A Question of Privacy


Even before it’s begun, a new program designed to place nondisabled, HIV-positive people in workfare has reignited concerns about the misuse of medicaid records. Questions about medical confidentiality—now being explored by federal investigators—have made the necessarily delicate task of creating an HIV-specific workfare program that much trickier.

Since homeless and drug-addicted people are already required to work in exchange for benefits, the news that HIV-infected people on welfare would soon also be drafted into workfare was expected, if not entirely welcomed, by AIDS advocates. But some lawyers for people with HIV are taking issue with how the city is carrying out its program.

While the program is scheduled to begin sometime this year, tensions over its implementation started in October, after a phone call between Greg Caldwell, an official at the city’s Human Resources Administration, and attorney Hayley Gorenberg. According to Gorenberg, who works for Legal Services For New York City and heads the HIV Legal Advocacy Task Force, Caldwell told her the city was planning to cross-check medicaid records documenting the use of HIV medications against its own workfare records to identify able-bodied persons with AIDS for the program.

Caldwell, through HRA spokesperson Ruth Reinecke, insists that his statements were misinterpreted. Reinecke says the agency isn’t using medicaid records to recruit for its HIV-specific workfare program, but admits that the agency did “an aggregate search” of the medicaid database. That search, she said, revealed that more than 10,000 HIV-positive people might be eligible for the workfare program, without identifying them by name. Reinecke says the city decided against using that information not because of complaints or the federal investigation, but because “we found the search wasn’t giving us what we needed.” The city now says whatever workfare plan it ends up implementing for people with HIV will be voluntary. (Those deemed disabled will continue to be exempt from workfare requirements under the plan.)

But Gorenberg passed her understanding of the conversation—that the city would be searching medicaid records—on to other AIDS advocates. And the information ignited anger and fears about medical privacy that have yet to be resolved.

“If this [records search] happened, it’s the biggest violation of medical confidentiality in the state’s history,” says Michael Kink, legislative director for Housing Works, an AIDS housing agency that frequently butts heads with the Giuliani administration. “Using medicaid records for something that has nothing to do with medical care is illegal, improper, and flat-out offensive.”

Indeed, federal and state law prohibit using confidential medicaid records for nonmedical purposes. And another city plan that would have plumbed medicaid records for evidence of drug use is already the subject of federal and state investigations. HRA has since backed away from that effort.

Advocates say that these privacy disputes couldn’t come at a worse time, given that the state is beginning a names-reporting program for people with HIV in the next few months. The information collected in that program is supposed to be used only for public health purposes. “But,” says Catherine Hanssens, an attorney for the Lambda Legal Defense and Education Fund, the recent dispute over the HIV-specific workfare program “raises issues about how the use of protected information can change from what people understand it is going to be used for.”

Meanwhile, practical conflicts over putting people with HIV into workfare continue to brew. While HRA says its new program will spare people with HIV outdoor placements in the parks, sanitation, and transportation departments, for instance, some advocates say that making such accommodations won’t be enough.

“Just because a job is indoors doesn’t mean it’s necessarily appropriate,” says Katie Kelleher, a Legal Aid lawyer who handles disability cases. “Some people’s medication schedules require they be near a refrigerator. Or their medication makes them incredibly fatigued and they have to take a nap.”

HRA’s Reinecke insists the program is designed to address just these kinds of special needs (she says the agency has even anticipated the need for refrigerators). But advocates seem far from soothed. Kelleher predicts “disaster” for the program. And Hanssens sums up the city’s effort as “mean-spirited.”

Gorenberg seems to think more dialogue with the city would help. But that’s unlikely now. Since the privacy problem, Caldwell, who had met with Gorenberg’s HIV Legal Advocacy Task Force in the past, hasn’t been in touch with her.

“We’ve been iced out of the experience,” says Gorenberg. “Now there’s no possibility of doing anything constructive to prepare for what’s going to hit our clients.”

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