A Freeway in Hell

My thoughts on the nature of our late capitalist society. The title should give some clue what I think of that! US 101 or I-80 as metaphor for our imperatives. Besides worrying about what sort of black hole we are speeding into, I like airships. One reason being the almost inescapble desire to have one to get out of a traffic jam!

Location: Sonoma County, California

Grew up a military brat, Californian-in-exile, reactionary libertarian-essentially spent the 70s on Mars, for I am hearing impaired and I did not know what the music was saying. Generally still don't unless I listen to it over and over or find the words captioned on a movie or somewhere on line. Came "back" to California to begin my adult life, have not lived elsewhere since. No regrets there despite our problems here. Have studied physics, more math than most human beings will ever need, worked on spaceship projects (well, one) at JPL. Lived with a wonderful disabled person who lives no more--L Natasha Littletree RIP October 2004. I have a life plan, just kind of vague on some of the short-term stuff.

Monday, July 31, 2006

Bureacratic Fraud and Abuse

I met L Natasha Littletree in a community college class in Pasadena, California, in 1989, and within a couple weeks she had invited me to her home. She was severely disabled, with a neuromuscular disorder called Friedreich's Ataxia, and when someone she had hired to assist her did not show up I agreed to enroll as one of her In-Home Supportive Service workers. Within a few months I was her only IHSS care provider, and kept that job until she died in late 2004.

Within a few weeks of moving in with Natasha, I wanted to invent a board game, along the lines of "Monopoly" or "Life" or the like, called "Bureacracy." I was incredibly ignorant and naive about how to navigate social services. Generally speaking, people who qualify for any significant kind of public support need to get help from several different, more or less independent, agencies at once. (Natasha for instance dealt with LA County Social Services, the Pasadena Housing Authority, Social Security, the Department of Rehabilitation, and Medi-Cal). They all have rules, and no one but the recipient knows much about how they interact. When one agency makes a change, the relationship with all of them can be affected, often for the worse. It takes some footwork and savvy to avoid getting mashed in the gears.

While I was with her, Natasha was usually treated pretty fairly, although she had some truly horrendous stories from the course of the previous nineteen years, her entire adult life, of changing policies and systems that were not always what they were supposed to be on paper. She knew when to insist on her rights and when to back down, and when to pay a visit to her local politician. She was about as clearly entitled to support as anyone is considered to be in the USA, and even so for survival's sake she had to learn to be a player. And that's why I think I witnessed relatively few axes fall on her, and why we generally got along well with her social workers. But it took courage, and work, and the onus of bringing the right facts and legal mandates to the attention of various agencies often fell on her.

For instance, our introduction to active participation in negotiating with the California bureacracy at the highest levels came in early 2000, when she decided to join a Sonoma County commission that was going to oversee major reforms in IHSS. The county has a general policy of paying per diem compensation to committee members, and we could not figure out whether hers would be counted as "earned" (in which case she was supposed to keep half of it, the other half being taxed away in increased share of cost from her Social Security Disability) or "unearned," all of which she would lose via shares of cost. Apparently nowhere in the extensive codes of law and case experience did the state every record a case of an actual recipient of SSI, subject to the stringent and restrictive rules on income that come with a program designed to deliver no more than 60 percent of minimum wage income for people deemed unable to work in the regular job markets to live on, actually sitting in such a place of honor as a county committee. At any rate, not a county that paid per diem!

We wound up meeting with state senator's staff, our Congressman's staff in St Helena, then off to an appointment with 5, count'em 5, high-level experts in the state's Health and Human Services Department in Sacramento, in the Capitol. (Governor Gray Davis poked his head into this meeting too.) The experts had no idea either, and had to send us home while they thought about it. Then they decided it was "unearned," on what grounds I never heard.

But the worst instance of bureacratic abuse I witnessed personally was when she was assigned a new In-Home Supportive Services caseworker in 1991 after the one she had when I met her had retired.

They routinely made home visits, in part for the convenience of disabled clients. Well, I'd agree it's more convenient when they keep the friggin' appointment, but she came about 3 hours late.Then she spent about an hour gossiping about her personal life. We were cool with that, I guess. But not in context with what came next.

She glanced at her watch, remarked how she had to run, and said "Now, I'm going to slash your assigned hours of service back 10 percent. You've got a right to appeal but you'll be wasting your time, because my supervisor instructed me to do this with all cases and whatever I say at the hearing she'll back up. Gotta run now."

In context, the stuff she had been saying, about how her son had been killed in mysterious circumstances in Tennesee, but "you know how they cover up for each other over there," seemed ominous.

This was late 1991, and the state deficits had been putting pressure on the whole government at all levels to slash costs. The next year the legislature did semihonestly what the counties had got their orders to do under the table, which was to slash back hours by 10 percent.

If we had stayed in LA County I suppose we'd have gone to a "fair hearing," as they call them. Natasha was alreay a veteran of them, though I never actually witnessed one myself. But we had plans in place to move to Humboldt County, so we decided not to make waves. Now I wish we had. I don't know if the LA cases had to take their arbitrary, illegal, baseless hour cuts on top of the next year's arbitrary, legal, baseless cuts or if LA had the grace to raise their hours back to something accurate before slashing the legally mandated percentage.

