Education + Advocacy = Change

Click a topic below for an index of articles:

New-Material

Home

Donate

Alternative-Treatments

Financial or Socio-Economic Issues

Forum

Health Insurance

Hepatitis

HIV/AIDS

Institutional Issues

International Reports

Legal Concerns

Math Models or Methods to Predict Trends

Medical Issues

Our Sponsors

Occupational Concerns

Our Board

Religion and infectious diseases

State Governments

Stigma or Discrimination Issues

 

If you would like to submit an article to this website, email us at info@heart-intl.net for a review of this paper

any words all words
Results per page:

“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

 

 

  


 

Growth House Logo

 

A WAITING ROOM OF THEIR OWN: THE FAMILY CARE NETWORK AS A MODEL FOR PROVIDING GENDER-SPECIFIC LEGAL SERVICES TO WOMEN WITH HIV

http://www.law.duke.edu/

JEFFREY SELBIN*
MARK DEL MONTE**
 

What were the conditions in which women lived, I asked myself . . . .1

I've had this damn virus for almost ten years now. I've been taking care of everybody else and beating down doors trying to get help for me and other women with HIV. People have got to understand that we've got our own needs -- it's our turn now.2
 

I. INTRODUCTION

As the fastest growing segment of the HIV epidemic in the United States, women with HIV have substantial needs for services, including legal services, many of which go unmet.3 HIV-infected women face numerous, varied, and [*pg 104] complex gender-specific barriers that prevent them from accessing legal services at the rate and in the manner that they would in the absence of such barriers. The legal community can and should better serve women with HIV, and this Article describes a model for doing so.

Many actual or potential populations eligible for legal services are underserved, and providers of legal services have undertaken a variety of strategies to overcome the barriers such populations face. Legal services providers to people with HIV historically have tailored their delivery models in response to the "cultural" specificity of groups within the HIV-infected community.4 Part II of this Article chronicles the legal community's culture-specific responses to the changing needs of the HIV-infected community, from the early days of the "gay plague" and the first wave of the HIV epidemic to the second-wave needs of low-income people with HIV. Part III gives an overview of the "third wave," which is marked by the burgeoning HIV epidemic among women, and explores the gender-specific barriers that make it difficult for HIV-infected women to access legal services. Part IV describes the Berkeley Community Law Center's HIV/AIDS Law Project and its participation in the Family Care Network ("FCN"), a comprehensive, integrated model for serving low-income women with HIV. This Part explores four approaches to delivering gender-responsive legal services within the FCN model, and identifies some early challenges to their implementation. Finally, the Article concludes with a call to devote more ideas, attention, and resources to meeting the legal needs of HIV-infected women.
 

II. A HISTORY OF LEGAL SERVICES TO PEOPLE LIVING WITH HIV

Imaginatively she is of the highest importance; practically she is completely insignificant.5

The history of legal services for people with HIV in the United States is in large part the history of the epidemic itself.6 Until recently, there have been two [*pg 105] demographic waves of the HIV epidemic that have affected overlapping but different subpopulations within society. As a result of significant cultural differences, the two communities have had distinct legal needs, not only in the substantive services they required, but also in terms of the manner in which these services were delivered. The legal community has responded to these differing needs with two distinct models of service provision.

A. The Epidemic's First Wave and the Referral Panel Response

The AIDS epidemic in the United States first manifested itself in the early 1980s among clusters of gay men in New York, San Francisco, and Los Angeles.7 Otherwise healthy young men were dying from obscure illnesses, primarily Kaposi's Sarcoma, a rare form of cancer, and Pneumocystis carinii pneumonia, a rare pulmonary infection.8 Although other people also were affected during this time, gay men were impacted in the greatest numbers. Of the 1366 AIDS cases reported to the Centers for Disease Control and Prevention (CDC) by May 1983, seventy-one percent were among gay men -- nearly three-quarters of whom were between the ages of twenty and thirty-nine.9 Compared to the individuals who would be infected in subsequent waves of the epidemic, many of those infected in the first wave were relatively affluent, educated, and employed.10

In addition to the obvious health and psychosocial implications of having AIDS, especially at a time when medical treatments largely were ineffective, the legal needs of these men were dramatically influenced by their illness. Due to the debilitating nature of HIV disease, most of these first-wave individuals were forced to cut back or stop work, to endure high medical costs not covered by in- [*pg 106] surance, and to plan for their early deaths.11 Many needed assistance in understanding and accessing employee benefits as they left work and help with financial planning as their assets and savings were consumed by health care costs.12 They very often required extensive estate planning assistance, such as wills, trusts, and durable powers of attorney, which often was made more complex by the law's indifference or even open hostility to their wishes with regard to their unmarried partners.13 If their partners died first, people with AIDS often needed assistance in probating the estate and to counter challenges to wills,14 again battling legal presumptions that either did not recognize -- or actively discriminated against them because of -- their "nontraditional" relationships. They further needed protection against the discrimination in employment, housing, and insurance that often accompanied a diagnosis of AIDS, 15 either on the basis of HIV status itself or on the basis of their sexual orientation, which was seen as synonymous with HIV infection.16

[*pg 107]

Compounding the acuity and complexity of their medical and legal needs, people with AIDS in the early 1980s also faced barriers to accessing legal services. For instance, although many of these men were quite capable of identifying their own legal needs and were comfortable negotiating the terms of legal representation with an attorney, most became unable to afford such assistance due to their disease-induced downward economic mobility.17 Understandably many also were reluctant to seek legal assistance for matters related to their disease. Homophobia was virulent prior to the AIDS epidemic; the early years of the "gay plague" added another level of hostility that often was visited upon anyone, whether gay or not, with an AIDS diagnosis.18 Clients were afraid to seek help, for example, with an HIV-related insurance discrimination claim because they did not want to risk further discrimination from a homophobic or AIDS-phobic attorney. Most gay men with AIDS, therefore, needed legal services provided at low or no cost in a culturally safe setting.

The earliest response to the HIV epidemic by legal service providers came from gay and lesbian attorneys responding to this devastating crisis in their community.19 In the early 1980s, at the epicenters of the epidemic in New York, Los Angeles, and San Francisco,20 gay and lesbian organizations recognized that people with AIDS had legal needs as a result of being HIV-infected and established legal services programs to address them. In New York City in 1983, Gay Men's Health Crisis, an AIDS service organization formed the year before, and the Bar Association for Human Rights of Greater New York, a gay and lesbian bar association, jointly established a program to provide legal services to people with AIDS.21 Similarly, the Los Angeles Gay and Lesbian Community Center added an AIDS component to its existing legal services program for gays and lesbians;22 and in San Francisco in 1983, another gay and lesbian bar association, [*pg 108] the Bay Area Lawyers for Individual Freedom, created the AIDS Legal Referral Panel to meet the growing legal needs of people with AIDS.23 By 1988, Miami, Washington, D.C., and Chicago, the next three U.S. cities hardest hit by AIDS,24 all had active referral panels, and by 1991, at least thirty-seven separate referral panels or AIDS service organizations with referral panel components existed.25

The basic service delivery model of the referral panel was to recruit attorneys who agreed to accept one or more cases on behalf of people with HIV on a pro bono or sliding-scale basis. Volunteer attorneys were trained, not only on issues of relevance to HIV and the area of law in which they would provide assistance, but frequently on HIV sensitivity and the disease itself. In fact, most panel attorneys in the early years were lesbians and gay men, many of whom were themselves HIV-infected, and the majority of whom were in private law practice.26

Clients accessed panel services by telephone, were screened to identify their legal needs by what was usually a small in-house staff, and then were referred to a volunteer attorney on the panel who practiced, or had been trained, in the relevant area of law. The client then contacted the attorney directly, described the legal issue, negotiated the terms of the representation and received legal assistance. As a means of triaging limited resources in the face of great need, some referral panels provided services only to potential clients who had progressed to a diagnosis of AIDS-related complex ("ARC") or AIDS, the later stages of HIV disease.27

[*pg 109]

Referral panels assisted gay men in part by offering them the substantive legal services that they most needed. More than half of all services provided by the referral panels were wills and powers of attorney.28 Most panels also helped clients with a broad range of other legal matters, including discrimination claims, access to insurance and employee benefits, and filings for bankruptcy and probate.29 Services to help clients secure public entitlements, such as Social Security Disability Insurance, typically were offered to assist the clients with appeals, the traditional entry point for an attorney in such cases.30 Volunteer attorneys in larger programs provided services in virtually all areas of practice, from criminal defense to tax assistance.31

In addition to meeting their substantive legal needs, however, the referral panel model also addressed the culturally-constructed barriers HIV-infected gay men faced in obtaining access to services. The early referral panels not only were founded by gay and lesbian organizations, but often located their services within them.32 The panels did not base services in the traditional, public legal services settings for low-income people, nor in the better-funded, but generally more conservative settings of local bar associations. Eschewing both of these traditional vehicles, referral panels offered gay men access to legal services in contexts that were neither homophobic in general, nor AIDS-phobic in particular. Most referral panel attorneys were also in private practice, so that actual service delivery usually took place in the discrete, confidential setting of a law office. Clients, therefore, did not have to worry about encountering a hostile or even an unsympathetic attorney, as the panel acted as a filter and an intermediary between clients and attorneys.

