Map of life expectancy at birth from Global Education Project.

Thursday, January 22, 2015

Return of Bedlam?

I think you'll only be able to read the first 100 words, but that's okay, I'll tell you what Dominic Sisti and friends have to say in the new JAMA.

When I was a youth, we had a wonderful, progressive movement. We were going to end the warehousing of mentally ill people in grim, abusive, totalitarian "hospitals" that were more like dungeons. Instead, we were going to provide them with community based services and housing in the least restrictive possible environment. They were going to be reintegrated and treated like human beings.

So the states emptied out their mental hospitals and then closed them down. In 1955, there were 560,000 people in state mental hospitals. Today, there are 45,000, although the population has doubled. That seemed to save the states a lot of money, so they were happy to do it.

What they were not happy to do, however, was the other half of the proposition: create community housing and supportive services. They noticed the big bucks they saved by closing the snakepit, and they left it at that. As a result, today, half of the people in prison and jail are mentally ill and/or have substance use disorders, and 15% have a diagnosis of psychosis. (The rate is even higher for women.) The ones that aren't locked up with the serial rapists, or in solitary confinement, are often living on the streets or in homeless shelters, getting medical care in emergency departments if at all, and cycling through jail and detox.

Here's a handy backgrounder from the Vera Institute.  (PDF -- the web page is here.) Vera thinks the ACA provides a chance to do something about this, because once people get out of jail, they will now be eligible for Medicaid in many states, and it will be possible to finance more services for them. Maybe, but Medicaid is pretty stingy and these people need a lot. Sisti et al think that for some people, institutional care is the best solution after all. They don't want a return to the bad old days, but large-scale institutions can provide the breadth and depth of services people need most cost-effectively, while guaranteeing good quality shelter, three squares, and social opportunities. It's cheaper than jail and the ER, too.

This isn't for most people with serious and persistent mental illness. Those who can and want to live in community settings should still be given that opportunity. But for some people, it may be right after all.


Daniel said...

Timely post. This also applies to those, like my son (Down Syndrome), with a development disability. Fortunately, we can still care for him, my wife and I are in our mid 60s.

In our state there is no entitlement to services. There is approximately a 10 year waiting list (just informed of this from his case manager). Of course, the Republican legislature in our state is "pro life".

Cervantes said...

It is definitely a problem when people with developmental disabilities lose their family caregivers. Of course people with Down Syndrome can live in group homes, we don't need the big state hospitals for that, which is where they and other people with cognitive limitations were typically housed in the asylum era. The institution in Connecticut was called the Mansfield Training School, not far from my home.

kathy a. said...

That JAMA link isn't working.

There definitely need to be more services that people in the community can access -- medicaid may be a start, but negotiating the process could be difficult for people in need of mental health services. And it won't do much for other needs -- food, clothing, shelter.

One problem is that the law protects the independence of individuals, even if they are unable to make rational decisions, until they meet the criteria for incompetence. In my state, that is grave danger and inability to provide the necessities for oneself. At that point, a conservator might be appointed to manage the person's affairs and/or health care decisions.

My SIL has an unusual early onset dementia, frontotemporal, and the problems at onset are with reasoning, judgement, ability to control behavior -- not with memory in the earlier stages. It took years and a series of disasters before she was legally incompetent -- she lost her marriage, her job, driving privileges, custody of her child, her house, all her money, and virtually every relationship in her life. She ended up being evicted, and having criminal charges pending. She could not understand the charges or cooperate with counsel.

Her brother became her legal conservator. But that process itself is challenging. He had to hire a lawyer, file papers; there was a full investigation; SIL had her own lawyer appointed; things were in limbo for a while before even a temporary order could be gotten (so nobody could pay her bills); it took several court dates. And it needs to be renewed yearly, with a full accounting. This went relatively smoothly because we already had a good solid diagnosis; but not everyone is so fortunate as to have world-class neurologists to sort things out.

Another problem is that while medicare / medicaid cover medical expenses, the medicaid only contributes to housing and food if a person is in a skilled nursing facility. There are not a lot of facilities eager to take on a patient who is much younger than most, and has behavioral issues.

SIL has a decent retirement income plus disability checks, and that is currently covering her expenses in a closed dementia facility, barely. Not everyone is fortunate enough to have worked a long time for an outfit with excellent retirement benefits before falling ill.

Anyway, it seems to me there are a lot of gaps in services. The last couple of years with SIL's problems have been really draining to my family, and we are in a relatively fortunate and connected situation.