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Eileen Hansen, Public Policy Director
AIDS Legal Referral Panel 1998
Contents
The AIDS epidemic in the United States has moved into unprecedented territory. The much celebrated success of new treatment strategies for HIV-positive people has launched a discussion to determine what the future holds for those who assumed their lives would prematurely end. A large portion of that discussion has, for better or worse, been dedicated to the issue of moving people with HIV into the workplace.
Work is indeed a fundamental component of our social and economic structure, and we place high value on its worth to individuals and to society. But now, at the first glimmer of hope that people with HIV, or even those with AIDS, might be able and willing to go to work, we may have become too eager to shift our energy, our resources and our expectations over to this one great promise out of a tremendous need for an end to this draining and deadly epidemic.
Programs, plans, meetings and literature have begun to emerge on the topic of "work re-entry" from the large body of professionals who work on issues involving HIV-positive people. However, our research has shown that the available information concentrates primarily upon those who had already been successful participants in the work world before becoming disabled, those individuals tending to be the more "traditional" HIV-infected community gay, white, middle-class, middle-aged men. There is a tremendous shortage of information available concerning "work entry" and whether the more disenfranchised populations with HIV, including women, youth, people of color, poor people, substance users and ex-offenders are able to enter the workforce and, if so, what their needs might be. This is significant, since these groups have the highest rates of new HIV infection and in many ways represent the future of the epidemic.
The AIDS Legal Referral Panel believes that the obstacles and opportunities encountered by the traditional HIV population differ significantly from those of these disenfranchised groups. We have seen this to be true in the areas of health care and social service needs; undoubtedly, it will hold true with respect to needs regarding job training, job placement, employment discrimination and additional demands such as child care. As of yet, there have been few attempts to determine the needs and desires of disenfranchised HIV-infected people considering working, or indeed, whether the issue of working is even relevant to these groups in the face of other social pressures. Some limited needs assessments have been done but, due to restrictions on the use of Ryan White CARE funds for vocational issues, funding is in short supply. Meanwhile, state departments of rehabilitative services have not, as yet, conducted needs assessments specific to the concerns of people with HIV. Community-based organizations have generated some valuable information, using their own clients as a source of data. However, while this is a reasonable place to start, the results of these studies are necessarily skewed toward the population each agency serves, and do not provide a comprehensive understanding of the work-related needs and desires of the HIV-infected community as a whole. Thus, programs to assist HIV-infected people are being created based on information that relates only to a segment of HIV-infected populations those groups already accessing community services.
It is highly likely that the potential vocational needs of disenfranchised people with HIV are indeed quite different for a variety of reasons. By listening to their voices and approaching the problem as expansively as possible, the HIV community has an unprecedented opportunity to create new models of work-related services and advocacy, meeting the broadest possible range of needs. Thus, the AIDS Legal Referral Panel recommends the following to begin this process:
1) conduct a national needs assessment, in collaboration with state vocational rehabilitation departments and community-based organizations, to determine how best to assist disenfranchised HIV-positive people in work entry/re-entry issues;
2) hold roundtable discussions consisting of professionals with expertise in work entry/re-entry issues, service providers working specifically with women, youth, poor people, people of color, substance users, ex-offenders and HIV-infected persons from disenfranchised communities to discuss their perspectives on these issues;
3) collaborate with the disability rights community, through roundtable discussions, specific HIV/disability forums, written materials and collective advocacy for systemic changes in areas such as Social Security reform; and
4) assemble focus groups of HIV-infected persons from disenfranchised communities in order to access their input concerning their needs and desires regarding work entry/re-entry issues.
The implementation of these recommendations will require concerted and collaborative effort among the HIV and disability communities, policy makers, public and private agencies. In addition, significant funding of these efforts will be required, along with a focus on the lessons that must be learned prior to the creation of work-related programs and vocational advocacy for people with HIV.
Finally, we recommend that policy makers and private and public funders assess the broader and increasingly complex environment of the HIV epidemic and commit to continuing dialogue with community-based AIDS service providers and people with HIV regarding the wide array of services and protections that must continue to be provided in order to support both those who can work and those unable to do so. The shifting of resources and priorities in this time of new hope is premature and does a disservice to both those with HIV who are more disenfranchised and those who are less so. As work-related services are developed in this "new era of HIV," they must be done so in the context of the continuing and still developing epidemic.
Introduction: Grabbing the Brass Ring Called Work
The face of HIV has changed dramatically over the past two years. With the advent of protease inhibitors and triple-combination therapies, people with HIV are beginning to discuss living with HIV, instead of dying of AIDS. For many people living with HIV the hope of a return to health has come to be closely connected with our culture's most pervasive signifier of worth and self-worth: work.
Work is a fundamental component of our social and economic structure, and we place high value on its worth to individuals and to society. As Richard Nixon noted on Labor Day in 1971, "The 'work ethic' holds that labor is good in itself; that a man or woman becomes a better person by virtue of the act of working." Or, as Studs Terkel opined, "In all instances, there dangles the impertinent question: Ought not there be an increment, earned though not yet received, from one's daily work an acknowledgment of man's being?" (emphasis author's)2 We believe that we are more significant beings to ourselves and to society when we contribute through our labor. Our society looks down upon those who are dependent or unable to work; we are unwilling to appreciate the fact that some must labor to support those who don't. We claim to make an exception for those who are "disabled," or unable to contribute in the way that able-bodied individuals are expected to. And we have allowed that exception, that understanding, for people with AIDS.
But now, at the first glimmer of hope that people with HIV, or even those with AIDS, might be able and willing to go to work, we may have become too eager to shift our energy, our resources and our expectations over to this one great promise out of a tremendous need for an end to this draining and deadly epidemic.
