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The Social Impact of Aids in the United States 8 Public Policies on Children and Families The HIV/AIDS epidemic has touched American law at many points, both in legislation and litigation, in many jurisdictions. Most of the legislation has dealt with public health issues, which are discussed in Chapter 2. In litigation, a recent article states (Margolick, 1991:1): ''A wave of AIDS-related lawsuits has swept over the courts. Most involve discrimination, the blood supply, and criminal prosecutions, but there are innumerable other permutations concerning everything from free speech to child custody to libel to will contests." Although the existence of litigation is unquestionable, the quantity is, in fact, unknown. Whether the "wave" is a tidal wave or a large surf is unclear. Nevertheless, U.S. law, at the legislative and judicial levels, has had to face difficult and sometimes unprecedented problems. The panel could have attempted an entire survey of the effect of AIDS on the legal system, but judged that the evidence, apart from public health legislation, was still too slim and scattered; we chose, instead, to focus on one area of legislation and litigation, namely, that which establishes public policy regarding families and children. This may be but a small corner in the world of law and public policy, but it is, in our judgment, of great importance in view of the populations most affected by the HIV/AIDS epidemic. All societies have sets of norms that define what relationships count as family and dictate permissible forms of intimate interaction. In the United States and other industrialized nations, governments cast many of these norms into statutes and other formal rules that prescribe such matters as
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The Social Impact of Aids in the United States who can marry, who is financially responsible for the care of children, and what reproductive control methods are permissible. Governments also use less coercive policies to guide or reward family-related behavior. They use tax laws and welfare programs to recognize the needs and costs of those living in certain family configurations and to validate their acceptability. They use public health and school programs to encourage people to engage in behaviors considered socially desirable. When the AIDS epidemic began, many U.S. policies bearing on families and other intimate relationships were in a period of transition, and AIDS raised difficult, often inconvenient, questions of family policy of at least three sorts. First, because AIDS is transmitted by sexual acts, governments had to come to grips with widely varying public attitudes about sexual behavior and about the appropriate role of government in influencing behavior. Everyone knew that many young people have sex (Hayes, 1987) and that many men have sex with other men (Fay et al., 1989). Some officials were not alarmed by these behaviors or, if they were, were willing to acknowledge they existed and urge precautions. Others, however, were unwilling to appear to condone the behaviors at all. School boards wrestled and are still wrestling with whether to distribute condoms to high school students (Galst, 1992), and states and the federal government responded variously to requests for support of programs that sought to eroticize safer sexual practices among gay men (Barnes, 1989). States have similarly wrestled with the degree to which they should rely on compulsory rules to induce desired sexual behaviors. Thus, many states considered and two states adopted and then repealed legislation requiring HIV antibody testing before marriage (Joseph, 1989).1 And many states adopted statutes making it a felony for persons who knew that they carried the virus to engage in sex without informing their partner (Hermann, 1990; see also Chapter 2). Second, since AIDS is also transmitted perinatally, it necessarily involves the relationship between a woman and a fetus she is carrying. Government officials have thus struggled with the appropriate advice to give HIV-infected women regarding decisions about birth control and abortion (Bayer, 1990). Many women with HIV have been offered tortured advice wrapped in euphemisms to "postpone" having children (Centers for Disease Control, 1985). And, as described in Chapter 4, scientists who have wanted to administer AZT to HIV-infected pregnant women to learn whether they could prevent transmission of the virus to the fetus have encountered hostility from women's advocates seeking to ensure that the pregnant woman's health is in no way compromised in the name of trying to protect the unborn child. Third, since AIDS is a protracted illness and invariably leads to death, family-related policy issues arise during the last stages of the disease and at the point of death. Disputes have erupted between gay men's lovers and
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The Social Impact of Aids in the United States parents over such issues as hospital visits or the authority to make decisions about life-prolonging medical procedures (Steinbrook et al., 1986). Women with HIV have wanted to keep their children with them as long as possible under welfare programs that provide little financial support and to control the placement of their children when they are no longer able to provide care. This chapter presents case studies of the relationship between AIDS and two sets of family policies affected by AIDS; even more narrowly, it concentrates on these policies in a few selected cities and states. The first case study is that of public issues distinctly related to newborns and children with AIDS. In programs to keep children with their biological parents and in programs to respond to children who must be placed with others, New York and Florida have had to contend with familial issues under strained circumstances—issues of financial responsibility and parental control. The two states sometimes responded similarly and sometimes rather differently, but both of their responses reveal anomalies in public policies that bear on low-income families with children. The second case study describes the efforts to gain legal recognition of nonmarital relationships, particularly the recognition of gay male and lesbian couples. We examine efforts in San Francisco to pass an ordinance to permit unmarried couples, including gay and lesbian couples, to register their relationship with the city and the quite different efforts in New York courts, legislatures, and agencies to expand the list of relatives entitled to remain in a rent-regulated apartment after the death of a tenant who had signed the lease. In each city, the issues had been debated before AIDS was a central feature of the city's life, but AIDS reshaped the debate in many ways. NEWBORNS AND CHILDREN Infants and children with AIDS pose different problems of social and family policy than adults with AIDS. Most of the differences stem from the necessarily dependent position of all young children. They must be cared for by others and decisions must be made for them. Policy makers have long debated how responsibilities for children and control over children should be divided between parents and the state (Mnookin and Weisberg, 1988). In the context of AIDS, problems of social policy arise in painful, problematic, and revealing manners because AIDS persistently pushes to extremes the burdens and responsibilities of caretakers and the state. Every newborn who is HIV positive has a mother who is HIV positive, a woman who is probably poor and may already be ill herself, a woman who has probably been an intravenous drug user. Mothers of HIV-infected babies commonly feel both depression and anxiety due to their own illness and the illness of their children, and knowing that the child became infected through
