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A Victory for Families in Need

by Cathryn Miller-Wilson

Spring 1999, Vol. 62, No. 1

Rosemary and Charlie were married fifteen years ago and have three daughters, ages 12, 8 and 4. Four years ago, just a few days after the youngest was born, Rosemary and the children escaped their house and went to a battered women's shelter. Rosemary had been severely beaten during most of her marriage and was finally able, with the help of hospital social workers and a family friend, to extricate herself from the situation. After spending several months in a shelter, she was able to find a new home with a confidential address in another section of the city. She heard rumors that Charlie had been looking for her, but she kept a low profile and never ran into him. She and her daughters started receiving counseling and repairing their lives.

Two years ago, Rosemary tested positive for the HIV virus. For a long time, she seemed to be coping well with the disease. She exercised and changed her diet, educated herself about HIV and made informal arrangements with her sister, Allison, to take care of her daughters after she was gone. Then, about six months ago, Rosemary started getting very ill. She was in and out of the hospital, sometimes spending as much as six days there before being discharged. Her sister started looking after the children and, at first, did so without difficulty. However, one day in the early fall, Allison was startled by a loud pounding at her door. Charlie stood outside on the stoop screaming that he had found his children and knew about their mother. He threatened to remove the children the second their mother died. Allison immediately called me and I agreed to meet her at the hospital in Rosemary's room.

At the AIDS Law Project, we represent parents in their fight against HIV/AIDS-based discrimination. Sometimes, that involves helping them to keep custody of their children or get them back from a third party, or assisting them in planning for the future care of their children after they have passed away. When I first began my work in 1994, I assumed, as many others do, that custody planning meant executing a last will and testament, a seemingly simple matter. But through the years, I have seen that too many callers' needs could not be met by a will, and the mechanisms for custody planning were not useful for dealing with the future needs of children.

Under law prior to the passage of Pennsylvania's Standby Guardianship Act, while a terminally ill parent could designate a future guardian in his/her will, this designation was not binding until a judge approved it well after the parent died. This meant that during the period between the parent's death and the approval of the guardianship designation, a period that can last as long as six months or even a year in some counties, the children had no legal guardian. A designated guardian of a medically needy child could not consent to medical treatment or even standard, school-related immunizations during this period.

In Pennsylvania, the rules and regulations concerning wills are primarily about the distribution of property after death and contain only one tiny provision about guardianship of a minor. Neither the laws nor the courts that traditionally deal with those laws are equipped to handle children's needs. Questions such as, "Who will consent to my HIV+ child's medical treatment during the two to six-month period between my death and my nominated guardian's court approval?" and "What happens to my children if my nomination is not approved by the Orphans' Court?" seemed only to lead to the uncertainties of the foster care system. And pleas for help with the children when my clients periodically had to be admitted to the hospital for a five to ten-day period had to be answered by prayers that nothing bad would happen to the children during that time. There was simply no mechanism to transfer temporary legal authority to another person quickly unless there is some allegation that a child is being abused or severely neglected.

Under prior law, a terminally ill parent had only two options: (1) make no legal plans and hope that nothing requiring an adult with legal authority over the child occurs while they are incapacitated, or (2) transfer some or all of their parental rights immediately while they are still healthy and able to care for their children. Neither option was adequate for the parent's or child's needs.

But now there is a third option. In a clear victory for parents, children and their caregivers, Senate Bill 1051, known as the Standby Guardianship Act, was passed by the Pennsylvania House of Representatives by a vote of 198 to 0 on November 10, 1998. The bill was signed into law by Governor Tom Ridge on November 24, 1998 and became effective on January 22, 1999.

The Standby Guardianship Act creates a legal procedure for a terminally ill parent to appoint a trusted relative or other caretaker as legal guardian to "stand by" and be available to act as a child?s legal guardian immediately upon the parent's incapacity or death.

Under the Act, a terminally ill parent will complete a Standby Guardianship Designation form, nominating a standby guardian for their child. If the parent is healthy enough, he or she petitions the court for approval. The court holds a hearing to determine whether the parent's plan is in the best interest of the child. If the court approves, the standby guardian has the power to make legal, medical and other decisions for the child should the parent become incapacitated or die.

If the parent becomes unexpectedly seriously ill, it may not be possible for the parent to seek court approval. In emergency situations such as this, the parent completes the designation form without petitioning the court. The occurrence of a triggering event, such as the parent's incapacity or death, transfers authority over the child from the parent to the designated standby guardian for sixty days. Before the end of the sixty days, the standby guardian must petition the court to continue to serve as guardian. In this manner, the child is never without a responsible adult with legal authority to care for him or her and is able to remain in the parent's care for as long as that parent is able to care for the child.

Senate Bill 1051 also addresses the reality confronting any parent suffering from a terminal illness that formal, legal plans must be made for the care of their children after their death. Perhaps the most painful thought a parent in that situation must face, for some even more painful than coping with their own death, is that he or she will not see their child attend the senior prom, graduate from high school or go to college. In fact, many terminally ill parents tell me their refusal to accept this fact is what keeps them alive. To plan for their children's future without their loving care becomes, for many parents, an admission of defeat that will more certainly lead to their death than the terminal illness. For these reasons, many parents do not approach a lawyer until they are in the hospital and literally on their deathbed. As in the case of Rosemary, making plans this late under prior law was risky and traumatic for all involved.

