English, Abigail

English

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BOOK REVIEW:  HIV Orphans:  Protecting the Most Vulnerable (\u3ci\u3eA Death in the Family:  Orphans of the HIV Epidemic\u3c/i\u3e)

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Brooklyn Law ReviewVolume 60Issue 1SYMPOSIUM:Ensuring (E)qual(ity) Health Care for PoorAmericansArticle 111-1-1994BOOK REVIEW: HIV Orphans: Protecting theMost Vulnerable (A Death in the Family: Orphans ofthe HIV Epidemic)Abigail EnglishFollow this and additional works at: https://brooklynworks.brooklaw.edu/blrThis Article is brought to you for free and open access by the Law Journals at BrooklynWorks. It has been accepted for inclusion in Brooklyn LawReview by an authorized editor of BrooklynWorks.Recommended CitationAbigail English, BOOK REVIEW: HIV Orphans: Protecting the Most Vulnerable (A Death in the Family: Orphans of the HIV Epidemic),60 Brook. L. Rev. 341 (1994).Available at: https://brooklynworks.brooklaw.edu/blr/vol60/iss1/11BOOK REVIEWHIV ORPHANS: PROTECTING THE MOSTVULNERABLEAbigail English*A DEATH IN THE FAMILY: ORPHANS OF THE HIV EPIDEMIC,Carol Levine ed., New York: Bantam Books (1993). 318 pp.A Death in the Family: Orphans of the H1V Epidemic,'edited by Carol Levine, presents, in a poignant and provocativeway, the newly emerging phenomenon of children andadolescents who are left behind when their parents, usuallytheir mothers, die of HIV-related diseases or AIDS. Thisphenomenon is challenging the limits of service systemsalready severely overburdened by serious deterioration in thestatus of children. During the past decade, social, psychologicaland health problems have proliferated while the number ofchildren living in poverty has increased. The problemsconfronting parents with HIV disease, their children, and theirchildren's future caretakers raise critical legal* and policyissues-such as concerns over child custody, foster care, publicbenefits and access to health care-that extend across the linesof social service, child welfare, mental health, medical andlegal service systems. Providing both the personal and policyperspectives, Levine and her co-contributors effectively soundan alarm which we can ignore only at our peril.* Project Director, Adolescent Health Care Project, National Center for Youth,San Francisco, CA; J.D., U.C. Berkeley (Boalt Hall); A.B., Harvard University.I A DEATH IN THE FAMILY: ORPHANS Op THE HIV EPIDEMIC (Carol Levine ed.,1993) [hereinafter A DEATH IN THE FAMILY].BROOKLYN LAW REVIEWTHE SCOPE OF THE PROBLEMIn the book's most effective use of graphics, Michaels andLevine provide a diagram of an iceberg to illustrate the propor-tion of children and adolescents affected by HIV/AIDS in vari-ous categories, including: AIDS cases in children and adoles-cents, HIV-infected children, uninfected siblings of HIV-infect-ed children and adolescents, uninfected children whose parentsare alive with HIV/AIDS, and uninfected children whose par-ents have died as a result of the virus.2 According to a modelthey developed based on New York City data and applied tonational figures, Michaels and Levine estimate that by theyear 2000 more than 80,000 children and adolescents in theUnited States will be motherless as a result of the HIV epi-demic.3 The authors' estimates dramatically draw attention tothe scope of a problem that could easily go unnoticed except inthe immediate circle of those affected.The children most frequently highlighted by the media arethe pediatric AIDS cases. As of September 1993, 4 these casestotaled 4906, but represent only the tip of the iceberg inMichaels and Levine's diagram. This number remains relative-ly small in absolute terms because it does not reflect the num-ber of HIV-infected children and adolescents who have not yetbeen diagnosed with AIDS. Moreover, it does not include thesiblings of infected children and adolescents or uninfectedorphans.Not only is the problem larger in scope than often ac-knowledged by the public media, it may be of even greatermagnitude than Michaels and Levine suggest. For example,they derive their estimates based on an assumption that theannual number of AIDS deaths will level off by 1995.' Unfor-tunately, this is unlikely because the HIV epidemic is spread-ing so rapidly among women and girls, particularly those whoare poor or members of racial and ethnic minority groups or2 David Michaels & Carol Levine, The Youngest Survivors: Estimates of theNumber of Motherless Youth Orphaned By AIDS in New York City, in A DEATH INTHE FAMILY, supra note 1, at 5.3 A DEATH IN THE FAIflLY, supra note 1, at 9." Centers for Disease Control & Prevention, HI/AIDS SURVEILIANCE REP.,Oct. 1993, at 5 (table 2).5 A DEATH IN THE FAmiLY, supra note 1, at 9.