What is it with all these new institutions being built? I thought the move was to get rid of institutions.

Evidently not. In my Dec. 7 blog entry, I told you about San Francisco's bullheaded plan to rebuild the aging Laguna Honda city institution to the tune of nearly $750 million. That's million. ( Read the story from San Francisco Business Journal.)

On the heels of that outrage came news on Tuesday that not only was Kentucky committed to keeping open its Oakwood institution, despite repeated citations for abuse of residents (Ragged Edge news items here and here and here) -- but that it was going to spend "up to $1 million a month" to do so -- at least for the next several months. Amazing. ( Read more about that one here.)

Not to be left behind by the re-institutionalization bandwagon, tomorrow VA Gov. Mark Warner plans to unveil a new budget that includes "$290 million to fully replace two aging psychiatric hospitals and two institutions that house people with intellectual disabilities." (Read the Inclusion Daily story about that.)

What's behind it? Jobs, frankly.

The San Francisco Business Journal has this telling paragraph:

... the Service Employees International Union has provided the political juice. The facility has nearly 1,600 full-time-equivalent employees, and 1,357 -- 85 percent of them -- are affiliated with SEIU, one of the city's biggest political players. The union denies that its motive is protecting jobs, but says the city can find the money to both rebuild Laguna Honda and improve care in the community.

Sources close to the Oakwood circus lay the blame very nearly at the same spot.

Oakwood is the largest employer in the small Kentucky town of Somerset. Over a thousand folks have jobs at Oakwood. And they like those jobs. They pay well, and they want to keep them. The state wants them to keep them, too. Good employment for a small Kentucky town.

There are only about 300 residents, so this translates to close to 4 staffers per resident.

If I had a household staff of 4, my home would be on the cover of Architectural Digest. Not to mention that my clothes would be ironed (and the missing buttons sewn back on!), my gardens the envy of BHG readers, my parties constant and to-die-for. Sorta makes you wonder what all those staff are doing at that institution. Oops! Now I remember: they're abusing the residents.

Something is very very curious, and very very wrong, about this picture. Nobody seems to know the true story, and the institution goes on.

My source tells me that very few folks other than the state's Protection and Advocacy agency are calling for the closure of Oakwood. There are hardly any disability rights groups in Kentucky. There are some parent organizations, and frankly, it seems, they get money from the state themselves and don't want to jeopardize it by saying anything. And then, a lot of the folks in those groups are "professionals" -- as in "mental health professionals," you know -- and they work for the state. So their lips are sealed, even if they believe in their hearts that Oakwood should be closed. Which maybe they don't. I don't know, since they don't talk about it.

I believe that many of the Oakwood employees, like the Laguna Honda employees (and no doubt the Virginia institution employees) are members of SEIU. SEIU is a big national union.

Unions have certainly been known to fight for what are reactionary social practices in order to protect jobs, but in most cases they've lost. While I would generally like to be supportive of the labor movement, these people pressing to keep institutions open so they can have jobs are taking a position I simply cannot stomach. I know that with SEIU that disability activists have worked with them, and so I know that SEIU can "talk the talk and walk the walk" -- except they don't. (Ragged Edge has run stories on SEIU in the past -- here and here.) Or they do so selectively. Very selectively. They want it both ways -- jobs in "the community" and jobs in institutions, and most people see nothing wrong with that. Which is why stuff doesn't change.

The big problem, as with most stuff when it comes to disability, seems to me, is lack of public outrage. The public by and large doesn't really care whether institutions exist or not. They don't know the indignity -- hell, the horror (let's be exact here ) -- of institutional life. They seem not to believe it when it's told to them, or they figure that the real horror is just the disability and that no life is ever going to be good for Those People, so what difference does it make whether they are in an institution or a group home (which also abuses them -- see my blog entry on that )?

The SF Business Journal article gives a good example of this kind of thinking, in a way. Reporter Chris Rauber's coverage begins with the story of Gerald Scott:

Gerald Scott has been a resident at Laguna Honda Hospital for roughly half his life, ever since he was jumped and severely beaten as a young man 25 years ago. Now he hopes to leave.

Scott's attorneys say he's significantly disabled, with both cognitive and physical impairments, but would be capable of living in an apartment as long as he had an attendant to help with things like cooking, managing money and getting to doctor's appointments. ...

