Afflicting the Afflicted

Like Laura at 11D, I've been following the heartbreaking series on the horrifying gaps in care for the developmentally disabled in New York.  Abuse and neglect seem to be common even though the state spends a huge amount of money on its facilities.  The latest article involves a boy who was killed by an attendant.  The attendant's excuse: he'd worked 197 hours over 15 days. That's a lot.  But I once went an entire month sleeping 2-4 hours a night, and managed not to kill anyone, despite some users who richly deserved it.  So my sympathy is limited.

Laura states the obvious:

In the past year, I've visited some state-run homes for the elderly. My mom's friends are growing old and I sometimes drive my mom to these homes for visits. Old people can be annoying, too. Crotechy, delusional, and in pain. I've seen rows of over-medicated people propped up in wheel chairs in the hallway of these elder homes.

There has to be more oversight of these institutions. Staff members should not be allowed to take on double shifts. No one with a criminal record should be allowed to work in these institutions. Residents should not be over medicated, though I have no clue how that would be determined. Staff members should rotate their responsibilities between patient care and non-patient care to prevent burn out. Cameras could be installed for off-site monitoring.

And yet, the obvious is not so easy to achieve.  Read the resumes of the people in the stories: most of them are dropouts, many of them have criminal records.  The people who are taking these jobs are the people who have no other options.  I doubt the state agency in charge of these homes wants to hire people who have criminal records and a history of being fired from other places.  Maybe it's sheer malfeasance, but the more parsimonious explanation is that they can't find anyone else willing to do this work.  Working with the developmentally disabled is emotionally and physically difficult, and not that many people feel called to do it.  It's hard to attract people who have other choices. Monitoring won't help if there's no one to replace an abusive attendant on night call.

They could, of course, pay them much more.  But at a guess, labor is the largest cost of these facilities--it certainly is for nursing homes, where my understanding is that it accounts for 60-70% of total costs.  Doubling or tripling wages, which might well be required to attract a sufficiently large pool of better applicants, would substantially raise the cost of caring for these vulnerable populations.  Where is that money coming from?  Budgets at this point are zero sum, so whose jobs or benefits will you cut to double spending on the elderly and the developmentally disabled?

I'm not saying we shouldn't pay people more to work with the developmentally disabled; in fact, this is the sort of thing I agree the government should do, and spend as much as is needed to ensure adequate care.  But we do not live in my ideal world, and I doubt many politicians are going to shaft the firefighters to take care of people who will never vote.  

The elderly are a harder question, because there are just so many of them.  We can't simply keep spending ever-more money on nursing homes, unless we're willing to give up entirely on providing health care for the poor, and simply use the entire Medicaid budget for nursing home care.  But high-quality nursing home care is even more expensive than the tens of thousands of dollars we already pay.  Active, engaged patients are patients who have to be watched to see that they don't fall, or choke, or otherwise die from something the nursing home could have prevented.  They have to be provided with some sort of activities.  They make more demands on the staff.

When you see some unconscionable abuse and ask "Why?" the answer is usually green, and it folds.  Sometimes it's personal venality.  But sometimes policymakers are just trapped in a web of very bad choices: limited resources and unlimited wants.

We give short shrift to these sorts of decisions when we talk about health care cost control.  We'd like to believe that it's all life-saving decisions or unnecessary back surgery.  But often it's these sorts of ugly tradeoffs: do we want to spend huge sums on high-quality 24-hour care for needy and vulnerable populations?  Or do we want to warehouse them at minimal expense and maybe have some money left over for public libraries and environmental cleanup?  It's an especially hard question because medicating these patients can often feel, to us, like an improvement in quality of life--they're not agitated, they're not breaking hips or banging their heads on things.  It's easy to convince ourselves that we're doing it for them.

Creating a better quality of life for elderly and disabled patients who frequently can't speak for themselves will not show up in our mortality statistics.  It probably won't make them measurably healthier.  It will just cost a lot of money.