CHAPTER 13

ISSUES IN FAMILY LAW FOR PEOPLE WITH HIV

Carolyn McAllaster, Carol Suzuki, and Jeffrey Selbin*

§13.1 Introduction

§13.2 Marriage

§13.3 Parenting and HIV

§13.4 Separation and Divorce

§13.5 Custody and Visitation

§13.6 Permanency Planning

§13.7 —Testamentary and Inter Vivos Guardianships

§13.8 —Introduction to Standby Guardianships

§13.9 —Issues in Standby Guardianship

§13.10 —Joint and Co-Guardianship

§13.11 —Powers of Attorney and Other Private Designations

§13.12 —Future Trends in Voluntary Permanency Planning

§13.13 Foster Care

§13.14 Termination of Parental Rights

§13.15—Disability Discrimination Challenges to Termination of Parental Rights

§13.16 Adoption Assistance

§13.17 —Eligibility for Federal Adoption Assistance

§13.18 —Types of Adoption Assistance

§13.19 —Interstate Compact on Adoption and Medical Assistance

§13.20—Legal Rights of Adoptive Parents Who Are Denied or Not Offered Adoption Assistance

§13.1 Introduction

In many respects, the family law needs of people with HIV are similar to those of persons not infected with the virus. We all come from families in one form or another, and most of us experience one or more of the complex challenges of partnering, parenting, and planning on a daily basis. In some instances, however—by virtue of their social, economic or health status—people with HIV have particular family law needs and challenges, and this chapter explores such issues.

The first four sections of the chapter describe HIV and family law in a chronology from marriage through divorce. The chapter opens with a discussion of HIV in the marriage context, including the short-lived efforts in some states to prevent people with HIV from marrying and the on-going attempts to provide HIV education and testing in the marriage licensing process (§13.2). HIV and parenting issues, with a focus on medical neglect and the treatment of HIV-infected children, are covered in the following section (§13.3). The next section describes HIV-related concerns in the context of divorce and separation, including HIV as “fault” for consideration in divorce and the division of marital property, and for HIV-related tort actions between spouses or partners (§13.4). Arising out of divorce or separation, child custody and visitation issues then are discussed, with particular attention to the significance of HIV in the application of differing legal standards in initial and modification determinations (§13.5).

The next seven sections of the chapter explore “permanency planning,” an evolving area of family law that is of importance to the increasing number of parents with HIV in the United States. The first section begins by describing the history of permanency planning and its significance for HIV-infected parents (§13.6). The traditional permanency planning tools for parents—including testamentary and inter vivos guardianships—are discussed in the next subsection (§13.7). The following subsection introduces standby guardianships—the single most significant permanency planning innovation for parents with HIV—and their legislative history (§13.8). The many important issues and challenges inherent in standby guardianship regimes are set forth, with particular focus on their implications for families affected by HIV (§13.9). Other major initiatives, including joint and co-guardianship in California and Connecticut, are described and contrasted with standby guardianship (§13.10), followed by a discussion of the availability of powers of attorney and other private designations as permanency planning tools for parents with HIV (§13.11). The final subsection describes future trends on the permanency planning horizon, including a brief description of the recently proposed concept of “concurrent” guardianship and the recently enacted provision for standby adoption in Illinois (§13.12).

The increasing intersection of poverty, substance abuse, and HIV means that a growing number of HIV-affected families are forced to interact with the public child welfare system. Child welfare issues—such as the termination of parental rights, adoption, foster care, and subsidized guardianships—are an ominous presences in the lives of many parents with HIV and their children.1 The next section explores issues relating to the foster care system, including kinship care, subsidized guardianships, HIV testing in dependency cases, and the foster care implications of HIV-positive members of the foster care family (§13.13). Termination of parental rights, with a discussion of the Adoption and Safe Families Act and the implications of the Americans with Disabilities Act on termination proceedings, are covered in the next sections (§§13.14–13.15). The final sections address the availability, eligibility for, and types of adoption assistance available to parents who adopt children with special needs, especially those from families affected by HIV (§§13.16–13.19). A section on the legal rights of adoptive parents who are denied or not offered adoption assistance concludes the chapter (§13.20).