Over time, with the expansion of the HIV epidemic out of the gay male community, many AIDS service providers and legal referral panels began targeting broader populations. Indeed, most of the referral panels today are not operated exclusively within gay and lesbian organizations,33 although the panels continue to serve large numbers of gay men who still constitute the majority of cumulative AIDS cases in the United States.34 Each year the referral panels pro- [*pg 110] vide high-quality, free or low-cost legal services to thousands of individuals from all segments of the HIV-infected community.35

B. The Second Wave and the Direct Services Response

At the same time that legal referral panels were being established in New York, San Francisco, and Los Angeles, infection rates already were peaking among gay men,36 although with the typical course of the HIV disease process, many would not become ill for years.37 During that period, there were ominous signs that the virus respected no culturally-constructed boundaries such as gender, race, and class. Poor people -- especially people of color, injection drug users, and women -- were increasingly affected as the epidemic entered its "second wave."38

By the mid-1980s, HIV infection, the harbinger of AIDS, was firmly entrenched in large urban populations throughout the United States,39 and by the late 1980s and early 1990s, those infected in the second wave of the epidemic were beginning to get sick. From 1985 to 1993, for example, the proportion of gay men among new AIDS cases dropped from approximately sixty-seven percent to about forty-seven percent, while the proportion of injection drug users among new cases increased from about seventeen percent to nearly twenty-eight percent.40 Among new cases in gay men in 1993, thirty-five percent were people of color; of the new cases among injection drug users that year, nearly eighty percent were people of color, including fifty percent African-Americans and almost thirty percent Latinos.41 New cases among women, though still representing a relatively small percentage of cumulative cases, also were increasing at a much faster rate than were new cases among gay men.42 And among men and women newly-diagnosed with AIDS in the late 1980s, from New York to California the common denominator was poverty.43

[*pg 111]

As the epidemic increasingly impacted low-income communities of color, the legal needs of people with HIV also began to shift. Although the referral panels continued to provide services to a growing and more diverse group of clients, the needs of low-income people with HIV were distinct in important ways from those of first-wave clients. Due to long histories of chemical dependency, low incomes, poor housing, and limited access to health care and other support services, most of the new faces of the epidemic had substantial unmet legal needs prior to contracting HIV. Many of these needs were ones that traditionally had been addressed in poverty law practices: basic public entitlements advocacy for welfare, SSI and Medicaid benefits; landlord/tenant law, especially eviction defense from private and public housing; family law, such as divorces and child custody matters; and consumer law, especially for relief from debts. They also had new needs as a result of facing a terminal illness, including simple estate planning in general, and planning for the care of minor children in particular.44

Like the HIV-infected gay men of the epidemic's first wave, the low-income individuals in the epidemic's second wave faced culture-specific barriers to accessing legal services. First, most low-income clients with HIV could not afford to pay for legal services, even on a sliding scale. Second, many low-income HIV-infected clients had limited transportation resources and needed legal services physically accessible to their communities, either located within the low-income community itself, or within easy reach of it by public transportation. Third, for injection drug users to access services at all, they often required the safety of a setting that was non-judgmental of their substance use. Fourth, some low-income people with HIV needed services either to be accessible to low-literacy English-speakers or to accommodate clients with first languages other than English, especially the growing number of Spanish-speaking clients. And finally, because many of their legal problems often were interwoven with poverty, racism, sexism, or chemical dependency, which, although exacerbated by their HIV disease also typically pre-dated it, low-income people with HIV needed services available at all stages of illness, not just at the end stages of AIDS.

As the legal services and delivery needs of the HIV-infected population changed, a new response emerged from the legal community: the in-house, direct services approach based in existing legal aid offices and law school clinics throughout the country. In 1987, law school clinical programs in Boston and Baltimore45 and a legal aid office in Atlanta46 founded projects specifically to [*pg 112] provide legal services to low-income people with HIV. Throughout the 1990s, direct legal services programs for people with HIV proliferated such that by 1997, they were comparable in number to the referral panels.47

Unlike many of the referral panels, these programs were founded predominantly by public interest and legal aid attorneys, not members of the private bar; like their predecessors at the referral panels, however, many direct services program founders were also members of the gay and lesbian community. These attorneys began seeing increasing numbers of HIV-infected clients in their day-to-day poverty law practices and felt compelled to respond.48

The basic delivery model of the direct services program is for attorneys, paralegals, and law students to provide site-based legal assistance to HIV-infected clients out of poverty law and law school clinic offices. Potential clients come to the law office or clinic by referral from other service providers in the community, by word of mouth in the client community, or through outreach. Once reaching the office, either by telephone or in person, clients generally are scheduled for an intake appointment during which they are interviewed. In law school clinics, this work typically is done by law students under the supervision of attorneys. Once legal needs are identified, as many services as possible are provided directly to HIV-infected clients and referrals are made for services not available on-site.

Most direct services programs for people with HIV already were designed to serve low-income clients generally, and thus were well-suited to meet the legal needs of low-income people with HIV. In addition to assistance with legal [*pg 113] problems falling into the broad range of services already offered in these programs, many direct services providers added basic estate planning and established or expanded existing family law practices to meet the growing demand of young HIV-infected clients with children.

In addition to the substantive services being offered, direct services programs also met many of the other needs of low-income people with HIV. All programs provided free services,49 and almost all were located in the communities they were serving, making them physically accessible to many low-income HIV-infected clients. Most programs did not refuse to serve or otherwise restrict services to active injection drug users, and, based on years of experience in doing so, many provided services that were adapted to the needs of clients with low literacy or limited English. Finally, in spite of scarce resources, almost none of the legal services offices and law school clinics triaged assistance based on disease progression.50

Today, at least forty-nine organizations around the country, including at least ten law school clinics and twenty-one legal aid offices, have targeted direct legal services programs for people with HIV.51 These programs make an enormous contribution to meeting the legal needs of thousands of low-income people with HIV across the country each year.

While referral panels and direct services programs continue to address the legal needs of many first and second wave HIV-infected clients, a "third wave" of the HIV epidemic is underway. Women, particularly low-income women of color, have emerged as the fastest-growing segment of the epidemic.52 This demographic shift has important implications both for service needs and for the manner in which these services are delivered. The next Part explores in more detail the feminization of the epidemic and the gender-specific barriers to legal services for the rapidly expanding number of HIV-infected women.

[*pg 114]
 

III. THE "THIRD WAVE" AND THE NEEDS OF HIV-INFECTED WOMEN

She lives in you and in me, and in many other women who are not here tonight, for they are washing up the dishes and putting the children to bed.53

AIDS in the United States is increasingly a disease of low-income women of color, disproportionately affecting some of the most politically, socially, and economically disempowered and marginalized members of society. Although they share many legal and other needs with low-income HIV-infected people generally, women living with HIV also face many distinct, gender-specific barriers to having their needs met.

