Parents With AIDS and the Impact on Children

In this week’s episode of The Guardian, Nick represents a brother, aged five, and sister, aged four whose mother just died of AIDS.  Nick is appointed medical guardian for the children so that they can be HIV-tested.  The four-year old tests positive for HIV.  

The image of children being orphaned by AIDS brings to mind poverty-stricken, third-world countries with inadequate medical and social service resources.   The truth is that more and more parents are dying of AIDS in the United States. It is estimated that the number of children in the United States who have lost one or both parents to AIDS will exceed 90,000 during this decade.

As more and more women contract AIDS (women are the fastest growing AIDS population), an increasing number of children are impacted by this disease.  Along with the grief that comes from losing a parent to AIDS, children of parents with AIDS face a number of emotional and developmental challenges.  Because of the stigma attached to AIDS, many families keep the disease a secret, and fail to seek help or plan for children out of fear of being ostracized or humiliated.  When parents pass away, children are left with no plan and no one to turn to. They often feel isolated, and even fearful or reluctant to ask for assistance in coping with a disease that our culture treats as shameful.

Without help, some children who have lost a parent to AIDS will misbehave in school or turn to crime as they have been left with no safe or healthy outlet for their anger and confusion.

Children whose parents have AIDS may lose part of their childhood because they have to play a more adult role in the family.  Some children spend a great deal of time caring for their ailing parents and younger siblings, even dropping out of school to meet the demands of such responsibilities.  Their health, development and education may suffer as a consequence.  When parents die, children may face the difficult transition of leaving the home they have always known to begin a new life in an unfamiliar setting -- and perhaps with unfamiliar people. 

Social and human services organizations are working hard to educate the general public about AIDS and the issues AIDS patients and their families face.  Knowledge of the illness can help to alleviate the mystery and shame that surrounds this disease in our culture.

Counseling for children with AIDS is essential. As many parents with AIDS keep their illness a secret, children do not always receive the support and resources they need to cope with their fears about the illness and the grief of potentially or actually losing a parent to AIDS.  Counseling can provide the important support and resources for children whose parents have AIDS – or another terminal illness.

Medical Guardianships and Standby Guardianships

Parental rights include deciding what medical care and treatment your children will receive.  In some cases, the court will appoint someone other than the parent as a child’s medical guardian for purposes of making medical decisions regarding treatment or procedures.   In tonight’s episode, the court appoints Nick as medical guardian so that the children can be tested for HIV.

Medical guardians may be appointed for adults in situations where a patient is unable to consent and has not issued a directive regarding performance of medical treatment or a life-saving procedure.  A medical guardian generally is not necessary in situations where a patient requires emergency care to prevent death or further injury.  In those circumstances, hospitals will perform the procedure.

Many parents die of AIDS or other causes before making custody arrangements for their children.  To avoid that situation, some parents elect to designate a standby guardian.  Standby guardianship allows a parent with a serious or terminal illness to designate another adult to care for the parent’s child when the parent no longer is able to do so.  At that point, the standby guardian generally assumes shared physical and legal custody of the child along with the incapacitated parent.  When the parent dies, the standby guardian assumes primary custody.

Guardianship laws vary among the states.  Pennsylvania’s standby guardianship law, 23 Pa. C.S. section 5601, provides for the designation of a guardian by a person who because of injury or illness anticipates that he or she will be unable to continue to care for his or her minor children.  Pennsylvania law is relevant because the Guardian is set in Pittsburgh and KidsVoice advocates for children in the greater Pittsburgh area.