[Vol. 60: 341BOOK REVIEWboth.6 Thus, the Michaels and Levine projections may well beon the conservative side. If so, the individual children, adoles-cents, parents and other caretakers affected by the growing"orphan" phenomenon could number in the hundreds of thou-sands in the very near future.THE INDIVIDUAL VOICESOne of the most powerful aspects of A Death in the Familyis the inclusion of personal stories told in the individual's ownwords. These individuals include the mother of a two-and-one-half-year old whose father died of AIDS, a 14-year-old NewYork City student whose father died of AIDS, a 16-year-old inthe Midwest with an HIV-infected sibling, the grandmother ofthree HIV-infected children whose mother was also infected,the HIV-infected father of two adopted children, and an HIV-infected mother in the Bronx.' The intimacy of these stories ismore compelling than any statistics could be in evoking anempathetic understanding of the joy, sorrow, passion and painin the lives of people, particularly the children and adolescents,affected by HIV/AIDS. As the 14-year-old daughter whosefather died of AIDS said: "There are no words to describe howa person lives with a person who has AIDS."' And yet thesesix individual stories successfully put into words the dailyexperiences which lay the foundation for the legal and policyissues that must be addressed to meet the urgent needs 6fthese individuals and thousands of others like them.THE LEGAL AND POLICY ISSUESBoth the statistical model and the individual stories pre-sented in A Death in the Family raise critical legal and policyissues. These include issues in at least three major categories:child custody, guardianship and foster care; availability ofpublic benefits and social services; and access to health care,6 Catherine Teare & Abigail English, Women, Girls, and the HIV" Epidemic, inLOOKING FORWARD: A WOMEN'S HEALTH AGENDA FOR THE 21ST CENTuRY (KaryMoss ed., forthcoming 1994).A DEATH IN THE FAMILY, supra note 1, at 36-52.8 Michele S. Ramos, The Two Worst Days, in A DEATH IN THE FAMILY, supranote 1, at 37.1994]BROOKLYN LAW REVIEWincluding implications for health care reform. The authorsexplicitly address questions in the first two categories-such aswho will care for the orphans and what support is available forthem-and implicitly raise questions about how we can ensurethat they will receive essential health care. The task of ad-dressing these difficult legal and policy issues is not an easyone. As Michaels and Levine acknowledge:Those who develop, interpret, and implement guidelines and pro-grams of custody decisions, foster care, adoption, education, juvenilejustice, health care, and institutionalization face a daunting chal-lenge. They must find strength, flexibility, and creativity to addressthese urgent needs.9They will only succeed in doing so if a legal framework existswhich can be adapted to meet the needs of this population ofchildren, adolescents, parents, family members and other care-takers.CHILD CUSTODY, GUARDIANSHIP AND FOSTER CAREThe emotional and psychological issues associated withcustody planning for children and adolescents who are likely tobecome AIDS orphans are numerous and weighty for bothparents and children. These emotional and psychological con-cerns can only be dealt with effectively, however, if appropriatelegal mechanisms are available to enable parents withHIV/AIDS to make decisions at a time and in a manner that iscomfortable for them and that takes into account the specificcharacteristics of HIV/AIDS. For example, HIV-related diseas-es are sometimes manifested in episodic periods of acute ill-ness, yet interspersed with much longer periods of relativelystable health during which a parent could reasonably expect tocare for his or her children. However, current custody andcaretaking arrangements for children-such as legal orders forcustody, guardianship or adoption, as well as state-supervisedfoster care placements-generally are premised on the assump-tion that parents either are able to care for their children orare not. ° Moreover, the stigma associated with the disease dis-Michaels & Levine, supra note 2, at 11.10 Catherine Teare, HIVIAIDS Orphans, 15 YOUTH L. NEWS (forthcoming1994).[Vol. 60: 341BOOK REVIEWcourages both parents and children from addressing issuessuch as future planning in a forthright manner." Legalprotections of confidentiality often do not provide adequateprotection either against disclosure itself'2 or against the mul-titude of other difficulties associated with disclosure, such asdiscrimination in access to health care and other services thatHIV infected and affected individuals and families may en-counter. 