A. The Feminization and Marginalization of the HIV Epidemic

By December 31, 1996, 89,208 women had been diagnosed with AIDS in the United States, representing approximately fifteen percent of the cumulative reported AIDS cases.54 In 1985, however, women represented just over seven percent of AIDS cases,55 while in 1996 alone, 13,820 women were diagnosed with AIDS,56 representing twenty percent of the total number of new cases that year, the highest proportion of women ever diagnosed.57

Women of color are dramatically overrepresented in the AIDS epidemic. More than three-quarters of all women with AIDS in the United States are women of color, including fifty-five percent who are African-American and another twenty percent who are Latina.58 These figures for African-American and Latina women are seventeen and six times higher, respectively, than they are for white women.59 While AIDS is already the third leading cause of death among all women in the United States between the ages of twenty-five and forty-four, it is the leading cause of death for African-American women of those ages.60 As these statistics suggest, AIDS continues to impact primarily young women. To date, eighty-four percent of all women with AIDS were diagnosed before the age [*pg 115] of forty-five,61 the vast majority of whom contracted the virus in their teens and twenties, given the typical disease progression of HIV.62 Although national statistics regarding these data are not maintained, data from representative studies of HIV-infected women show that most have low incomes and many have two or more dependent children for whom they are the primary provider.63

Women with HIV also are disproportionately either injection drug users or have sexual partners who are injection drug users. Since 1981, forty-five percent of the women diagnosed with AIDS contracted HIV through intravenous drug use and thirty-eight percent contracted the virus through heterosexual contact.64 Given the number of infected women who contracted the virus either through sexual partners who are known injection drug users or through sexual partners whose risk factor is unknown, between sixty and eighty percent of all women with AIDS contracted HIV either through injection drug use or through sex with an injection drug user.65

Given current trends, there are more than 100,000 women in the United States who have now been diagnosed with AIDS.66 Since AIDS diagnoses represent only the end stage of what often is a ten to fifteen year disease process, 67 it is estimated that as many as 250,000 women in the United States have been in- [*pg 116] fected with HIV and/or have AIDS.68 Even with no new HIV infections, the number of women with AIDS will continue to grow both in real numbers and as a percentage of all AIDS cases well into the next century.69

B. Obstacles to Meeting the Legal Needs of Low-Income Women with HIV

According to the most comprehensive and detailed report on the needs of HIV-infected women in the United States:

Women [with HIV/AIDS] often have multiple service needs. For example, a woman with HIV/AIDS may need drug treatment, primary health care including gynecological care, and mental health services, as well as child care and transportation. Particularly important are "bridge services," which enable women to take advantage of other services. For example, a woman may need temporary guardianship or emergency child care during hospitalization. Other roles and demands may prevent women with HIV/AIDS from seeking treatment. Women "often place seeking care for themselves below subsistence needs such as food, housing, employment, and the welfare of their children."70

Women with HIV face considerable, gender-specific barriers to having these multiple and complex needs met. Barriers both external to service provision and inherent in current delivery models make the task of providing legal services to HIV-infected women daunting.

The first and perhaps greatest single obstacle to serving HIV-infected women is reaching them.71 Evidence and experience alike show that because they are typically the primary care providers, women will put the needs of their children above almost all else, even to their own detriment.72 Even if childcare itself is not an obstacle to care, many low-income women with HIV lack the financial and logistical resources to transport themselves and their children to one or more service providers; being ill, trying to get to an appointment via public transportation, and having to bring along two or three small children, one or more of whom may themselves be sick, is an overwhelming task for many HIV-infected women.

HIV-infected women also often face internal barriers erected by legal providers themselves. Some HIV programs continue to triage scarce resources by [*pg 117] providing services only to people with more advanced disease. While in some respects this may be a reasonable way to ration services,73 it simultaneously denies assistance to those for whom legal need is independent of disease progression and to those in the later waves of the epidemic. As with other low-income clients, the legal needs of HIV-infected women often either predate their infection or are otherwise not related directly to their stage of illness. And since women are in the third and most recent wave of the epidemic, and therefore less likely as a group to be as ill as those infected in the earlier waves, such triaging also disproportionately limits the services available to them.74

In addition, given the demographics of the early epidemic, many HIV service providers were neither founded by women, nor designed with their needs in mind.75 While women with HIV may not demand that services to them be provided only by women, they do define "good" HIV care to "include respect, understanding, good listening skills, clear communication, patience, nonjudgmental attitude, and willingness to help the women make the best decisions for themselves."76 The gender and cultural differences that often exist between women with HIV and legal providers further add to the challenge of effectively reaching and appropriately serving HIV-infected women.

The second major obstacle to providing legal services to HIV-infected women is that they often do not identify their needs as legal. Many clients are not aware of, for example, the full range of public benefit programs for which they or their children are eligible. Public assistance programs such as Temporary Assistance to Needy Families (TANF),77 which impact more women than men, have undergone significant changes in eligibility requirements in recent years;78 likewise, several states recently have enacted new guardianship laws of particular relevance for many women with HIV.79 In fact, most low-income women with HIV have multiple legal needs, many of which can be met in tradi- [*pg 118] tional poverty law practices.80 They also have other needs, such as advocacy around access to clinical trials and new therapies, domestic violence prevention, and assistance in making provision for the care of minor children,81 which, though not of exclusive concern to women with HIV, are nonetheless disproportionately particular to them. However, women can avail themselves of these options and services only if they are aware of them and understand that the issues they are confronting -- e.g., insufficient income, substandard housing, inadequate access to health care, and uncertain financial and family planning -- are at least partly "legal" in nature.

A third obstacle to providing legal care for many HIV-infected women is a corollary to the second obstacle described above. Women with HIV often need services before a problem they are experiencing has progressed to the point where an attorney will recognize it as a "legal" one. For instance, most public and private law offices will only take public benefits cases once they are scheduled to be heard by an administrative law judge.82 Since many low-income women with HIV either do not seek public benefits to which they are entitled or are unable to follow through with the cumbersome and complicated application and appeal processes, this effectively precludes them not only from obtaining any legal assistance, but more importantly from securing much-needed benefits. Many low-income women with HIV also need relief from creditors for debts ranging from local charge cards to ambulance bills. Since these same women often are "judgment-proof,"83 they need not, and in fact, cannot, discharge their debts in bankruptcy, which is the "legal" proceeding for doing so. They could greatly benefit, however, from the relatively simple assistance of an attorney sending a letter to the creditor and invoking the federal law that requires the creditor to cease correspondence with the debtor and deal only with the attorney regarding collection activity.84 This seemingly minor, "non-legal" assistance can make an important difference in the day-to-day life of an HIV-infected client who needs relief from an aggressive bill collector.85

[*pg 119]

Finally, an important barrier to fully serving women with HIV is that their legal needs are almost always inextricably linked with non-legal needs.86 Women with HIV have multiple roles within family and society that result in a complex set of challenges and responsibilities, including, for many, trying to make ends meet on very low incomes, caring for children on their own, living in overcrowded and/or substandard housing, struggling with chemical dependency, dealing with the criminal justice system,87 and worrying about their health and the health of their children who may themselves be HIV-infected. Legal services that are not integrated with other vital services to HIV-infected women -- such as primary medical care, mental health, substance use treatment, case management, emergency financial assistance, and respite care -- will at best only partially address clients' needs.88

Any model for delivering legal services to HIV-infected women, therefore, must address these barriers and the next Part describes one such model.

 

IV. A MODEL FOR COMPREHENSIVE INTEGRATED LEGAL CARE FOR HIV-INFECTED WOMEN

Drawing her life from the lives of the unknown who were her forerunners . . . she will be born. As for her coming without that preparation, without that effort on our part, without that determination that when she is born again she shall find it possible to live . . . that we cannot expect, for that would be impossible.89

The evolving demographics of the AIDS epidemic have necessitated culture-specific responses to meet the legal needs of people with HIV. As a second wave provider, the Berkeley Community Law Center (BCLC) has offered direct legal services to low-income people with HIV for more than seven years. Recently, BCLC joined a project created explicitly to meet the needs of HIV-infected women. Described below is the history of BCLC's direct services program, a new gender-specific model designed to serve the legal needs of women with HIV, and some early challenges that have been identified in implementing the model.

