On the surface, September’s Walk to Stop AIDS at Sawyer Point looked like past versions of the nonprofit’s 22-year-old fund-raiser. On stage, the Cincinnati Men’s Chorus sang “Seasons of Love” from Rent and Sister Sledge’s “We Are Family.” Young women led line dancing to warm up the cheering walkers and a steady stream of tiny dogs tagged after their owners. Below the festive surface, though, everything had changed. Organizers and many volunteers knew what the agency was going through: The annual Walk to Stop AIDS was a fund-raiser for an organization that was itself fighting for life.
In March 2011, Stop AIDS, founded in 1983 as AIDS Volunteers of Cincinnati (AVOC), lost all federal funding for its HIV/AIDS case management services. Instead, the funding—and the work—was shifted to Caracole, an agency which provides housing for people with AIDS.
It was a startling development for the highly-regarded nonprofit. In the mid-1980s, AVOC had been the first non-medical organization to address the needs of the city’s growing HIV-positive population, and over the years the Ohio Department of Health regularly pointed to its programs as exemplary, calling on staff members to present their work to other communities and in conferences around the state. But now, Stop AIDS was in trouble.
Caracole, founded in 1987, and Stop AIDS had long been friendly partners. Even the staffs of the agencies were intertwined. Caracole Executive Director Linda Seiter had been the very first executive director of AVOC in 1988. “We really relied on each other,” says Seiter of the agencies’ connection. “We worked very collaboratively.”
Given the circumstances, shifting services between the nonprofits went smoothly. Records were transferred, Caracole hired a number of Stop AIDS case managers, and by April 1, 2,400 HIV-infected men and women in the eight-county service area had made the transition without a missing a beat.
But the new arrangement leaves gaps in local HIV/AIDS services—especially when it comes to education and testing. Meanwhile, Stop AIDS has survived as a bare bones operation, though hard feelings persist. “It was really stupid,” says Stop AIDS Board Vice President Kathy Nardiello of the funding denial. “The organization hadn’t changed. It really didn’t make any sense to me.”
Now Nardiello and other Stop AIDS supporters find themselves back where their efforts started in 1985: trying to breathe life into a small, struggling nonprofit. And trying to carry a message about a disease that may have faded from the overall public consciousness but just won’t go away.
When Nardiello got involved in the local HIV/AIDS community back in the mid-1980s, volunteers did everything from carrying patients to ambulances when EMS drivers refused to touch them to making meals for devastated loved ones. Nardiello, a sales professional, helped with fund-raising and organized the agency’s signature event, the Walk to Stop AIDS.
She says that AVOC grew quickly to become “the pillar and star of the delivery care services in the state.” One example: the group’s “Prevention for Positives” program ran support groups for people with HIV. Some outreach workers went to local bars to educate gay men about AIDs; others focused their efforts on women, minorities, and young people.
Linda Seiter of Caracole, who knows Stop AIDS’ history as well as anyone, recounts its development from an all-volunteer effort housed in a church basement into a professionally staffed, wide-ranging agency. “People were so unprepared,” Seiter says. She remembers young gay men with no place to go after they were kicked out of their parents’ homes, and accomplished professionals who were, she says, “working at P&G and Fifth Third all day and coming home and caring for their dying boyfriends.” In those days, an AIDs patient’s life expectancy was less than two years. Now, newly diagnosed patients can sometimes manage the condition independently for years and go months between doctor visits.
AVOC expanded its services, adding, among other things, a mobile van that offered free, anonymous testing with while-you-wait results. Staff traveled to homeless shelters and juvenile detention centers to talk about prevention and treatment, and case managers were hired to help the growing number of low-income clients access health care.
By last year, Stop AIDS was testing 3,000 people for HIV annually—more than any other organization in Greater Cincinnati. The group’s education outreach worked with more than 20,000 people each year, often at events such as the 2010 Black Family Reunion, where Cheryl Hutchins—an HIV testing counselor and women’s outreach educator—offered information and HIV tests. An important part of Hutchins’s job involved working with local minority communities, from churches to community councils. “Socioeconomics has an impact on HIV more than any other disease,” she says. “A lot of times, poor women are at a disadvantage. Unfortunately, a lot of those women are black.”
As it added employees and services, the name AVOC no longer made sense. So, in 2007, the local design firm LPK helped rebrand the agency, changing its name to Stop AIDS. The mission didn’t change, says Hutchins. It remained, she says, “Prevention, education, care.”
The grant that Stop AIDS lost last March was state-administered federal money provided through the Ryan White Care Act. Named after the Indiana teenager with hemophilia who died of AIDS in 1990, Ryan White funds are earmarked for treatment, medical care, and other support for people with HIV/AIDS who are uninsured or under-insured. Stop AIDS’s Ryan White monies—in excess of $700,000 a year—were earmarked for case management services, and they represented more than half of the agency’s operating budget.
The three-year grant, up for renewal last spring, was thwarted by an independent audit that painted a financially wobbly picture of Stop AIDS. Largely grant-dependent and saddled with shallow cash reserves, at the end of 2009 Stop AIDS was operating at a deficit with negative working capital and negative unrestricted net assets. Among the problems: the agency was on the hook for more than $100,000 in federal income tax underpayments for 2008 and ’09. It was also paying back to the state of Ohio portions of prior years’ funding that had not been properly disbursed. The audit describes an organization without a financial anchor, where staff had no functioning process for checks and balances on expenditures and reimbursements. The auditors questioned whether Stop AIDS could remain a “going concern.”
