Not in SAF keeping

Think back to the early days of AIDS.

The days in the ‘80s when strange purple lesions began popping up on the bodies of hundreds of gay men across the country. The days when a seemingly common cold hung on indefinitely, turned into something else entirely and weakened a previously healthy person’s immune system to the point where they died—typically within a year of becoming ill. The days when AIDS didn’t yet have its name. The days when the best description the medical community could come up with about this new disease was to term it some kind of “gay cancer.” The days when no state or federal monies existed to care for AIDS patients and few doctors outside the urban centers of San Francisco and New York understood the disease. At that time, Sacramento residents who were suffering from this mysterious illness typically traveled to San Francisco for care.

It was against this backdrop, in 1983, that a group of individuals in Sacramento did something no one else in the region was willing or able to do: they formed an all-volunteer network providing one-on-one emotional and practical support to people infected with HIV/AIDS. Two years later, this grassroots coalition would establish itself as the nonprofit Sacramento AIDS Foundation (SAF), and for the next 10 years it would be the first stop for local residents living with the illness, providing in-home supportive care, food vouchers, housing assistance, companionship and case management.

As AIDS became understood and funding emerged, other organizations sprang up to help fill the growing need for services, but SAF was still the agency that people turned to first. It was seen as the big kid on the block—and for good reason.

In the decade between 1985-1995, SAF served thousands of clients—primarily gay men in the early years—through a variety of programs. In addition to its volunteer Hand-to-Hand program, which served between 150 and 175 clients per month, the Foundation’s largest programs provided in-home attendant care and case management, where home-health nurses and social workers would monitor clients’ individual health care and social services needs.

SAF was also the first organization in the region to offer anonymous HIV testing and, until 1995, it provided rental assistance to people living with HIV through a federally funded program from the U.S. Department of Housing and Urban Development.

But in the last six years, after incurring hundreds of thousands of dollars in debt, after nursing agencies servicing SAF clients had to sue to get paid the money SAF owed them, the Foundation released its entire client caseload, save for 50 adults and children being served through its volunteer programs. It ceased to provide HIV testing in 1998 and just last week announced that Steven Place—an apartment complex intended to house women and children with HIV/AIDS—is now up for sale.

Despite retaining its name, the Sacramento AIDS Foundation, for all intents and purposes, has given up the fight against AIDS, at least in terms of direct client services, and has now turned its attentions to the prevention of sexually transmitted diseases.

Other local AIDS service providers, however, claim the perception among the general public is that SAF is still the primary AIDS organization in the region.

Leaders of local AIDS charities say the truth can be found in the numbers, and they show that roughly 2,000 people living with AIDS in Sacramento County now get their medical care and social services through the Center for AIDS Research Education and Services (CARES), while another 700 get emotional and practical support from Breaking Barriers and still others get housing assistance through the Sacramento AIDS Housing Alliance.

The erosion in the Foundation’s direct services did not happen overnight and other service providers, CARES and Breaking Barriers among them, contend a trail of misguided decisions are to blame for SAF’s fall from leadership. The Foundation, however, blames inadequate state funding and escalating program costs for the organization’s need to dramatically change course.

In its heyday, SAF was the sole provider of case management services in Sacramento County, serving some 450 to 500 clients, with a program budget of about $500,000 going to direct client and administrative services.

According to Michael Lemon, SAF executive director, about $100,000 of these funds came from the county, while another $350,000 to $400,000 came from the federal Ryan White Care Act funds.

Problems began, SAF contends, when the county brought competition into the mix, deciding to open up case management funding to other providers. This allowed Breaking Barriers and the now-defunct Lambda AIDS Project into the program. As a result, both of these agencies received more than 50 clients apiece from the pool previously served by the Foundation, along with more than $125,000 to serve them, in addition to start-up costs.

As it would have been left with two-thirds of its clients and about half of its former funding, SAF refused to apply for funding, suddenly leaving program clients without services, at least temporarily. Today, Lemon characterizes the county’s actions as neither “appropriate, responsible nor workable.”

“It was the blackest day of my career,” Lemon said recently, recalling his feelings then. “Having to write those ‘dear client’ letters … I was in tears.”

