The Social Impact of AIDS in the United States (1993) / Chapter Skim
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8 Public Policies on Children and Families
8 Public Policies on Children and Families
Pages 201-242
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From page 201... ...
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.
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From page 202... ...
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.
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From page 203... ...
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.
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From page 204... ...
, 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.
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From page 205... ...
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.
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From page 206... ...
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.
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From page 207... ...
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.
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From page 208... ...
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)
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From page 209... ...
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)
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From page 210... ...
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.
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From page 211... ...
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.
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From page 212... ...
Florida ranks 48th among the states in expenditures per capita for health and social services, and it ranks 47th in Medicaid expenditures per capita for eligible poor people (Preston, Andrews, and Howell, 1989~. In this light, Florida's unusually high payments to foster parents caring for HIVsymptomatic children is particularly anomalous.
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From page 213... ...
In New York, for example, a caseworker with Leake and Watts Children's Home will carry a caseload of only 9 to 12 HIV-infected foster children, even though the children are living with well-trained foster parents, while a caseworker for an HIV-infected child living with his or her mother will have a caseload of 15 to 30 children. The gap in expenditures on HIV-infected children living with and livng apart from their biological parents is, from one perspective, easy to explain, but it rests on assumptions about family responsibilities and the responsibilities of others that are rarely examined.
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From page 214... ...
The disparity between payments for foster parents unrelated to a child and AFDC payments for biological parents provides the foundation for another nagging and more mundane problem of resource allocation that is also particularly visible in the context of AIDS. New York has repeatedly struggled with the appropriate foster payment scheme for children, with and without HIV disease, who are placed with a relative who has no legal obligation to care for the child but who nonetheless takes the child in.
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From page 215... ...
The anomalies are particularly apparent in policies regarding testing children for HIV antibodies and the participation of HIV-infected children in clinical trials. For testing, most clinicians now believe that it is important to identify in infancy children who may be infected in order to begin prophylactic treatment and to monitor them for signs of treatable infections (Cabal, 1990; Oleske, 19904.
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From page 216... ...
at Johns Hopkins University. The reluctance to impose universal testing on pregnant women is generally justified by concern for the dignity and autonomy of women.
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From page 217... ...
Yet empowering parents to refuse HIV testing for their newborn appears to pit the interests of parents against the interests of children since a child cannot be treated if her or his illness is not known. If early prophylaxis becomes increasingly effective for children, the tension between children's and parents' interests will become increasingly acute.
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From page 218... ...
All research on children poses difficult ethical issues (Gray, 1989) , and this section considers those issues in the context of a final anomaly: Why is it that foster parents for HIV-infected children (who are usually well trained and under less stress than the biological parents of the children)
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From page 219... ...
Biological parents are not subject to such limits. For example, they might agree to a child's participation in an FDAapproved experimental protocol motivated not solely by concern for their child but also by altruistic concerns for other children, present and future, who might benefit from the treatment.
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From page 220... ...
Efforts to gain more formal recognition of ongoing gay and lesbian relationships were more halting. The critical difference between the position of gay and lesbian couples and the position of heterosexual unmarried couples is that heterosexual couples, except in unusual circumstances, are free to marry if they choose but homosexual couples are not.
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From page 221... ...
The Early Years The first effort in San Francisco for a domestic partnership ordinance occurred in 1982, after some cases of AIDS had been reported, but before AIDS had deeply imprinted itself on the minds of most San Franciscans. On that occasion, Harry Britt, at that time the only gay member of the city's Board of Supervisors, proposed legislation to permit unmarried couples to register with the city if they affirmed that they shared "the common necessaries of life" and that they were each other's "principal domestic partner." The bill prohibited the city from treating domestic partners and married persons differently.
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From page 222... ...
A few smaller cities in California, including Berkeley, Santa Cruz, and West Hollywood, had by then adopted ordinances to provide health insurance coverage for domestic partners of city employees. Harry Britt was now president of the Board of Supervisors, and the city's new mayor, Art Agnos, had run on a platform supporting domestic partnership legislation.
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From page 223... ...
Congress to provide more funds for AIDS research and treatment programs and efforts to head off legislation that would have led to mandatory testing of people believed to be at high risk for infection. What was distinctive about Supervisor Britt's domestic partnership legislation was that it was an old issue infused with new content because of AIDS, in much the same way that efforts to provide legal protections for handicapped people have been enlarged by the inclusion of people with AIDS among those believed to deserve protection against discrimination.
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From page 224... ...
Thus, even though the new bill prohibited discrimination on the basis of marital status, it would not, if passed, have imposed new health insurance costs on the city. By a separate action, the mayor, at the Board of Supervisors' direction, established a Task Force on Family Policy to study, among many issues, the feasibility of making insurance benefits available to domestic partners and other extended family members living with an employee and to make recommendations to the Health Services Systems Board, the agency with the authority over insurance benefits for city employees.
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From page 225... ...
The proponents placed images from the epidemic at the center of their campaign. The principal flyer distributed by the Domestic Partnership Campaign Committee began as follows: Imagine having spent a lifetime with a partner, sharing a home, sharing responsibilities.
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From page 226... ...
They believed that the traditional American family and traditional Christian values were under siege, and they viewed the legislation as encouraging their further disintegration. For them, calling a relationship a "domestic partnership" did not change the issue into an innocuous secular matter of shared finances.
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From page 227... ...
The 1990 Election Harry Britt would not give up. In the summer of 1990, he and three other members of the Board of Supervisors voted to again place the domestic partnership ordinance on the ballot in the November election.
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From page 228... ...
Two weeks before the election, the city's Human Rights Commission, an agency responsible for protecting gay persons against discrimination, issued a staff memorandum entitled "Domestic Partnerships: Obligations without Benefits? Recognition without Equality?
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From page 229... ...
Another was more subtle but no less important. Although the bill did not in itself provide any financial benefits for domestic partners, the proponents believed that passage of the bill would goad San Francisco's Health Services Systems Board into arranging with insurance companies to permit city employees to obtain health insurance benefits for their partners.
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From page 230... ...
17 New York City The issue of domestic partnerships arose in New York in a quite different context, a context in which it was the judiciary, not the legislative or executive branches or the voters, that took the dominant role. In 1989, in the case of Braschi v.
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From page 231... ...
In general, landlords detested rent control and rent stabilization and found a sympathetic ear in the state senate, which was controlled by Republicans and which typically supported landlords' positions. Landlords had no particular moral view to purvey about whether stepparents or siblings or even gay or lesbian partners deserved protection.
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From page 232... ...
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.
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From page 233... ...
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.
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From page 234... ...
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.
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From page 235... ...
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 rentstabilized apartments (Title 9, New York City Rent Regulations, Subtitle S
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From page 236... ...
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)
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From page 237... ...
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 lIIVinfected 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.
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From page 238... ...
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.
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From page 239... ...
17. A ballot initiative seeking to repeal San Francisco's domestic partnership ordinance failed in November 1991 (Chung, 1991)
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From page 240... ...
(1989) Pediatric AIDS research: legal, ethical, and policy influences.
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From page 241... ...
(1989) Ethical issues in caring for pregnant women and newborns at risk for human immunodeficiency virus infection.
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From page 242... ...
Working Group on HIV Testing of Pregnant Women and Newborns (1990) HIV infection, pregnant women, and newborns: a policy proposal for information and testing.
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