3A Death in the Family contains descriptions of some of theinnovative approaches which have been implemented in NewYork to facilitate appropriate custody planning for HIV or-phans. One option is a standby guardianship. This approachenables parents to select a guardian who can be appointedprior to the parent's death or incapacity without the parenthaving to relinquish control of the child before her health re-quires her to do so." An early permanency planning projectallows parents who are expected to die within six months to beinvolved with the child welfare agency in selecting a fosterparent for their children. 5 In addition, a special project of theNew York Legal Aid Society, based at Montefiore MedicalCenter in the Bronx provides legal services to people infectedwith HIV and has assisted HIV-infected parents in planningfor their children's future by using wills, custody and guardian-ship proceedings, and standby guardianships. 6 The availabili-ty of attorneys and advocates sensitive to the special needs offamilies affected by HIV can make a critical difference in suc-cessfully adapting a largely alien legal system to thesefamilies' needs. Levine and her co-contributors provide a valu-able service by making the options described in the book" Id. A Death in the Family also contains extremely poignant descriptions ofthe lengths to which both parents and children go to keep their HIV infection asecret and the pain and loneliness they experience in doing so. A DEATH IN THEFAMILY, supra note 1, at 16-19, 69-74.12 See, e.g., Abigail English, The H1V-AIDS Epidemic and the Child WelfareSystem: Protecting the Rights of Infants, Young Children and Adolescents, 77 IOWAL. REV. 1509, 1537-38 (1992).13 A DEATH IN THE FAMILY, supra note 1, at 73.14 Alice Herb, The New York State Standby Guardianship Law: A New Optionfor Terminally Ill Parents, in A DEATH IN THE FAMILY, supra note 1, at 87-93." Regina J. Prince, The Child Welfare Administration's Early Permanency Plan-ning Project, in A DEATH IN THE FAMILY, supra note 1, at 110-17.1 Mildred Pinott, Custody and Placement: The Legal Issues, in A DEATH INTHE FAMILY, supra note 1, at 75-84.19941BROOKLYN LAW REVIEWknown to a wider audience-including HIV-affected familiesand their advocates outside New York.BENEFITSHIV orphans and families affected by HIV need a multi-tude of services which extend across the boundaries of numer-ous systems-child welfare, health care, mental health, juve-nile justice, education, public welfare and others. The availabil-ity of services and financial benefits through these systemsdepends upon a complex set of overlapping, interrelated, andsometimes conflicting statutory and regulatory requirementswhich govern eligibility, scope of benefits and due process pro-cedures. Often these requirements do not facilitate--or actuallyimpede-the delivery of appropriate services or the provision ofessential financial support to HIV orphans and their families.The way in which eligibility requirements and benefitrules can limit access to essential support is illustrated by thestatutory and regulatory scheme establishing the frameworkfor foster care benefits. 7 Children who meet eligibility criteriafor federal foster care maintenance payments available underTitle IV-E of the Social Security Act may receive those pay-ments even if they are placed with foster parents who arerelated to them. 8 Children who do not meet the federal crite-ria may be eligible for foster care payments under state-fundedprograms. However, many states have chosen not to providefoster care payments under their state-funded programs forchildren living with relatives. 9 For many HIV orphans, place-ment with a relative would be the most appropriate care ar-rangement, but some of these children would not meet all ofthe federal IV-E eligibility requirements. These families are ei-ther forced to choose between providing a home for the chil-dren while receiving a lower level of financial support (whichmight be available under the regular AFDC program)" or17 See Teare, supra note 10.'8 See Miller v. Youakim, 440 U.S. 125, 145 (1979); see also English, supranote 12, at 1549-50, 1549 n.212." English, supra note 12, at 1549-50, 1550 nn.213-15.o See King v. McMahon, 230 Cal. Rptr. 911, 913-14, 913 n.7 (Ct. App. 1986)(explaining that foster children living with related foster parents can receive bene-fits under the regular AFDC program).