It is important to note what is not included in this chapter. First, the relationship between HIV and heterosexism—though present in virtually all areas of law—poses challenges that are particularly acute in family law. The bias against gays, lesbians, bisexuals, and the transgendered in law and among lawyers and judges is magnified in the family law context, where almost any assertion of the rights of nontraditional families calls into question the definition of family itself. Though these issues are profoundly important, they are also beyond the scope of this chapter. Nevertheless, advocates must be aware of and prepared to address the discrimination facing the HIV-infected client who also may be a sexual minority.2

§13.2 Marriage

Attempts to regulate marriage in regard to HIV, either by imposing HIV testing as a prerequisite to marriage, or by forbidding marriage between persons with HIV, have been proposed in many states, but not widely adopted. Such legal measures are now viewed as futile in terms of public health policy. Illinois and Louisiana previously imposed HIV testing as part of their required premarital exam, but both those standards have been repealed.3 These statutes did not prohibit marriage for those testing positive, but did require disclosure of positive results to the other partner before marriage. As is the case with mandatory screening programs imposed on populations that are not, overall, at high risk for HIV, the Illinois program resulted in very few HIV-positive test results. Many people apparently avoided the HIV test by applying for marriage licenses in neighboring states, where HIV testing was not required.4 Missouri currently has a law that allows the department of health to mandate premarital HIV testing “if the Centers for Disease Control so indicates.”5

Several states require that applicants for marriage licenses be provided with educational information about HIV/AIDS, including information about HIV counseling and testing services.6 In some states the provision of the educational materials must be documented with the marriage license forms7 or the applicants for the marriage license must sign a form acknowledging that both have received the material.8 Michigan recently repealed its law requiring that applicants for marriage licenses receive counseling regarding the transmission and prevention of HIV infection. Effective January 1, 2001, applicants for marriage licenses in Michigan must be given educational materials by the county clerk regarding the transmission and prevention of venereal disease and describing the availability of HIV testing. The applicant must indicate the receipt of these materials on the application for the marriage license.9

Apparently only one state, Utah, passed legislation specifically barring marriage for partners who are infected with HIV.10 That statute was found to violate both the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 in a case in which the defendants, the Utah Governor and Attorney General, moved for summary judgment declaring the statute void and invalid and enjoining its further enforcement.11 The Utah statute, adopted in 1987, barred persons with HIV from marrying, but did not require testing prior to the marriage. The plaintiffs were two women, one of whom was diagnosed with AIDS in 1989, two months after she was married. If marriages were ruled invalid under the 1987 law, the plaintiffs were concerned about the loss of marital benefits, including those paid to the surviving spouse as a result of the marriage. The law also could have affected the status of adoptive children.

While not specifically referring to HIV infection, Oklahoma still has a law on the books which makes it a felony for an infected person to marry “before being discharged and pronounced cured by a physician in writing.”12 This statute would appear to violate the Americans with Disabilities Act as discrimination against persons with a disability by a public entity, under the reasoning of T.E.P. v. Leavitt.13

§13.3 Parenting and HIV14

The United States Supreme Court has made it clear that the parent-child relationship is constitutionally protected and that parents have a liberty interest in raising their children without undue interference from the state.15 The parent’s liberty interest, however, is not absolute and must be balanced against the state’s recognized power to intervene in the relationship to protect children from abuse or neglect.16 Most if not all states now have child protection statutes authorizing such intervention in cases of child neglect or abuse.17 This intervention may involve the removal of a child from the parent’s custody or other actions to ensure that the child is protected from actions or omissions, which threaten the child’s welfare.18 In cases of medical neglect, where a parent has failed to give consent for medical treatment necessary for the life or safety of a child, court action ranges from appointing a guardian with limited powers to removing the custody of a child.19 This section will focus on the issue of state intervention in the event a parent refuses to submit her HIV-infected child to recommended treatment.

Medical Neglect and Treatment of HIV-Infected Children. In the case of A.D.H. v. State Department of Human Resources,20 an Alabama trial court directed the mother to follow medical recommendations that her two and one-half year old HIV-infected child be treated with Retrovir (AZT). A medical expert testified that such treatment could slow both the replication of the virus and the development of clinical symptoms. The mother argued that treatment with AZT was not “emergency medical treatment” as defined by the Alabama statute.21

Based on the child’s treating physician’s testimony that “giving the medication would prolong life and the quality of that life,” however, the appellate court rejected the mother’s argument and affirmed the trial court’s order directing that she submit her child for treatment for HIV.22 Also crucial to the appellate court’s holding was its conclusion that the mother was “incapable of making a well-reasoned, rational decision regarding treatment that was in the best interests of her child.”23 The court emphasized that its decision did not “abrogate the authority of an informed and reasoned parent to make crucial and sometimes controversial decisions concerning medical treatment of their children.”24

The case of an informed and reasonable parent who refused to submit her HIV-infected child to recommended drug treatment presented itself in the Maine case of In re Nikolas E.25 The mother of Nikolas, who was HIV-infected herself, had already lost one child to AIDS at the age of four. When she and Nikolas were referred to a pediatric infectious disease specialist, the specialist recommended a three-drug combination therapy known as highly aggressive antiretroviral therapy (HAART). The mother did not trust the recommended therapy, based in part on “her experience with the drug therapy that accompanied the tragic and painful death of her daughter.”26

After the mother refused to permit her son to undergo the treatment, the state arranged for her to consult with the Chief of the Division of Infectious Diseases at Children’s Hospital in Boston, Dr. Kenneth McIntosh. Dr. McIntosh concurred with the first doctor’s recommendations, but could not give her definitive information about long-term side effects of the drug regimen.27 After fully discussing the risks and benefits of the recommended treatment, the mother decided to refuse it. Dr. McIntosh was of the opinion that “no child should be started on this program unless his parents are fully accepting and in support of the treatment.”28 Nonetheless, the state filed a petition for a child protection order seeking custody of Nikolas so he could be treated as recommended by the specialists.