[*pg 120]

A. The Berkeley Community Law Center's HIV/AIDS Law Project

The Berkeley Community Law Center is a non-profit law office founded in 1988 to provide free legal services to low-income residents of Alameda County, California, and to serve as a clinical placement for law students from the University of California's Boalt Hall School of Law. In September 1990, BCLC conducted a needs assessment and identified substantial unmet need for legal services among low-income HIV-infected people in the county.90 Following the assessment, BCLC established the HIV/AIDS Law Project ("Project") to provide such services. As with many other direct services programs,91 the Project targets legal services to low-income HIV-infected clients, especially women, children, people of color, the homeless, and injection drug users. The Project assists clients at all stages of illness, from asymptomatic HIV to end-stage AIDS. Since October 1990, the Project has provided direct legal representation to over 1000 HIV-infected clients with more than 2500 legal issues,92 including benefits advocacy, simple estate planning, debt relief, family law, and other basic civil legal services. The clients have been predominantly men, most of whom have been people of color, primarily African-American (61%), with smaller numbers of Latino (10%), Asian-American (2%), and Native American (1%) clients.93

Day-to-day client services are provided by staff attorneys and trained law students working under the supervision of staff attorneys. Clients are referred to the HIV/AIDS Law Project from other service providers, are contacted by the staff at outreach sites94 and community education efforts,95 or come to the Project through word of mouth. Attorneys and students screen callers and drop-in clients to establish that the client is a low-income Alameda County resident with HIV, and schedule intake appointments or see drop-in clients immediately in order to assess the client's legal needs. In addition to discussing the legal problem originally identified by the client, advocates conduct a thorough screening of the client's short and long-term legal services needs. The Project provides as [*pg 121] many basic legal services as possible on-site to reduce the inevitable attrition involved in making off-site referrals.96

By focusing representation on a narrow class of clients (low-income people with HIV are a relatively small percentage of all low-income people), the Project has tried to increase its impact on the people and institutions whose decisions affect clients' lives and the lives of similarly-situated clients.97 This "direct service as impact" approach has had some successes and also has encountered some challenges.98 Importantly, through a relatively high-volume practice, the Project has identified and addressed some substantial issues affecting its clients. For example, based on needs expressed by many HIV-infected women, the Project initiated efforts to make California's guardianship options more user-friendly for all terminally ill parents, and helped draft California's joint guardianship legislation and later amendments.99

The Project has tailored its services and delivery system in response to the external input of on-going needs assessments conducted by HIV-specific planning bodies in the county, which routinely include interviews and focus groups with HIV-infected clients. In addition, the Project conducts internal evaluation and review of its programs via user audits, client surveys, and focus groups to minimize the danger of routinizing insensitive, improper, or substandard practices. And finally, the Project helped develop, and now operates under, a written "standard of care" that sets forth minimum expectations for all providers of client advocacy, including legal services, to people with HIV in Alameda County.100

In spite of the Project's having had modest success in serving women with HIV over the last seven years,101 many women nonetheless continue to face substantial and extensive barriers to accessing legal services.102

[*pg 122]

B. The Family Care Network and Gender-Equitable Legal Services for Women with HIV

In August 1997, the HIV/AIDS Law Project was invited to join the Family Care Network, which was founded in 1994 as a consortium of two public entities -- a county hospital serving adults with HIV and a home-based nurse case management provider to people with HIV, and two private entities -- a hospital serving children with HIV and a methadone clinic serving HIV-infected injection drug users. In addition to adding the Project as a legal services component, the network also was expanded to include substance abuse and mental health counseling, peer advocacy, and a third primary health care site.

The devastating impact of the AIDS epidemic in Alameda County, which is generally representative of the epidemic nationally, provided the impetus for the FCN.103 Of the 4835 people who have been diagnosed with AIDS in Alameda County through 1996,104 three-quarters reside in the urban, northern part of the county,105 and most of the rest live in cities to the south.106 Although men still constitute the majority of cumulative reported AIDS cases (90%),107 and whites a plurality of cumulative cases (48%),108 AIDS is growing fastest in the county among women and African-Americans, who made up twenty109 and fifty-five percent,110 respectively, of all new AIDS cases in 1996.

Consistent with national trends, seventy-six percent of all women diagnosed with AIDS in Alameda County are women of color: including African-Americans (62%), Latinas (9%), Asian/Pacific Islanders (3%), and Native Americans (1%). Of the women with AIDS in the county, eighty-four percent are between the ages of twenty and forty-nine,111 forty-four percent contracted HIV through injection drug use, and another forty percent were infected through heterosexual contact.112 Heterosexual contact is the fastest-growing transmission category, representing eleven percent of new AIDS cases in Alameda County in [*pg 123] 1996.113 It is estimated that another 7100 Alameda County residents are infected with HIV, but not yet diagnosed with AIDS114 -- at least twenty percent of whom are women.115 And as with HIV-infected women nationally, most HIV-infected women in the county are also low-income, and three-quarters have children.116

The goal of the Family Care Network is to provide comprehensive, integrated care to HIV-infected women, children, and adolescents by bringing a broad range of needed services under one roof, and by linking the providers in a care team. Through integrating services and moving from a crisis-response to a crisis-prevention approach to care, providers from several disciplines work together with HIV-infected women to address some of their most complex needs. The HIV/AIDS Law Project's role within the FCN model of care is designed explicitly to respond to the gender-specific needs of HIV-infected women by emphasizing four approaches to delivering legal services: 1) "one-stop shopping;" 2) proactive needs assessment; 3) early intervention; and 4) multidisciplinary integration and coordination of services.

1. "One-Stop Shopping." Recognizing that HIV-infected women often seek medical care for their children before tending to their own health care and face substantial barriers to all services because of childcare and transportation needs, the FCN has centralized its services at Children's Hospital Oakland ("Children's"), a primary health care provider serving virtually every child either infected with HIV or born to an HIV-infected mother in the East Bay.117 During a doctor's appointment with her child at Children's, an HIV-infected mother can have her own health care and other needs addressed by accessing on-site services that include adult primary care and continuity nursing services provided by the Alameda County Medical Center HIV Services Division ("Highland"), peer advocacy provided by Women Organized to Respond to Life-threatening Disease ("WORLD"), substance use and mental health counseling provided by the East Bay Community Recovery [*pg 124] Project, hospital-based case management and clinical social work provided by Children's, and legal services provided by BCLC's HIV/AIDS Law Project.118

The three FCN primary health care providers, Children's, Highland, and Alta Bates Medical Center's East Bay AIDS Center ("EBAC"), also can enroll an HIV-infected mother and/or her children in clinical trials,119 and all of the on-site providers can refer her directly to FCN-dedicated slots for additional services including home-based nursing case management provided by the Alameda County Ambulatory Care HIV Services and methadone maintenance at the Fourteenth Street Clinic. Finally, the FCN administers a "Consumer Access Fund" at Children's, which is a financial resource dedicated expressly to "remov[ing] barriers to families' access to care, such as child care, transportation, physician-recommended over-the-counter drugs, toiletries, emergency utility bills and food vouchers."120 Any FCN provider can obtain these funds quickly and directly on behalf of clients who face such barriers. Although many women may choose to avail themselves of only one or two of these services on any given visit,121 this "one-stop shopping" is a major improvement over the decentralized service delivery system that existed prior to the FCN.122

2. Proactive Legal Needs Assessment. Once a relationship with an FCN client has been established at one of the primary care sites, the Project provides a proactive assessment to assist her in identifying her legal needs. This "legal checkup"123 takes the form of a thorough interview with the client where staff attorneys ask explicit questions about the client's potential legal needs. The Project has developed a legal screening form for this purpose that staff attorneys attempt to complete during the course of [*pg 125] representation, although the client is not pressured into going through the entire screening on the first encounter. For example, a woman with children may be uncomfortable discussing plans or even options for the care of her children upon her incapacity or death during her first meeting with an attorney. Although the Project's goal is to identify issues early and address them before they become crises, during the initial meeting it is sometimes necessary for Project attorneys to respond to such a crisis, in which case the staff "stabilizes" the client's legal situation before proceeding with a fuller assessment at a later date.

Proactive assessments also can help to uncover issues that may seem unrelated to the identified legal need but that in fact may be connected intimately. For example, the Project assists clients who are being evicted for non-payment of rent when the underlying cause of the eviction, e.g., the inability to pay rent, is due to a lack of cash benefits to which the client is entitled, but which she is not receiving. Only by screening the client for a range of issues when she presents for assistance can such connections be made and adequately addressed. The Project also proactively screens HIV-infected women to counsel them about the legal issues they may face in the future and the options they have for resolving them. This on-going process is an important form of education, both for the client about her options and also for the attorney in assessing the client's evolving needs.

3. Early Legal Intervention. Once a client's needs have been identified in the process described above, the Project provides a broad range of civil legal assistance to HIV-infected women.124 In order to achieve a better legal outcome for clients and to reduce the stress of waiting until matters reach emergency proportions, the Project has adopted what is called an "early intervention" model of service provision.125 Assuming the Project has identified client needs in these areas, examples of early intervention include, but are not limited to, assistance with: all public and private benefits and health insurance needs, regardless of the "stage" at which they are identified; all disputes with landlords, public or private and all family and immigration matters, irrespective of whether a formal legal proceeding is underway; and all matters involving creditors or collection agencies, whether or not a bankruptcy is necessary or desirable. The Project also encourages all FCN clients to complete "estate" documents such as wills and powers of attorney for health care and finances well in advance of any illness that may necessitate the use of such documents. Early intervention can prevent many incipient legal [*pg 126] problems from becoming more difficult, time-consuming, and stressful for the client and the Project to resolve.