[Vol. 60: 341BOOK REVIEWsending the children to live with strangers in whose home theymight qualify for higher financial benefits. Such choices arethe direct result of anomalies in existing law and add complex-ity to the already difficult decisions HIV-infected parents face.Moreover, they deprive those children of either the financial orfamilial support they need.IMPLICATIONS FOR HEALTH CARE REFORMA Death in the Family is liberally seeded with recommen-dations of services that HIV orphans, their parents, other fami-ly members and caretakers need. Many of these services aremedical or health-related since all of the parents are HIV-in-fected themselves, and many of the children and adolescentsare either already infected with the virus or at serious risk forinfection.21 These parents and children alike need access bothto primary health care services and to more specialized HIVcare." In addition, the high rates of depression and other men-tal health problems identified in adolescents living in familieswith AIDS suggest that access to a broad range of mentalhealth services is essential for those adolescents,23 as well asother family members.Although not discussed in the book, implementation of therecommendations for expanded availability of medical care andhealth-related services will depend largely on the outcome ofthe current health care reform debate both at the state andfederal levels. In order for any health care reform proposal tomeet the needs of children and adolescents generally a numberof goals must be achieved.24 Moreover, the needs of HIV or-21 An anonymous survey of well adolescents in families with AIDS revealedthat while many of the adolescents understood the dangers of drugs and AIDS,few had "heeded the message" about unprotected sex. Barbara Draimin, Adoles-cents in Families with AIDS: Growing Up with Loss, in A DEATH IN THE FAMILY,supra note 1, at 15.Teare & English, supra note 6.A DEATH IN THE FAMILY, supra note 1, at 14.24 Jane Perkins & Abigail English, Evaluating Health Reform Proposals in theInterest of Children and Adolescents, 27 CLEARINGHOUSE REV. 428 (1993) (propos-ing ten benchmarks: universal coverage; simplicity of enrollment; portability; ef-fective coverage for children living apart from their families; comprehensive bene-fits; affordable cost sharing; protections against discrimination; service to medicallyunderserved areas and populations; protections in managed care; and due process).1994]BROOKLYN LAW REVIEWphans, whether HIV-infected or not, are likely to be even moredemanding than those of other children and adolescents. Pro-viding essential health care services to these special popula-tions is an especially great challenge25 and one which any newhealth care reform legislation will meet only through the dedi-cated efforts of advocates such as Levine and her co-contribu-tors.CONCLUSIONThe system (or non-system) of services which should meetthe needs of HIV-affected families is characterized by a broadrange of legal requirements which frequently impede appropri-ate delivery of services. As Levine recognizes, the inadequaciesof the services, and of the statutory and regulatory provisionswhich control them, extend beyond the unmet needs of HIV-affected families to all other families whose problems are asso-ciated with poverty, child abuse, urban decay and other soci-etal crises.26 A successful attempt to meet the needs of HIV-affected families, including HIV orphans, will ultimately re-quire a broader effort to address the problems of vulnerablechildren and families generally. As Levine suggests, perhapsthe plight of HIV orphans, with their extraordinary vulnerabil-ity, will serve as a catalyst for society to undertake taskswhich would be essential even absent the HIV epidemic."' E.g., Abigail English, Adolescents and Health Care Reform: Protecting SpecialPopulations, 15 YOUTH L. NEWS 14 (1994); Abigail English & Jane Perkins, HealthCare Reform: Protecting Vulnerable Children (Apr. 22, 1994) (paper presented atthe ABA Conference on Children and the Law, Washington, D.C.) (on file with theBrooklyn Law Review)." A DEATH IN THE FAMILY, supra note 1, at xiii; see also English, supra note12, at 1517 (suggesting that to the extent that child welfare agencies focus specialattention on children with HIV infection, they should do so in a manner designedto improve delivery of services to other children with special medical needs and toall children).[Vol. 60: 341

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BOOK REVIEW: HIV Orphans: Protecting the Most Vulnerable (\u3ci\u3eA Death in the Family: Orphans of the HIV Epidemic\u3c/i\u3e)

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