Institutional Failure

I've been following Danny Hakim's series of articles on the terrible state of homes for the developmentally disabled in New York State. He has a new article

http://graphics8.nytimes.com/bcvideo/1.0/iframe/embed.html?videoId=100000000849083&playerType=embed

Hakim explains that these disabled children and adults are abused and even killed by poorly trained, over worked, and under educated staff workers. There's no question that these staff workers have a tough job. The patients are often violent, schizophrenic, and erratic. They work long shifts. But we cannot have this vulnerable population abused in state-run facilities. 

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. Crotchety, 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. 

UPDATE: 

 Megan picks up this post and adds her own thoughts. She writes that improving the quality of care at these facilities is easier said than done.  

 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?

Caring for the sick, old, and disabled is hard work. My mom and I were just discussing this article and mom made the same point. It's a career path that few willingly follow.

Yet, caring for people isn't all that bad. What are you doing right now? It can't be THAT interesting if you are reading a blog post that doesn't have any double entendres. Wouldn't you much rather take a group of kids bowling? I have a friend who works in a psychiatric hospital in the city. She spends her afternoons coloring with the patients. Not bad. If you work for the state, you probably get great benefits. You can schedule your hours, so you're home with your kids.

Money alone won't change the treatment of the sick, disabled, and elderly in these state-run homes. We need to create a culture of care. We have to learn to be around the disabled and the elderly and find them amusing and interesting. We have to recognize that they are human beings. That's the only way that we're going to get good people working in these institutions. I  suppose that's a much bigger challenge.

36 thoughts on “Institutional Failure

  1. I had a fairly lucrative babysitting gig last fall for a speech delayed preschooler who was getting expelled from his public program. It was generally a good experience, but he really didn’t like transitions (time to potty! time to eat! time to leave the children’s museum!) and his first response to being interrupted was a killer right hook (hence the expulsions). It was easy to anticipate when you knew it was coming, but I eventually decided that I wanted at least $15 an hour for any job with such a good chance of getting punched in the face (I had asked for $11).
    The happy news is that the last I heard, due to a medication and staff change, he’s been able to attend school without being expelled.

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  2. The circumstances under which I’d be willing to take on the kind of job that folks profiled in article do are nearly non-existent. It’s hard to imagine the circumstance in which I would need that job (for the money) and absent that, I would only do it for love, and not for money. Even in that circumstance, it’s really really hard to imagine.
    Now, I’m probably an extreme case. I find caring for other people’s physical and emotional needs the most difficult thing I’m taxed with doing.
    (After writing that blithe paragraph, I’d love to see you take up the challenge you suggest — spend a year working in an institution for the developmentally disabled — and then write a book about it).

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  3. I have worked for a state’s department of mental health, but not in a direct care capacity.

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  4. The best part about it was that they gave you a card that said “Sane” for when you visited the hospitals. The second best part about it was regular raises at higher than the rate of inflation, but I’d guess that stopped by now.

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  5. Blithely dismissing the option of paying people more until the job attracts competent applicants without criminal histories seems out of line to me. The unemployment rate is what, over 9%? If they can’t hire decent people to work in these homes, it’s because the jobs are unspeakably awful, and more money is a classic way of making an awful job more acceptable. (I would guess that working conditions are terrible as well — you might be able to attract better employees by hiring a higher headcount so the workload was lower, rather than by only raising salaries.)

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  6. “(After writing that blithe paragraph, I’d love to see you take up the challenge you suggest — spend a year working in an institution for the developmentally disabled — and then write a book about it).”
    That is actually a very good idea.
    Personally, I am of the “hell is other people” school, and I find being around large (or small) groups of people extremely taxing. It can be enjoyable, but it takes a lot out of me. Doing people work all day and then coming home to do more unpaid people work at night would not be sustainable, although I know there are raging extroverts who can pull off that sort of thing.

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  7. I’ve volunteered with groups for families with developmentally disabled and emotionally disabled youth. I find not only the pay in the institutions depressing, but the politics on the job site so stressful that people don’t stay in the field long. I also have developmentally and psychiatrically disabled children of my own, some of whom are now adults.
    While the pay and benefits by no means make up for the stress of the job (which in most cases has less to do with the clients than the constant struggle with a system that doesn’t really care) many people find the amount of time they spend, including training and meetings, just doesn’t allow them to make ends meet. The demands of the job by no means is consistent with the pay.
    Let’s face it, we’d all like to think that the problem is simply that no one wants to work with the developmentally and psychiatrically disabled, but that simply isn’t true. The problem is that the system doesn’t support the employees at these facilities, and will choose untrained and sometimes dangerous personnel whom they can hire on the cheap instead of people dedicated in the field.
    The idea that most people get to schedule their own hours (unless they are “babysitters”, kinda like old candy-stripers) is ridiculous. Most of the jobs are very strict in the times you have work, and in many cases these jobs are for overnights and weekends, which are even more difficult to fill.