4. Multidisciplinary Integration and Coordination of Services. Finally, legal help may be an important "enabling" or "bridge" service,126 but only if it is provided in coordination with other services. As in the medical care setting, where HIV-infected women prefer to be treated holistically,127 so too in the legal services setting do women need integrated services that recognize, respect, and respond to the complexity of their lives.128 The FCN coordinates all care, including legal assistance, at several levels.

The FCN is administered by an Executive Committee that is comprised of one representative from each agency and a representative from the Alameda County Department of Public Health's Maternal, Adolescent, and Child Health.129 At least one member of the Executive Committee also must be a person infected with HIV.130 The Executive Committee meets monthly to plan services, allocate funds, and ensure the implementation of coordinated services.

  


 

In addition, the frontline providers of services from each agency meet monthly as the Client Services Workgroup ("Workgroup"). The goal of the Workgroup is to serve as the multidisciplinary setting in which clients' cases are discussed in order to maximize the effectiveness of service provision. The meetings are similar to the multidisciplinary case conferences often utilized in health care settings.131 Workgroup and Executive Committee members also each serve on at least one of several Subcommittees, established to address issues of importance to the functioning of the FCN and the delivery of its services.132 The Executive Committee, Workgroup, and Subcommittees are staffed by the FCN Program Director, a full-time administrator whose primary responsibility is coordinating Network activities.

If the Executive Committee is the head of the FCN and the Workgroup its hands, the "peer advocates" from WORLD are the eyes, ears, and heart of the Network. These ten HIV-infected women provide part-time, peer-based psy- [*pg 127] chosocial case management to FCN women and families, including emotional support, information and referral, escorts for women on medical visits, and general assistance in reducing barriers to care. The peer advocates have primary assignments to the other providers in the FCN, where they act as "point persons" to help providers overcome any internal barriers to services. The peer advocates not only come from the community they serve, but as HIV-infected women of color, mothers, and in recovery,133 they are the community they serve; and as such, they are a critical component in fully integrating services to FCN clients.

The advantages of integrating legal services with other services to HIV-infected women clients are substantial. For example, a claim for Medicaid or Supplemental Security Income disability benefits on behalf of an HIV-infected woman will be more likely to succeed if it is undertaken both with the close collaboration of the treating primary and mental health care providers whose opinions are so central to such claims, and with the emotional and practical support of a peer advocate who may have already gone through the process herself. Successful permanency planning, such as petitioning for joint or standby guardianship, likewise benefits from the multidisciplinary team approach of health care providers, social workers, peer support, and attorneys who together with the client can best address her medical, psychosocial, logistical, and legal needs in considering the future care of her children. Finally, the synergy of professionals and peer advocates from different backgrounds educating each other and bringing to the Network different perspectives on how to meet needs can increase considerably the information and options available to HIV-infected women as they make important health care, legal, and other decisions for themselves.134

C. Some Early Challenges to Comprehensive, Integrated Legal Care

The FCN model has shown great promise for increasing and improving services to women with HIV. During the six months in which the Project has participated in the Network, more HIV-infected women have been served than in any other comparable period in the Project's seven-year history. In addition to the general challenge of reaching and serving HIV-infected women, however, there are other challenges to integrating attorneys into the delivery model described above. The components of this new legal services delivery system -- off-site provision, proactive legal assessments, early intervention, and integrated, comprehensive legal care -- raise questions about the role of the Project's attorneys, their relationships to their clients, and the feasibility of reproducing the model elsewhere. Upon evaluating the Project's brief participation in the FCN, the following initial observations are offered.

[*pg 128]

1. Decentering Legal Services and Professional Culture. Having been involved in providing legal services to women with HIV for many years and having tried to respond to their needs, the Project agreed to join the FCN and integrate its services with others in the Network. This decision has meant that the Project's work has been decentered in at least a couple of important ways. First, the Project has placed a staff attorney off-site in order to fully participate in the Network. On the one hand, this clearly locates services in a setting more accessible to FCN clients and provides for the multidisciplinary "synergy" discussed above. On the other hand, it may be professionally isolating for the attorney, who loses the support of office culture, the consequences of which are not yet known.135 Second, in this new model, legal needs often are secondary to the overall care of an FCN client. Attorneys are accustomed both to seeing their role as central and to having others view them that way. In a truly integrated model, the attorneys are only one of many important voices. For the aspirations of the new model to be fully realized, attorneys will have to learn to challenge some of their own professional, and perhaps personal, norms.136

2. Proactive Assessments and Client Autonomy. Although the Project has been conducting proactive legal assessments for many years, participating in the FCN has refocused the Project's attention on what it means to assist clients in identifying their own legal needs. The Project utilizes a screening form developed specifically for the FCN that is completed with each client during the course of the Project's assistance. The form was designed to include most of the legal needs and issues facing low-income women with HIV. Nonetheless, the Project is cautious about imposing this conceptual framework on clients' complex and varied experiences, especially since they often are so different from those of the attorneys assisting them.137 The Project also faces an additional challenge given the inordinate influence the attorneys' views typically have on clients' understanding of their choices and the decisions they make in relation to those choices.138 The presence of other care providers, such as [*pg 129] social workers, case managers, and especially the peer advocates, may mitigate these risks, but attorneys at the Project will continue to struggle with achieving the appropriate balance between proactively assessing clients' legal needs and simultaneously respecting their autonomy.139

3. Early Intervention and "Role Uncertainty." In order for the Project's services to meet more fully the needs of HIV-infected women, attorneys must be generalists, both by providing a wide range of legal services and by expanding their notion of what it means to act in their professional role through practicing early intervention: assisting in eviction cases before they become formal legal matters; advocating for clients in disability cases before they get to the hearing stage; and intervening on behalf of clients with creditors and collection agencies even when a bankruptcy is not needed. This raises questions such as: What is an attorney's "role"? How do attorneys, or should attorneys, distinguish themselves from other professional services providers?140 And even if attorneys in such a model focus just on traditional legal representation, can they competently practice as generalists, when the legal profession, and the law itself, continues to move in what seem like inexorably more complex and specialized directions? These are large and unresolved questions that can be answered at best in partial, contingent steps as the Project evolves.

4. Service Integration and Client Confidentiality. The FCN model also poses many challenges to traditional conceptions of client confidentiality. Integrated service delivery requires a great deal of information-sharing about some of the most personal and intimate concerns of a client.141 For example, a client's HIV status, the HIV status of her children, her relationship to the father of her children, the nature and extent of any disabling symptoms she experiences, and other information may need to be shared among [*pg 130] FCN providers. When such information is obtained in the law office setting at BCLC, attorneys emphasize to the client that it is held in strict confidence. In addition to meeting professional responsibilities, making such an assurance increases the level of trust a client has in her attorney and thereby presumably increases the amount and veracity of the information she will share.

In an integrated delivery system, by contrast, the client is asked to divulge information with the explicit understanding that it may be shared with other services providers, including her health care provider, case manager, substance use counselor, and peer advocate, who will also share what information they obtain from the client with the Project's attorneys.142 In fact, when a client's consent to share information is sought, the client is informed that she can be better served if she agrees to allow the Project to share her information with the other providers in the FCN. Given both the great need such a client typically has for all FCN services and the substantial power imbalance inherent in the attorney's relationship to the client, it is questionable whether such consent can be freely and meaningfully obtained. Negotiating such an important and difficult issue is critical to the ultimate success of an integrated delivery system.

5. The FCN Model and Resource Scarcity. Finally, resource scarcity clearly is implicated in the FCN model. Proactive, comprehensive, integrated legal care is more resource-intensive than is traditional provision of legal services. For example, while a typical legal aid attorney might assist several hundred clients per year, the large majority of whom are provided only advice or brief service,143 the Project anticipates an attorney serving approximately sixty FCN clients per year. Such a limited, focused approach might be controversial even in an era of plentiful resources, but it is being proposed at a time of great financial uncertainty for most legal services providers.