But directors for the AIDS Housing Alliance, the Lambda AIDS Project and Breaking Barriers claim that SAF’s decision to withdraw from its case management contracts was fueled by an “all or nothing” mentality on the part of Lemon. He, they said, didn’t want to share, and so bowed out, rather than apply for funding. They further contend that SAF did nothing to facilitate the transition of its former client base to other agencies and never informed clients in writing about the program’s closure, wreaking havoc in the AIDS service community.

“I’m talking about clients who were literally dumped on their heads,” said Robert Nelson, former director of the Lambda AIDS Project. “[They were] pushed out of an agency, their care up [in the air]. They didn’t know where to go. When SAF dumped … its clients, people in the community were just shocked.”

AIDS Housing Alliance executive director Peter Feeley and others say the last six months of 1995 were spent identifying and enrolling clients who had been turned away from the Foundation.

“SAF did not write to the clients saying, ‘We’re closing down the case management program and we recommend you go to such-and-such agency,’ “ Feeley said. “No one told them what was happening. They had to go shop around.”

Nelson also maintained that when clients came to his agency for case management services after the shut-down of SAF’s program, he had problems getting the Foundation to provide verification of anyone’s HIV status, let alone provide case management notes on former clients.

“Even with a signed release form, SAF would often refuse to release a client’s information,” Nelson claimed, adding that a round-table discussion between local AIDS service providers, including SAF, later rectified the situation.

Although Lemon said someone else at his agency might have been involved in such a meeting, he hotly denied ever having deprived Nelson, or anyone else, access to client files.

Despite the denial, John Rambo, executive director for Breaking Barriers, said the Foundation’s withdrawal from its case management program is “[Illustrative] of the continual retreat from services [by SAF] that’s gone on for the last six years.”

The next move the Foundation made would end up being as controversial as its last, leaving many AIDS service providers, former SAF employees and residents questioning the organization’s commitment to AIDS clients in general.

The controversy surrounded—and still surrounds—a $1 million donation SAF received sometime in 1997 and how the gift was used. Lemon confirmed both receiving the gift and using a portion of the money to purchase Steven Place, an apartment complex at 2411 & 2415 F St. But while Lemon said the complex, from the outset, was designed to house anyone with a catastrophic illness, including women and children with HIV/AIDS, former SAF employees and others in the AIDS community maintain that isn’t the case. In fact, many remember that the funding—and subsequent housing—was specifically to serve women and children with HIV/AIDS. The mission of the complex was quite well-publicized and tied directly to the Steven Dawson Fund—a trust to serve women and children started by longtime SAF supporter Steven Dawson prior to his death in 1997.

“Everyone thought, ‘what a great idea,’ “ the Housing Alliance’s Feeley said. “There were a lot of services for men with HIV/AIDS, though never enough housing, but nothing really for women and their children. [SAF] was filling a niche.”

Lemon continues to maintain, however, that the $1 million donation was made out not to the Steven Dawson Fund, but to SAF, and had no conditions placed on it.

Occupancy at Steven Place has been spotty. Today, only five people living in the 16-unit complex have HIV or AIDS, Lemon confirmed, and two others have other “life-threatening” illnesses. The rest of the apartments are rented to the general public, at market rates, he said. According to Lemon, seven out of the 16 units are subsidized, anywhere between 5 percent and 100 percent, and the nonprofit takes in about $4,500 per month, on average, in rents.

Steven Place has also had problems with keeping tenants once they move in. Since opening in February 1999, seven people—women and children—have either been evicted or have chosen to leave. In fact, some former HIV/AIDS tenants of Steven Place also said that they were told they were moving into a complex that would house only women and children with HIV/AIDS, only to find people outside of that population living there. Some also contend that rules were changed once they moved in and their lives “monitored.”

Linda Austin, 51, was one such tenant, moving into Steven Place in May 1999 and leaving in August. Austin said her troubles began about a month after she got to Steven Place and centered on Lemon’s complaints that her boyfriend and caregiver, Victor Foster, was spending too much time at Austin’s apartment.