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  8. which in most cases has less to do with the clients than the constant struggle with a system that doesn’t really care
    The system cares, or at least the people I was in contact with among the administrators and clinicians did. But administrators are best at the exercise the kind of caring that it mostly annoying to the lower level workers.
    For example, because some very small proportion of the patient population is a danger to themselves or others, you need to have the ability to restrain patients. Because some very small proportion of the staff is really lazy or cruel, you need to have safe guards to keep the staff from using restraints when they are not needed. This translates into a busload of paper work and annoyance that will make an honest staffer feel persecuted and a dishonest one realize that as long as nobody writes something down, it probably didn’t happen.
    I don’t see a good way around this. There are very good reasons that everybody hates bureaucracy and very good reasons that nobody every gets rid of it.

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  9. Ack! Didn’t mean to “Blithely dismissing the option of paying people more.” I just meant that it wasn’t a sufficient condition to bringing in better quality people.
    It’s worth reading the comments on this post at MM. Something I usually avoid doing. There are some very thoughtful comments about the poor administration at these facilities, as Fab Kate says.
    And that challenge about caring for people for year. What do you think I am doing right now? For no pay.

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  10. Trying not to get really, really pissed off.
    This weekend, I am going to birthday party with some very disabled children. We’re going bowling. I will be helping them throw the ball down the alley and helping them drink their soda. And guess what? I am writing a book about these experiences. Please do not challenge me on this topic again.

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  11. “I will be helping them throw the ball down the alley and helping them drink their soda. And guess what? I am writing a book about these experiences.”
    That’s fantastic, but it’s qualitatively and quantitatively different from clocking in and doing five shifts a week (or however many) in an actual institutional setting. It’s something like the difference between cooking dinner for your friends and family and actually working full-time in a restaurant. There’s no denigration implied, it’s just different.

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  12. There’s at least one story in Molly Ivins’ first book (lost my copy) about companies that were making tidy profits on such institutions. The root of all evil is likely involved here somewhere.

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  13. I worked in a group home for people with severe developmental disabilities for three years in college. I loved that job but it either works for you or it doesn’t, there’s very little middle ground. Most of the other employees were also college students with majors primarily in social work and that combined with good management meant that we provided (I think and hope) a high level of care for the residents.
    You wouldn’t need to raise the wage that much to employ more qualified staff. Unemployment for young people is very high right now and I imagine there would be a lot of recent grads, especially with majors like psychology and sociology that don’t feed into a specific career, that would do this work if not for decades than at least for a few years. One of the nice things about the company that I worked for is that they had a clear career ladder so that if you worked hard you could be promoted within a year and could definitely be making good money within three years. There aren’t a lot of opportunities like that for recent grads.

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  14. Amy P, I’m trying very hard here, but you’re being a moron. Do I need to state the obvious? I live with a developmentally challenged child 24/7. He’s not nearly as involved as the children in these homes or at the birthday party on Saturday, but I do my share of crappy chores.
    The point I was trying to make was that we as a society are too isolated from caring for people. Old people are tucked away in homes. Autistic kids are locked away. With this kind of culture, workers are not going to flock to care facilities.
    Of course, we need to improve pay and administration of these he’ll holes. We also need much bigger changes.
    Now, debate that and keep my personal life out of this discussion or I’m closing comments.

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  15. “The root of all evil is likely involved here somewhere.”
    They do mention that in the article — in the form of federal government subsidies that draw money into the state. The numbers were quite large >1.5 M. I was quite willing to buy into MM’s idea that money is the root of the problems (that is, not enough of it to offer high quality care to a very needy and demanding population). Estimating that you need 5 people to provide 24 hour care, it seems like you should be able to fund them at that level. I think numbers like these are what make the anti-institution crowd confident that care can be provided more cheaply in a home setting.
    They did say that NY is siphoning funds (potentially illegally) from the federal government. But, if one really could spend 1.5M per child it seems like providing 24 hour care personnel in the child’s home, with parents supervising the care might be a less expensive (and better) option.
    I think there’s a political barrier to delivering care that way — because it looks like too much of a personal subsidy. But looking at the value of institutional care, I’m finally coming around to see their argument that it’s simply cheaper for the taxpayer to subsidize family caregivers than to provide institutional care. (And that’s ignoring the human cost of institutions).
    (And, Laura — I’m stepping out of making any personal comments).