Traditional public resources for legal assistance to low-income clients are dwindling. The 1996 budget of the federally funded Legal Services Corporation (LSC), which supported many of the early direct services programs for people with HIV, was cut by one-third.144 Most legal aid programs across the country [*pg 131] either are scaling back their programs, including centralizing offices,145 thereby decreasing clients' access to services, or are closing altogether. In addition, Interest on Lawyers Trust Accounts (IOLTA) funding, which has supported many direct services and referral panels for people with HIV,146 has fallen by at least one-half due to sharp decreases in interest rates since the early 1990s and teeters on the brink of elimination.147 The future of foundation and corporate support, which has been important to serving people with HIV, is uncertain at best, with some funders shifting their focus from an epidemic erroneously declared "over" to communities impacted by welfare reform.148 Law school clinic expansion also is unpredictable and has been relatively static in terms of the number of HIV-dedicated clinics since their proliferation in the early 1990s.149

The lone, but substantial, good news continues to be the federally-funded Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which was passed in 1990150 and was reauthorized in 1996 for a second five-year period.151 Titles I and II of the CARE Act support many referral panel and direct services programs for people with HIV,152 including BCLC's HIV/AIDS Law Project. Title IV of the CARE Act specifically supports comprehensive services to women, children, and adolescents with HIV,153 and is the source of all FCN funding. Even if these sources of funding continue to be available beyond their current authorization, however, the dearth of resources in the face of an overwhelming need for services among low-income people likely will persist. For the foreseeable future, low-income communities and those who provide services [*pg 132] to them will be left to make painful choices about where and how to direct the existing limited resources.154

 

V. CONCLUSION

But I maintain that she would come if we worked for her, and that so to work, even in poverty and obscurity, is worth while.155

Individuals and organizations that have been providing legal services to people with HIV during the last fifteen years have attempted to meet the changing needs of the HIV-infected community by offering culture-responsive models of care. The referral panel and direct services models have been exemplary in overcoming many of the barriers to accessing legal services faced by people with HIV in the first and second waves of the epidemic.

Women with HIV, however, face obstacles that are distinct from first and second wave clients and necessitate a service model that addresses their specific needs. The approaches embodied in BCLC's participation in the Family Care Network -- one-stop shopping, proactive needs assessment, early intervention, and multidisciplinary integration and coordination of services -- represent one effort to overcome the gender-specific barriers to legal services for women with HIV. This model cannot and will not be replicated everywhere, but it is offered in the hope of generating more ideas, targeting more resources, and identifying more opportunities to serve the increasing number of HIV-infected women in the United States who have such extraordinary unmet legal needs.

The challenges to meeting these needs are formidable, but the stakes are high. For an HIV-infected woman, access to legal services can mean the difference -- for her and her children -- between eating and going hungry, between being housed and being homeless, and between having improved access to quality health care and no health care at all. For the legal community, providing gender-equitable legal services to women with HIV fulfills the profession's highest aspirations -- giving content to the commitment of equal justice for all.



 

  


 

FOOTNOTES

*

B.A., University of Michigan, 1983; J.D., Harvard Law School, 1989. Jeffery Selbin is the Founder and Director of the HIV/AIDS Law Project at the Berkeley Community Law Center in Berkeley, Calfornia. He was formerly the Supervising Attorney/Skadden Arps Fellow at the Legal Services Center in Jamaica Plain, Massachusetts.

**

B.A., Gonzaga University, 1994; J.D., University of California at Berkeley (Boalt Hall), 1997. Mark Del Monte is a staff member of the HIV/AIDS Law Project at the Berkeley Community Law Center in Berkeley, California.

The authors would like to thank the editors of the Duke Journal of Gender Law & Policy and the participants in the Journal's February 1997 symposium, HIV Law & Policy: Ensuring Gender-Equitable Reform. We also would like to thank the following people who graciously reviewed drafts of this article: Laurel Fletcher, Arlene Joe, Irwin Keller, Elise Brown, Eileen Hansen, Betsy Johnsen, and Bernida Reagan. We extend our appreciation to our colleagues at the Berkeley Community Law Center for their support and encouragement. Special thanks to Dr. Kathleen Clanon who provided invaluable assistance with this Article and to our HIV-infected clients, to whom we dedicate this piece.

1.

VIRGINIA WOOLF, A ROOM OF ONE'S OWN 41 (Harvest/HJB Books 1989) (1929).

2.

See Interview with Yvonne "Bunny" Knuckles, 59-year old, African-American, HIV-infected mother of two, grandmother of six, and Family Care Network peer advocate, in Oakland, Cal. (Dec. 10, 1997).

3.

Cf. HEALTH RESOURCES & SERVS. ADMIN., U.S. DEP'T OF HEALTH & HUMAN SERVS., RESPONDING TO THE NEEDS OF WOMEN WITH HIV: TITLE I AND TITLE II RYAN WHITE CARE ACT 1 (1997) (citation omitted) [hereinafter RESPONDING TO THE NEEDS OF WOMEN WITH HIV] ("In general, women affected by HIV have traditionally been underserved by the health care system . . . even when such factors as time since diagnosis, insurance status, exposure category, race, and disability status for Medicaid eligibility were controlled."); see also Susan L. Waysdorf, Families in the AIDS Crisis: Access, Equality, Empowerment, and the Role of Kinship Caregivers, 3 TEX. J. WOMEN & L. 145, 149 n.7 (1994) ("Women with HIV infection and AIDS generally have been excluded from clinical drug trials, have been left undiagnosed, are generally poorer, have no health insurance, and have no point of entry into the health care system necessary to obtain effective treatment of AIDS." (citation omitted)).

4.

Although the HIV-infected "community" includes all people living with HIV, its interests are not monolithic. People with HIV in the United States are of all ages, genders, ethnicities, races, nationalities, sexual orientations, economic backgrounds, spiritual communities, and abilities. Nevertheless, within subcommunities of the larger HIV-infected community-among, e.g., gay men, low-income people, or women-members share many distinct characteristics that have implications for service needs. The use of the term "culture" in this Article is meant to refer to these distinct characteristics.

5.

WOOLF, supra note 1, at 43.

6.

This Part does not purport to tell the history of legal services to people with HIV/AIDS. Like all histories, this one is constrained at a minimum by the purpose of the project, which in this instance is to describe the legal community's response to the culture and gender-specific needs of individuals with HIV. It is not possible, therefore, to do justice here to the thousands of attorneys who have dedicated all or part of their legal careers to serving people with HIV, nor to the substantial amount of impact litigation and policy and legislative advocacy undertaken on behalf of people with HIV in general and women with HIV in particular by scores of local, state, and national organizations. For a survey of AIDS-related law, see generally AIDS AND THE LAW: A GUIDE FOR THE PUBLIC (Harlon L. Dalton et al. eds., 1987), and AIDS AND THE LAW (David W. Webber ed., 3d ed. 1997).

7.

See generally RANDY SHILTS, AND THE BAND PLAYED ON: POLITICS, PEOPLE, AND THE AIDS EPIDEMIC (1987) (providing a history of the early years of the HIV epidemic in the United States). The global AIDS pandemic, however, is predominantly a heterosexually-transmitted phenomenon. See UNAIDS/WORLD HEALTH ORG. WORKING GROUP ON GLOBAL HIV/AIDS AND STD SURVEILLANCE, REPORT ON THE GLOBAL HIV/AIDS EPIDEMIC (Nov. 29, 1997) <http://www.unaids.org/highband/document/epidemio/report97.html> (estimating that two-thirds of all people with HIV live in sub-Saharan Africa, where approximately 20.8 million individuals have been infected).

8.

Before the term "AIDS" or Acquired Immune Deficiency Syndrome was adopted officially in July 1982, see SHILTS, supra note 7, at 169-71, the epidemic was often referred to as "GRID" or Gay-Related Immune Deficiency, see id. at 121. Kaposi's Sarcoma frequently was referred to as "gay cancer" and pneumocystis as "gay pneumonia." See id. at 110, 116.

9.

See SHILTS, supra note 7, at 286-87. Men of all risk groups comprised about 93% of cumulative AIDS cases in 1985 and 90% of reported AIDS cases through the end of 1990. See RESPONDING TO THE NEEDS OF WOMEN WITH HIV, supra note 3, at 75. But see discussion infra note 57 for an explanation of the chronic undercounting of women prior to 1993.

10.

Although no national data on the socioeconomic status of people with HIV have been collected, indirect indicia such as census tract information and the absence or presence of public or private health insurance, demonstrate a clear distinction between the relative affluence of those impacted in the early years of the epidemic and those impacted in later years. See Daniel Fife & Charles Mode, AIDS Incidence and Income, 5 J. ACQUIRED IMMUNE DEFICIENCY SYNDROMES 1105, 1108 (1992) (documenting differences in AIDS incidence, medical insurance status, and survival after diagnosis that were consistent with major differences in medical care by income and race); see also infra note 43 and accompanying text.