This singleminded enthusiasm carries with it both comfort and danger. One result of this great hope for a changing epidemic is that AIDS policy makers and private and public funders have begun to shift their focus away from long-standing concerns and approaches that nonetheless remain valid. Programs have begun to change direction and policy makers are developing new initiatives based on the assumption that we are entering "a new era," one in which all people with HIV have access to high level treatment and live healthy lives, free from stigma and discrimination. We are seeing the beginning of a backlash in which conservative politicians and commentators have denounced so-called "AIDS exceptionalism" and have revived arguments and legislation long ago defeated that employ a punitive approach to HIV prevention and treatment. Noting that AIDS is now like any other disease, now that people with HIV are thinking about work once again, the long-standing vigilance over the civil rights and civil liberties of people with HIV and the well-founded concerns about discrimination, privacy and confidentiality seem to be giving way to a strategy of "getting everyone tested, named, notified and treated." The belief that people with HIV will give up many of their rights for the possibility of treatment access is a strong one among some politicians and policy makers. And, the promise that people with HIV will "no longer be a burden to society or to themselves" once we get them back to work holds great sway for many.
There is no doubt that we want AIDS to be a manageable disease; no longer a crisis. We need a breakthrough. We need relief. We need the gift of normalcy in our lives again, and the picture of everyone "back to work" is a delight to the general public, to public policy makers, to public health officials, to AIDS service providers, to those who have lost too many loved ones and, most of all, to people with HIV. Freud told us that "[a man's] work at least gives him a secure place in a portion of reality, in the human community."3 People with HIV need to again feel "real" by being a part of the fuller human community that is not a sub-community of sick and struggling and dying compatriots. The promise of being well enough to work offers back that reality.
Work, HIV and Disenfranchised Communities
Upon realizing that one might live longer than originally thought, many hope and even assume that the next obvious step is returning to the workforce. And for many, it is. Even in these early stages of success in recent treatment therapies, work re-entry programs, meetings, articles and general discussions are appearing all over the country. The endeavor of determining the best possible way to re-integrate the HIV-infected population into the world of work has begun.
Unfortunately, as currently framed, this discussion of work re-entry is incomplete. Much, if not most, of the preparations for work re-entry, are focused on just that: re-entry. The issue of persons who have not worked in the past for a variety of reasons the work entry portion of the discussion has generally been left out of the picture. Women, youth and people of color, as populations to be considered, are sometimes mentioned in passing, but the depth of discussion regarding need has yet to be developed. The irrelevance of focusing attention and resources on work for those for whom treatments are not available or successful, has yet to be explored.4 Simply assessing terminology in the written literature on this topic, the focus is consistently on work re-entry, while work entry is rarely mentioned.
It is understandable that this approach has been favored. Placing people in the workplace who have limited or no work experience brings up numerous challenges, above and beyond those issues raised when anyone with a disability enters the workforce. Obstacles to work re-entry such as the need for Social Security reform, employer incentives, vocational rehabilitation, part-time jobs with full-time benefits, the uncertainty of future health/disability coverage, and the need for easy-to-understand transition periods in which public benefits can overlap with the beginning of private insurance, or where private long-term disability policies can overlap with new benefits plans, are shared by many. However, the additional and specific challenges of women, poor people, people of color, youth, substance users and ex-offenders, let alone of those who have never worked before, have not yet been fully addressed in this shifting environment. When the focus moves beyond those who are educated, with professional backgrounds or other significant skills to offer in many or most cases older, gay, white, more middle-class men the issues related to work entry/re-entry become enormously complex. The needs of those going "back to work" are far different than those experienced by people who are disadvantaged not only by HIV, but by race, gender, class and age, and yet are able to consider beginning to work.
Women and people of color continue to make up a larger and larger proportion of people with HIV in the United States. While recent therapeutic advances have caused AIDS deaths to drop overall, the statistics for women and people of color have not been nearly as promising.5 From 1995 to 1996, deaths among men dropped by 25% while those among women dropped by only 10%. Deaths dropped by 32% in whites; by 20% in Latinos/as; and by only 13% in African Americans. Cases of AIDS were reduced by 8% in men, while increasing by 2% in women. Among whites, the reduction was 13%; in Latinos/as it was only 5%; in African Americans the case reduction was zero.
Among women, women of color have consistently shown a higher incidence of infection throughout the epidemic. The racial/ethnic distribution of women with AIDS is similar to that of male injection drug users and heterosexuals with AIDS. In 1997, 77% of women's AIDS cases in the U.S. reported through mid-year were in women of color, with 56% of those cases in African American women alone.6 AIDS has been the leading cause of death among African American women aged 25-44 for some time now.7 At this stage in the history of HIV, it is increasingly important that we examine not only who is currently HIV infected, but also the direction the epidemic is taking. It is crucial that our program planning and our resource allocation follow a course that best equips us to respond to tomorrow's inevitable needs.
Issues Confronting People with HIV in Considering Work
As more people with HIV gain access to and benefit from effective courses of treatment, many will feel healthier and stronger and will consider the possibility of working. Unfortunately, for some, treatments are either not accessible or not successful. Only 25% of those who could be on protease inhibitors from 1996 through early 1997 were, in fact, taking them, and only 14%-28% of those qualifying for the AIDS Drug Assistance Program (ADAP) were accessing drugs during 1996.8 Data show that those receiving advanced drug therapies are typically more often white, gay, educated persons.9 In a study conducted by AIDS Project Los Angeles (APLA), knowledge about advanced drug therapies was low among African Americans and non-English speaking people with HIV, and access to protease inhibitors was limited among uninsured and poorly educated groups.10 Thus, it is reasonable to assume that those with HIV most able to consider working are likely to be those most able to access, adhere to, and benefit from combination therapies including protease inhibitors.
