REMEMBER the “good old days” of AIDS service delivery, back when AIDS itself was still a terrifying epidemic? Not knowing how long we could keep our friends alive, wondering who would be next to fall ill—the tension kept us on edge. In the beginning, those of us touched by the virus, whether ourselves, our friends, or our lovers—we were alive back then, even amid the terror, anger, and death.
We held meetings, founded nonprofit service agencies, and started free clinics. We formed support groups, held auctions, dances, and AIDS walks, and sponsored bike rides. We scraped for money any way we could. We demonstrated, lobbied, wrote letters, organized. We wept, grieved and then wept some more. We found ourselves so far past grief that all we could do some days was laugh at the lunacy of death’s intrusion upon our young lives. We fought with those who feared and hated us. We fought with each other, our allies, among ourselves. We felt immersed in the moment and the times. We experienced a deep connection to each other—and to those who had died. We struggled together to make sense of it all, to bring some meaning into the sadness and sorrow.
By the late 1990’s, it appeared that we were succeeding, too. Many states created funding for case management, prevention education, needle exchanges, and condom distribution. Federal money at first trickled, then poured, into these efforts. President George H. W. Bush signed the Ryan White Care Act in 1989. Foundations made grants, donors made contributions, and scientists got going. Even as the Internet came online, so too did life-saving medications. Dr. David Ho became Time magazine’s “Person of the Year” in 1996 for his pioneering work with HIV antiretroviral medications.
Miracles happened. With the introduction of the antiretrovirals in that same year, people started to get up from their deathbeds and go back to work, and even to work out. At around this time, numbers became more important: your “CD4” (T-cell) count and your “viral load” were numbers you tracked with care. These data were aggregated with other people’s to measure effectiveness of the drugs and the progress of the epidemic.
As directed by state departments of health, local advocacy meetings morphed into community planning groups—CPGs, as they were called. At the behest of the federal Department of Health and Human Services, Ryan White consortia arose. Centers for Disease Control principles for strategizing—“Parity, Inclusivity, and Representation” (PIR)—became the credo. For these various and sundry groupings, three-, four-, and five-year plans became de rigueur. As the new millennium approached, so-called “business models” began to take over, as community-based organizing and identity politics gave way to the “medicalization” of AIDS. Pills were what mattered now. Community-based service agencies bought into marketing and segmenting approaches. Strategic plans were developed. Service pricing arose. Competitive grant-writing for CDC funding became an art form. Ryan White Care and hopwa housing— Housing Opportunities for Persons with AIDS—dominated AIDS Service Organizations (ASOs). From the beginning, Ryan White added to the sense of confusion with Titles I, II, III, IV, and (F). Now, with the last two re-authorizations of the R.W. Care Act, they have been demoted from “titles” to “parts,” with capital letters instead of Roman numerals. Hopwa seemed easier at first, as they forgot to tell us exactly how we could spend all that money. We spent it wisely for the most part, but once they caught on, rules and regulations flowed and then gushed out of HUD. Short Term Rental Mortgage and Utility Assistance (strmu) was good for 21 but not 22 weeks per year, and definitely not 23. Otherwise, that’s a “finding” in our audit, and you don’t want to get one of those—no matter that the client needed 23 weeks of help. And watch out for administrative spending, which can never exceed seven percent of the housing budget. No business can operate with that little to cover their costs. Just the other day, a pre-report verification crossed the desk of my housing director. It asks for the same information that the final, year-end report asks for. Among other things, it had the wrong date on it; besides that, it wanted year-end data three months before the end of the program’s year. Once we picked ourselves up off the floor, having landed there in a fit of laughter, we read the explanation, which went as follows: In addition to addressing the inconsistencies in these elements, the worksheets will help reduce any need for further data verification by providing this step to confirm annual grantee data on these elements at the beginning of the data compilation on these reports. Please note, the system enhancements and this use of the worksheets is part of an effort to streamline reporting. My housing director e-mailed this reply: “Boy, thanks, tell the powers that be that their ‘system enhancement’ and the filling out of this worksheet sure was a big help to ‘streamlining’ my reporting! I’m sure you know when someone says ‘streamlining’ it usually means it will take you four times as long as it normally would take you.” As ASOs marched into the 21st century, marketization was supplemented with managerialism. Budget processes became formalized. A cultish obsession with performance measurement came to rule the inner sanctums of government and health department agencies. Quantified targets, quality assurance, quality control, and formal reporting were tacked on to government-issued contracts with ASOs, such as the two I worked with, Maui AIDS Foundation and North Idaho AIDS Coalition. Resource allocation became a mystifying buzz word, hidden behind the holy curtains of a quasi-priestly public health hierarchy. Techniques for publicly shaming “inadequate” programs were refined and skillfully deployed in the name of “efficiency and effectiveness”—two goals that are often at cross purposes with one another. At around this time, there arrived that most sacred of paradigms—the Chronic Disease Management Model (CDMM), wrapping supportive services around primary care, adopting nationally determined “best practices,” promoting top-down leadership support and state-of-the-art information technology. Input one newly diagnosed person with HIV, slightly shocked if not completely traumatized, and output one upbeat, self-motivated client. Or such was the goal of the CDMM as it was implemented. Medications acquired three different names apiece, redefining “triplicate”: 3TC-lamivudine-Epivir, ABC-abacavir-Ziagen, AZT (or ZDV)-zidovudine-Retrovir, d4T-stavudine-Zerit, ddI-didanosine-VidexEC, FTC-emtricitabine-Emtriva, TDF-tenofovir-Viread. Those are just the NRTIs. I don’t dare list the nnrtis, PIs, FIs or the Combos. WHEN I first became an executive director twelve plus years ago, first in Coeur d’Alene, Idaho, and now in Maui, there was a unity of purpose, an élan, a community of survivors. In the midst of death and tragedy, at the edge of chaos, we were working together and responding to each other’s presence. We knew who we were and what had to be