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The Social Impact of Aids in the United States them, they frequently experience guilt and the need for denial (Seibert et al., 1989; Septimus, 1989). All babies born to an HIV-infected mother carry passively acquired maternal antibodies to HIV. However, in only about one-third of such cases is the infant actually infected with HIV; those infants who are not infected will gradually lose maternal HIV antibodies, although they may persist until 15 months of age. Since standard tests for HIV detect HIV antibodies and not the virus itself, they cannot be used reliably to determine which infants born to HIV positive mothers have been infected until the child has lost the maternal antibodies. Even the use of less common and more expensive viral cultures is inappropriate in newborns because a negative culture is not sufficient to exclude HIV infection (Hardy, 1991). Therefore, the HIV status of infants born to HIV-infected mothers cannot be known by foster agencies or foster parents until well after birth. All children who are actually HIV-infected need extra attention from the point of birth (Hegarty et al., 1988). Unlike adults with HIV, roughly 20 percent of newborns with HIV become ill with AIDS-related infections within a year of their infection. Once ill, they tend to spend more days in the hospital than adults with AIDS. They typically have chronic growth problems, as well as developmental problems in both motor and language skills (Falloon et al., 1989). And all the required care will be delivered by someone who knows that it is highly probable that the child will die. Pediatric AIDS thus provides an occasion to examine the impact of a new, chronic, and fatal illness on two strands of U.S. social policy relating to children and families. First, it raises the question of how much resources the nation is willing to devote to the care of children and their caretakers. AIDS tests the nation's commitment because the resources required for each child are large, and the children to whom the resources are devoted are among those who are most likely to be otherwise disenfranchised: babies with AIDS are overwhelmingly poor and African American or Hispanic. Yet, although they are the powerless offspring of powerless parents and pediatric AIDS cases (children under 13 years of age) represent less than 2 percent of all cases of AIDS (Centers for Disease Control, 1992), these children have received a substantial share of the public funds expended in response to the epidemic. Second, pediatric AIDS permits an examination of the allocation of responsibility for children among parents, extended family, foster parents, and the state in regard to where a child will live, medical decisions, and financial costs. AIDS tests the strength of the state's traditional commitment to helping children remain with their biological parents and to affirming the authority of biological parents to control medical care decisions relating to their children (Gaylin and Macklin, 1982; for recent collections
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The Social Impact of Aids in the United States of essays on the responses to pediatric AIDS in the United States, see Schinazi and Nahmias, 1988; Seibert and Olson, 1989; and Anderson, 1990). Resources and Special Programs This section draws for illustrations on the responses to pediatric AIDS in New York City and Miami, Florida (and Dade County, of which Miami is a part), the two U.S. cities with the most cases of pediatric AIDS.2 As of December 1991, 852 cases of pediatric AIDS had been reported in New York City and 198 cases in Miami.3 For half a century, the government's principal program of support for low-income families with children has been the program of Aid to Families with Dependent Children (AFDC). AFDC provides basic income support in the form of cash payments. Since the 1960s, Medicaid has been expected to meet the basic medical needs of AFDC families. Even with the social services that regularly accompany it, however, AFDC has never been sufficient in most states to meet the minimal requirements of poor families. In 1988, for example, two-thirds of states did not provide AFDC grants equal to the state's own determination of children's minimal needs. Even in states that did meet their own standard of need, the standards and grants were often very low. In the early days of the HIV/AIDS epidemic, it became clear that the basic programs of AFDC and Medicaid would be so insufficient to meet the needs of infected parents and infants that additional governmental assistance was imperative. It was also apparent that traditional foster care programs and subsidies would be insufficient to attract foster families for HIV-infected children who could not live with their biological parents. Thus, states with growing numbers of pediatric AIDS cases began to develop new programs and, beginning in 1985, Congress began providing extra money to the states for services and foster care programs for children with AIDS.4 With that money, New York City and Miami developed or expanded programs to provide added support to biological parents who were taking care of HIV-infected children and to provide noninstitutional settings for the children who could not live with their parents. New York City Special programs and resources created to respond to children with AIDS in New York City have been varied and substantial.5 Nearly every public institution that regularly deals with families with children has developed task forces or programs for children with HIV disease. The state's Department of Health, for example, designated 10 hospitals in New York City as "AIDS centers." In those hospitals, every AIDS patient is assigned
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The Social Impact of Aids in the United States a caseworker, as case manager, who serves as the patient's advocate within the hospital and coordinates all eligible services; some workers are especially trained to work with mothers and children (AIDS Institute, 1990a). Other hospitals have created special units for HIV-infected mothers and their children. Harlem Hospital, for example, where, by early 1990, between 3 and 4 percent of all newborns had HIV antibodies, established a unit for women and children with HIV, which had a staff of 20. To serve adults and children with AIDS during periods when they are not hospitalized, New York City's Human Resources Administration formed the Division of AIDS Services in 1985. By 1990, the division had a staff of 285. In turn, the division established a demonstration project, the Family and Children's AIDS Case Management Project, to coordinate all public services for any family with children in which one or more family members has been diagnosed with AIDS. Caseworkers in this unit carry much smaller caseloads than usual—1 caseworker for every 15 families rather than 1 worker for every 30 families. Most of the families in the program are under such stress from problems other than AIDS that they need the extra help wholly apart from AIDS. Thus, AIDS, which evoked a more sympathetic response than, for example, drug addiction, has opened services that other problems alone had not. Since nearly all mothers of children with HIV antibodies served by the Division of AIDS Services are at risk of becoming disabled or dying from HIV while their children are young, caseworkers try to involve the mother's extended family, particularly grandparents or siblings of the mother, in helping while the mother is well enough to provide some care for the child and in providing care for the child when the mother is unable to continue. The New York project is particularly proud of these efforts. According to its director, in the first 3 years of operation, only four of the dozens of children the project had served had to be removed from the mother and placed in foster care with nonrelatives while the mother was still alive. For the minority of children with HIV antibodies who could not remain with their parents or other family members, agencies in New York City have mobilized to find appropriate settings for them to live. Incarnation House, for example, was created to care for children so ill that they need to live in a setting in which they can have close medical supervision, but not so ill that they need to be in a hospital all the time. For the great majority of children with HIV antibodies who could not live at home, however, the goal was to find appropriate foster families. A crisis had arisen at several New York City hospitals in 1985 when a substantial number of babies medically ready for release became long-term hospital residents because their parents were unable or unwilling to take them home. The boarder babies, believed to be HIV-infected, were initially even harder to find homes for than other children unable to live with their parents. They became the