Note that Scott is a "patient" -- but also credit Rauber for referring to the man in subsequent references by his last name, which is standard for news journalism, rather than calling him by his first name only, as do so many news stories when reporting about disabled people. (This is a very small point and it doesn't really belong in this blog entry, but it's such a telling thing that I wanted to alert you to it as you watch and read the news.)

But then here comes the next sentence from Rauber:

Scott has had a sad life, and there's not much Laguna Honda or any other institution could have done to deal with much of his pain since Friday, June 13, 1980, when he was assaulted on a Tenderloin street, on the way to pick up his daughter.

There you have it: the pain of the disability is so great as to make other issues -- such as where and under what conditions one lives -- simply pale into insignificance. You'll see this all the time, too, in coverage of disabled people if you watch for it.

For most people, the idea of Those People living in their own homes with things under their own control is simply too much to even fathom.Granted, not every person with a severe disability also has the cognitive and emotional ability to control their lives but you can bet your sweet patootie that far more of them can do it than are believed to be able to do it. And almost none of them (we're speaking statistically here) get that chance. That is to say the powers of society are arrayed against that. Including the SEIU, which could be the solution, if they put on a big national drive themselves to close the institutions where they worked and pressed for in-home services, where they could work as well.

Maybe you readers are too young to remember the hippy-dippy sentiment that "if you're not part of the solution, you're part of the problem." But it's apt here.

Somebody oughta call up some SEIU bigwigs -- again -- and clue 'em in.

December 15, 2005 | Email this story


Comments (newest comments at bottom)

At the Alliance for Full Participation summit in Washington this fall, things got so crowded that I blundered into the wrong session! But even there, I learned something useful: unions don't need to be the enemy when it comes to direct care.

The "public authority" model places direct care workers in a county government labor pool. As county employees, they can of course join a union. Consumers then hire the workers they need directly from the county pool, eliminating the "middleman" (the institution).

The model originated in California and has spread to some other Western states, though not mine, alas. So San Francisco really only needs to look right in its backyard for an alternative.

Oh yes, the governor of Virginia is Mark Warner; John Warner (no relation) is a Senator from that state. Don't say you weren't "warned"! In a similar vein, the name "Oakwood" is spelled "Outwood" in the third paragraph. Freudian, perhaps? "Get our people out!"

Posted by: Mark Romoser on December 15, 2005 02:07 PM

Mary Johnson replies:

I guess I was asleep at the wheel as I typed! Thanks, Mark, for catching those typos -- er, brainos. The Outwood-Oakwood snafu can be somewhat explained by the fact that Kentucky has BOTH "Oakwood" AND "Outwood" institutions. Weird, eh?

Posted by: Mary Johnson on December 15, 2005 03:01 PM

And another fantasy might be that Laguna Honda would become the model for training professional attendants so that the Union might be a Guild and people could hire/fire them and they'd be highly trained.

San Francisco has excellent training grounds such as the University of California Medical Center whose visiting nurses program could really shine as a way to make in-community care be a showpiece for what needs to be done.

If/as we "free our people" we must be sure not to have happen to them what happened when Reagan just turned the streets into homeless "havens" for PWD a few decades back. This time the money must follow the client (victim/patient/whatever) and the attendants must be well-paid/respected professionals instead of mere bed-pan-cleaners.


Posted by: William Loughborough on December 16, 2005 10:15 PM

I am a homecare worker and part of the SEIU, which has made life better for homecare workers here. We have gotten medical benifits, paid time off, workman's comp, and yearly cost of living raises, none of which we had before. Hopefully, this will translate into better services and less turnover for the clients.

The nursing home workers just joined us recently, and it makes me nervous. They are better paid and get better bennies. I see no reason why we couldn't combine forces and keep them employed by working in homes rather than nursing facilities, and somehow increase all of our pay and bennies to their levels. I'm afraid that instead of working together, they will just work to get people out of homecare and into better paying nursing home jobs. It will be interesting to watch.

Posted by: Lisa on February 13, 2006 12:22 AM

The way these people are living are terrible. Something needs to be done.

Posted by: Janet E. Willis on August 17, 2006 06:22 PM

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