In my experience, and from what Natasha had told me about her far more harrowing ones, and from my historical studies on the matter, the social services system is a complex, ambiguous, and layered thing. It is a source of much-needed support, a base of operations for people who work quite hard to reduce human misery and aren't much appreciated for it. At the same time, this same system and these same people are a kind of social police, and are forced (or, sometimes you'd swear, enjoy) to implement policies that are quite brutal and stupid. Or rather, the only way to excuse the system of being foolish or misguided is to attribute outright cynical malice to policymakers instead; the age-old question "are they stupid or are they evil" remains as always a debatable enigma.

In its police-state aspect, it operates in layers. Sometimes--not every year by any means, but often enough to be a familiar terror in the lifetime of a disabled person dependent on social services--you hear of truly barbaric and draconian "reforms" proposed in the legislature or by the governor. These rarely come to pass in their raw form (though the minor reforms that can happen any year tend to be in their direction at least as often as in the direction of improvement.) But for certain "reforms" even to be discussed seriously is truly terrifying, and serves to remind the dependent of their abject condition.

The last years of Natasha's life, for instance, were shadowed not only by the possibility that the Bush Administration might do some very drastic things, but by Arnold Schwarzenegger's initial revelations of his plan to pay for budget cuts by reductions and "reforms" in many services that Natasha either depended on or was charged (as Chair of the Area 4 Board on Developmental Disabilities) with defending even if they weren't directly benefiting her. As things happened, the disability community of California, Natasha and I among them, descended on Sacramento after Arnold disclosed his schemes, and he was forced to at least appear to back off. But I firmly believe that the sheer terror she and I went through in the last weeks of 2003 contributed to her death 10 months later. And in general, by the way, the sorts of "savings" the governor initially hoped to realize would have so imperiled the lives of so many people, and closed the noose on the hopes of so many more for a better life, that such "reforms" probably would result in an actual die-off of the caseload--and that, and that alone, would lead to savings. Rationing by holocaust in other words. It was a specific fear Natasha expressed many times.

Sometimes less severe, but painful, changes are indeed mandated, as the legislature of California did in 1992. At the same time as the state openly and legally cut back service hours (the only way to cut IHSS costs short of murdering clients, since we IHSS workers were only paid minimum wage at the time) they had been cutting back the SSI levels on which the disabled recipients themselves were expected to live for several years, and those cuts, in the form of suspending cost of living increases, have never yet been restored. (The arbitrary hour cuts on the other hand were reversed a year or so later, as the state budget recovered.)

And sometimes, the bureacracy claims to be operating by one set of rules but actually follows others, or essentially none. This is what Natasha's new caseworker was doing in 1991. Had the county of Los Angeles openly adopted a policy of cutting the hours across the board, it probably would have been subject to legal challenge, but officially the county was still following the same guidelines as always; it was only a strange (and fiscally fortunate) coincidence that social workers were finding their disabled clients suddenly needed 10 percent less help.

A more persistent layer of dehumanization is "rationing by hassle." If they know that only a fraction of their "cases" know their rights, and a fraction of them will fight for them, they can cheat the rest, and drive some people who by the rules should be helped right out of the system.

But the real art of browbeating and belittling people who need some kind of help lies in the routines that have survived and been shaped by court challenges. These mental mazes seem fair and reasonable to people who don't have to navigate them to survive, generally without prior benefit of a high-level academic education that puts a premium on abstract systems.But in reality, your average welfare recipient, if the cultural barriers set up by class divisions the welfare system maintains could only be crossed, could tell your average high-level bureaucrat or politician a thing or two they don't know about the systems they are paid to be "expert" in.

People with disabilities may be some of our greatest potential statespersons. In general, diplomats are amateurs, but these are professionals whose survival is their best credential. In a modern world of interlocking systems and societies, anyone looking for sane and humane leadership should look there.

In the last years of her life, Natasha became more and more devoted to public service. She saw herself as an advocate, and the two of us often kept a rather grueling schedule. Sometimes I wonder if the sheer workload killed her perhaps a bit earlier than she might have died anyway. But generally I don't think it was the work or the challenge as such that wore her down, because she reveled in making contact with people, finding allies, being heard, and appreciated. I do believe the appearance of sheer blank walls of bureacratic indifference, especially with the Schwarzenegger Administration that seemed determined to dilute the voices of actual disabled people (and still more poor people in general) with "balance" from corporate interests where they pretended to listen at all, was a bigger burden on her. At any rate, she told me that if the Governor vetoed a certain bill she was passionate about, it would literally break her heart, and less than a week after he did so at the end of September, she was in the hospital and dead, of heart failure, by October 5.

It is possible, I suppose, as her doctors maintained, that the long gradual failure of her heart was not in any way sped up by the stresses and anxieties we went through. But in any case, on issue after issue, even as she took hope in signs of progress and in successes at resisting the most barbaric assaults on her way of living, even as she looked forward to serious and helpful reforms she hoped to see, bureacratic delay kept a dead hand on the actualities.

Given the short span of life alloted her, I think that was quite criminal enough.