A Los Angeles-based study, utilizing results from three focus groups consisting of APLA clients, concluded that HIV-infected people considering work entry/re-entry identify three basic incentives for working. They are: 1) the psychological and emotional benefits of work, including the increase in self-esteem and self-respect; 2) the financial benefits of being employed; and 3) the social and physical nature of work.11 The same study also identified a number of disincentives to work, including:
1) health and medical factors, such as physical requirements or stress level from a job, as well as concerns regarding the uncertainty of one's day-to-day health;
2) loss of current medical benefits without adequate (or any) replacement coverage from a new employer;
3) psychological issues such as fear, anxiety, shame and lack of self-worth;
4) social issues such as the stigma of AIDS, prejudice and discrimination; and
5) lack of skills, experience and education.12
The general health concerns identified in the study are significant. Focus group participants frequently mentioned uncertainty about such issues as one's day-to-day health, job-related stress and whether a work environment would be flexible in allowing time off to keep doctor's appointments and to take care of other health needs.13 For many people with HIV even those who are asymptomatic entering the workplace is not feasible unless the need to follow strict drug regimens, often involving unusual timing of meals, can be accommodated by the employer.14 Many of the APLA survey participants also questioned whether they could maintain their health on a sustained, long-term basis particularly given that many of them had often experienced feeling well one day and ill the next, in many cases due to the side effects of the drugs they were taking.15
In the Preliminary Report from the San Francisco Mayor's Summit on AIDS and HIV, held in San Francisco in January of 1998, it was noted that "[e]ven short term nonadherence to an aggressive therapy may result in rapid virus repopulation in lymph nodes."16 In other words, if by entering the workplace an individual is unable to manage a strict drug schedule incorporating detailed timing of doses, specific meal times, fat content of meals and fluid intake, she faces the risk not only of exacerbating her condition, but also of creating a strain of HIV in her body that will be resistant to the very therapies which first enabled her to work.
Over 30 professionals working primarily with clients with HIV met the day following the San Francisco Summit to continue the discussion related to work entry/re-entry. Not surprisingly, it was noted anecdotally that among HIV-infected persons utilizing new, complex therapies, full-time workers already had the highest failure rate of adherence after substance users and those with mental health problems.17 Adhering to strictly timed drug regimens is proving to be difficult for those struggling to also maintain full-time work regimens.
The concerns regarding maintenance to health care and other benefits also represent a formidable barrier to people with HIV considering entry or reentry into the workplace. Those who have been disabled from working because of HIV and have received public or private benefits must navigate perilous waters in seeking to enter the workplace. They may easily end up much worse off financially and with less comprehensive health benefits than they had when they were not working. These dangers affect both individuals who have substantial work history and therefore are beneficiaries of Social Security Disability Insurance (SSDI) and those who have little or no work history and are recipients of Supplemental Security Income (SSI) and Medicaid. Under current law, SSDI beneficiaries may work for a period of time without loss of income benefits; however after that point they are precipitously cut off benefits whenever their monthly income exceeds $500. SSI recipients who begin to work may retain some level of income benefits until their annual income exceeds a state-specific figure of approximately $16,000. However as a condition of maintaining those benefits and most importantly access to health care through Medicaid, the SSI recipient may not accumulate more than $2,000 in savings. Thus, someone receiving SSI who begins to work is forced to choose between trying to climb her way out of poverty or maintain her health care. If her new employer does not offer adequate health benefits (currently no state requires any employer to offer health benefits), she will be forced to choose continued poverty in order to continue to receive treatment for her HIV without which she could not work.
These problems are complex and extensive, and need to be addressed simultaneously on both service and policy levels. Toward that end, a broad coalition of disability rights groups promoted a 1998 legislative package in Congress that would reform many of these benefits-related obstacles to entering the workplace.18 It is imperative for the HIV community to take part in these types of efforts so that fewer barriers will stand between the desire of an HIV-positive person to enter the workplace and that dream's realization.
The psychological and emotional factors cited by participants in the APLA study have been echoed by Bay Area residents since the early successes of combination therapy were reported. At a community forum on work issues for people with HIV, some audience members reported feeling better physically, yet paralyzed emotionally due to the dramatic and still uncertain change in their life expectations. Others with more advanced HIV disease who were not responding well to the new treatments reported feeling a pressure to think and talk about the possibility of working lest they be "left behind" by their peers and by their service providers.19 For individuals with little or no work history, who have felt unwelcome in the work world generally, the anxiety felt about entering the workplace as a person with HIV is undoubtedly increased. Emotional support will undoubtedly play a crucial role in the success of any person with HIV entering the workplace, indicating that appropriate support services will be a key component of any comprehensive HIV employment program.
The concerns raised in the APLA study and elsewhere regarding potential discrimination are particularly apposite given the recently decided U.S. Supreme Court case, Bragdon v. Abbott20 and rulings in similar matters such as Runnebaum v. NationsBank of Maryland.21 The federal court of appeals in both Bragdon and Runnebaum held that asymptomatic HIV-infected persons are not protected from discrimination by the Americans With Disabilities Act (ADA) of 1990. These rulings are tremendously distressing (notwithstanding the heartening Supreme Court decision) and provide an important reminder that AIDS is still a disease needing unusual attention. Despite some improvement in public attitudes toward HIV in the past ten years, a recent study found that 31% of people still believe that AIDS is a punishment for a decay of moral values, and 40% believe AIDS is the HIV-infected individual's own fault.22 As a direct provider of employment-related legal services to people with HIV, the AIDS Legal Referral Panel has seen that workplace discrimination and harassment against people with HIV are alive and well, even in "progressive" communities such as the San Francisco Bay Area. Fears about entering the workplace as a person with HIV are quite legitimate.
While the AIDS Legal Referral Panel (ALRP) supports many of the overall efforts currently underway to advocate for the rights of people with HIV who wish to enter the workplace, this analysis of emerging issues was developed out of our concern that the needs and desires of disenfranchised populations are not yet being taken into account as plans for programs to serve those who are HIV-positive and interested in working are being developed. Toward that end, we conducted an extensive literature search and reviewed over 50 articles on the topic of work entry/re-entry written from a variety of perspectives, including those of the Centers for Disease Control and Prevention, AIDS service providers and community-based organizations, and those of local and national journals and news publications. We also analyzed relevant ALRP client data from 1995, 1996 and 1997 and discussed these issues with clients and AIDS and disability service providers. In addition, ALRP conducted a preliminary survey within the San Francisco Bay Area, with respondents who were primarily HIV-positive, low-income women of color.
