (whether a developmental delay or, as in the study referred to at the link above, schizophrenia or something else), there are more people who are adults eligible for screening services but whose caretakers (parents, generally) have died. Their status may be very ambiguous (receiving social service disability, say, but living somewhat independently) and depending on the kind and degree of impairment, they may not be able to give informed consent to medical procedures such as a colonoscopy. And there might not be anyone who can give consent on their behalf.
This is a problem that is very real, and really distressing to health care providers (I know; I talked to one of them on Sunday about this topic). And we're still at the nag-at-the-doctor-to-do-more-screening stage.
One of the most basic rules of medical care is you don't do testing that you are not prepared to take action on. You just get all the risks of the test without any possible benefit. When I consider what went into convincing my walking partner to get a haircut, and the preparation necessary for her to get her wisdom teeth pulled (years, in both cases), I cannot _imagine_ the rationale for trying to line up a colonoscopy for everyone similarly cognitively and emotionally impaired. It just is not worth it. For one thing, you'd never shepherd the person through colon cancer treatment if the test came up positive (which it pretty much won't, and even if it did, we're probably overtreating anyway). You'd just wind up more trials like the obscenity recently perpetrated against the mother who declined to inflict leukemia treatment on her autistic son.
We can do better than this. Fixing the things we think we can fix is NOT a valid "ideal", certainly not valid enough to force it on everyone without contemplating the variability of costs. We need a better model of health care.