In January, when Stop AIDS applied for the grant renewal, the Ohio Department of Health took note of the problems and, on February 28, notified the organization that Stop AIDS would not be eligible to renew the $700,000 grant when it expired in a month. The state would need to find another nonprofit to receive the funds and carry on with the case management—and they’d have to find it virtually on the spot.
After breaking the news to her board and staff, Stop AIDS’s CEO Amy McMahon called Caracole. Caracole, which began in 1987 as an adult care facility, had been receiving a relatively small amount of Ryan White funding for several years to help manage 250 cases of residents in three of its housing programs. If there was an agency that could keep the funding local, McMahon reasoned, it was Caracole. So McMahon urged Caracole to apply for the funds.
“I was surprised,” says Seiter. Her nonprofit had a related, but distinctly different role in the HIV/AIDS community. She wasn’t sure if an expansion of services would work. But after consulting with staff and board members, Seiter decided to apply for the newly available funds. “I felt good about the services we have to offer,” she says. “It just made sense.”
Caracole got the funding and the impact was dramatic and immediate. The agency’s case-load tripled and the staff swelled from 26 to 40 to serve a client base now spread all over southwest Ohio. “I can’t say enough about the good work that was done on behalf of both agencies,” says Jay Carey, management analyst for Ryan White funds with Ohio’s Department of Health. He worked closely with Caracole and Stop AIDS as they moved the case management details from one to the other. He says everyone in both agencies put the clients’ best interests first.
As unfortunate and abrupt as the disruption was, Carey maintains that his department had no choice but to not renew Stop AIDS’ funding. “From a clinical perspective, they did very good work at Stop AIDS. It’s very clear that everyone there was really committed,” he says. The problem “was the financial situation of the agency.” Stop AIDS had not complied with the fiscal requirements of the Ryan White funds. “We had to move in another direction,” Carey says.
At Stop AIDS, the initial shock wore off, and after clients were notified and records transferred, confusion and anger set in. To Amy McMahon, it seems that factors beyond the agency’s own finances must have played a role. “The budget issues facing the state were part of this,” she says. She believes the state’s aim was to consolidate services, lower administrative overhead, and ultimately cut back on the total funds they distribute.
McMahon and others remain frustrated with the state’s abrupt action. The agency had been given no warning, no “period of cure,” according to Kathy Nardiello, to address any of the state’s concerns. “I believe that if the Ohio Department of Health wanted to have a consolidation, they should have told us,” she says.
Nardiello readily admits that Stop AIDS did not have cash reserves, and dips in donations through the mid-2000s had definitely impacted the bottom line. But the organization did have assets, including a building in Over-the-Rhine and the mobile testing van, that proved its stability. “We didn’t have a lot of money in the bank,” Nardiello admits. “But it had never been an issue before.”
Without cash reserves, the de-funding of Stop AIDS case management services meant that other efforts ground to a halt too. When Stop AIDS shut down its Findlay Street building in April, the community lost the only agency in town with a major focus on awareness and prevention. “Closing our doors doesn’t leave the community in a better place,” Nardiello maintains. She points out some obvious problems. While HIV testing remains available at the city’s health department, Planned Parenthood, and University Hospital’s Emergency Room, no source provides people who want to be tested with the kind of anonymity and case management follow-up that had been available through Stop AIDS. In addition, no other agency has the ability to provide the kind of outreach programs that had long been Stop AIDS’s forte.
“The gap in the education piece is huge,” agrees Seiter. “How do you minimize transmission if you don’t educate people about what to do to protect themselves?”
As Caracole adapts to its much-expanded role in the local HIV/AIDS community, Nardiello and a passionate core of executive board members have rededicated themselves to filling that gap. “We have tailored our mission,” Nardiello explains. The goal now is to educate to prevent HIV infection. Stop AIDS’s OTR office was reopened in June and is again offering free testing services five days a week. McMahon’s position has been eliminated (she now teaches at University of Cincinnati’s School of Social Work), but board members have pieced together enough funding and hope to hire a program director soon. Plans for 2012 also include returning with the Stop AIDS van to the Black Family Reunion and other community events, allowing for mobile HIV testing as well as get-out-the-word information. When it comes to awareness and education, “we are confident we do it better than anybody else,” Nardiello says. “We’re still putting condoms out in bars, we have a website up that answers questions, we are updating our brochure. We will continue to provide the programs we’ve developed. We know those populations that need to be served.”
Despite her efforts over the past two decades, Nardiello is in many ways back where she started when she began volunteering for AVOC: she’s working with a team of highly motivated volunteers to help create—well, rebuild—a sustainable HIV/AIDS resource center. What remains to be seen is how much public support will transfer from the organization’s better-funded, better-staffed days. Nardiello calls this fall’s walk a “success,” but the group netted only about half the proceeds of prior years. And it’s hard not to wonder how the shift in the HIV/AIDS landscape, and new competition for funding, will ultimately impact the decades-old working relationship between Stop AIDS and Caracole.
For now, the organizations seem to be on the same page. Last year, 26 percent of the HIV-positive clients in Caracole housing were under the age of 26; the youngest was 18. “This is a really bad thing,” Seiter points out. Which is why Nardiello is determined now, as much as ever, to revive Stop AIDS and refine its mission. “There is still prevention education that needs to happen,” she says.
Illustration by Tang Yau Hoong.Originally published in the January 2012 issue.
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