done. The shift to a dry, mechanistic model of disease management, the reduction of people with AIDS to inputs and data points, was perhaps unavoidable—organizations tend toward rationality and bureaucracy, as Max Weber observed long ago—but does it make sense when the “inputs” are people with complex problems and myriad stories to tell? We cling to a belief that there exists some ultimately rational system or structure capable of addressing every contingency, however unique. Our attempt to eliminate the messiness and anxiety of human life by applying a business ideology to public health and social service has fallen woefully short. Thus, for example, volumes of research may have led to the conclusion that “the best practice is two doctor visits and lab tests per year,” but when applied to the real world we discover—as my experience has taught me again and again—that people are unique and untidy, with all kinds of odd circumstances and exceptional situations. The “best practice” is often something that we have to find out for ourselves. We have to experiment, muck about, and do things over and over to discover, for example, how best to get a given individual to take his meds. Our clients understand this, too. They know when they’re caught up in a “system” that has become mechanical, impersonal, and rote. They experience it when confronted with a mountain of paperwork for healthcare insurance or client intake or housing application. They know it when they shuttle from prevention program to care services to food pantry and back. When they walk into an office and say, “It doesn’t have that family feel that it used to have,” they are telling us what has been lost in the medicalization model. For many long-term survivors who’ve lost family, friends, and lovers, the ASO is their family. By reducing people from clients whose trust we cultivate to consumers whose satisfaction we survey, we turn them into objects to be treated, tracked, and domiciled. What’s more, segmenting people into “at-risk populations” has not only highlighted our differences but also set us up as adversaries for scarce resources. Strategic planning has failed to deliver on the promise that purely rational methods in pursuit of standardized goals—codified as Specific, Measurable, Achievable, Realistic, and Timely (“smart”) objectives with the “big picture” in mind—would enable ASOs to deliver services to clients in a timely and effective manner. Every plan has highlighted ad nauseam the need for more and better connected board members and more diversified funding streams. Detailed, analytic planning in the fast-changing world of HIV has become tedious, stifling, and unhelpful. Being tethered to “plans of action” keeps case managers and outreach workers from attaining an instinctive competency, that level of skilled work where it just comes naturally with no thought to standard operating procedures, where one can respond to a client’s needs without resorting to linear design or reaching for an evaluation survey. Even in a lousy economy, executive directors are leaving the nonprofit sector in droves, weary of the board conflicts, the constant fundraising, and the piles of paperwork. Burnout in the world of HIV service delivery does not come principally from the overwhelming workload or the complexity of the client cases we face, but from the disconnect between what government funders and behavioral experts want from us and what our clients need. Again and again I’ve said to my staff: “Without doing anything unethical or illegal, figure out how to get the work done anyway.” Funders look for designs, plans, implementation activities, and evaluation components, while often clients need nothing more than help paying a bill or finding a compassionate doctor. Regardless of the need, chances are they’ll be asked probing questions: How many times have we seen the doctor this year? Have we gotten our lab tests yet for this period? How often have we used our condoms (be honest!)? Have we been recertified for our Social Security Disability Income (SSDI)? For Medicaid and food stamps? For our hopwa or Section 8 Housing? How many times have we missed our scheduled doses of medication? Been screened for PCP this year? Pap smear? Seen a dentist lately? Alcohol intake? Other drugs? Opened your mail yet this month? Paid your utility bill? Have we updated our Individual Service Plan (ISP)? Their answers will go into quantified data sets and reports that fly through cyberspace. The question remains to be answered: how has all this data and analysis improved our performance, and how has it helped our clients? At Maui AIDS Foundation (MAF), I’ve tried in some simple ways to open up the conversation. I’ve begun to chair agenda-less meetings with my managing directors as a group and in individual one-on-ones. We take turns leading the meeting; I don’t do so at all. The long-suffering MAF Client Advisory Council, which is mandated in our by-laws and Ryan White contract, has languished because of its onerous “system” responsibilities and duties. The group is much more alive when it gets off track. Strangely, as I reflect, the two most popular MAF activities have been our HIV+ support group and the our “Anti-Social Social.” Both are agenda-less, both are popular, and both are not funded by the government. And it has worked: in the past eighteen months there has not been any staff turnover, our client satisfaction surveys have improved, our prevention numbers have increased, and our housing program has stabilized. There is no way we can apply logic models, enforce agendas, or distill “best practices” for the activities emerging out of the ordinary, everyday conversation of those most affected by HIV. Each incident is “another first time”—a moment that cannot be captured and put in a box to be trotted out and applied where needed. During the last four years, the four Hawaii ASO executive directors have begun to stay longer after our highly agenda-driven Ryan White meetings in Honolulu. We go to lunch and talk shop—all without an agenda or expectation of outcomes. Good things have come from that: deeper understandings of each island’s unique circumstances, exchanges of critical information, new insights, and mutual support. Now, we all pick up the phone and call each other, just to talk, just to get through the day or week. One thing I’ve learned over the years is that there are no easy answers, no quick fixes or formulaic solutions to our problems. Novelty and creativity arise out of the unknown and unexpected, running smack dab into the unforeseen and learning new pathways to our various goals. It’s the human way. And it’s the way we got things done in the beginning. It might just be the way to breathe some new life back into a tired and over-organized system. If we can learn to talk to each other again—in ordinary, daily conversation—we can put some satisfaction, if not transcendent meaning, back into our work. And we might make a difference again. Keith Wolter is the executive director of Maui AIDS Foundation, which serves the Hawai’ian islands of Maui, Molokai, and Lanai.