Austin contends that when she moved into the complex, her rental agreement had no language in it prohibiting the stay of overnight guests. And, although Foster had his own apartment at the Pensione K complex at 17th and K streets, he would often stay over at Austin’s place. In June 1999, one month after she moved in, Austin said her health was so poor that Foster spent the bulk of the month at her place, watching over her.

Austin’s AIDS status has left her wheelchair-bound, and has led at various times to kidney failure, pneumonia, heart failure and blood poisoning. She takes a regimen of 26 pills a day.

“Mike [Lemon] switched the rules on us,” she said recently, from her own apartment at the Pensione K. “He said that Victor couldn’t spend more than three hours a day at my place and only one night per month. And I’m thinking, ‘What right does he have?’ “

For a large studio, Austin paid $395 per month directly to SAF, while the federal Housing Opportunities for Persons with AIDS paid the remainder of Austin’s rent directly to the Foundation.

Though she said she loved her apartment and the camaraderie she had with the other women there, Austin said the stress that arose when Lemon began monitoring the time her boyfriend spent at her place became too much to bear and she left.

While Lemon conceded that Austin’s rental agreement said nothing about prohibiting overnight guests, he claimed the “program rules” were thoroughly explained to Austin and other tenants.

“We don’t have many rules,” Lemon said. “But one of them is that you can’t have a man living here with you. An HIV-infected woman living with a man is of very little interest to the people we do fund-raising with. They don’t want to pay for that. If you’re not getting a subsidy, that’s another thing altogether.”

Lemon’s explanation seems to differ somewhat with his previous contention that Steven Place was not set up solely to serve women and children infected with HIV/AIDS. People like the Housing Alliance’s Feeley said they don’t understand how the Foundation could continue to hold AIDS fund-raisers, like its annual Great Gatsby event—which, last year, netted between $75,000 to $85,000 for Steven Place after expenses—and continue to house clients who did not have an HIV diagnosis.

But all that may be moot now, given SAF’s recent announcement that Steven Place was put on the market for $950,000. (Lemon confirmed May 24 that the Foundation has already received an offer close to its asking price.) Money from the sale of the complex will go to retire SAF’s current debt of some $370,000—the bulk of which was incurred for home-health services provided to clients in another SAF program in fiscal year 1999-2000, Lemon said.

All of which makes Daniel Farley, a long-time friend of Steven Dawson and principle fund-raiser for Steven Place and the Steven Dawson Fund, “outraged.”

“This is being put on the market to retire a debt that’s entirely independent of Steven Place,” Farley said. “It’s wrong and it’s a violation of Steven Dawson’s memory and everything I and the people who donated money for Steven Place were led to believe.”

Farley said he has personally helped raise more than $1.4 million for the fund, including soliciting the $1 million donation from overseas that went to buy Steven Place, in addition to helping raise $150,000 annually for the upkeep of the complex. In light of Lemon’s announcement regarding the sale, however, Farley said he would not deliver the bulk of the annual gift for 2001, originally scheduled to be delivered last week.

“This [sale] sickens me,” Farley said. “It’s the worst kind of betrayal.”

All of this also leaves a bad taste in the mouths of Feeley and others who maintain that the shortage of housing for people with HIV/AIDS, especially women and children, makes the elimination of Steven Place a “tragedy.”

Both former tenants and other AIDS service providers contend that the controversy surrounding Steven Place is but one example of an agency that has lost its way; an agency that does little to help the very population on which its reputation was founded.

But getting those in the community who have witnessed the Foundation’s fall from greatness to talk on the record has been difficult. In fact, although reports of displeasure with one Foundation decision or another have made their way to the surface over the years, few people contacted for this article would talk in depth until an agreement was made between them that everyone would meet at the same time and talk on the record.

“SAF is identified in the minds of the public as the AIDS organization in the community,” said Marty Keale, executive director of CARES. “And I think—we all think—there is a real danger of backlash on other AIDS organizations in the city if anyone starts pointing fingers.”

Added Breaking Barriers’ Rambo: “Frankly, we’ve been afraid … that [pointing out problems] with the Foundation would make it difficult for every other [service] provider, in terms of community support. We don’t want to get painted with the same brush.”

