After 20 years as a social worker, Debby Elliott doesn't usually weep over her clients. Louis was different.
When Elliott met Louis last spring, he was the Arizona Legislature's idea of a disposable human being. He was a homeless, mentally ill, HIV-positive heroin addict.
In another lifetime, Louis had been a computer analyst on Wall Street. During lucid moments, he lovingly called Elliott "Boo" and spoke of his grandmother back East, who always made sure he dressed in tailored suits.
"He told me that I had never seen him when he was really on top of his game, and that he was gonna get his life straightened out, and he'd show up in an Armani suit," recalls Elliott, who met Louis when he showed up at HIV Care Directions, the non-profit agency where she works.
Like any junkie, Louis had a dark side, too.
"He would scream at the top of his lungs and call people every foul name imaginable. I mean, you had to work really hard to find the kernels of nice stuff in there," Elliott says.
But, she adds, "As difficult as he was, this was somebody who was trying really desperately hard to work with the little bit of mental health that he had, to try to pull together and to try to seek out some relief from his problems."
Elliott knew that substance-abuse treatment would not save Louis' life; he'd developed full-blown AIDS, and he looked like it. But Louis and she both wanted to improve the quality of the time he had left. If she could get him into an inpatient treatment program, she reasoned, he would have a chance.
Louis earnestly wanted treatment for his drug addiction. By the time he found Elliott, he had exhausted his options. Although he was a veteran, the VA hospital would no longer treat him because of his behavior problems. Although he was destitute, he didn't qualify for Medicaid because he received disability payments. And although he exhibited signs of mental illness, the state refused to categorize Louis as "seriously mentally ill"--the magic designation that would have qualified him for services--because his mental problems were diagnosed as HIV-related dementia. Incredibly, the state has decided that psychiatric disorders caused by medical conditions do not qualify as serious mental illness.
"He fell through a lot of holes. Every hole imaginable, actually," Elliott says. "When I finally got him, he really had no place to turn anymore."
Elliott had almost given up when she recalled that a $500,000 federal grant had been awarded to the state, earmarked specifically for substance-abuse treatment for people with HIV or at risk of getting it. The theory behind the grant is that substance abusers--through needles or unprotected sex--are more likely to contract HIV than the mainstream population. So money was dedicated for counseling both before and after HIV testing, as well as to treatment for people like Louis.
Elliott tried to get Louis signed up for the program. But when she called the state Department of Health Services, Elliott was told that instead of being spent on the HIV population, most of that $500,000 had been tossed into the mainstream. And now it was gone.
Debby Elliott and her colleagues have spent their careers wading through paperwork, trying to navigate the labyrinth of government bureaucracy that shields services for their clients.
Elliott was alarmed that this substance-abuse money was gone, and that no one seemed too concerned with accounting for it. After all, this federal grant came with a mandate: Use it--correctly--or lose it. In this case, there is more than just $500,000 at stake; the HIV grant was part of a $20 million annual grant for substance-abuse treatment.
(A spokesman for the federal grant administrator refused to comment, saying that the matter is under investigation.)
After Elliott made inquiries, the state was able to say that no more than $150,000 went to HIV-related substance-abuse treatment.
"When we asked, 'What do you suppose happened with the rest of the money?' we were told that we didn't need to worry about it, that it went for treatment of people," Elliott recalls.
But not for treatment of people with HIV, as the rules specify.
So Elliott got together with other HIV care providers and formed the Substance Abuse HIV Working Group. They had two goals: first, to get a full accounting for that $500,000, and second, to generally increase the quality of HIV/substance-abuse services.
The group quickly abandoned the second goal to focus on the first--never imagining that a year later, it still would have few answers, and no money.
In that year, the group held meeting after meeting--including two in the governor's office--and dwindled from about 40 members to four: Elliott, activists Ken Bixler and Leslie Garner and Maricopa County HIV service coordinator David Paquette.
While state health apparatchiks were feigning concern over possible malfeasance, they were genuinely concerned that the public might find out about it. They told the activists that any publicity might jeopardize the chances that the missing money might be recouped for HIV/substance-abuse services.
Elliott, et al., nonetheless had enough of the state's runaround. They broke their yearlong silence last week. (Paquette did not return my calls; the others say he does not want to jeopardize his job with the county.)
Elliott and her peers say they had difficulty working with just about everyone they encountered at the state Department of Health Services--from low-level staffers to director James Allen.
"[Allen] told us that he was very disappointed in us that we weren't there to talk about programs, that all we wanted to talk about was money," Elliott recalls.
"We were told on more than two occasions that there was not support in the Legislature and there was not a lot of support on a community basis for this [HIV] population, that it was not a sympathetic one."
Bixler adds, "They have consistently articulated, 'Your folks are less worthy than other folks. So just be happy with what you get.'"
After a few false starts, the HIV Substance Abuse Working Group has been promised that the state will make it up to them by devoting $350,000 to HIV/substance-abuse treatment.
Brian McNeil, DHS deputy director for budget and policy, was refreshingly candid when I spoke to him last week. He admits that the state erred by failing to allocate the funds to the HIV population and acknowledges that once brought to DHS' attention, the matter was mishandled. He recognizes that the feds could swoop in and take money away as punishment for noncompliance. He insists that ValueOptions, the state's new behavioral-health-care provider, is taking steps to create programs that will offer treatment to substance abusers with HIV.
And McNeil vows that he has a plan to fix the problem and produce that $350,000--but that, he says, he can't talk about.
"Over the last few weeks," McNeil assures me, "efforts have stepped up considerably to get some resolution to this issue. Not just verbal resolution, but to get some funds to rectify some of this stuff. I feel very confident that that is going to happen, but timing is everything."
Ken Bixler is skeptical.
"Where they're going to pull that money from, I don't know--and it doesn't give me a warm fuzzy," he says.
McNeil is circumspect: "We are working on identifying a potential source of revenue."
So Debby Elliott might actually get some satisfaction.
Louis won't. He died last month.
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