We attempted to analyze not only what is currently being addressed in the literature regarding the issue of work entry/re-entry for disenfranchised populations, but also the perspective of the writers. We specifically looked for articles that assessed the concerns of women, youth, people of color and the poor, particularly those who have not previously been in the work environment. As was mentioned earlier, we found very little notice taken of work entry, and only a cursory look given to these populations. In general, the body of literature on work entry/re-entry is quite slim, as it is mainly with the recent emergence of successful protease inhibitor and combination therapies that the widespread potential for HIV-positive people to work has existed. Given the statistics on where the AIDS epidemic is heading with respect to women and people of color, we must not fail to include these groups in deliberations for programs and services meant to address all HIV-positive people considering entering the workforce.23
A number of questions arise, given this context. For instance, what relevance does the issue of working, whether returning to work or entering the workforce for the first time, hold for disenfranchised groups such as poor people, youth, people of color and women?24 How do issues vary based on different class stratification, educational level and past employment experience? What are the needs of these different populations, and how do they vary from other communities that are currently being better served? How can community efforts be developed that are meaningful for people with HIV who have never worked or have worked consistently in low-paying jobs? How would these programs intersect with programs for those entering or re-entering the workforce on a much different skill level? And does this "changing epidemic" even apply to groups of people who may have no realistic access to life-saving therapies?
Summary of Research and Client Activity
In our survey of the sparse written literature, as well as through information gathered from clients, meetings and focus groups, as well as our preliminary survey results, it appears that while there have been some preliminary needs assessments, no national needs assessment has been conducted to evaluate the issues of the general population of HIV-positive people regarding work entry/re-entry, and of disenfranchised populations in particular. In part, this may be a result of a directive from the U.S. Department of Health and Human Services specifically prohibiting funds awarded under Titles I or II of the Ryan White CARE Act from being used for "vocational, employment and employment-readiness services."25 The premise of this directive is that "such services are [already] required to be provided by designated state agencies with the assistance of federal funding to operate a comprehensive, coordinated, effective, efficient and accountable program of vocational rehabilitation for individuals with disabilities (emphasis author's)."26
Theoretically, this plan for delivery of services should be sufficient. However, few state-funded programs have established effective working relationships with CARE-funded HIV programs.27 The San Francisco District of the California Department of Rehabilitation, for example, dedicates approximately 1.0 FTE to serving people with HIV in a city in which 4%, or more than 25,000 San Franciscans, are HIV-positive.28 No specific outreach has been done targeting people with HIV, and no formal collaborative relationships have been formed with either the Department of Public Health or any community-based organization.29 As a result, AIDS service providers have had to create their own mechanisms for providing employment-related services. San Francisco's Positive Resource (PR), for example, has operated an employment program since 1992 without formal linkages to the network of employment development resources, CARE-funded agencies, the Mayor's HIV Health Services Planning Council or the San Francisco AIDS Office.30 Just in 1997, Positive Resource merged with AIDS Benefits Counselors (ABC) so that the combined organization could better serve its clients needing both job and benefits assistance. ABC/PR is now the premier HIV-related community agency providing work entry/re-entry services in the Bay Area.
This lack of connection between non-HIV and HIV-related initiatives has resulted in incomplete knowledge on both sides regarding the employment-associated needs of the full spectrum of people with HIV. With no state or federally facilitated and funded needs assessment, community-based service providers have been left to assess community needs based on the experience of the individuals who are already their clients, and to develop preliminary responses to this emerging issue based on that information. While this is a natural path to take, the information that is obtained from such assessments is necessarily skewed toward the needs of the population that each agency serves, making it difficult to grasp the needs of the HIV community as a whole.
For example, agencies such as Positive Resource in San Francisco have traditionally served the gay, male, white community. Available statistics from a work-related needs assessment of the Positive Resource client base, with a 21.5% response rate, showed the ethnic makeup of the Positive Resource clients responding as 75% Caucasian, 2% Asian/Pacific Islander, 11 % African American, and 6% Latino/a.31 Seventy-nine percent of respondents were between the ages of 30 and 44, with an average age of 39.5. Ninety-one percent were male, and 85% identified as gay.32 Of this population, 60% were considering work entry or re-entry.33 The assessment did not inquire as to previous employment or unemployment status prior to HIV infection. Whether the reason Positive Resource's clients are largely homogenous stems from the high percentage of gay, white males infected in San Francisco, from the stigma attached by other communities to seeking services from a seemingly gay-identified organization, or from other factors entirely, is unclear. What we do know is that, as noted by current AIDS statistics stated previously, the clients who responded to the ABC/PR survey are not representative of HIV-positive individuals in general in the United States today, and one cannot assume that the figure of 60% of clients interested in working is representative of HIV-positive individuals' interest in work generally in the U.S.
Susan Hiakalis, LCSW, Client Services Director for the San Francisco AIDS Foundation, had this to say in response to ALRP's question regarding issues related to work entry/re-entry that might have been raised by their clients: "We have not been seeing a lot of folks who are exploring going back to work. Many of our clients have very poor work histories or very little work histories. The issues are really very different. If they indeed totally stabilize and then are looking at going into the work world, it's a very different story."34
In analyzing the client data of the AIDS Legal Referral Panel, we found that the number of inquiries regarding employment from 1995 through 1997 changed only slightly. Requests for employment assistance (from employment discrimination to work entry/re-entry to ADA accommodation) numbered 164 in 1995 (5.3% of all client calls) and 153 in 1997 (6.6% of client calls). However, the number of insurance related calls changed by greater numbers: 304 in 1995 (almost 10% of all client calls) down to 154 in 1997 (6.7% of client calls). These requests for assistance included a number of inquiries about possible loss of longterm disability benefits when returning to work. Calls regarding government benefits numbered 190 in 1995 (6.2% of all client calls) and 119 in 1997 (5.2% of client calls). Thus, employment queries seem to be rising, although only slightly, and insurance and government benefits questions appear to be dropping. In further analyzing the 1997 data, we found that approximately 20% of all employment calls and 4% of all insurance calls related specifically to work entry/re-entry. Most of those calling about employment were overwhelmingly male (143 of 153); white (99 of 153); between the ages of 31 and 50 (118 of 153); and unemployed (100 of 153), with wide ranging incomes.
