Sunday, May 16, 2010

Time to regroup, guys.  I'm getting seriously fragmented here ... .

Beginning to think about just how much Dorian's accident will impact both our lives, and it's sobering.  The "in-community" support systems which are guaranteed by California's Lanterman Act which was passed many decades ago  to guarantee the care of the developmentally handicapped over their lifetimes have been drastically cut back due to the economic crisis.  But actually, there has been systematic and increasingly severe reductions in services to the disabled going back several decades dating from the time I worked for the State of California as a field representative for a member of the State Assembly.

The slashing of the so-called Safety Net began under Governor Reagan and has seen major reductions with each succeeding legislative session.   We now see people in the general population who are totally incapable of living independently -- struggling to survive and failing in many cases.  They're living under bridges and over grates and they've become such a common sight in most cities that we fail to see them at all anymore.   They're mixed in with returning veterans of our many wars who are suffering from PTSD; with the mentally ill (as opposed to the mentally disabled); with those displaced by the foreclosures of homes; and with the addicts and abusers who've become the lost souls of this generation.

Somewhere along the way we entered into a practice of redefining the problem of what "disabled" means.  It's like the degrading of what "brown-fields" means; land so toxic that, at one time, our regulations would not permit builders to use them for homes.  They would be developed as parks or golf courses.  There are many such sites in Richmond, so the term has meaning here more perhaps than elsewhere.  Slowly we're seeing criteria that defines those toxic lands as unfit for human habitation being re-defined so that they no longer classified as too dangerous.  They're made whole by the changing of the few words in the definition of what a brownfield is.  So it is with those like Dorrie whose services are no longer based upon what she needs in order to survive out in the world, but are now based upon what society can financially afford to provide.  Critical services to the handicapped have been slashed to the bone, and more cuts are coming as we approach the budget hearings in June.

I've watched, over time, Dorian being expected to make decisions that require judgment -- which in turn requires abstract ability; an attribute that is missing in anyone with an IQ of under 80.  She cannot weigh alternatives.  There are no "what ifs" in her vocabulary.  She is incapable of weighing consequences.

Though her vocabulary doesn't reflect her deficits (remember, she has an incredibly sharp rote memory), and she has the capacity to make her needs known pretty accurately, and she is capable of learning things that can be encoded into "systems;" rote memory, again.  If anything slips out of order and she needs to make a judgment call, it all becomes a jumble and she can't get back on track without assistance.  And -- she has no idea that things are out of control.  That takes judgment.

I've never gone to court to have her conserved, and that's an issue.  It has always been my opinion that she would be less capable of gaining any sense of independence had I done that.  I would work on getting her as independent as I could during my lifetime, and my sons (who would be spared her care while they were raising their own young families or getting their own adult lives on track) might want to do that after I'm gone.  It was my feeling that there might be some resentment if they had to feel the burden of her care before that time, and  I wanted them to be free of that while I'm alive to assume that role.  We've discussed it all along the way, and they've been really considerate of her without restraint.  I think that's true because they've been spared that responsibility as long as possible.

The accident which resulted in making her now permanently physically disabled as well as mentally challenged, is something that came out of the blue.  Her needs will be different now, and any thought of independence has flown out the window.  Her stay in 4 nursing homes since November 27th has produced some new anxieties -- and she is showing signs of depression.  She is so concrete that -- if she is given a date or a time she is fine.  Even if one tells her that she will be released on December 15th -- she can live with it if she has a calendar to mark off the days.  She absolutely cannot live with uncertainty -- and that's our state of being right now.  We'll have another x-ray of her legs on Wednesday and probably there will be some weight bearing therapy started that will tell her that we're making progress.  She is wearing a heavy boot (today's cast) on her right leg that may be removed, and she'll return to using a walker instead of the wheelchair; maybe.  She is hoping to get out of Elmwood sometime in June, if all goes well.

Meanwhile, the Regional Center of the East Bay (RCEB) that has been charged with her care since childhood -- and with whom long-range planning has suffered such heavy budget cuts that -- though the director of the county office met with me on April 14th and promised to send their nurse for an evaluation on which we will base plans for her living arrangements -- that nurse arrived at Elmwood to meet us one month later; this past Wednesday.  The caseloads for case managers, for ILS (Independent Living Services) workers, is so impossible that the only thing open to adjustment would be the lowering of expectations on my part.  Everyone at the agencies are doing their utmost to serve this population, but despite the effort of some fine professionals,  on the news last night the Governor announced further cutbacks on those same services.

I'm really beginning to get the message that I may have come to the place where I'll need to finally give up my work in favor of taking her home to live with me. That has not been true since she left for St. Vincents Academy at the age of 14.  We've been a success story up 'til now, with a succession of living arrangements (group homes, apartments with ILS services).   

... all that time and all those lessons ... all that pain of separation over the years ... .

... and I'm not sure that I'm ready to retire -- and maybe I'll never be.  There are so many things undone, and so much yet to learn ... but then I'm sure that others will pick up the mission and life will go on. 

But having been a late bloomer, it feels as though I'd be leaving in the middle of the movie.

Photo (top):  One of Dorian's artworks, wood pieces painted and glued to a backing.
(middle):  Dorian having won her medal in Special Olympics swim meet, pictured here with the Fire Chief of the City of Alameda.
Silk scarf dyed using techniques of batik.  Cats are almost always the theme of her work.  If you'll look carefully you'll see her cat, Marilyn.  (click to enlarge)

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