Amid financial problems and client charges of poor service, AIDS Response Knoxville finds itself trying to regroup.
by Betty Bean
The tables up front in the Crescent Moon Cafe were set for a Mexican buffet, and the late Saturday afternoon cooking smells wafting out of the kitchen were irresistible. There was going to be a margarita bar in the corner, and owner Terri Korom had donated the restaurant and a large personal sweat equity to the evening fund-raiser. Board members of AIDS Response Knoxville were hoping to raise $2,000, a sum that once would have been considered paltry by an agency known for far more lavish entertainment.
The money will go toward ARK's operating expenses, to pay for things like rent and salaries, which aren't typically covered by government grants earmarked for specific purposes, like client services. Unlike that Saturday's more modest affair, those glitzy events of the past came with sizable price tags. These days, ARK supporters say, $2,000 goes a long way.
"The philosophy of fund-raisers has changed," says ARK board treasurer Mike Bryan, who is seated at a table in back with board president Lofton Stuart and vice president Kevin Jeske. "The fund-raisers are smaller now, with individuals hosting them and absorbing the costs. We have made hard decisions to refocus this agency and take it in a new direction."
In the view of ARK's critics, however, the hard decisions are too little and come too late. They say the organization long ago lost sight of its original mission and became a bureaucracy—sluggish, uncaring, retaliatory toward its critics, corrupt. These are perilous times for East Tennessee's largest AIDS service organization, and its survival may well hinge on what happens in the next few months. ARK is at a crossroads.
Stuart, Jeske and Bryan concede that ARK has accumulated many critics over the years, but say the problems mostly stem from poor public relations and rivals with axes to grind. They insist that there is still important work to be done and that a retooled ARK is the agency best suited to do it.
Back in January, the news broke that ARK was losing key grant money for education and prevention and that Executive Director Dawn Nickoloff (whom Metro Pulse has been unable to locate) had been let go. This sparked hopes that the organization was going to become less bureaucratic and more volunteer-oriented. Lofton Stuart found himself spending most of his free time on ARK work, and was willing to concede that the board "...did not take as active a role as maybe we could, or should have. That has completely changed now."
He said a core group of ARK volunteers has become involved in the day-to-day workings of the office, "Asking questions, supervising management decisions, evaluating the needs, focus and direction of the agency. We made really tough decisions to eliminate spending not directly related to the focus of the agency. The decision was made by the board to refocus our efforts toward what ARK was founded for in the first place—client services."
"They may have done their dirty laundry, but they forgot to bleach their whites," says Gary Berthiaume, who has a host of complaints about the organization, and one of them—that as a client he suffered sexual abuse at the hands of a former ARK employee—troubles him so much that he is out looking for a lawyer. His anger has been compounded by the agency's reaction to him, which he describes as "character assassination."
"Their response when I complained was to tell me they couldn't find my records, and that they'd give me a call when they found them. I'm still waiting... Now they say my records don't exist. I went to them as a client and as a volunteer in 1992... They say I'm just a 'sick' man, and I'm so tired of being called a 'bitter old queen' that I could scream."
(Note: A member of the ARK board, who called this reporter to "set the record straight," said Berthiaume is "very ill," and "has never been associated with ARK as a client or as a volunteer or in any way whatsoever." Berthiaume, however, has correspondence from ARK addressing him as a "volunteer/client." Others connected with ARK in 1992 recall that he led a support group and remember him answering the ARK office telephone, and Lofton Stuart says he has investigated and found that Berthiaume indeed was an ARK client. Jeske says the former ARK employee accused by Berthiaume admitted "making mistakes," was removed from contact with clients, and eventually left the agency. This employee's name came up more than once in conversations with ARK clients.)
A current ARK client, one of many who contacted Metro Pulse when they heard this article was in the works, says he fears losing access to ARK benefits like help with housing and medicine if his name is used. He disputes the contention that new focus has been placed on client services:
"Make no mistake—this is still a grant writing machine... The focus is so grant oriented, and I don't feel like the bulk of the funds are coming down to the client... If I put in 10 calls to that office, nine of them would not be returned. They are an extremely reactive organization, and a lot of clients do not have the energy to constantly call and ask 'Did you do this, or this?' There is no client support there... Other organizations I have been exposed to have never had a bit of problem—they are in the sensitivity business... this is not a sensitive organization—I feel it is very punitive..."
Jeske, who was ARK's director of educational services and an ARK employee for four years prior to joining the board in November, says he knows that some people consider him to be "part of the problem." Stuart says he asked Jeske to join the board because of his inside-out knowledge of the agency.
Jeske says the agency is hamstrung by client confidentiality requirements, and cannot defend itself: "The hurtful thing to me is witnessing the hard work that goes on there while suffering attacks from people with an ax to grind. There are so many things we just cannot tell you."
AIDS Response Knoxville was established in 1985 to help people who were dying of a strange new disease. In the early days, when the stigma was great and resources scant, a solid core of volunteers, drawn mostly from the population hardest-hit by the epidemic—gay men—worked at projects ranging from educational programs in the schools to providing basic needs like food, transportation, housing and emotional support to those in need.