One client called with concerns regarding an agent sent by his longterm disability insurer who had come to his home to "ask his neighbors if the AIDS patient seemed well enough to be going back to work." A number of clients have called regarding the pressure they feel from their employers who have notified them that they need to make a decision about "getting back to work" by a date certain or they "would lose their job." Still others have called because their employers informed them that they could come back to work, but then rescinded the offer or laid them off as soon as they started back to work. Others have called once they returned to work only to have gotten sick again and then been fired. Some are calling because their companies are hesitant to hire or re-hire them because of the potential insurance/medical costs involved. Some clients have been fired while out on disability. Many insurance clients have been concerned about the loss of longterm disability benefits upon their return to work and about the possibility that they might not be able to continue working after a period of time, necessitating a return to disability status. Finally, in the seemingly unrelated area of debtor/creditor law, ALRP has had to respond to a dramatic increase in the numbers of creditors who have sued disabled people with HIV in order to obtain judgments. Creditors have stepped up their collection efforts against people with HIV based on the assumption that the debtor will inevitably feel well enough to work and will begin to earn wages that can be attached to satisfy the debt.
The ALRP client data provides us with some preliminary information on this emerging issue. Entering the work force with HIV is still fraught with fear, anxiety and the perception of an unaccommodating and potentially discriminatory environment. These concerns are all too often borne out and as people with HIV weigh the potential benefits and liabilities of entering the workplace, their ability to sustain a desire to work will have to be balanced with their ability to stay healthy in a stressful environment.
For many of our clients, however, the issue of work entry is a non-issue; and for some of these clients ALRP will need to address the problems inherent in the assumptions made by many such as insurers and creditors that all people with HIV should be capable of going to work.
The AIDS Legal Referral Panel also recently conducted a preliminary survey within the San Francisco Bay Area community, with results reported primarily from HIV-infected low-income, women of color. In attempting to ascertain whether the issue of work entry/re-entry was, in fact, an issue for this population, we determined that out of an initial sample of 24 respondents, only seven thought that their health allowed them to work. Four reported that they were currently working, and nine indicated that they would like to work. The needs these women reported in order to consider entering the workplace included job counseling, money for transportation, job training and child care. Reasons given for not wanting to work included concerns about losing their subsidized housing and benefits, and health problems making it impossible to adhere to a work schedule.
The demographics of HIV-infected people being served by programs addressing the work issue differ greatly according to regions of the country. For instance, in Los Angeles, service providers reported anecdotally that more of their clients had not worked prior to contracting HIV.35 However, in the previously mentioned study based on three focus groups of APLA clients, "unemployed" was not an option in the survey's employment section, so there is no actual data to confirm this anecdotal information. Over 14% listed their previous employment experience as "unskilled/service," with approximately 25% of the participants having a high school education or less.36 AID Atlanta, which has held a series of workshops concerning work entry/re-entry, found their participants having similar demographics to those of San Francisco's Positive Resource, with 93% white and 7% African American attendees.37 MTS, a New York City-based community agency dedicated to training and finding employment for HIV-infected individuals, has a range of diversity in its clients that is closer to that of the epidemic itself, with 49% African American, 26% Hispanic, 24% white, and 22% women.38 However, the average MTS client has been unemployed for only two years, and therefore likely left the workforce due to health reasons resulting from HIV infection.39 This suggests that MTS may not be engaging those severely disenfranchised individuals who were unemployed prior to HIV infection.
The 1997 Seattle-based Northwest AIDS Foundation's Back-to-Work Survey, with a 55% response rate, showed responding participants to be 85% Caucasian, 5% African American, 3% Asian Pacific Islander, and 3% Native American, with 97% male.40 Few, if any, of the community groups exploring these questions have done surveys that stratify by education or prior work experience, so it is difficult to ascertain the level of engagement in these workshops and surveys from low-income, traditionally disenfranchised community members. What is clear from these initial statistics of HIV-positive clients in different areas of the country is that, aside from New York City, people from disenfranchised populations women, youth and people of color are not generally being served by work-related programs in representative proportions to the national statistics of HIV-infected people. Locally, while programs must be developed that are appropriate to each community, the variety of needs within those communities must also be reflected.
The literature is quite limited regarding what is being done to address the work-related issues of women, youth, people of color and poor people. Information regarding attention to work concerns of substance users (former or current) and ex-offenders who are HIV-positive is even scarcer. A roundtable discussion sponsored by MTS, Gay Men's Health Crisis and the National Association of People with AIDS, held in New York in July, 1997, indicated several specific requirements for serving the employment-related needs of "special populations," including broader training and employment options, child care and other unidentified supportive services.41 General needs, which seem to be shared among all populations being considered, include housing, nutrition, income security, psychosocial support and safety.42 Yet, while the roundtable was an important beginning, a response to both general and diverse needs still must be more fully addressed, planned and funded. As yet, no other broad-scale roundtables or documents have been developed.
The Private Industry Council (PIC), a San Francisco-based agency, supports the federal Job Training Partnership Act (JTPA) and the local Jobs For Youth program, both of which focus on employment training and placement services for low-income adults, youth and the homeless.43 The PIC has begun working with the HIV population in the employment arena, but this appears to be only one of the numerous populations targeted by the PIC. The Life Program, a division of the International Association of Machinists and Aerospace Workers Center for Administering Rehabilitation and Employment Services (IAM CARES), which was funded through a three-year federal grant from the Department of Education Rehabilitation Services in October, 1997, also is beginning to provide vocational services to people with HIV, including training and job placement.44 Their grant proposal suggests an intent to serve the Enterprise Community neighborhoods, as well as to provide technical assistance to employers about HIV workplace issues.
Additionally, an AIDS Benefits Counselor/Positive Resource federally funded proposal to provide work entry/re-entry services includes outreach to the Enterprise Zones of San Francisco, and four different job training areas for low-income individuals.45 This proposal also states an intention to do outreach to communities of color, utilizing ABC's benefits counseling outreach program which currently operates in the Mission, Tenderloin and Bayview Hunter's Point districts of San Francisco. However, previously noted data shows a slim response from these areas in PR's work-related needs assessment which, at least in part, formed the basis of the proposed program design. There was no mention of modification in services for those disenfranchised communities, save for additional job categories for training. However, the proposal does discuss a promising partnership between ABC/PR, Jewish Vocational Services and the California State Department of Rehabilitation. Our continuing concern, however, lies within the lack of specific attention paid to the potentially quite different needs and concerns of disenfranchised populations when addressing HIV and work.
