Definition of Standby Guardianship

The purpose of standby guardianship is to allow parents to make care and custody plans for their children now that will become effective at some future date (Simms, 1996).

A standby guardian is chosen by a parent to become the legal guardian of the parent's minor children, in the event the parent becomes unable to care for the children. In general, the standby guardian becomes the active caretaker of the children after either:

1. the death of the parent;
2. the parent becomes mentally or physically incapacitated; or
3. upon the request of the parent (Pinott, 1994).

Without standby guardianship, the range of legal options available to parents to plan for the future care and custody of their children is inadequate (Waysdorf, 1994; Levine, 1995; Mellins, 1996). These options include informal arrangements, a will, power of attorney, transfer of guardianship, foster care, and adoption (HIV Law Project, 1994). Informal arrangements, though common, provide the new caregiver with "no legal relationship to the child and no legal authority to make decisions on the child's behalf" (Child Welfare League of America, 1997, p.1). A signed will or power of attorney designates a guardian to take care and custody of the children only after the death of the parent. Transfer of guardianship, foster care, and adoption require a parent to relinquish care of the children immediately (FCAN, 1995; Building Bridges, 1996).

Standby guardianship provides a middle ground. Waysdorf (1994) explains: "standby guardianship allows for the immediate transfer of custody upon the parent's incapacity, permits retention or sharing of parental rights, and then establishes permanent guardianship after the parent's death" (p. 206). Standby guardianship also helps to protect the psychological and emotional health of the family. Standby guardianship can "reduce stress for both the parents and the children, provide some semblance of family stability, and provide a way to support the child during the family transition" (Mellins, 1996, p. 143).

History and Background

Much of the recent discussion about the emotional, social, and legal issues involved in future care and custody planning relates to the HIV epidemic (Willis, Peck, Sells, & Rodabaugh, 2001). This connection developed out of a concern for the growing number of parents infected with HIV and the number of children orphaned by the epidemic. In September 1992, researchers from the Centers for Disease Control noted the increasing numbers of women infected with HIV and estimated that, as of December 1991, 19,300 children had been orphaned due to acquired immunodeficiency syndrome (AIDS) (Caldwell, Fleming, & Oxtoby, 1992). They predicted that by the year 2000 between 125,000 - 150,000 children in the United States would be orphaned because of AIDS and stated, "...caring for these AIDS orphans will require substantial economic and social resources in the coming decade." In December 1992, using a different mathematical formula, Michaels and Levine estimated that at least 80,000 youth would be orphaned due to AIDS by the year 2000. Michaels and Levine issued a call to policymakers to address the needs of these orphans, and suggested, "Unless increased attention and resources are devoted to this vulnerable population, a social catastrophe is unavoidable."

To address these gaps, advocates began working to pass standby guardianship legislation to meet the needs of families affected by HIV better. In addition, programs were developed, with the assistance of federal and state funding, to help these families address the social, emotional, and legal issues involved in making a future care and custody plan. The U.S. Department of Health and Human Services (DHHS) provides funding for voluntary permanency planning projects for families affected by HIV through both the Abandoned Infants Assistance Act and Title IV of the Ryan White CARE Act.

The Need for Standby Guardianship

Despite the association of standby guardianship with HIV, there is little reason to limit the discussion solely to this disease. Many situations prevent parents from caring for their children. For example, thousands of children are orphaned every year due to the death of a parent from an illness or another medical condition (Levine, 1994). The Centers for Disease Control's National Center for Injury Prevention and Control (CDC, 2002a) reported that in 1999, the last year for which statistics are available, over 140,000 people between the ages of 18 and 45 died from an illness or other medical condition, an accident, or intentional injury in the United States.

20 leading causes of death, U.S., 1999, all races, both sexes, 18-45. (CDC, 2002a)

Unintentional Injury 38982
Malignant Neoplasms 25062
Heart Disease 19802
Suicide 15347
Homicide 11792
HIV 9728
Liver Disease 4323
Cerebro-vascular 3739
Diabetes 2993
Pneumonia/Influenza 1669
Chronic Low Respiratory Disease 1532
Congenital Abnormalities 1375
Viral Hepatitis 972
Benign Neoplasms 627
Aortic Aneurysm 508
Anemias 484
Hypertension 468
Complicated Pregnancy 391
Total 142,232

Given the large number of potential orphans, expansion of the discussion about voluntary permanency planning beyond the HIV service community is clearly warranted. For example, the incidence of cancer is on the rise, and is already the second most common cause of death for people of child bearing/rearing age (Willis, Peck, Sells, & Rodabaugh, 2001; CDC, 2002a). However, compared to families affected by HIV, there has been considerably less attention paid to this issue for families affected by cancer or other medical conditions, and there are few programs designed to help them cope with the emotional, social, and legal issues involved in future care and custody planning (Willis, Peck, Sells, & Rodabaugh, 2001).