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The Social Impact of Aids in the United States most visible manifestation of a foster care system already under severe stress due in substantial part to the growing number of parents with drug-addiction problems (Joseph, 1988). Prodded by a lawsuit, New York City made two responses to the boarder baby situation. First, in 1987 it established a federally supported Hospital Baby Project to monitor all babies held at any hospital for more than 3 days after being medically ready for release. Once alerted to the presence of such a baby in a hospital, the project investigates the reasons for the delay and initiates the process for finding another placement. By 1989, according to the administrators of the project, almost no babies testing positive for HIV were being held as boarders in the city's hospitals. Second, again supported by federal funds, the city's Human Resources Administration's Child Welfare Administration created a Pediatric AIDS Unit in 1988 to increase the number of qualified foster placements. The unit entered into contracts with 5 of the 74 private agencies through which foster children are placed in the city to create special programs for babies with HIV antibodies. By September 1990, the unit was overseeing the foster care placements of 426 children with HIV antibodies, about half of whom had been placed through the 5 specialized agencies and half through the other 69. Under the special foster care program, foster parents receive much higher payments for caring for a child with HIV antibodies than they receive for caring for a healthy child without special problems (as of November 1990 $1,281 per child per month, compared with $400 to $500 a month for most other foster children). In addition, foster parents of children with HIV antibodies receive an annual clothing allowance of about $800, a modest additional amount to pay for respite care, and free equipment, such as carriages and cribs. A foster family caring for two children with HIV antibodies would thus be given about $32,000 a year, out of which they are expected to provide for all the children's needs apart from their medical care, which is paid for through Medicaid. The largest AIDS foster care program in New York City is administered by Leake and Watts Children's Home, a private agency that began working with children with HIV antibodies in 1985 and, by 1990, had placed about 110 children into about 45 foster families.6 A high proportion of the foster parents have worked as nurse's aides or have other nursing training. The foster parents receive high payments and attentive social services. To support its foster families, the agency employs a staff of social workers and nurses who make frequent home visits and are readily available for consultation. The agency is proud of the foster parents' record of taking care of the children: no child with HIV antibodies had been removed from a foster parent because of inadequate care by the foster parent and, of the 110
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The Social Impact of Aids in the United States children with HIV antibodies placed through them since 1985, 104 were still alive in 1990. The foster care relationships established through Leake and Watts have also been remarkably enduring and stable. Despite the traditional goal of foster care as a short-term intervention while efforts are made to reunite a child with the biological parents, only 4 of the 110 children placed with them had returned to their biological families. In fact, only a small proportion of the children are visited by their mothers or other biological family members. The agency attributes the small rate of reunions and visits primarily to the family situations of the newborns who come to them: the majority enter foster care directly from the hospital shortly after birth, and virtually all test positive not only for HIV, but also for heroin or cocaine. Thus, nearly all have mothers who are both drug users and HIV-infected, and according to the agency, nearly all also have mothers who decided to leave their children at the hospital rather than take them home. Because returning children with HIV antibodies to their biological parents is not often possible (or often is not in the infants' best interest), a further goal of New York City's program has been to arrange adoptions for as many of the foster children as possible. In the fall of 1990, roughly two-thirds of the children cared for through Leake and Watts were in some stage of the adoption process, nearly all of them proposed for adoption (or already adopted) by the foster parents with whom they had been living. In New York, for hard-to-place children like children with HIV antibodies, foster parents who adopt them continue to receive all the benefits and services they received as foster parents (except for the allowance for respite care). Miami Many of the same services provided for HIV-infected children in New York City have been developed in Miami.7 Services there are provided through the state's Department of Health and Rehabilitative Services, the South Florida AIDS Network, Jackson Memorial Hospital, and private agencies. Jackson Memorial is a 1,250-bed public hospital; it provides care for more children with AIDS than any other hospital in the United States. As of the summer of 1990, it was providing inpatient and outpatient care to 198 HIV-infected children and to an additional large number of infants with HIV antibodies who were still too young to determine whether they actually carried the virus. Of the 198 children, 75 percent were living with one or both biological parents and another 14 percent were being cared for by grandparents or other family members. Like Harlem Hospital in New York City, Jackson Memorial developed teams to provide coordinated services to women and children with HIV