But three incidents since last summer, including the closure of the SAF’s last government-funded program that resulted in the release of its caseload, convinced many to put an end to the silence. They are now convinced that to remain silent is tantamount to allowing a myth to continue unabated.

By 1999, SAF had developed a reputation for not paying its bills on time. STAT Nursing Services, for example, threatened several times to sue SAF before being paid some $200,000 for services provided through 1998—a fact that is not disputed by the Foundation. Rx Staffing and Home Care, who was the primary subcontractor providing in-home nursing to SAF clients after STAT Nursing withdrew from its contract, actually filed suit in June 2000 for more than $90,000 it was owed for services provided from July 1, 1999, through June 30, 2000. Court records show the suit was withdrawn after SAF agreed to pay its bills in an out-of-court settlement. The case was dismissed November 29, 2000, according to Sheila Lamb Carroll, attorney for Rx Staffing.

The state Office of AIDS, which oversees the AIDS Medi-Cal Waiver Program that reimbursed SAF for expenses connected to in-home attendant care, confirmed that Rx Staffing and others had contacted state program officials three times in the last six years complaining that SAF had failed to pay them for services provided.

Although officials would not say how much SAF was in arrears at any one time, Jan Vick, chief of community-based care for the state Office of AIDS, said that while her department was concerned about the reports it was getting regarding delinquent payments, it had no reason to pull the Foundation’s funding because its programs were very well-run.

But in July 2000, Vick learned that the Foundation withdrew from its contract to provide in-home support services, leaving some 200 clients without care providers, at least temporarily.

“As far as we were concerned, their decision to terminate came out of the blue,” Vick said. “We had already approved their funding for this [fiscal] year when they withdrew.”

Not so, Lemon said, charging that Vick and others knew exactly what was coming after Lemon went to her and explained that state reimbursements did not match the Foundation’s expenses.

The Foundation received about $1.5 million per year to provide in-home attendant care for about 220 clients, Lemon said—about $270,000 less than what he says it cost to serve them. And while the Legislature recently agreed to another increase in the amount home health care agencies can charge, Lemon angrily notes that organizations like his have not had an increase in state reimbursements for administrative services in nine years.

“There’s a constant deficit,” Lemon said. “Every month, year after year, our expenses went up and there was no relief. It’s like talking to brain-dead people. They refuse to recognize, for example, that an audit that cost you $7,000 nine years ago now costs $20,000. That cost is not reimbursable, yet they demand you have that level of audit.”

Nonprofits that receive more than $300,000 per year in government grants must submit an audit to the state each year, providing a breakdown of where the money goes and what services it provides, Vick confirmed.

Lemon contends that he went to Vick last summer and outlined the organization’s plight, only to be told that the Foundation was “out of compliance” because they weren’t able to pay their subcontractors and had to remedy the situation immediately.

“That’s all we got from her,” Lemon said. “That’s it. It’s absolutely not the case that they had no warning … they knew we were in trouble. After I reported the [meeting] to my board, [it] said, ‘There’s no way we can do this any longer.’ “

Vick acknowledged knowing that many AIDS charities have to augment what they get from the state with money from other sources to make ends meet.

“The rates that we’re able to pay don’t make it self-sufficient,” Vick conceded. “It’s a concern of ours but one we can’t readily solve.”

Although many clients re-established care with Rx Staffing through other agencies after the Foundation stopped serving them, even Lemon concedes that more than a few clients felt abandoned.

“The other day, a guy said to me, ‘I always thought that when I got really, really sick, the Foundation would be there for me, like I was for them as a volunteer.’ I understand that set of feelings,” Lemon said.

“The other side, however, [is] this endless processing on the provider side of the community who see themselves as doing the only valuable job in the county and that SAF is extracting copious amounts of money to do nothing.” He added that the organization’s in-home attendant care and case management programs were among the best in the state from 1987-2000. “We did it as long as we could, suffering from a deficit of funding until it became no longer tenable.”