The increase in single parenthood over the past three decades suggests another reason for the expansion of voluntary permanency planning. Since 1970, the percentage of children living with one parent has doubled, reaching a peak at 28% in 1996. As of the year 2000, twenty-six percent of children in the United States, or approximately 18,700,000 children, lived in single parent homes (DHHS, 2001). In particular, the conjunction of single parenthood and medical conditions like HIV and cancer has led to increasing numbers of children orphaned due to illness (Willis, Peck, Sells, & Rodabaugh, 2001; McConnell, 1998).

Children living with grandparents also provide a good example of the need for access to future care and custody planning, as approximately 1,400,000 children reside in the primary care of their grandparents (DHHS, 2001). Particularly, older grandparents caring for young grandchildren may need to appoint a future caregiver, with the understanding that advancing age and/or poor health may prevent the grandparents from continuing to provide care to the children (Coon, 2000).

Nonetheless, HIV infection continues to provide a good case study for the need for voluntary permanency planning. In a recent reassessment of her 1992 estimates, Levine found that, "consistent with earlier projections, the new data finds that since 1981, roughly 82,000 children lost their mothers to AIDS..." (The Family Center, 2001). In addition, there are currently an estimated 76,696 women living with AIDS and an estimated 250,000 women living with HIV in the United States: most of these women are also mothers (CDC, 2002c; CDC, 2001, Selbin & Del Monte, 1998).

Protecting the Welfare of Orphans

In planning for these orphans, finding new, safe, and permanent homes is a priority (Levine 1994). Permanence for children is the central component of child welfare legislation. As explained in Adoption 2002: The President's Initiative on Adoption and Foster Care Guidelines for Public Policy and State Legislation Governing Permanence for Children (Duquette, 1999):
The concept of permanency has assumed a central place in American child welfare law and policy because permanency establishes the foundation for a child's healthy development. The basic needs of children include safety and protection; a sense of identity; validation of themselves as important and valued persons; stability and continuity of caregivers; an opportunity to learn and grow cognitively, physically, and emotionally; and a protected custodial environment that is legally secure. Permanency, as epitomized by a safe, stable relationship with a nurturing caregiver, allows these basic needs to be met. (p.3)

Adoption 2002 (Duquette, 1999) also describes the hierarchy of permanence. For children who cannot remain with their natural parents, adoption and legal guardianship provide the most assurance of safety and permanence. In addition, priority should be given to assisting the children to remain within the family's kinship network. Informal arrangements are not preferred, as the caregivers do not have legal standing. These arrangements may create difficulties for the caregiver and children in obtaining public benefits, and in interacting with schools and medical facilities. Foster care is temporary and should be used only if no permanent option is available.

In this context, standby guardianship provides a method for establishing permanence. Parents can make a specific plan for the future care and custody of their children. Through standby guardianship, parents "have continued custody and control of their children for as long as their health permits, while facilitating transition to guardianship after they die" (Levine, 1995, p. S60).

National Support for Standby Guardianship

As a method of providing permanence for children and assisting families affected by terminal illnesses, standby guardianship has garnered wide support. The federal government adopted a strong position in favor of all U.S. states enacting standby guardianship legislation. The Adoption and Safe Families Act (1997) reads:
It is the sense of Congress that the States should have in effect laws and procedures that permit any parent who is chronically ill or near death, without surrendering parental rights, to designate a standby guardian for the parent's minor children, whose authority would take effect upon: 1) the death of the parent; 2) the mental incapacity of the parent; or 3) the physical debilitation and the consent of the parent. (Sec.403)

This position was reiterated in Adoption 2002 (Duquette, 1999): "We recommend that State statutes provide for the legal option of Standby Guardianship, which allows a chronically or terminally ill parent to authorize another adult person to serve as guardian of a child when the parent dies or becomes temporarily or permanently incapacitated" (p.6).

In addition to the federal government, the child welfare, legal and medical communities have all stated their support for standby guardianship legislation. Beatty and Hershfield of the Child Welfare League of America (1995) stated, "As the HIV epidemic threatens to leave a growing number of children parentless, it is more important than ever for child advocates to advance standby guardianship as a planning option for families in all states" (p. 9).