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The Social Impact of Aids in the United States disease. To coordinate public services for families and children outside the hospital, the hospital undertook a demonstration project, similar to New York's, that was serving 160 families as of the summer of 1990. Project caseworkers carry smaller caseloads than usual, 30 families per worker (twice as high as New York's demonstration project but still substantially lower than the usual caseload in Miami). The project has been staffed to address the highly diverse cultural mix of Miami's population. As in New York, very few of the children in the demonstration project have been removed from a caretaking parent during the parents' lifetimes. For the children who cannot remain with their biological parents, Miami has also established much the same range of foster care programs and support as New York City (Coppersmith, 1990). In Miami, nearly all children who have HIV antibodies and who require foster care are placed through a private agency, the Children's Home Society of Florida, which as of February 1991 was overseeing 36 children living in 21 foster homes; since January 1988 it had overseen the placement of 73 children.8 As in New York, the substantial majority of the children in foster care are African Americans, were born with traces of heroin or cocaine in their systems, and were the children of women who were HIV-infected and had at some point been drug users. Florida pays foster families that care for children with AIDS at an even higher rate than New York. The rate paid in the two states for an asymptomatic child is similar (about $1,300 per month), but because the Medicaid administrators in Florida have approved payments to foster parents for each day that a child is not in the hospital, foster parents caring for a child with AIDS receive a total of $2,621 per month ($31,452 annually).9 Adoption plays a much smaller role in policies for children with HIV antibodies in Florida than in New York. In Florida, the state has arranged adoption for only about 8 of the 73 children placed in foster homes through the Children's Home Society. Why so many more children have been adopted in New York is easy to explain: in New York foster parents adopting a hard-to-place child continue to receive nearly all the payments they received as foster parents; in Florida, on adoption, nearly all payments cease. Thus, in Florida, the only children in the HIV program who have been adopted have been a few of those who, on later testing, had seroconverted and were HIV negative. New York's principal goal in subsidizing adoptions has been to ensure continuity of care for hard-to-place children, but not one of the symptomatic children placed in foster care in Florida through the Children's Home Society has left the foster family even without an adoption subsidy program; thus, it is unclear whether New York's system of subsidized adoption has been needed to ensure continuity. The more significant value of New York's program, also unmeasured, may lie in helping children, through adoption, feel more a part of a family and in encouraging
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The Social Impact of Aids in the United States the foster and adoptive family to form as strong an emotional bond with the child as possible. Anomalies in the Allocation of Resources Miami and New York have developed impressive programs for responding to the needs of children with HIV infection. The projects just described are only part of the cities' extensive efforts. And yet, as ever, there are anomalies and inconsistencies in the public response. This section discusses some of the principal anomalies; although there are sometimes persuasive explanations for each of them, their cumulative effect remains troubling. As a starting point, the very scale of the public commitment to infants with HIV infection may itself seem anomalous both as an absolute commitment of resources and in relation to expenditures for adults with HIV. The costs of caring for a baby with AIDS are very high. The medical costs alone often exceed $50,000 a year for children who spend many days in the hospital (Hegarty et al., 1988). If a child is in a foster home, the foster parents will be paid between $15,000 and $30,000 per year for the child's care. Whether or not the child is in foster care, social workers and other public employees who help oversee the child's care cost an additional several thousand dollars per child each year. The public commitment is also high when measured not in dollars but in people—specialized hospital staff, foster parents, social workers who serve biological and foster parents, and specially assigned agency staff. Some indication of the scale of such programs is the size of the Sixth Annual National Pediatric AIDS Conference, a five-day conference held in Washington, D.C., in February 1991, at which more than 200 papers were presented, a large proportion of which dealt with local programs of care around the country. According to U.S. Department of Health and Human Services (1988), federal expenditures for children with AIDS in 1988 totalled $98 million, not including AFDC grants. State and local expenditures total several thousand more per child. In a nation frequently criticized for its uneven commitment to the well-being of children, and particularly to African American and Hispanic children, this expenditure of resources is substantial by any standard. The commitment of high expenditures for HIV-infected children is in part easy to explain. As to hospital costs, for example, no special congressional appropriation was needed in the late 1980s to expend tens of millions of dollars each year on HIV-infected children. When the AIDS epidemic began, the Medicaid program was already in place to provide medical care for low-income adults and children; the critical public decision to respond to the medical care of the poor had been made in the mid-1960s. And even
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The Social Impact of Aids in the United States before Medicaid, public hospitals had been assigned the responsibility of treating the sick and dying who could not afford care. More complex to explain are the new programs authorized by Congress that were specifically addressed to HIV-infected children—the programs, for example, that provided funds for the extra services in New York and Miami for HIV-positive children living with their biological parents and the funds for special foster care programs. The funds for these programs are not only substantial in themselves, but also in comparison with funds appropriated for extra services for adults with HIV. In the 1989 federal budget, for example, programs for out-of-hospital social services for children with HIV received $7.8 million; in comparison, such programs for adults received $14.7 million, even though there were over 40 adults with AIDS for every child with AIDS. In the 1990 budget, the support for such services for children nearly doubled to $15 million, but the budget for adult services increased only to $17.4 million, even though the number of pediatric cases had not increased as a proportion of all cases (Kirp, 1990). State budgets have also often been disproportional in their support of child-related HIV programs. Because of their greater dependency, children may well require more expensive social services than adults, but that is hardly the total explanation for the proportionately greater commitment of resources to children. Part of the answer is simply that programs for poor children have always garnered more money than programs for poor adults. For example, neither the AFDC program nor any other federal program provides income support to nondisabled adults without children, no matter how poor they are. In one sense, the usual justification for higher public expenditures for children than adults does not apply in the context of AIDS: the usual justification, similar to the justification for public education, is that children are the nation's future, and income support and other programs are investments in that future, a way of providing opportunity. But sadly, of course, most children with HIV have very limited futures. Thus, the better explanation for the higher expenditure for HIV-infected children is simply that as a nation, Americans are more sympathetic to their plight than to the plight of HIV-infected adults. Children with HIV may be viewed with more sympathy than adults because they are seen as morally blameless for the behavior that led to their illness. Moreover, to a degree vastly dwarfed by their number, the pediatric AIDS cases that have been brought to Congress's attention most forcefully have remained, even in 1990, the children with hemophilia or children who have received transfusions, not the children of heroin-injecting minority mothers. The major AIDS funding legislation of 1990 for both adults and children—the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act—was, for example, named for a white, middle-class child with hemophilia.