The San Francisco Mayor's Summit on AIDS and HIV explicitly included assurance that proposals would be developed to reflect the needs of HIV-positive people entering the workplace for the first time.46 It appears difficult for them to have met their charge, however, perhaps due in part to their discovery that there have been no efforts by any city department or agency to track delivery of employment services to people with HIV. This made it impossible for Summit Recommendations to be based on an understanding of the efficacy of existing programs for people with HIV, or to provide an overall view of which populations, or "sub-populations" with HIV are currently being served.47 While the Recommendations contained in the Summit's Preliminary Report are arguably the most detailed plans yet put forth on this issue in the country, they remain based upon information that does not stem from the inclusion of the concerns of disenfranchised populations, but rather only from groups already being reached by work-related AIDS service providers.
Some pertinent information regarding our questions related to work entry/re-entry for people with HIV might lie within the disability rights community. Organized by private funders and developed with the input of both HIV and disability advocates, a forum entitled, "Barriers to Employment and Economic Independence: Common Issues Confronting HIV/AIDS and Disability Communities" was held on April 15, 1998, in San Francisco, and set the stage for expanded discussions among the HIV and disability rights communities, policy makers, and private and public funders.
Much work has already been done by the disability rights community in creating new avenues for people with disabilities to address barriers to work. Specifically, service models and policy proposals developed by the National Council on Disability, and others, with respect to Social Security reform and promotion of consumer choice within state vocational rehabilitation agencies provide a meaningful starting-point for policy makers and service providers to begin meeting the needs of people with varied disabilities.48 Literature developed by the disability community suggests the need for systemic change, including the provision of incentives for all stakeholders in the work entry/re-entry process beneficiaries, employers, insurers, vocational training providers and taxpayers.49 The disability rights community has also resolutely advocated for SSI and SSDI to be simplified and made "user-friendly," and for Social Security personnel to be adequately informed in order to provide accurate guidance to recipients.50 Additionally, the disability rights community indicates a strong need for integration among state and federal programs intending to serve the disabled regarding work-related issues. The disability rights and HIV communities have some history of working together most notably toward passage of the Americans With Disabilities Act (ADA) of 1990. These communities must strengthen their collaborative work, learning from one another and building upon the solid advocacy histories of both movements.
As low-income people, women, youth and people of color, groups long disenfranchised by society, emerge as those most affected by new cases of HIV, the need to continue the expansion of support services in order to better serve these HIV-positive individuals and their specific communities becomes obvious. Because service direction tends to be informed by the needs of current clients more than those of either future clients or people with HIV less inclined to access services, our knowledge of the needs and desires of these groups with respect to work is quite low. We know that HIV-positive individuals attempting to enter or re-enter the workplace need assistance and support in areas such as maintaining stable housing, child care, transportation, vocational training and benefits counseling. But these issues are obstacles within themselves. Child care, for instance, may cost more than a minimum wage job can support. The risk of losing health and disability benefits is a frightening possibility. Yet for some, the self-respect that may attach to working can provide a sufficient tradeoff despite the disincentives. Regardless, much more data must be assembled in order to develop targeted programs that are designed in ways that can be meaningful to the broadest possible range of people living with HIV.
In formulating proposals for services, we need to engage in dialogue between and among a variety of constituencies. Service providers who work specifically with women, youth, people of color or poor people can offer their community's unique perspective. The disability rights community, already experienced in matters of work entry/re-entry on both the service and public policy levels, also has much to offer the HIV community. Finally, and most importantly, the voices of HIV-infected women, youth, people of color and poor people have yet to be heard on these matters. It is imperative to invite these individuals to policy and program planning tables and to craft all programs meant to serve them with their input.
Additionally, it is critical that while we strive to assist people who may want to work, we not create a system where HIV-infected people are forced to work, either part-time or full-time, particularly in areas where no support services exist. Individuals must be allowed to decide when, and if, to work. Given the possible health repercussions which might arise from a less than accommodating workplace, forcing an unprepared person to work while attempting to adhere to complicated medical regimes might place that person's health in severe jeopardy. Furthermore, there is no evidence as yet of the longterm efficacy of the new treatments. If the current hope for further success of combination therapies becomes a reality for more people, the issue of work will become increasingly important. However, preliminary reports note that as many as 25-40% of people with HIV may be unable to benefit from the current generation of protease inhibitors due to toxicity, viral resistance or other factors.51 Additionally, many disenfranchised HIV-infected persons, particularly in homeless populations, are sometimes not offered protease inhibitors due to their presumed inability to adhere to the strict instructions of the medical regimen.52 For those not on these medications, or not able to experience significant results, the idea of going to work indeed, the very idea of "a new era of HIV" is alien. This fact must be taken into consideration as the general public, policy makers, and private and public funders shift their attention and resources away from the broader, continuing concerns of people with HIV. We must not leave those most disenfranchised by HIV, and by society, behind in our excitement to rush people with HIV into self-sufficiency.
