Fall 1996 Human Rights Magazine

By Andrea Passalacqua

Losing a family member to AIDS can be a devastating experience.

Losing a parent to AIDS can be even worse.

As the AIDS epidemic becomes an ever-increasing problem in the United States, much focus is placed on the unfortunate individuals who die from the disease every year and the family members who are forced to cope with the tragedy.

But, while many loved ones are affected by such a loss, the children of those who die of AIDS are most dramatically impacted.

At the same time that they lose possibly the most important figure in their life, they must deal with the questions of where and with whom they will spend the remainder of their childhood years.

Too often this life-altering decision is not made until after the parent is in the last weeks of life, with very limited decision-making capabilities, or, in some cases, after the parent has died.

"Parents don't put this decision off because they want to," said Linda Lisi-Tenen, executive director of Serenity House, a pediatric AIDS foundation in Orlando, Fla. "They truly don't have the education behind them."

Even if the parents do live for an extended period of time after discovering they have AIDS, the children in the family are still at a great disadvantage.

"These kids don't get to go play basketball during the week," Lisi-Tenen said. There's nobody to take them.

"These kids don't get to go swimming. The only thing they ever get to do is sit at home. And, in some instances, they don't even get to go out and play because the neighborhood is so dangerous."

Lisi-Tenen spoke about the most pressing social service and legal issues facing children affected by AIDS. Her comments were part of the program, "Lost Faces of AIDS: Children and the AIDS Pandemic," cosponsored by the Section of Individual Rights and Responsibilities and the Section of Litigation at the 1996 annual meeting of the ABA.

But much effort is currently taking place to help ensure that children affected by AIDS can continue their lives even after their parents pass away.

The possibility of stand-by guardianships is being considered as a method of allowing people who are chronically ill to deal with their children in permanency planning while they're still alive.

By the year 2000, it is predicted, 100,000 uninfected children will be born to mothers with AIDS.

Needless to say, such resolutions will affect more than just a minuscule sector of society.

States that adopt such legislation, as Kentucky, New Jersey and North Carolina have already done, would enable patients to determine where their children will live when the time comes.

"This is instead of not only facing the spectrum of death but facing the spectrum of having your children and loved ones abandoned in whatever state system would be left to take care of them," said Chicago attorney Gabrielle Sigel, moderator of the discussion.

Even if the issue of guardianship is finalized while parents are still healthy, the children of AIDS patients still spend a large portion of their youth facing problems out of their league.

Many are living in shame, and true friendships are impossible to develop since the significant secret of their parent with AIDS limits exponentially the ability to form a sense of trust.

"These kids are being raised with a whole different set of values, a whole different set of philosophies on life," Lisi-Tenen said.

As fresh information and potential cures are released every month, it would seem that life should get easier for these troubled children.

But even with effective treatment for this lethal disease already on the market, life doesn't always look as if it can be healed for many AIDS patients and their families.

Many financial and emotional problems will persist through even the most potentially promising circumstances, Lisi-Tenen said.

"Through drug treatment, we do expect our parents to live a little bit longer, if not a lot longer," she said. "They're not going to be necessarily the healthiest parents on this earth.

"They're still going to have the same problems. They're not going to go away just because we come up with some new drug."

Nonetheless, there are drugs and combinations of drugs that look like they're going to have a significant effect on the disease, said William Adams, Jr., an associate professor at Nova Southeastern Law School in Ft. Lauderdale, Fla.

Adams said that some people who tested HIV- positive before certain drug treatments seemed to be testing negative now.

Along with the current dilemmas that face AIDS patients and their children, the panel discussed how the legal system and the social service system can address and resolve the ethical conflict between these two professions, who typically have different perspectives.

Despite any tension the public might perceive between the professions, the two must work together in order to provide proper services to AIDS patients. For instance, social workers specialize in getting to know and understand the patients on a personal level, which is vital information to any lawyer who wants to present a winning case.

"The reason we need to involve social workers is because of the emotional trauma that the families feel," Adams said. "Also so that we can help do the interviews appropriately by establishing who the client is and what that means in relation to the other people involved."

The interviewing process is so important in AIDS cases that Adams tells his students that their intelligence and diligent efforts are practically wasted if they don't have good people skills.

In other words, a law student who aces every exam will still fail without the ability to get the right information from clients, which requires a warm personality during these crucial interviews.

Other instances in which a social worker might assist a lawyer include making evaluations of clients or giving advice on how to approach a hard-to-reach child.

"It is often times a complex interviewing situation to identify what the child's real feelings are and whether they do have the capacity to be making this decision," Adams said.

While some children are quite adamant about who they want to live with after their parent dies, others are almost ambivalent about the entire process.

Adams explained that it is perfectly OK for a child to have mixed feelings on the guardianship issue. He simply tells the judge exactly where the child stands so that the court can make its decision based on other significant factors.

Despite the working relationship that lawyers and social workers often develop, there are still significant differences between the two professions.

Possibly the most consequential dichotomy involves the conflicting confidentiality codes that each profession follows.

"Our code tends to be stronger than psychologists, psychiatrists, doctors or social workers," Adams said. "In fact, the social workers codes tend to say that the social worker is bound to safeguard the best interest and that sometimes, if it is in the best interest to reveal the confidence, the social worker has permission to do so."

The confidentiality issue is one that might be considered by children as they decide with which party they will share their true desires.

Another factor that might impact which party the child feels most comfortable talking to is the differing approaches that the social workers and lawyers take when working with them.

For instance, the social workers generally take a different approach with advocacy than the lawyers do.

"They do not see the adversarial advocacy rule as being the most appropriate," Adams said. "In fact, some of them don't take an adversarial approach until all other approaches have failed, which is, of course, very different from what our role as an advocate is."

But even once the custody decision is resolved, children of AIDS patients deal with more emotional trauma and all-around difficulty coping than many other people who find out that their loved one has a terminal illness.

The AIDS label presents an entirely new element to an already catastrophic situation, Sigel said.

"Not only do these children have to deal with the death of their parent, they also have to deal with the way their parent died," she said. "The stigma that attaches to their parent's demise as well as the stigma that attaches to them as the child or relative of someone who's infected with HIV or has AIDS."

Lisi-Tenen urged the lawyers to get involved with helping the children of AIDS patients, even though many of them are too poor to pay for a lawyer.

"You are obligated to give back what you receive, and these children need your help," she said.

Andrea Passalacqua is a writer in Orlando, Florida.

As published in Human Rights, Fall 1996, Vol. 23, No. 4, p.4-5.