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The Social Impact of Aids in the United States Thus, during this period, the lower courts in New York began to hear cases involving the gay partners of persons who had died of AIDS. The great majority dealt with rent-stabilized apartments, not rent-controlled apartments, because vastly more units in New York City are covered by the rent stabilization program. Facing cases of a surviving gay partner in a rent-stabilized apartment, a few judges started providing relief. One court, for example, held that, so long as a state agency continued to give protection to a list of relatives such as stepchildren or fathers-in-law, the equal protection clause of the Constitution required that a long-term gay domestic partner be given the same protection (Two Associates v. Brown, 502 NYS 2d 604 (Sup. Ct. 1986)). The court reasoned that there was simply no rational basis for giving relief to a stepchild or father-in-law, who may have depended little on the deceased, while denying it to a life-long gay companion, who was much more likely to have been emotionally tied to the deceased. Some lower courts agreed, but others did not. During this same period, the only legislative proposal that would have provided succession rights to an unmarried partner came from Governor Cuomo. In January 1989 he proposed that succession rights be made available to any person (partner or otherwise) who had lived in the tenant's apartment for 5 years or more. The governor's proposal was never introduced into the legislature. By the summer of 1989, the agency's powers to issue protective regulations of any sort were still in doubt and the legislature, caught in the usual crossfire, enacted no legislation. In fact, some politicians and agency and other officials were by this time looking to the New York Court of Appeals in hopes of a resolution. The Braschi case, the case that everyone watched when it came before the Court of Appeals, arose under the rent control program, the smaller, older, and more rigorous rent regulation scheme, a program that was in disfavor with the legislature and that was slowly being phased out. Since the 1940s that program had included a specific regulation that dealt with succession. In the mid-1980s, the succession section provided that, on the death of a tenant in a rent-controlled apartment, the landlord could not dispossess "either the surviving spouse or some other member of the deceased tenant's family who had been living with the tenant" (New York City Rent and Eviction Regulations). An unresolved question the state agency and courts faced was whether a domestic partner counted as part of the tenant's "family." The agency had consistently interpreted the term to include only a list of people related by blood or marriage. The particular case that came before the Court of Appeals involved a gay man, Miguel Braschi, who had lived with his partner, the tenant, for 10 years and had cared for him through a long illness. At Braschi's request, the papers filed with the court were silent about his partner's illness, but anyone reading the record would have inferred that the partner had died of
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The Social Impact of Aids in the United States AIDS. In preparing to bring the case before the Court of Appeals, Braschi's lawyers believed that the many accounts in newspapers and on television of gay partners taking care of a partner with AIDS were likely to have made sympathetic impressions on the judges, impressions that could be helpful as the court decided how expansively to interpret the term "family." Thus, in their brief, Braschi's lawyers emphasized the close and loving relationship between the partners and the "painstaking care" that Braschi had provided during his partner's illness and hospitalizations (Braschi v. Stahl Assoc. & Co., Brief of Plaintiff-Appellant, p. 2). They urged the court to reject a narrow and technical view of family based on blood or marriage and to accept instead a functional definition more in keeping, in their view, with twentieth century living patterns. In oral argument before the court, the lawyers drew on examples from the HIV/AIDS epidemic to remind the judges of the many partners who faced eviction, and the judges in turn responded with questions that drew on the epidemic. To drive home the AIDS-related concerns in this case, a group of AIDS care providers, including organizations from several boroughs of the city, filed a brief with the court that stated that, while exact numbers were impossible to calculate, there were surely thousands of gay men with AIDS living in New York with partners much like Braschi (Braschi v. Stahl Assoc. & Co., Brief of Gay Men's Health Crisis, pp. 15-19). They also brought in materials on the growing problem of homelessness among people with AIDS. They referred the court, by name, to 16 other cases involving succession rights then pending or recently decided in the lower New York courts, all of which involved an unmarried partner, nearly all of which involved a tenant with AIDS, and some of which involved a surviving partner who was himself ill and desperate to remain in the joint apartment (pp. 23-24). The City of New York filed a similar brief emphasizing the problem of homelessness for HIV-infected people (Braschi v. Stahl Assoc. & Co. , Brief of City of New York, pp. 2-3). The record before the court also included a submission from Russell Pearce, general counsel of the city's Commission on Human Rights, who reported an increasing number of complaints of discrimination against people with AIDS—414 complaints in the first six months of 1988, nearly as many as in the entire preceding year. Pearce argued that if the court did not rule for Braschi, "thousands of people affected by AIDS who live in non-traditional family units will face eviction at a most difficult time in their lives" (Braschi v. Stahl Assoc. & Co., Affirmation of Russell Pearce). The apartment Braschi wanted to retain was owned by a real estate company. The company's lawyers, in their briefs and arguments to the court, tried to stay away from AIDS (Braschi v. Stahl Assoc. & Co., Brief of Defendant-Respondent). They mentioned the disease only once in their brief, in a footnote that seemed to try to deflect sympathy based on AIDS