Furthermore, the competition for funding between different components of the AIDS service net researchers, service providers, prevention educators and treatment facilities will only continue to worsen as public and private monies tighten and as funding priorities shift particularly toward the new, and exciting, arena of work entry/re-entry. Many community leaders are beginning to indicate their preferences for particular funding. For example, in 1996, Cleve Jones, founder of the NAMES Project, indicated in the Wall Street Journal his strong belief that drugs, research and treatment should be the priority for funding sources, not social services.53 Lynda Richardson, of the New York Times, stated, "As lower-income minorities rather than white middle-class gay men have become the prime target of AIDS, racially charged tension has increased over the role that leading AIDS service agencies should play, and where resources should be invested, according to patient advocates and researchers."54
Work programs for people with HIV must not be created by shifting funds from other HIV-related services. Without research and treatments, the survival rates of HIV-infected people are sure to be put in jeopardy and the elusive cure will not be found. Cuts in social services will create an increasingly challenging outlook for those same people the research and treatment communities are determined to save. As the number of deaths decrease, the number of people living with HIV is increasing, and undoubtedly will continue to increase. HIV-infected people will continue to need case management, life skills trainings, housing and psychosocial support, with increasing numbers of individuals necessitating increased funding. New HIV infection rates must be reduced through an expanded focus on prevention, never yet funded commensurate with its importance. It is only through the realization that we are, unfortunately, far from beating the epidemic that we are a long way from a true "new era of HIV" that we will begin to grapple with how best to add a focus on work entry/re-entry to our research, prevention, care and treatment efforts, rather than substituting this new focus for the continued and much needed range of services and funding.
While many broad work-related initiatives affecting a wide range of people with HIV deserve support, such as reform of federal work disincentives, many more questions remain unanswered regarding the specific needs of disenfranchised populations with HIV and the relevance of those needs to the work entry/re-entry issue. In order to ascertain the appropriate and complete answers to these questions, we recommend that, at a minimum, the following steps be undertaken and fully funded:
1) A national needs assessment must be conducted in order to determine the work-related needs and desires of HIV-infected disenfranchised populations. The assessment should include a broad sample of women, youth, people of color, substance users, ex-offenders and low-income people. As discussed above, currently available information about work-related needs has been developed using data from a very different population, and may therefore have little relevance. As of yet, no specific outreach to disenfranchised persons with HIV has been done to ascertain either the relevance of the work entry/re-entry issue, or to further determine specific concerns and needs.
To date, no state rehabilitative agencies have engaged in an assessment of these groups. However, state agencies serve more clients within some of these populations than many HIV service organizations, and thus have access to an enormous amount of potential data. In addition, state agencies are federally funded to provide vocational rehabilitation services; a needs assessment should thus be within their purview. We recommend a collaborative effort between state departments of vocational rehabilitation, local community-based organizations, and an independently funded research team to design, perform and evaluate a national needs assessment. We believe that by creating this multi-level joint effort, and by utilizing client bases within different arenas, we will have access to the most comprehensive information available regarding the issue of work entry/re-entry for disenfranchised people with HIV.
2) Roundtables of those with expertise in work entry/re-entry issues, and those with HIV from disenfranchised communities, should be assembled to discuss issues specific to HIV-infected disenfranchised people. AIDS service providers who work particularly with women, youth, people of color, poor people, substance users and ex-offenders should also be invited to attend these regional or local roundtables. By utilizing the knowledge of both those who have committed their professional lives to assisting disenfranchised populations and those who are themselves disenfranchised, a wealth of multi-dimensional knowledge will be accessed.
3) There must be extensive collaboration between the HIV and disability rights communities. Disability rights groups have tremendous experience and knowledge around issues such as work entry/re-entry for disabled people, Social Security reform, consumer choice, and systemic change in general. We must not reinvent the wheel, but instead, learn from their experience and join in their advocacy around these issues, instead of continuing to be insulated within our own communities. At the same time, we must continue to advocate that HIV be consistently placed on the "disability" agenda. In order to facilitate a mutual sharing of knowledge and ideas, service providers and policy makers within the different disability communities should be integrated into the roundtables, forums and joint public policy/advocacy efforts.
4) The voices of HIV-infected persons from disadvantaged communities must be heard. Community-based focus groups should be held around the country, and a broad sample of women, youth, people of color, poor people, substance users and ex-offenders should be invited to discuss their experiences, needs and desires regarding joining the workforce. Without input from these communities, it will be impossible to determine what can be done to assist HIV-infected disenfranchised communities.
The implementation of these recommendations will require concerted and collaborative effort among the HIV and disability communities, policy makers, and varied public, private and community-based agencies. In addition, significant funding of these efforts will be required, along with a focus on the lessons that must be learned prior to the creation of work-related programs and vocational advocacy for people with HIV.
The "new era of HIV" is beginning to move the AIDS community into directions it has long hoped for. The prospect that HIV is being transformed into a "manageable, chronic disease" has engendered discussions about issues such as work entry/re-entry which are both exciting and heartening. However, we must be conscious of the fact that this time of hope is just that: the long-term benefits of the still relatively new drug therapies are yet unknown and advanced therapies are simply not working for, or available to, everyone.
Thus, the shifting of resources and priorities in this time of new hope is premature and does a disservice to both those with HIV who are more disenfranchised and those who are less so. Policy makers and private and public funders must assess the broader and increasingly complex environment of the HIV epidemic and commit to continuing dialogue with community-based AIDS service providers and people with HIV regarding the wide array of services and protections that must continue to be provided in order to support both those who can work and those unable to do so. In our rush to reintegrate people with HIV into the world of work, we must not leave behind those people who are so often forgotten in society generally women, youth, people of color, substance users and poor people. Our developing services must represent all those who need to be served. We must utilize the expertise of important resources within our reach, such as the disability rights community, and we must collaborate broadly as we advocate for the programs, funding and services that will greatly enhance the lives of all people with HIV. As work-related services are developed in this "new era of HIV," they must be done so in the context of the continuing and still developing epidemic.
1 Ann Kaner-Roth
provided research and writing for this analysis; Irwin E. Keller, Esq. assisted
in editing; and the Northern California Grantmakers AIDS Task Force contributed
funding.
2 Terkel, S. Working. New York: Avon Books, p. xv. (1972).
3 Freud, S. Civilization and its Discontents. New York: W. W. Norton and Co.,
Inc. (1962).
4 For a discussion of some of the barriers preventing women and other disenfranchised
groups from securing health care that could improve their health sufficiently
to make work a viable option, see Hansen, E. Barriers to Health Care for HIV-Positive
Women: Deadly Denial. AIDS Legal Referral Panel (1998).
5 Centers for Disease Control and Prevention. Update: Trends in AIDS Incidence
United States, 1996. Morbidity and Mortality Weekly Report. 46 (No. 37) (1997).