When I got to the hospital, Rosemary was laboring for breath and crying quietly. We talked about the abuse that she had suffered during the marriage as much as we could, given that Rosemary was hooked up to an oxygen tank and had to pause often in order to breathe through her oxygen mask. Her story was difficult to piece together, but her terror was not. We spent all afternoon in the hospital, exhausting Rosemary and gathering what evidence we could. Allison and I then agreed to meet in Family Court at 8:30 the following morning.

The next day, we waited for several hours before being permitted to see the emergency judge on duty. After brief testimony, Allison was awarded temporary custody, ordered to serve the father and return to court in ten days. While waiting for the elevator to leave the courthouse, Allison's beeper went off. I held the elevator while she went to return the page. When she reappeared, Allison was sobbing uncontrollably: her sister Rosemary had just passed away. Allison's anguish was as much about not being with her sister in her last moments as it was about losing her sister. Of course, the entire anxiety-ridden morning waiting in court did not contribute anything positive to her emotional state.

Tragically, the grief and exhaustion that Allison felt at that moment was only beginning. Allison still had to face making funeral arrangements, comforting the children and spending another grueling session in court ten days away.

The children, meanwhile, who remained the only living witnesses to the abuse and who were terrified of their father, had to be prepared to testify in the event that the judge was unconvinced about the father's inability to care for the children. Allison hardly slept the entire ten days, thinking of what forcing the children to face their father might do to them so soon after their mother's death. Fortunately, Allison was eventually awarded permanent custody without the children's testimony. Nevertheless, even preparing the children for the possibility of having to testify was upsetting to them.

Had Senate Bill 1051 been law at the time of Rosemary's illness, all the anguish endured by her and her family could have been avoided. Rosemary could have completed a designation form right in the hospital. Upon Rosemary's death, Allison would have had sixty days to petition the court, during which time she would have temporary custody of the children. She and the girls could spend time focusing on the loss of their loved one rather than on an arduous and emotionally draining court battle. Upon petitioning to remain the children's guardian, Allison would still, under the Act, have to prove that Rosemary's allegations about Charlie's abuse were true, but both she and the children would have sixty days to grieve the loss of their loved one and prepare to face Charlie in court.

My visit with Rosemary, had the Standby Guardianship Act been available at the time, would have been comforting and reassuring rather than exhausting and upsetting. Upon receiving the completed designation form, I could have left Allison to rest by her sister's side with a simple reminder to contact me within two months of Rosemary's death about starting the approval process for guardianship of the children. For the girls, the grief over the loss of their mother would not have been compounded by having to immediately face the worries and uncertainties of the court process.

Laws similar to Senate Bill 1051 exist in New Jersey, New York, Massachusetts, Illinois, Connecticut, California, Maryland, Florida, Wisconsin and North Carolina. In addition to those ten states, Congress has recognized the benefits of this kind of legislation and has urged states to enact standby guardianship laws and procedures in Section 403 of the Federal Adoption and Safe Families Act of 1997 (Public Law 105-89).

Aside from Rosemary's struggle, there are many, many other families, with many other needs, who will also benefit from the passage of Senate Bill 1051. Standby guardianship helps terminally ill but high-functioning, sole-surviving parents ensure that a legal plan for their children?s future care exists without forcing them to relinquish any of their parental rights. It helps terminally ill parents with medically needy children ensure that their children's medical care will not be disrupted after they are gone, and it saves foster care dollars by supporting family decision-making and ensuring that nominated caregivers can obtain the legal authority that they need to care for the orphaned children.

More information about standby guardianships may be obtained by calling the AIDS Law Project of Pennsylvania at (215) 587-9377.

How Standby Guardianship Works

A parent completes a simple form that names a standby guardian and specifies when the standby guardian should step in to take care of the child, for example, if the parent becomes physically or mentally incapacitated or if he or she dies.
Parent is healthy and able to secure court approval of choice of guardian

1. Parent petitions court for approval
The court schedules a hearing and notifies everyone named in the petition, including any non-custodial parents.

2. Guardianship is approved by court.
At the hearing, the court determines if the guardianship is in the child's best interest. If so, it grants approval.

3. Standby guardian assumes authority upon parent's illness or death
When the parent is too ill to care for her child, the standby guardian becomes "co-guardian" with the parent. If the parent dies, the standby guardian becomes the child's permanent guardian. In both cases, the standby guardian assumes the authority to make legal, medical and other decisions for the child.

Parent is seriously ill and child needs guardian immediately

1. Parent becomes too ill to care for children or dies; standby guardian assumes authority for emergency 60-day period.
When the parent is too ill to care for her child, the standby guardian becomes "co-guardian" with the parent. If the parent dies, the standby guardian becomes the child's permanent guardian. In both cases, the standby guardian assumes the authority to make legal, medical and other decisions for the child for an emergency 60-day period.

2. Standby guardian petitions court for approval
Before the end of the 60-day period, the standby guardian must petition the court for approval. The court schedules a hearing and notifies everyone named in the petition, including any non-custodial parent.

3. Guardian is approved by court
At the hearing, the court determines if the guardianship is in the child's best interest. If so, it grants approval, and the guardianship becomes permanent.