In August 1995, the American Bar Association stated its support for:
...action by federal, state, territorial and local governments to create legal mechanisms that allow people with HIV, AIDS or other debilitating, chronic, fatal illnesses to better plan for long-term care for themselves and their families, including standby guardianships, advance medical directives, and viatical statements. (Samerson, p. 28)

The American Academy of Pediatrics also supports the development of standby guardianship laws. In February of 1999, they stated their position:
Pediatricians should advocate for state laws that include provisions to authorize flexible and standby guardianship and that provide specific funding to facilitate planning for children with parents with HIV/AIDS who will become ill and have a limited life expectancy. (p. 510)

Overview of Current Legislation

As of July 2003, standby guardianship legislation has been enacted in only 17 states and the District of Columbia: Arkansas, Colorado, Connecticut, Florida, Georgia, Illinois, Maryland, Massachusetts, Minnesota, Nebraska, New Jersey, New York, North Carolina, Pennsylvania, Virginia, West Virginia, and Wisconsin. Although they do not have specific standby guardianship laws, a few other states (Iowa, Ohio, Texas, and Wyoming) have legislation that incorporates important elements of this tool. (State Codes).

Although there are differences between the states, most of the standby guardianship laws have several components in common:
1. The statutes allow a parent or a legal guardian to appoint a standby guardian for the minor children. Some states require that the parent be at risk of death or incapacity due to an illness or a medical condition; others, such as Illinois, do not.
2. The events that trigger the activation of the standby guardian include the death, the mental incapacity, or physical debilitation of the parent or legal guardian. Some states (e.g., Maryland and Massachusetts) also allow the parent to consent to a transfer of guardianship at any time the parent feels is appropriate.
3. The states set forth the procedure for a parent or legal guardian to petition the court for judicial appointment of a standby guardian. A court hearing is then held regarding the petition. Most of the states also allow a parent or legal guardian to designate a standby guardian in writing. After the death or incapacity of the parent or legal guardian, the designated standby guardian must notify the court of the triggering event, file a petition for guardianship, and participate in a court hearing to be appointed legal guardian.
4. The states require that the court be notified about a triggering event within set time limits. If a judge has appointed the standby guardian, few states require an additional court hearing.
5. If a standby guardian becomes active due to parental incapacity, the laws allow for the restoration of parental authority upon the improved health of the parent. The guardian resumes standby status.
6. The statutes allow the parent to revoke the standby guardian agreement at any time.
7. Unless a non-custodial parent's rights have been terminated, all of the statutes require that the non-custodial parent be notified of the standby guardian proceedings; either at the initial court approval or when the standby guardian provides proof of a triggering event and requests legal guardianship (Larsen, 2000; ABA, 1999; State Codes).

Although similar in intent to the other states, future care and custody legislation in California and Connecticut is different.

California allows the appointment of a co-guardian, rather than a standby guardian. This law allows a:
Parent with a terminal condition to be able to make arrangements for the joint care, custody, and control of his or her minor children so as to minimize the emotional stress of, and disruption for, the minor children whenever the parent is incapacitated or upon the parent's death, and to avoid the need to provide a temporary guardian or place the minor children in foster care, pending appointment of a guardian, as might otherwise be required (State Codes).

Connecticut allows for both standby guardianship and co-guardianship (State Codes).

Standby Guardianship in Practice

There has been little research on the utilization and efficacy of standby guardianship. The small amount of research that is available suggests that standby guardianship is underutilized. For example, a small study of oncology patients who were single parents found that 50% died without a custody plan for their children (Willis, Peck, Sells, & Rodabaugh, 2001).

Studies have also found that parents infected with HIV often do not complete formal future care and custody plans for their children. In 1995, Draimin reviewed four studies and found that most, if not all, parents with HIV are concerned about the future care and custody of their children. However, most parents appear to rely on informal arrangements with family members, and few parents follow through on making a formal, legal care and custody plan for their children. For example, a study by the Division of AIDS Services and the Orphan Project in New York City found that only 24 of 43 families had any kind of documented future care and custody plan. Of these 24 families, "only 8 had utilized the assistance of legal services in drawing up documents formally naming the selected person as the new guardian, and none had gone to family court..." (p.128).
In a study of 151 parents with HIV, Rotheram-Borus (1997) found that 81% of mothers and 75% of fathers reported initiating future custody discussions with family and friends almost immediately after being diagnosed with HIV. For a majority of children (75.9%) in the study, parents had spoken to a potential future caregiver, and 99% agreed to care for the children. In contrast, only 24% of parents had discussed this same issue with social service staff, and only 30% had initiated legal planning.