So with the agency more than $300,000 in debt and its client base about to be shifted to other agencies because the Foundation could no longer afford to care for them, Lemon, along with four other SAF employees and board members—including paid SAF fund-raiser Georgia Mering and board president Scott Christensen—flew to South Africa in August 2000 for the World AIDS Conference, at a cost to SAF of $25,000.

When asked to comment on the questionable timing and nature of the trip, Lemon said simply that it was planned the previous year, when the Foundation had “no idea” that it would be releasing its client base and that he still felt it was a worthwhile expense, given the agency’s decision last summer to begin shifting its focus from HIV/AIDS to prevention of all sexually transmitted diseases.

“There was a lot of information at the conference about prevention and that’s where we were headed,” he said.

But rather than calm the AIDS community, Lemon’s confirmation that SAF has now shifted its focus to the prevention of STDs and away from direct HIV/AIDS services has only served to arouse suspicion and anger among other AIDS service providers and donors in the community.

And, if the trip to South Africa wasn’t enough to raise concerns within the AIDS community, the Foundation’s continued fund-raising activities after it no longer provided direct client services to persons with HIV/AIDS has proved even more controversial.

There was no mention of the SAF’s change in mission at the Foundation’s March 25 fund-raiser, A Hollywood Affair, held on Oscar night. The mood was jovial and festive within the ballroom at the Doubletree Hotel, where some 500 to 600 donors paid $150 apiece to attend the black-tie dinner/awards show and silent auction. And while board members touted the “success” of Steven Place and its continued Hand-to-Hand program, no one spoke of the Foundation’s debt, or of the coming problems with Steven Place.

A page out of the event’s program read, in part, “The Sacramento AIDS Foundation has a two-fold mission: To stop the spread of HIV infection through education and to provide care and support for people living with the HIV disease and AIDS.”

While Lemon said he could not yet confirm how much money this year’s event netted for the Foundation, fund-raising in general, he claimed, is down “drastically” for 2000-2001 from a high in 1999-2000 of $842,000.

“I’d say we’d be lucky to get, at best, $250,000,” Lemon claimed. He recently said that other fund-raisers have also “lost money.”

The Foundation’s five-year STD prevention campaign to produce public service messages for television got underway last November, with the first spot airing on KXTV-10 in January, and Lemon confirmed that with professionally produced PSAs costing between $50,000-$80,000 apiece, fund-raising will continue.

And, he’s not apologizing for the continued fund-raising, the drop in SAF’s client base or for the Foundation’s new mission.

“All STDs are communicable in the same manner,” Lemon said. “So, we’ve downsized our business and reinvented ourselves with the focus on prevention, because that’s where we see an unmet need.”

Lemon noted, also, that both the Hand-to-Hand and Little Hands programs will continue.

But he is angered, he said, by those who question the organization’s commitment to serving Sacramento’s HIV- and AIDS-infected community, especially given the agency’s lead role in providing AIDS services in its first decade.

“We’ve always been [at] the forefront in this region, developing new programs to meet unmet needs … and if people don’t see this [prevention] campaign as a viable AIDS project or program, then I’m sorry, but I disagree with them. And I think it’s a sorry state of affairs that they can’t support SAF with its new emphasis on prevention.”

But those at CARES, Breaking Barriers and the AIDS Housing Alliance, along with others, claim their concern isn’t as much with the SAF’s new mission as it is with the agency’s misrepresentation of itself now that its mission has changed.

Said CARES’ Marty Keale: “In terms of direct [client] services, the numbers speak for themselves. If [SAF] wants to keep the same name and go on to a broader mission, that’s their business. But I can definitely see how people could perceive them as misrepresenting [themselves].”

Given the Sacramento AIDS Foundation’s historical stature in the community, Feeley and others said, the organization owes it to the community at large to be upfront about its new goals, rather than allowing the general public to assume that money given to the AIDS Foundation goes to direct HIV/AIDS services.

“Is it fair to raise money in the name of AIDS when you’re taking the money and spending it, in part, to help people with other illnesses? Or to run a prevention campaign that doesn’t solely focus on HIV/AIDS?" Feeley asked. "I think it’s a bit disingenuous."