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The Social Impact of Aids in the United States by pointing out that there was no evidence in the record that Braschi's partner had AIDS. They also sought to undercut sympathy for Braschi in particular by pointing out that his partner was a rich man and that, as his heir, Braschi could afford other housing at prevailing market rates. On the legal issues, they urged the court to accept a traditional definition of family, one that would be more consistent with the agency's practices and more certain of application. Unlike the opponents of the domestic partnership ordinance in San Francisco, they were not motivated in their opposition by moral concerns about family values or about homosexuality, and they did not make such appeals to the court. Nor did the Roman Catholic archdiocese or other religious groups appear before the court to make such arguments. The court, in its decision, accepted Braschi's position. Cutting through all that the legislature had been unable to resolve, the court began by observing that the term "family" in the rent control statute was neither defined elsewhere in the statute nor discussed in any legislative materials over the years. With such a vacuum, the court believed that it would be most consistent with the legislature's purpose of protecting "a narrow class of occupants other than the tenant of record" to look not to "fictitious legal distinctions or genetic history" but rather to the "reality of family life" (Braschi v. Stahl Assoc. & Co., p. 53). Accordingly, the court decided that the proper definition of family should include, among others, "two adult life-time partners whose relationship is long-term and characterized by an emotional and financial commitment and interdependence'' (Braschi , p. 54). The court prescribed a list of factors for the lower courts to consider in deciding individual cases—factors such as the longevity and exclusivity of the partners' relationship, their level of emotional and financial commitment, and the reliance the couple placed on one another for daily services. The court ended its decision by sending Braschi's case back to the trial court to permit the trial judge to determine whether Mr. Braschi met the new criteria, but in summarizing the facts alleged by Braschi, the court left little doubt about the appropriate outcome. If Braschi could prove what he had alleged—a relationship of 10 years, with the partners regarding each other as "spouses," holding themselves out as a couple to friends and relatives, and sharing finances, and with Braschi the primary heir of his partner's estate—he should be considered a member of the tenant's family and assured succession. The court never mentioned AIDS, but almost everyone with any connection to the case believed that AIDS had been on the judges' minds. By any standard the decision of the New York Court of Appeals was adventurous. As a dissenting judge pointed out, the decision seemed inconsistent with the legislature's overarching goal of phasing out the rent control program as original tenants of apartments died, inconsistent with the
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The Social Impact of Aids in the United States traditional definition of family, and inconsistent with the practice of the agency administering the rent control statute, which had always limited its interpretation of family to a small group of relations by blood or marriage. Worse yet, the dissenting judge complained, while the narrower view of family merely requires a simple determination of a blood tie or a link by marriage, the new interpretation placed an already overworked agency in the unfortunate position of having to make inquiries, on a case-by-case basis, into a number of highly personal, subjective factors, such as two persons' level of emotional commitment to each other (Braschi, pp. 55-57). The decision, when announced in July 1989, received a great deal of attention in the press. Legislators had predictably opposing reactions. Many in the Assembly praised the decision. In contrast, conservative State Senator Marchi proposed an amendment to New York's constitution that would have limited the meaning of "family" in all statutes and regulations to spouses, their children, their parents, and their in-laws. No legislation was ever seriously considered in either house. In the succeeding months, nearly all official activity shifted once again to the rules relating to rent stabilization, the larger rent regulation program, for nothing in the Braschi case, a rent control case, dealt directly with rent stabilization, and the legislature remained as paralyzed as ever in deciding between the conflicting demands of tenants and landlords. Impact of the Braschi Decision After months of delay and intense lobbying from a variety of groups, including gay rights organizations, the Division of Housing and Community Renewal in 1990 issued new regulations to cover rent-controlled and rent-stabilized apartments (Title 9, New York City Rent Regulations, Subtitle S, Subchapters A and B (1990)). Despite intense resistance from representatives of the landlords, Braschi carried the day for rent control and rent stabilization. The new regulations began with findings of fact to support the regulations. In its findings, the agency emphasized the general problems of homelessness and the HIV/AIDS epidemic, which, by the estimates on which it relied, had infected between 124,000 and 235,000 New Yorkers. Of this group, the great majority, the agency stated, were gay men or members of "low-income groups … two groups most likely to live in nontraditional households" and were thus most in peril of losing their homes. In the new rules themselves, the agency expanded its old list of people related by blood, marriage, or adoption and provided succession rights to other persons "who can prove emotional and financial commitment and interdependence" with the tenant. The regulations went somewhat further than Braschi and made clear that a sexual relationship between the parties was irrelevant; thus, a long-term resident who had a relationship with the tenant much like