Forehand et al. (1998) found that of 25 HIV positive mothers, only 35% made any legal plans for their children before the mothers died. Forehand et al. (1998) also reports on a similar 1998 study by Boxer et al. that "found that in only 25% of the cases were legal custody arrangements established prior to the mother's death" (p.716).

Obstacles to the Utilization of Standby Guardianship

Since most states do not have standby guardianship legislation, many parents do not have the option to appoint a standby guardian for their children. In the states with standby guardianship, several obstacles contribute to underutilization. These obstacles can largely be grouped into two areas: emotional and systemic.

The emotional stress of living with a life-threatening illness has been well documented (Jenkins, 1996). Parents have the additional worry about their children. Along with the fear of their own deaths, there is the realization that they may not see their children grow up (Mason, 1998). This realization can be too painful to cope with for some parents. As Taylor-Brown (1998) explains, "some parents may never be able to designate a guardian because the task is simply too emotionally challenging" (p.352).

All states with standby guardianship legislation require that a non-custodial parent be notified about the request to appoint a standby guardian (Larsen, 2000; State Codes). Most states assume that the non-custodial parent will take over custody and guardianship of the children, and require extensive efforts by the custodial parent to locate the non-custodial parent. This is true even when the non-custodial parent has had little or no contact with the children, and has not contributed in any way to the raising of the children (McConnell, 1995). This requirement and the underlying assumption may prevent a custodial parent from making a formal permanency plan and appointing a standby guardian. A study done at Montifiore Hospital in New York City (Casey Family Services, 1999) interviewed 200 mothers with HIV, who had a total of 378 children. Most of the mothers reported that the children's fathers had little or no involvement with the children, and few of the mothers wished to involve the children's fathers in future care or custody planning. The study found that the women feared: "(1) giving the father an opportunity to take the children away from them, (2) re-initiating contact with someone who may have been abusive in the past, or (3) alerting the father to a custody agreement he may not like and therefore increasing the chance he will contest the plan" (p. 121).

Systemic barriers can include lack of or misinformation about planning, and complex and insensitive legal and child welfare systems (Casey Family Services, 1999). Parents may lack knowledge about the range of permanency planning options available, including standby guardianship (Taylor-Brown, 1998). They may also not know to whom to turn to get this information or who is available to provide legal services (HIV PPNews 1997).

The standby guardianship process itself can be complicated and daunting. In their Best Practices for Standby Guardianships (Ambia et al., 1998), a group of service providers in New York City detailed problems faced by parents in setting up a standby guardianship. Parents and potential standby guardians were often treated as if they were under investigation for child abuse and neglect. Despite the fact that the court was not required to investigate the homes of potential standby guardians, in practice home investigations were routinely done on both the standby guardian and the petitioning parent. In addition, clerks and judges routinely requested additional documents and hearings that were not required by the standby guardianship legislation, and which delayed the proceedings and unnecessarily invaded the privacy of the petitioner and standby guardian.

Because of the difficulties involved in going to court and getting a judicial appointment, parents who do make future care and custody plans often prefer to designate the standby guardian in writing; rather than to go to court (Casey Family Services, 1999). This puts the onus on the standby guardian to go to court, after the death or incapacity of the parent, and petition for guardianship based on the written designation. The disadvantage of this arrangement is that a full court hearing will not be "held during the parent's or legal guardian's lifetime, when the parent or legal guardian is available to give testimony as to why the proposed standby guardian should be appointed" (HIV Law Project, 1994, p.11).

Due to these obstacles, many parents either develop no future care and custody plans for their children or rely on informal agreements with relatives and friends (Draimin, 1995; Forehand et al., 1998). Orphans are often left in limbo, with no specific or legal plan to provide for their safety and permanence (Levine, 1995; Taylor-Brown, 1998). Addressing these obstacles and promoting the use of standby guardianship is a key element in establishing permanence by legalizing the relationship between the new caretakers and the children (Mellins, 1996; Geballe, 2000).