6 Wortley, P.M. and Fleming, P.L. AIDS in Women in the United States: Recent
Trends. Journal of the American Medical Association. Vol.278, No.11:911-916
(1997).
7 CDC. HIV/AIDS and Women in the United States, (mid-year 1997).
8 Forbes, A. Myths and Fact About HIV Case Reporting By Name Versus By Unique
Identifier. (September, 1997).
9 Altman, L. AIDS Deaths Drop 19% in U.S., Continuing a Heartening Trend. New
York Times. (July 15, 1997).
10 Ibid.
11 Brooks, R. Assisting Persons Living with HIV/AIDS to Return to Work: Findings
From Three Focus Groups. AIDS Project Los Angeles. (April, 1997).
12 Ibid.
13 Brooks, R. Assisting Persons Living with HIV/AIDS to Return to Work: Findings
From Three Focus Groups. AIDS Project Los Angeles. (April, 1997).
14 Feldblum, C.R. Workplace Issues: HIV and Discrimination in AIDS Agenda. W.W.
Norton & Co., Inc. (1992).
15 Mayor's Summit on AIDS and HIV, Preliminary Report at 59. (January 27, 1998).
16 Carpenter, et al. Mayor's Summit on AIDS and HIV, Preliminary Report at 57.
(January 27, 1998).
17 Forum on Employment Issues with People with HIV/AIDS. (January 28, 1998).
Based on discussion with ALRP Benefits Attorney, Betsy Johnsen, Esq.
18 See AIDS Legal Referral Panel Action Alert: Support the Needs of People with
HIV Entering the Workplace. (March, 1998). See also, National Council on Disability,
Return to Work for People with Disabilities: Action Proposals for the 105th
Congress. (March, 1997).
19 Marin Foundation Forum At the Crossroads: Decisionmaking in the "New Age
of HIV." (October 16, 1996.) Discussion with ALRP Executive Director, Irwin
Keller, Esq.
20 On June 25, 1998, the U.S. Supreme Court ruled on this, its first HIV-related
case, and held that a person with asymptomatic HIV infection is, in fact, considered
to be "disabled" for the purpose of protection from discrimination under the
Americans with Disabilities Act (ADA).
21 Runnebaum v. NationsBank of Maryland; Docket No. 94-2200 (Aug. 15, 1997).
22 Kim Painter, People Less Judgmental, Fearful About AIDS. USA Today. (Oct.
9, 1997).
23 The importance of focusing on the needs of underserved communities emanates
not just from a concern for inclusiveness. If people with HIV are able to gain
access to private health insurance that enhances their chance of receiving quality
health care and living longer, healthier lives, then a dual direct bearing results
from their being helped to work.
24 We are using the terms "lower-income" and "poor" interchangeably, in order
to differentiate between those who, prior to HIV infection, supported themselves
through low wage jobs and/or welfare programs. It is understood that a high
percentage of people with HIV utilize public benefits, including Medicaid and
Medicare, since many left the workplace and lost group health insurance coverage
as a result of their health condition.
25 Eichler, A. Directive to Colleagues. U.S. Department of Health & Human Services.
(July 1, 1997).
26 Ibid. Taken from the Federal Rehabilitation Act of 1973, as amended (Title
I - Vocational Rehabilitation Services), 29 U.S.C. §§ 701 et seq.
27 Vander Waerdt, P.A. Memorandum Re: Eligibility of Vocational Services for
CARE Act Funding. (July 11, 1997).
28 Ibid.
29 Ibid.
30 Ibid.
31 AIDS Benefits Counselors. Application to the Department of Education for
Federal Assistance: Work Place Re-Entry for People with HIV Disease and AIDS.
(March 18, 1997).
32 Ibid.
33 Reported at Forum on Employment Issues for People with HIV/AIDS. (January
28, 1998).
34 Personal conversation with ALRP Public Policy Director, Eileen Hansen. (February,
1998).
35 Reported at Forum on Employment Issues for People with HIV/AIDS. (January
28, 1998).
36 Brooks, R. Assisting Persons Living with HIV/AIDS to Return to Work: Findings
From Three Focus Groups. AIDS Project Los Angeles. (April, 1997).
37 AID Atlanta Reconstruction Survey. (1997).
38 MTS Transitional Employment Model. (1997).
39 Ibid.
40 Northwest AIDS Foundation. Back-To-Work Survey. (March, 1997).
41 Returning to Work with HIV/AIDS: Public Policy Roundtable. (July 21-22, 1997).
42 Ibid.
43 Private Industry Council Annual Report. (1996).
44 The Life Program. A New Employment Program for People with HIV. Pamphlet.
(1997).
45 AIDS Benefits Counselors. Application to the Department of Education for
Federal Assistance: Work Place Re-Entry for People with HIV Disease and AIDS.
(March 18, 1997).
46 Mayor's Summit on AIDS and HIV, Preliminary Report at 106. (January 27, 1998).
47 Ibid.
48 National Council on Disability. Return to Work for People with Disabilities:
Action Proposals for the 105th Congress. (March, 1997).
49 MacDonald, B. Fix It Kit: The Road to Social Security Reform, 1997-1998.
Center for Independent Living. (1997). 50 National AIDS Fund. Return to Work
Initiative. (May 2, 1997). Three separate calls by a project consultant at the
National AIDS Fund to the Social Security Administration yielded three entirely
different answers to his questions only one example of the many barriers to
negotiating Social Security benefits while attempting to join the workforce.
51 AIDS Benefits Counselors. Application to the Department of Education for
Federal Assistance: Work Place Re-Entry for People with HIV Disease and AIDS.
(March 18, 1997).
52 Bangsberg, D. et al. Protease Inhibitors in the Homeless. Journal of the
American Medical Association (JAMA). Vol. 278, No. 1 (1997).
53 McGinley, L. Price of Success: Powerful Treatments Create Growing Rift Among
AIDS Groups. Wall Street Journal. (December 20, 1996).
54 Richardson, L. A Gap in the Resume: When HIV Loosens Grip, It's Back to the
Job Market. New York Times. (May 21, 1997).