The Rev. Bob Galloway, the first minister at the Metropolitan Community Church, was one of the founders. He remembers when the agency was run on a shoestring and survived disasters like losing its offices to an arsonist in 1991. Money was scarce, but volunteers like Nelda Najem gave unstintingly of their time taking AIDS patients to the hospital, or to the support group meetings that sometimes amounted to the only social interaction they had. Najem was an active member of ARK's Buddy Program, which paired volunteers and ARK clients.
"My time was what I had to give—if they still had the Buddy Program, I would still be giving. But they just quit contacting me to do stuff for people. They did keep contacting me by mail to get donations, though. They claimed to be continuing that program, but they got to the point where they didn't have hands-on help. I don't understand it, since the main goal was to be there for people who needed help. Otherwise, what good is it? It's become just another business."
As Galloway recalls, ARK originally had a three-pronged mission—education and prevention, support services and advocacy. One of the founders, Fred Horowitz, who died in 1990, was the first person with AIDS (PWA) to visit area schools to talk about the disease. Help was delivered in a personal, hands-on fashion, as volunteers sat with the ill and the dying, changing diapers and holding hands. Members of the gay community planned and financed fund-raisers and celebrations, and surviving families became involved.
Galloway resigned as president of the board of directors in 1991.
"ARK was starting to move toward a more professional image, and I just have some rather strong feelings about social service agencies where more money is spent on salaries than on helping people," he says. He ended his association with ARK a couple of years later, because, in his view, "...It became an agency."
Jeske says maintaining a strong volunteer base is difficult to do.
"Managing a huge staff of volunteers is very difficult. Volunteers often come to the agency with their own issues, and some wanted to volunteer for the wrong reasons. And, when an agency is receiving federal money, a high degree of professionalism is required. We haven't had a volunteer coordinate for a long time. Money for that would have had to come from the community..."
Stuart says complaints about the lack of volunteerism at ARK mostly come from people who do not understand the changing nature of AIDS care. While he concedes that the Buddy Program "...was once a very visible bridge to the community," he says it has pretty much outlived its usefulness.
"...In communities all over the country, emphasis on Buddy Programs has changed. In the past, buddies were often the only people who could provide comfort and support to people living (or dying) with HIV/AIDS. In recent years, AIDS service organizations all over are re-evaluating their Buddy Programs and most are focusing on providing comprehensive case management with emphasis on linking clients to professional resources and assisting them in building strong support systems (including family and friends). Most people living with HIV/AIDS today prefer programs that provide this linkage and promote empowerment. That is not to say that in specific instances, some clients may prefer a buddy. In our community these instances are very rare. With very little demand for buddies, it stands to reason that a full-scale Buddy Program would be hard to maintain."
So ARK evolved into a sophisticated multi-program agency with a crack grant-writing team, 20 employees to service a state-certified client load of some 700, and a $600,000 annual budget. It provided money to pay rent and utility bills, provide dental care and home repairs as well as run a theater program and pay a monthly rental of $3,800 for a suite of West Knoxville offices. The client population began to shift, and now women outnumber men among the agency's new cases.
As the agency was growing, the board members agree that its grassroots base was eroding. Allegations of client neglect and abuse and financial mismanagement became standard cocktail party conversational fare, and financial support withered away.
Joe Rader, who is head of library outreach and a special assistant to the dean of library sciences at UT, used to be a member of the ARK board. Active in many causes, he has also been a member of the board of Community Shares and served for six years on the state board of the American Civil Liberties Union. He says he left the ARK board after he chose the "wrong side" in a disagreement over ARK's pulling out of a management agreement to run the Graham, an apartment building housing people with AIDS. Rader believed ARK had made a commitment to run the Graham and had a duty to fulfill it. The majority of the board followed the wishes of former executive director Dawn Nickoloff, who disagreed with Rader. The split was bitter.
"I was branded. I was the enemy. I heard that there were many bad things said about me, but I did not choose to pursue it. Instead, I just chose not to stand for reappointment when my term was over," Rader says. "I quietly walked away, as so many others have done."
Rader had also opposed ARK's moving from an office on Magnolia to a West Knoxville address, thereby quintupling the monthly rent and moving the agency a greater distance from the increasingly poor and minority population it served. His criticisms of the move have proven prophetic, and the expense of the West Knoxville office became a major financial burden that Stuart says has now been solved by giving up half the office space.
Rader says he isn't interested in taking part in any anti-ARK crusade.
"I still support ARK in a rather passive way," says Rader. "And I hope they are working to set things right. But I do think if ARK had been doing its job, there wouldn't be this proliferation of other organizations that are taking up the slack, like the Hope Center and Positively Living."
He says, however, that the kind of problems ARK is encountering are "not unusual in AIDS service organizations," and on this point Jeske agrees, saying that he found, on his travels, these community support issues to be an almost universal bone of contention.