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  16. Oh, and to answer Doug’s comments — it’s not clear to me that there’s an private enterprise profiting in this particular set of stories. More likely is some folks with decent jobs (i.e. the administrators) and a siphoning of federal government funds to other needy, but not subsidized users. In fact, they mention the siphoning of funds to group homes (an alternative care-giving enterprise) as one of the issues that’s being investigated.

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  17. In fact, they mention the siphoning of funds to group homes…
    Yes. The article was heartbreaking, but that detail was bizarre based on my experience. Back when I was involved, the feds were trying to pay for only people in groups homes or otherwise not institutionalized directly in by the state. New York was known for being unusually adept at getting federal dollars, but to get enough institutional dollars to send some out seems very strange. I suppose it must be different for kids.

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  18. Where is the money going? If the state receives ~$1.8 million per resident, (or even $430,000 per resident), it should be possible to offer more than “less than $30,000” to the caretakers in direct contact with the clients.
    At a guess, I’d want to know how much the “regional supervisors” are being paid. The pair cited at the end of the article were not impressive. How much is the state paying to people who have a vested interest in turning a blind eye to abuse? How about doing away with a few layers of middle managers, and instituting an audit team which did not have a vested interest in not finding problems?
    It seems that there are caring employees who do try to blow the whistle on abusers, but the system itself perpetuates callousness. The senior citizens I know well do not want to enter a nursing home, probably because they have visited friends in nursing homes. Institutionalized care is an oxymoron, maybe?

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  19. The senior citizens I know well do not want to enter a nursing home, probably because they have visited friends in nursing homes.
    Or is that, to some degree, the point? My grandma is in a nursing home now, but we went way out of our way to keep her out of it from two years. She had no assets, so the government pays.
    When I was a kid, my very disabled younger sister (fetal alcohol syndrome) was never institutionalized, in part because of scare stories like those in this article.
    Of course, no one would ever want anything remotely close to what is going on here, but isn’t it possible that “not very nice” is more of a feature than a bug?
    If nursing homes and institutionalized care was more comparable to life in lower lower-middle-class home, then there’d be much more demand for it, which would drive up costs as much (if not more) than the increased costs of making the places nice in the first place.
    If the nursing home was a loving, friendly place where you’d be happy for grandma to go, we could have gotten grandma in (on the government dime) three years ago, right after grandpa died.

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  20. “The senior citizens I know well do not want to enter a nursing home, probably because they have visited friends in nursing homes.”
    My grandma definitely feels that way after seeing her blind sister plopped into a sad nursing home by her two sons (the blind sister’s siblings had paid for a nice nursing home for a while, but eventually there wasn’t enough money).

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  21. Re: institutions v. Home care
    My Aunt Theresa doesn’t have much longer. She was in one of those institutions for a while. She demanded to get out. Luckily, she had enough money put away after a life time of scrimping. She has 24 hour help, and is much, much better cared for. Going home extended her life by two or three years. The problem is that there is no one but my mom –an old friend, but not a relation — to coordinate the bills and legal matters. if my mom wasn’t so nice, my aunt would be in big trouble.
    I don’t understand why we as a society treat the old and the disabled so poorly. We’re all going to be there some day.sigh. Going to buy a pack of smokes…

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  22. Going to buy a pack of smokes…
    That’s one way to avoid a nursing home.
    My aunt is likely to hit the nursing home soon if the rehab hospital can’t do anything.

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  23. I think we actually do a much better job of caring for people with disabilities than we used to, as a society. I think in the olden days they were marginalized, neglected, institutionalized, forgotten (and, probably sometimes, straight out killed). I think we’re more likely to address needs now, not in small part because families fought for it.
    I think the issues with the elderly are more complicated — because I do think that the elderly were more integrated into the lives of their families than they are now. That was a two-way street, though. I think the issue with the old is that they now live much longer than they used to.

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  24. I don’t think the old live longer than they used to, but rather more people make it to old. I’ve been reading a book about Lepanto and the decades before. The ages of the leaders (especially for the Italians) were the biggest surprise. Andrea Doria made it to 93 and worked until 84. Venier was in his late 70s when he fought at Lepanto and elected Doge at 81.

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  25. “That was a two-way street, though.”
    In cultures around the globe older people (particularly grandmothers) have been very valuable in terms of the services they provided their children and grandchildren.