11.

From 1980-85, the median life expectancy for men from date of AIDS diagnosis was approximately 12 months. See Peter Bacchetti et al., Concise Communications: Survival Patterns of the First 500 Patients with AIDS in San Francisco, 157 J. INFECTIOUS DISEASES 1044, 1044 (1988) (noting that the "estimated overall median survival time was 11 mo [sic]"); Richard Rothenberg et al., Survival with the Acquired Immunodeficiency Syndrome: Experience with 5833 Cases in New York City, 317 NEW ENG. J. MED. 1297, 1299 (1987) (noting that the "median conditional probability of survival from the date of diagnosis was 347 days").

12.

See Rhonda R. Rivera, Lawyers, Clients, and AIDS: Some Notes from the Trenches, 49 OHIO ST. L.J. 883, 903-21 (1989) (discussing issues surrounding employer-provided health insurance and employment); see also AIDS LEGAL REFERRAL PANEL OF THE S.F. BAY AREA, AIDSLAW: A MANUAL ON PROVIDING LEGAL SERVICES FOR PERSONS WITH HIV INFECTION 1.6 (Clint Hockenberry ed., 2d ed. 1988) [hereinafter AIDSLAW MANUAL] ("Within a year a person with AIDS can go from a forty thousand dollar a year salary to an annual seven thousand dollars in social security payments. At the same time, the person with AIDS is liquidating assets rapidly to pay for medicines, shelter, and food."); see generally Samuel A. Marcosson, Who is "Us" and Who is "Them"-Common Threads and the Discriminatory Cut-Off of Health Care Benefits for AIDS Under ERISA and the Americans with Disabilities Act, 44 AM. U. L. REV. 361, 369-432 (1994) (arguing that people with AIDS are treated differently by the law for purposes of employer-provided or employer-subsidized health insurance).

13.

See AIDS PRACTICE MANUAL: A LEGAL AND EDUCATIONAL GUIDE 4-2 (Paul Albert et al. eds., 3d ed. 1992) [hereinafter AIDS PRACTICE MANUAL] (discussing procedures for personal and estate planning); Marcosson, supra note 12, at 403-04 ("[J]udges often appear unable to focus on the legal issues raised by litigation where sexual orientation issues lurk somewhere in the case, especially when recognition of the right asserted might produce what seems to be a pro-gay rights outcome . . . . [T]hey are failing to apply settled law to cases simply because they happen to touch on or implicate lesbian and gay rights."); Rivera, supra note 12, at 893-903 (discussing estate planning issues for people with AIDS); see generally LESBIANS, GAY MEN, AND THE LAW (William Rubenstein ed., 1993) (discussing bias against gay men and lesbians in the law); Jane Harris Aiken, Striving to Teach "Justice, Fairness, and Morality," 4 CLINICAL L. REV. 1, 35 n.123 (1997) ("The heterosexual bias in the law is most evident in such areas as privacy, marriage and child rearing." (citations omitted)).

14.

See AIDS PRACTICE MANUAL, supra note 13, at 4-14 (noting a disproportionate number of challenges to the wills of gay people with AIDS); Rivera, supra note 12, at 891-95, 900-03 (discussing the need for protection of gay men with AIDS and their partners from will contests and planning for funeral arrangements).

15.

See Penn Lerblance, Legal Redress for Disability Discrimination: Bob, Carol, Ted and Alice Encounter AIDS, 24 GOLDEN GATE U. L. REV. 307, 311-12 (1994) ("AIDS-based discrimination has been, and continues to be, widespread in employment, housing, public accommodations, and other areas of life.").

16.

See CINDY PATTON, INVENTING AIDS 117 (1990) ("In addition to whatever individual prejudices non-gay people with AIDS had, they were also subject to a backhanded homophobia due to their association with a disease apparently inextricably marked as 'gay.'"); Amber Hollibaugh et al., The Second Epidemic, in AIDS: CULTURAL ANALYSIS, CULTURAL ACTIVISM 128 (Douglas Crimp ed., 1988) ("[H]ealthy gay men and lesbians . . . were encountering both antigay and AIDS-related discrimination-being fired from their jobs, thrown out of their homes, called 'queers' and 'AIDS carriers' . . . because they were gay or . . . perceived to be gay.").

17.

See AIDSLAW MANUAL, supra note 12, at 1.6.

18.

See Lerblance, supra note 15, at 309-10 ("In a well known case, Ryan White, an HIV infected school child, was told he could not attend public school because he was HIV infected. . . . [H]e and his family were effectively run out of their home and forced to move to a different community because of hostile attitudes and adverse reactions to his presence."); see also supra note 16 and accompanying text.

19.

See AIDSLAW MANUAL, supra note 12, at 1.10.

20.

These three cities continue to be the hardest hit by the AIDS epidemic in the United States with 91,799, 34,643, and 24,272 cumulative AIDS cases reported through the end of 1996 in New York, Los Angeles, and San Francisco, respectively. See CENTERS FOR DISEASE CONTROL & PREVENTION, U.S. DEP'T OF HEALTH & HUMAN SERVS., NO. 2, HIV/AIDS SURVEILLANCE REPORT 8-9 tbl.2 (1996) [hereinafter HIV/AIDS SURVEILLANCE REPORT 1996].

21.

See AIDS COORDINATION PROJECT, AMERICAN BAR ASS'N, DIRECTORY OF LEGAL RESOURCES FOR PEOPLE WITH AIDS & HIV 249 (Michele Zavos ed., 1991) [hereinafter DIRECTORY OF LEGAL RESOURCES 1991]; see also AIDSLAW MANUAL, supra note 12, at 1.12 (providing information and background on Gay Men's Health Crisis).

22.

See DIRECTORY OF LEGAL RESOURCES 1991, supra note 21, at 57. In 1986, a second, and larger, AIDS-specific referral panel was established by the Los Angeles County Bar Association. See AIDSLAW MANUAL, supra note 12, at 1.13.

23.

See DIRECTORY OF LEGAL RESOURCES 1991, supra note 21, at 65.

24.

See HIV/AIDS SURVEILLANCE REPORT 1996, supra note 20, at 8-9.

25.

See generally DIRECTORY OF LEGAL RESOURCES 1991, supra note 21 (counting self-described referral panels and those whose primary service model was volunteer attorneys). In Miami, the Volunteer Lawyers Program was established in 1988. See id. at 105-06. In Washington, D.C., the Whitman-Walker Clinic was established in 1986. See id. at 99. In Chicago, the AIDS and Civil Liberties Project was established in 1985 and the AIDS Legal Council of Chicago was established in 1988. See id. at 127-31. In addition to these local programs, several national organizations undertook AIDS law projects during this period-the National Lawyers Guild AIDS Network (1985), the AIDS Civil Rights Project of National Gay Rights Advocates ("NGRA") (1985), and the Lambda Legal Defense and Education Fund AIDS Project ("Lambda") (1987). The Guild AIDS Network produced an early manual for attorneys serving people with HIV, see AIDS PRACTICE MANUAL (1st ed. 1986), and co-produced the second edition with NGRA, see AIDS PRACTICE MANUAL: A LEGAL AND EDUCATIONAL GUIDE ix (Paul Farmer et al. eds., 2d ed. 1988). The third edition was produced by the Guild AIDS Network in conjunction with Gay Men's Health Crisis, see supra note 21 and accompanying text, AIDS Law Project of Pennsylvania, see infra note 46, and Whitman-Walker Clinic, see infra note 118. See AIDS PRACTICE MANUAL, supra note 13, at 15. Lambda has been instrumental in conducting AIDS-related litigation and also produced one of the first books on legal issues and AIDS. See Lambda Legal Defense & Educ. Fund, Inc., AIDS Project Attorney Hired, LAMBDA UPDATE, Winter 1987, at 4.

26.

See AIDSLAW MANUAL, supra note 12, at 1.10.

27.