Overcoming Obstacles to the Utilization of Standby Guardianship

Because of the emotional and social complexity associated with future care and custody planning, assisting a parent in utilizing standby guardianship, or in making any kind of estate plan or advanced directive, requires a continuum of services. At a minimum, this continuum should include medical, mental health, case management, and legal services (Taylor-Brown, 1998; Selbin & Del Monte, 1998). Medical services should be available to treat the parents' illnesses. Mental health services for parents should address the emotional difficulty of living with a terminal illness, of preparing for the possibility of death, and of the need for the children to have a safe and permanent home. Children may also need counseling to cope with the loss, or potential loss, of their parents (Taylor-Brown, 1998). As most parents are simultaneously coping with many problems, case management services are needed to provide assistance with concrete needs, including housing, income support, and child care (Selbin & Del Monte, 1998). Legal services should detail the range of permanency options for the family, assist with the completion of the future care and custody plan, and advocate to ensure the activation of the plan (Selbin & Del Monte, 1998). Service providers should be knowledgeable about the legal and bio-psycho-social issues involved, and work cooperatively to help provide for the safety and permanence of children whose parents are terminally ill (Retkin, 1997). Ideally, service providers would be located together, to provide maximum accessibility and continuity of care (Selbin & Del Monte, 1998).

Special consideration should be paid to the needs of single parents with terminal illnesses. For many families, the immediate answer to who will care for the children after the death of one parent is the other parent. Unfortunately, this is not always possible. For a variety of reasons, the other parent may be unable or unwilling to become the caretaker for the children (McConnell, 1998). Although the non-custodial parent may not have lost parental rights, many custodial parents may prefer to have a close family member appointed guardian, particularly one who already has a good relationship with the children (Casey Family Services, 1999).

In deciding with whom the children should live after the parent's death or incapacity, the custodial parent's choice should be recognized as being in the best interests of the children. With this presumption, substantial weight should be given to the custodial parent's choice for standby guardian (Ambia, 1998). Judicial appointment of the custodial parent's choice for standby guardian is not tantamount to terminating the non-custodial parent's rights to the children. The non-custodial parent does not lose legal rights or standing in family court (McConnell, 1998).

The presumption that the custodial parent is acting in the best interests of the children should also strongly inform the court processes of appointing and activating a standby guardian. Family court hearings, paperwork, and other administrative details should be streamlined. Standby guardianship laws should be designed and implemented such that they "encourage parents to come forward and plan for their children's care early in their illness" (Ambia, 1999, p.1).

Conclusion

Effectively assisting parents in making future care and custody plans for their children requires the development of flexible permanency planning options, such as standby guardianship. Standby guardianship legislation, in intent and implementation, must recognize the unique situations of parents and acknowledge that, in making future care and custody plans, the parents are acting in their children's best interests. In practice, providing a continuum of services for the children and parents is key to facilitating the utilization of standby guardianship. At a minimum, these services should include medical treatment, legal assistance, mental health counseling, and case management.

Unfortunately, most states do not allow standby guardianship as an option for future care and custody planning. Even where standby guardianship is available, "few states have established multidisciplinary programs that help parents take full advantage of the new guardianship options. Few have even begun to address the complex needs of the 'second' families." (Geballe, 2000, p.407).

Creating laws and developing multidisciplinary services that promote the safety, well-being and permanency of children are important challenges for legislators and for providers of mental health, medical, legal and social services. Discussing this challenge in an April 2000 article, Geballe issued a call to action to meet the needs of children and families affected by terminal illness:
How well we ensure the quality and continuity of parental care for children whose parents are living with HIV and AIDS, or who later die of it, is one of the tests of our generation. If we fail to meet this challenge, we are knowingly placing thousands of children and youth at enormous, predictable, and potentially fatal risk (p.407).

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Minnesota Session Laws 2000, Chapter 404. [online]. http://www.revisor.leg.state.mn.us/slaws/2000/c404.html.

Nebraska Statutes, Chapter 30, Section: 30-2608.

New Jersey Permanent Statutes, Title 3B, 3B:12-69-3B:12-78.

New York State Consolidated Laws, Surrogate's Court Procedure, Article 17, Section 1726.

North Carolina State Code, Chapter 35A, Subchapter IV, Article 21, Sec. 35A-1370 to 35A-1382.

Ohio Revised Code, Title [13] XIII, 1337.09.

Pennsylvania Consolidated Statutes, Title 23, Part V, Chapter 56, Sections 5601- 5616.

Texas Probate Code, Chapter 13, Section 676.

Virginia State Code, Sections 16.1-349 - 16.1-355.

Washington DC: Official Code, Title 16, Sec.2, Chapter 48.

West Virginia State Code, Chapter 44A, Article 5, Section 44A-5-1 TO 44A-5-8.

Wisconsin Statutes, Chapter 48, Section 48.978 - 48.978(2)(c) 1.f.

Wyoming Statutes, Title 3, Chapter 3, Article 3, Section 3-3-301.

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