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  26. isn’t it possible that “not very nice” is more of a feature than a bug?
    The moral hazard problem is not an acceptable excuse for abusing the people who have no choice about the care they need.
    And, in fact, there are some excellent and pleasant assisted living facilities for those who can afford to pay, and most older people still don’t want to go live in them. There is no real moral hazard here, just a reluctance as a society to pay for adequate care. FWIW, I think the basic problem here is that this care is often provided free by unpaid, nearly always female family members. If we as a society have gotten it free in the past, there’s a profound reluctance to start paying for it, and if we got it free from women, multiply the reluctance by ten (because women’s work is always undervalued.)
    By the same token, the #1 reason why we used to be able to pay so much less for public schools is that for many decades, women who wanted or needed to work had very few career options, and teaching was one, so we could pay teachers crap and get away with it.

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  27. OK, I watched the piece and it’s breathtakingly horrifying.
    One thing that struck me, though, is that if the state of NY is paying 1.8 MILLION per disabled person in the system, they damn well ought to be able to allocate more of that to paying the caregivers enough to make it a desirable job with high standards. For God’s sake, if you cut that in half and simply handed a $900,000 check to the family of every disabled child each year, they could almost certainly hire the caregivers, therapists, etc. that they needed.
    I know that vouchers are typically a Republican idea but I wonder if a voucher system would solve a lot of problems here: each family is given a voucher budget and given the option of choosing in-home or institutional care, etc.

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  28. re: the money. A commenter at MM said that an aide costs $30,000 per year. Where’s the rest of the money going? Well, these kids need more than one person watching them. Some of these kids have extreme behavior problems. That’s why they are there. They may need 24 hour help, which probably means 3 aides. They also need educational services and therapy. Room and board. Administrative coordination. Bus service. One mildly affected special needs kid can cost a school district $100,000 per year. Imagine extreme behavior problems and room and board tacked on. It’s expensive. Still, 1.8 million per kid is a HUGE number. I would really like to see a break down of where that money goes.
    Yes, Naomi. I was thinking the same thing about giving the families a big voucher to provide these services at home. Except that some of these kids cannot be managed at home. They may be a danger to other family members or themselves. They may not sleep at all at night. The family may not have the space to accommodate the staff needed to watch this child. In terms of using the money to shop around for better private homes for the child, a voucher might be very useful. The rich people hire lawyers who then, in effect, get a voucher to send the kids to a private school. Perhaps everyone should have that opportunity.

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  29. I know someone who knows stuff about funding for stuff like this in NY. . Any specific questions you’d like me to ask?
    This person just finished an annual cost report that had to go to state auditor-types. The auditors asked, “Why did you spend more on repairs this year?” The person responded, “Because we repaired more stuff? Duh!” Well, that was not actually said, but the sentiment was conveyed.
    There is some oversight; it’s not just a free-for-all.

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  30. In cultures around the globe older people (particularly grandmothers) have been very valuable in terms of the services they provided their children and grandchildren.
    Amy P, we’re starting families at later ages. That means grandparents are older. By the time there are grandchildren, grandma may need her own minder.

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  31. “We have to learn to be around the disabled and the elderly and find them amusing and interesting. We have to recognize that they are human beings.”
    Exactly. So many people are so fascinated by quirky old buildings and the stories they could tell. What about quirky old people?

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  32. Where’s the rest of the money going?
    I slightly know a man who runs a big part (maybe all of) the foster child system on a private basis for the state of Alabama. He’s very, very wealthy, rich even, by most people’s standards. He doesn’t have family money, nor, as far as I know, an extremely keen eye for an investment deal or something like that. Whether there are similar things in New York or not I don’t know at all, but it wouldn’t surprise me.
    So many people are so fascinated by quirky old buildings and the stories they could tell. What about quirky old people?
    I only have to hear the old building’s story once, and only if I want to. That’s an important difference. (I’m mostly joking, but only mostly.)

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  33. That piece is heartbreaking.
    “We have to learn to be around the disabled and the elderly and find them amusing and interesting. We have to recognize that they are human beings.”
    My son’s daycare is next to an old-age home and they go over there for lunch one day a month. But we’re pretty much around elderly people a fair amount – not just our own aging relatives, but the seniors next door, etc. My dad was in a rehab wing of a long-term care facility for a couple of months this winter and I was really impressed at how hard this facility worked to integrate into the community – free yoga classes, etc. I don’t know how far into the non-ambulatory areas that penetrates, though.
    This is pushing me in our gym decision. We can join one of two family-oriented fitness clubs. One is the Y, which does do some social stuff, and the other is a fitness club primarily for the disabled, but which encourages able-bodied families to join. Half their programmes – volleyball, etc. – are integrated, so the able-bodied kids have to learn to move around the wheelchairs (but the net is lower); all the kids learn to play with the kids with mental and behavioural challenges, etc.
    The trouble is, the second is twice as expensive and you get about half the programmes, since a lot are geared more specifically like wheelchair basketball.

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