Stuart and the board have significant repair work to do on several levels. On Jan. 25, Dr. Jeannie Gillian, founder and head of the Hope Center, an AIDS care organization supported by Covenant Health Care Systems and housed in Ft. Sanders Medical Center, wrote a letter to Dr. Jeff King (a physician who cares for many AIDS patients) urging "...a complete managerial and philosophical restructuring" for ARK. She sent copies to, among others, state and local health department officials and Lofton Stuart, as well. Here is part of what she said:
"Since we are hospital-based and not in direct competition with local AIDS service agencies, we have the unique opportunity to enhance community networking. As requests for services increase, the need for consistent communication becomes essential. During the past year, however, communication between the Hope Center and AIDS Response Knoxville has waned significantly. Investigations, audits, and concerns regarding professional ethics have reinforced doubts about their ability to provide adequate services to patients. As a medical psychologist and employee of Covenant Health, I am personally responsible for upholding specific ethical codes of conduct including the protection of patients from potential harm. Mindful of personal and professional liability for the Hope Center, we are not encouraging new patient referrals to (ARK) as we did before..."
Lofton Stuart says he wants to rebuild relationships with the Hope Center and other services organizations.
"It bothers me if anyone thinks that the ARK board feels we should be the only game in town," he says. "We would like to be part of providing an umbrella of services."
In addition to losing the state funding for education and prevention, ARK temporarily lost most of its Ryan White funding, which is federal money allocated for services (medical, dental, housing, etc.), as well. ARK board members and others say that happened because ARK was four minutes late turning in a grant application
Ron Brabson, a member of the Ryan White Consortia, a regional group that assesses needs, determines how money should be spent, makes funding recommendations and does quality assurance, says the tardy grant application ultimately had nothing to do with the funding cut.
"Their proposal was evaluated by an outside evaluator, along with all the others," Brabson says. "For them to say it wasn't considered because it was late is just not true. And it was more than four minutes late, by the way."
Mary Tate, also a member of the consortia, says if ARK's application had been thrown out for being submitted late, which the Consortia would have been within its rights to do, ARK would not have received the $18,000 it was awarded for a half-time case manager. Tate says ARK used to have its way with the Consortia, a group that should ideally be made up of business people, community representatives and PWAs, as well as AIDS care professionals.
"Until recently, it was mostly made up of the Community Based Organizations (CBOs) that get funding, and Dawn Nickoloff was the chair and got the most money. The co-chair, Project Hope, in Upper East Tennessee, got the second most money. But now, the Consortia is going through changes, and they're really trying to do it right," Tate says. "They are looking at real needs, not just what the CBOs say the needs are and what they say they want."
One of the things the Consortia did differently as part of its review process this year was to send copies of each proposal and the reasons for the funding decision to every member of every board of directors of every organization that applied for funding.
Other troubles were brewing for ARK during this same time period. A state audit conducted for the year 1997 raised serious questions about ARK's handling of funds. A letter from Diane Mathews, controller of the East Tennessee Human Resource Agency, which had the responsibility of evaluating ARK's financial status, said ARK had a negative fund balance, almost $10,000 in overdraft checks, and virtually no working capital.
"ARK is reporting $7,192 in current assets (all receivables) and $102,105 in current liabilities for a working capital ratio of 1:14. This means the agency has...only one dollar available for every 14 dollars of current debt.
"In other words, we could expect that any money we spent for the Ryan White program would be needed to pay for past commitments rather than for current operations...
"These items, along with the negative fund balance of $112,635, raise serious concerns about the agency's ability to stay in business... Since almost a year has passed since the financial statement date, ARK should be able to provide information about how they were able to fund the $102,105 in prior year current liabilities or if the amount is still outstanding. Unless their financial situation is improved dramatically, I would not recommend further funding to ARK."
ARK representatives appear to have made recent headway in wooing back money for services. Last month, to the delight of ARK supporters and the dismay of ARK critics, a substantial portion of the Ryan White money was restored. Donations from the community have begun to pick up as well, and Bryan says some of ARK's former supporters have returned. Bryan, Stuart and Jeske are clearly frustrated that ARK is still saddled with criticisms rooted in dissatisfaction with the previous regime.
"We are three months down the road, and this criticism was about (the previous director)," says Bryan. "We have our eyes wide open now. All of that (criticism) should have gone away..."
While many of ARK's critics, like Berthiaume, are still mistrustful of the agency, and particularly of Jeske, most appear to want to see ARK changed rather than abolished, and some in the AIDS care business are concerned that people with AIDS may be frightened that they will suffer if ARK doesn't survive its current troubles.
"The reality is, the services are being given and nobody misses ARK," says Positively Living director Dee Crumm. "They (ARK supporters) perceive us as being an enemy, and we're not. But people know by now to take what they hear with a grain of salt... I choose not to give them energy, to stay focused on our mission, and know that things will unfold the way they need to and everything will work out in the end..."
Bryan disagrees, believing that the community needs ARK as much as ARK needs community support.
"We made hard choices back in January," Bryan says. "Do we just shut the doors? Do we go in and tell everybody good-bye? What would happen to over 700 clients? No other agency is equipped to deal with them, and we made a decision not to close the doors."
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