The Maine child protection statute requires the court to decide whether the child “is in circumstances of jeopardy to his health or welfare.”29 “Jeopardy” is defined as “serious abuse or neglect, as evidenced by . . . deprivation of adequate food, clothing, shelter, supervision or care, including health care when that deprivation causes a threat of serious harm.”30 Important to the trial court’s decision to deny the state’s petition was the court’s conclusion that “the long term effects of the drug therapy were essentially unknown.”31 The court also noted that the mother’s decision was rational and reasoned and that she had an open mind about the treatment and would reconsider her decision should Nikolas’s health deteriorate significantly.

The appellate court reviewed the factual findings for clear error and found none. The court held that the evidence, including that of Dr. McIntosh, was insufficient to support a finding of “serious child abuse or neglect.”32 Even though Dr. McIntosh believed that the drug therapy would be beneficial to Nikolas, he also testified that the long-term effects of the treatment were unknown and that it is possible that children who are treated with the recommended drugs could develop a resistance to the therapy that would lessen the effectiveness of subsequent therapies.33 Finally, the court pointed out that the trial court had to weigh the interests of the state, the child, and the mother, in addition to balancing the benefits and risks of treatment versus declining treatment. The court emphasized that a decline in Nikolas’s health or a more compelling showing of the proposed treatment’s efficacy could, in the future, shift the balance in favor of treatment.

A 1999 Oregon case, which captured considerable media attention, involved an HIV-infected mother who resisted standard medical recommendations designed to prevent transmission of HIV to her infant, namely that she refrain from breast-feeding her newborn and that she give him AZT on a regular schedule for six weeks after birth.34 In 1994, the AIDS Clinical Trials Group (ACTG) 076 Protocol demonstrated that giving AZT to the HIV-infected mother during pregnancy and delivery and to the newborn for six weeks after birth dramatically reduced the risk of perinatal HIV transmission by two-thirds.35 In addition, according to prevailing medical opinion in the United States, breast-feeding by an HIV-infected mother may transmit HIV to the baby and, because safe alternatives to breast-feeding exist in this country, should be avoided.36

Four days after Felix Tyson was born, an Oregon trial court transferred his legal custody to the state and ordered that the baby be given AZT treatment for six weeks following birth. In addition, his mother was ordered not to breast-feed. The baby was left with his parents, but the court’s order was monitored by child protective service caseworkers who visited the home regularly. According to media reports, the parents are part of a so-called “Rethinking AIDS” movement.37 They do not believe that HIV causes AIDS, nor do they believe that HIV can be transmitted through breast milk. They believe further that AZT is toxic and ineffective. The court, after hearing from competing medical experts, found that the mother is HIV-positive, that the child is presently HIV-negative, and “that HIV virus can be transmitted by breast milk.”38 The court continued the previous order leaving the four-month old baby in the custody of the state and continuing the order that the mother not breast-feed her child.39 By then the baby had already been given the six-month regimen of AZT. The court’s order was necessary, according to the judge, to protect the child from the risk of the “introduction of a fatal disease,” and was required to protect the child’s best interests.40

§13.4 Separation and Divorce

When one or both partners in a relationship are infected with HIV, the stress created by the manifestations of the disease can be overwhelming. The aftermath of a positive HIV test is devastating to any relationship. For the uninfected partner, often added to that stress is the fear of infection and the suspicion of either a heterosexual or homosexual extra-marital affair or drug use. The uninfected partner may seek legal redress through fault-based claims in a divorce or property distribution action, or in a separate tort action.

Fault as a Consideration in Divorce or Property Division. Most jurisdictions allow for the dissolution of marriages without regard to the fault of the parties to the marriage.41 Many states, however, continue to recognize traditional fault-based grounds for divorce.42 The fault involved must typically be serious misconduct that contributes to or causes the break-up of the marriage,43 although there are no reported cases in which a spouse’s HIV infection was the specific basis for a finding of fault in a divorce proceeding. Many jurisdictions, however, recognize fault-based grounds for divorce in which HIV infection might be implicated. These include adultery, drug abuse, or knowingly infecting a spouse with a sexually transmitted disease.44