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The Social Impact of Aids in the United States that of a child or a sibling would also be protected. Finally, in a provision reminiscent of San Francisco's domestic partner registration, the new regulations provided that people who wished to be in a position to claim succession rights could file with the landlord a form provided by the agency informing the landlord of the familial relationship. At the time the new rules were issued, William Rubenstein, Braschi's attorney in the Court of Appeals, exulted that they were "the most far-reaching recognition of lesbian and gay relationships ever granted by any government agency in the United States." After extended litigation, the new regulations have been upheld (Rent Stabilization Association of New York v. Higgins, 562 NYS 2d 962 (App. Div. 1990)). Braschi may have already exerted some effects in New York beyond rent regulations. Immediately after Braschi was decided, then Mayor Edward Koch announced another form of recognition of the domestic partnership relationship. By executive order, he expanded the policy on "bereavement leave" available to city employees to cover bereavement leave for a domestic partner (or a domestic partner's child or parent) in the same manner as bereavement leave for a spouse (Executive Order No. 123 (1989)). City employees who might want to take such leave under the policy were to register their partnerships with the city's Department of Personnel. The changes in bereavement policies were already being drafted in the mayor's office when Braschi was announced, but the generally positive public response to Braschi may have encouraged the mayor's office to proceed with releasing them and helped to create a positive climate at the time they were released. CONCLUSIONS Newborns and Children The most significant effect of AIDS on social policies bearing on newborns and children has been to force a response by social service systems that are already under stress to families who are similarly already under stress. The responses have often revealed basic tensions, inconsistencies, and anomalies in governmental policies that relate to children and their families. Children with HIV arrive into a world of social services and legal doctrines formed before they were born and shaped without children like them in mind, shaped by compromises among many conflicting social goals. It should thus hardly be surprising that high points and gaps appear in the public response to them: model programs, generously funded and of which cities can be proud, reach only some of the affected children, while large numbers of other children have needs that are not met at all or are met much
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The Social Impact of Aids in the United States less well. Funding for children with HIV disease is more generous in many regards than funding for adults with HIV disease, but it is uneven in ways that reflect society's ambivalence about the parents of these vulnerable children. Children with HIV disease or AIDS might be better off if most of the policies discussed in this chapter were different—if there were not wide disparities among states in support programs for families, if within states the payments to biological parents caring for a child were closer to the payments to foster parents, if all pregnant women were tested for HIV infection whether they wanted to be tested or not, if foster parents for HIV-infected children had as wide authority as biological parents to make decisions on behalf of the children in their care. Yet each of these policies is supported by deeply held beliefs about the roles of government and parents in an individualistic democracy, and thus far, the HIV/AIDS epidemic has not led to any fundamental reappraisal of those beliefs. What the long-term effect of the epidemic will be on these policies is as yet impossible to say. At this time, it seems likely that the epidemic will simply serve as another example of the durability and resilience of long-held public values in the United States regarding families and the state. Recognition of Unmarried Couple Relationships Looking back, what role did AIDS play in shaping the political and judicial struggles that led to the new, broad housing rules to protect domestic partners and other nontraditional family members in New York City and to the domestic partnership ordinance in San Francisco? That question cannot be confidently answered. It can at least be said, however, that it is highly unlikely that the state agency in New York would have acted when it did to protect such families if it had not been for the Braschi decision and for the lobbying of the agency by gay rights and AIDS groups, who were outside the usual political fights between tenant and landlord groups. The question that is harder to answer is whether Braschi itself would have been decided the way it was but for the epidemic of AIDS. The case that came before the New York Court of Appeals, the case of Miguel Braschi, not only evoked some sympathy in itself—a loving partner who had cared for his dying companion—but also surely evoked images of many other similar companions and of yet other homeless persons dying of AIDS in city shelters. In their briefs, the supporters of Braschi had certainly gone out of their way to evoke such images in the belief that they would affect the judges. More globally, in the years that immediately preceded Braschi, what AIDS had also done, as it had done in San Francisco, was to raise the political consciousness of many gay men and lesbians and lead to the creation of organizations that urged the courts and legislatures to adopt an enlarged view of families.