See id. at 1.5 (describing one argument in the triage debate: "For every client with AIDS and ARC, there are ten more who are seropositive [infected with HIV]. Given the herculean response to the current caseload, it is impractical to extend services to those not in immediate need."). Some AIDS service providers continue to triage services based upon disease progression, though most referral panels no longer do so. Compare AIDS COORDINATION PROJECT, AMERICAN BAR ASS'N, DIRECTORY OF LEGAL RESOURCES FOR PEOPLE WITH AIDS & HIV 20-37 (Clifton J. Cortez, Jr. & Joel M. Long eds., 2d ed. 1997) (cataloging the legal resources for people with HIV/AIDS, including in California, for example, where only 1 of 16 AIDS projects in the state appeared to triage its clients by disease progression in 1997) [hereinafter DIRECTORY OF LEGAL RESOURCES 1997], with DIRECTORY OF LEGAL RESOURCES 1991, supra note 21, at 45-74 (cataloging the legal resources for people with HIV/AIDS, including in California in 1991, where 3 of the 13 AIDS projects in the state triaged their clients by disease progression).

28.

See AIDSLAW MANUAL, supra note 12, at 1.6-.7.

29.

See id. at 1.37.

30.

See Irwin E. Keller, Public Benefits for Persons with HIV, in AIDS AND THE LAW, supra note 6, § 9.20, at 420; see also THOMAS P. MCCORMACK, THE AIDS BENEFITS HANDBOOK: EVERYTHING YOU NEED TO KNOW TO GET SOCIAL SECURITY, WELFARE, MEDICAID, MEDICARE, FOOD STAMPS, HOUSING, DRUGS, AND OTHER BENEFITS 19 (1990).

31.

See AIDS LEGAL REFERRAL PANEL, 1991 ANNUAL REPORT 6 (1991); AIDSLAW MANUAL, supra note 12, at 1.37. The AIDSLaw Manual, produced by the AIDS Legal Referral Panel of the San Francisco Bay Area, is one example of the many important contributions that referral panels have made to serving the legal needs of people with HIV.

32.

See discussion supra notes 19-25 and accompanying text.

33.

See generally DIRECTORY OF LEGAL RESOURCES 1997, supra note 27 (cataloging HIV/AIDS legal assistance programs in the country).

34.

Gay men and injection drug-using gay men comprise 56% of cumulative reported AIDS cases through December 1996. See HIV/AIDS SURVEILLANCE REPORT 1996, supra note 20, at 10 tbl.3.

35.

See generally DIRECTORY OF LEGAL RESOURCES 1997, supra note 27

36.

See Philip S. Rosenberg et al., Population-Based Monitoring of an Urban HIV/AIDS Epidemic: Magnitude and Trends in the District of Columbia, 268 JAMA 495, 501 (1992) ("[M]odels of HIV-infection incidence suggest two broad epidemic waves of HIV infection. The first occurred in MSWM [Men who have Sex With Men]. For this group, estimated infection peaked during the period from 1982 through 1983, with lower incidence from then on.").

37.

See TEXTBOOK OF AIDS MEDICINE 51 (Samuel Broder et al. eds., 1994) (noting that "the median time between initial infection [with HIV] and the development of an AIDS-defining illness is 10-12 years").

38.

See SHILTS, supra note 7, at 261 ("This proliferation of AIDS [in 1983] through the East Coast corridors of poverty heralded the start of the second AIDS epidemic in the United States, distinct from the epidemic in gay men."); Rosenberg et al., supra note 36, at 501.

39.

See Rosenberg et al., supra note 36  at 497-98.

40.

See Centers for Disease Control & Prevention, U.S. Dep't of Health & Human Servs., Heterosexually Acquired AIDS-United States, 1993, 43 MORBIDITY & MORTALITY WKLY. REP. 155 (1994).

41.

See CENTERS FOR DISEASE CONTROL & PREVENTION, U.S. DEP'T OF HEALTH & HUMAN SERVS., NO. 4, HIV/AIDS SURVEILLANCE REPORT 9 (1993).

42.

See id. at 8.

43.

Although national statistics on AIDS and income are not kept, see discussion supra note 10, Medicaid utilization studies in New York and California, and census tract studies in several urban cities support the trend described here. See Daniel Fife & Charles Mode, AIDS Prevalence by Income Group in Philadelphia, 5 J. ACQUIRED IMMUNE DEFICIENCY SYNDROMES 1111, 1114 (1992) (citing Thomas R. Fanning et al., The Epidemiology of AIDS in the New York and California Medicaid Programs, 4 J. ACQUIRED IMMUNE DEFICIENCY SYNDROMES 1025, 1034 (1991)); Leigh E. Krueger et al., Poverty and HIV Seropositivity: The Poor are More Likely to Be Infected, 4 AIDS 811, 811 (1990).

44.

See Rivera, supra note 12, at 891-911, 921-25. Many attorneys assume that low-income people do not need "estate" planning. However, durable powers of attorney for health care and finances are important tools for people who have wishes regarding these issues, regardless of economic status. Further, wills are important both for planning, often including planning for the care of minor children, and also culturally for some clients who feel that executing a will is what a responsible person preparing for her death does.

45.

The clinics were located at the Legal Services Center of Jamaica Plain, a clinical program sponsored by Harvard Law School and at the AIDS Legal Clinic of the University of Maryland Law School. See DIRECTORY OF LEGAL RESOURCES 1991, supra note 21, at 175, 159. Over the next few years, other law school clinical programs began providing HIV-specific services, including St. Louis University Law School (Health Law Clinic) (1988); University of Wisconsin (AIDS Legal Services Project, Center for Public Representation, Inc.) (1989); Arizona State University (HIV Legal Support Clinic) (1989); University of Iowa College of Law (AIDS Representation Project) (1990). See id. at 199, 359, 41, 143; see also Aiken, supra note 13, at 31-46 (providing a general description of the Arizona State University clinic). The HIV/AIDS Law Project at the Berkeley Community Law Center, which is affiliated with the University of California, Boalt Hall, was established in 1990. See infra Part IV.A

46.

The legal aid office in Atlanta was the Atlanta Legal Aid Society. See DIRECTORY OF LEGAL RESOURCES 1991, supra note 21, at 115. Other early legal aid programs for people with HIV were in Alabama (Legal Services Corporation of Alabama, 1987), Indiana (Legal Services Organization of Indiana, 1991), and New York (Brooklyn Legal Services Corporation, 1989 and Nassau/Suffolk Law Services, 1990). See id. at 33, 135, 233, 225. An independent non-profit was established with both a direct services and a referral panel component in Philadelphia (The AIDS Law Project of Pennsylvania, 1988). See id. at 307.

47.

This comparison is derived from cross-referencing three different, but overlapping, sources. Compare DIRECTORY OF LEGAL RESOURCES 1997, supra note 27, and NATIONAL LEGAL AID & DEFENDER ASS'N, THE 1995/96 DIRECTORY OF LEGAL AID & DEFENDER OFFICES IN THE UNITED STATES & TERRITORIES 221-22 (1995), and ASSOCIATION OF AM. LAW SCHOOLS SECTION ON CLINICAL EDUC., 1996 DIRECTORY 101-02 (1996), with DIRECTORY OF LEGAL RESOURCES 1991, supra note 21 (listing specific legal services programs and referral programs).

48.

Attorney Theresa McGovern, who founded the HIV Project at MFY Legal Services in New York, described her experience as follows:

In 1988, I was working in a poverty-law office in Manhattan's Hell's Kitchen neighborhood. The office, which was in a city-owned, run-down vermin-infested building, had only one great resource-clients. I hadn't thought about AIDS as an issue facing our clients until I noticed that some of our clients, particularly women-were dying.

Theresa McGovern, Book Notes: Women, AIDS & Communities: A Guide to Action, PAACNOTES, May-June 1992, at 156.

49.

See DIRECTORY OF LEGAL RESOURCES 1991, supra note 21. At least one program, the AIDS Law Clinic at the Legal Services Center in Jamaica Plain, Massachusetts, however, had sliding-scale services in anticipation of serving some HIV-infected clients who were not low-income. See id. at 175.

50.

See supra note 27

51.

See DIRECTORY OF LEGAL RESOURCES 1997, supra note 27. Although most legal services providers assisting people with HIV fall into the two categories of volunteer referral panels and direct services providers, increasingly some do not. For instance, some referral panel providers have added direct services components, while some direct services providers also maintain panels of volunteer attorneys. See generally id. Moreover, many referral panels responded to the changing demographics of HIV-infection by adding new components such as outreach programs, in-house direct services, and by linking with other providers to reach underserved groups. See AIDS LEGAL REFERRAL PANEL, 1990 ANNUAL REPORT 11 (1990) (providing an example of outreach programs to people of color and other underserved groups).