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The Social Impact of Aids in the United States It thus seems quite possible that AIDS contributed in New York and in San Francisco to the recognition of domestic partnerships and to the recognition of other nontraditional family relationships for which no lobbying voice exists. In both New York City and San Francisco, the recognition of domestic partnerships would have been important to gay and lesbian couples even if AIDS had never happened, but AIDS, for all its tragic effects, may have led the larger community in both cities to confront and accept, at least for certain purposes, families who had once been unseen or, if seen, rejected as different. If this has been the role of AIDS, it is in some sense an amiable paradox: a fatal disease, associated in the public mind with promiscuous sexual acts, a disease so stigmatizing that Miguel Braschi had not wished its name to be mentioned, nonetheless contributed to the recognition and acceptance of a variety of emotionally intimate and interdependent family ties that were once outside the law. NOTES 1. Illinois and Louisiana passed and later repealed statutes mandating premarital HIV antibody screening, largely because of their lack of cost effectiveness (Childress, 1991). 2. Northern New Jersey is the geographic area with the third largest number of pediatric AIDS cases; for a brief description of the response to AIDS in Newark, see Williams (1989). 3. Pediatric AIDS cases constitute about 1.7 percent of the cumulative U.S. total through December 31, 1991 (Centers for Disease Control, 1992); in December 1991, they constituted about 3.2 percent of the cumulative cases in Miami and 2.3 percent of cumulative cases in New York City. 4. For example, see the provisions for pediatric AIDS health care demonstration projects in P.L. 100-202 administered by the Office of Maternal and Child Health of the Health Resources and Services Administration. 5. The information in this section is based on the materials cited and interviews with staff members of state and city agencies and private foster care agencies. 6. The description is based on interviews with staff members of the Leake and Watts Children's Home and on Gurdin (1990). 7. The information in this section is based on the materials cited, presentations made at hearings by the panel in Miami on July 1, 1990, and interviews with the staff of Jackson Memorial Hospital and other agencies in Miami. 8. Some of the children left the program when, after initially testing positive for the HIV antibodies, they later seroreverted to HIV negative. 9. A few years ago, payments for foster parents caring for a child with AIDS were even higher. Florida's pattern of high payment rates was set at a time when Jackson Memorial had many boarder babies. Payments of even $3,000 per month per child seemed a bargain to many public officials in comparison with the even higher costs—$800 to $1,000 per day per child by some estimates—and the negative publicity they received when housing children in the hospital. 10. To protect mothers, Jackson Memorial Hospital in Miami generally will not permit a biological father to give consent to test a child in circumstances in which the hospital is not certain whether the father knows the HIV status of the mother (interview with Dr. Terry Mastrucci, October 1990).
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The Social Impact of Aids in the United States 11. Some people and groups object to state-imposed testing over a mother's objections on broader grounds. They oppose mandatory testing of any group—babies, prisoners, health care providers, air traffic controllers, etc.—on the grounds that the arguments for it are tenuous and that the risks are great that approval of it will lead to even less justified mandatory testing of other groups and, ultimately, to greater discrimination against HIV-infected people. 12. Obtaining the consent of the biological parent(s) consent also protects the state from a lawsuit by the only people likely to sue if the test is performed. 13. This section is based on interviews with proponents, opponents, and observers in both cities and on examinations of legal materials, newspaper accounts, and political campaign literature. 14. Julia Lopez, head of San Francisco's Department of Social Services, issued a memorandum stating that "passage of the domestic partners initiative would not have any effect on the eligibility for benefit programs administered by the department." The Human Rights Commission staff though Lopez might have been hasty in her conclusions. 15. Some insurance companies insist that dependents of an employee to whom they provide coverage be a person to whom the employee has some legal obligation. 16. San Francisco's health plan for its employees does not provide coverage even for spouses; rather, it allows employees to purchase coverage for their spouses (and dependent children) at group rates. The board's action in December 1990 permitted employees with domestic partners to purchase insurance for their partners at the same rates. The extra $1.1 million in costs to the county was due to the fact that the insurance companies demanded a higher premium for all dependents if domestic partners were to be covered, and the city wanted to make certain that adding domestic partners did not force employees with spouses to pay higher premiums than they already were. 17. A ballot initiative seeking to repeal San Francisco's domestic partnership ordinance failed in November 1991 (Chung, 1991). REFERENCES AIDS Institute (1990a) Intensive Case Management Services for HIV Infected Women and Children: A Report for the Committee on the Care of Women and Children with HIV Infection. New York State Department of Health, New York. AIDS Institute (1990b) Obstetrical HIV/Counseling/Testing Care Initiative: Program Status Report. New York State Department of Health, New York. Altman, D. (1983) The Homosexualization of America. Boston: Beacon. Altman, D. (1988) Legitimation through disaster: AIDS and the gay movement. In E. Fee and D.M. Fox, eds., AIDS: The Burdens of History. Berkeley, Calif.: University of California Press. Anderson, G.R., ed. (1990) Courage to Care: Responding to the Crisis of Children with AIDS. Washington, D.C.: Child Welfare League of America. Barnes, M. (1989) Toward ghastly death: the censorship of AIDS education. Columbia Law Review 89:698-724. Barnett, W. (1973) Sexual Freedom and the Constitution: An Inquiry into the Constitutionality of Repressive Sex Laws. Albuquerque, N.M.: University of New Mexico Press. Baughman, L.N., C.H. Morgan, S. Margolis, and M. Kotler (1989) Infants and Children with HIV Infection in Foster Care. Washington, D.C.: U.S. Department of Health and Human Services. Bayer, R. (1990) AIDS and the future of reproductive freedom. Milbank Quarterly 68:179-204. Bennett, R. (1976). Allocation of child medical care decision-making authority: a suggested interest analysis. Virginia Law Review 62:285-330.
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The Social Impact of Aids in the United States Stoddard, T.B. (1989) Gay marriages: make them legal. New York Times March 4:27 U.S. Department of Health and Human Services (1988) Final Report: Secretary's Work Group on Pediatric HIV Infection and Disease. Washington, D.C.: U.S. Government Printing Office. Weitzman, L. (1981) The Marriage Contract. New York: Free Press. Williams, L. (1989) Inner city under siege: fighting AIDS in Newark. (Second of a four-part series, "The Changing Face of AIDS.") New York Times 2/6/89:A-1. Working Group on HIV Testing of Pregnant Women and Newborns (1990) HIV infection, pregnant women, and newborns: a policy proposal for information and testing. Journal of the American Medical Association 264:2416-2420.
Representative terms from entire chapter: