V. LONG-TERM PLANNING FOR CHILDREN WHOSE PARENTS HAVE HIV, AIDS, OR OTHER TERMINAL ILLNESSES
This section explores the potential issues parents, family members, and caregivers encounter when planning for the custody and care of children in the face of parental illness or death. Although the context for this discussion is diagnosis of HIV, the infection which later may develop into AIDS, the ideas and potential solutions are applicable to any situation in which a parent or legal custodian suffers from a life-threatening illness. While any terminal illness is tragic and painful, situations where a parent has contracted HIV or AIDS are especially difficult. Feelings of anger, depression, denial, dread of negative social reaction, and fear of impending disability or death overwhelm even the best intentions to make arrangements. Thus, it is no surprise that HIV infected mothers make legal custody arrangements in only 25 percent of the cases, even though the majority of children (91 percent) will reside with a family member after the mother's death.10 Parents and legal custodians, however, cannot be assured that the desired family member or friend will gain custody of their children. Early and proper planning helps to ensure that their decisions are honored and that kinship caregivers are prepared financially, emotionally and logistically to meet the needs of the children in these special situations.
Parents and legal custodians, not just those diagnosed with a terminal illness, are encouraged to prepare custody and care plans for their children as early as possible in order to avoid having to make decisions during a crisis - or worse, a situation where the parent or legal custodian is incapacitated to the extent that decision-making must be left to others who may or may not respect the individual's wishes. Faced with the prospect of being unable to care for their children, parents and legal custodians may well undergo a premature sense of loss long before the illness takes over. They often feel insecure about relinquishing their parental or custodial roles to someone else and fear they will be replaced in the hearts of their children by the new caregiver. These emotions must be recognized and respected before a parent or legal custodian can move forward with the planning process and explore options available for future custody of his or her child. The planning process can become an empowering experience for the parent or legal custodian. Feelings of guilt or pain are soothed when plans are finalized for their children's care. The goal is always peace of mind for both parent and children.
Relatives or close family friends who are able and willing to serve as caregivers for a child can assist a parent in navigating the complex legal and social issues surrounding the custody process. A careful analysis of the situation should be undertaken, preferably with the assistance of an attorney, a social worker, and/or other qualified professionals. Questions and issues needing to be addressed include the following:
- Is there more than one child? If so, can a plan be created that keeps siblings together?
- Does the child have any special medical or psychological needs?
- Is there is a surviving non-custodial parent, and does she or he want custody of or contact with the child?
- Does the proposed caregiver have the health, space, and time to devote to a child?
- Does the proposed caregiver have sufficient financial resources?
- What are the desires and needs of the child?11
- Is there any family member or friend who may contest the plan?
The planning process is much more difficult if a non-custodial parent contests the plan, or if the nature of the parent's relationship with his or her family and/or the non-custodial parent is strained. A non-custodial parent is usually a parent's first choice unless that individual is not willing or able to care for the child. However, the non-custodial parent and parent may have a history of domestic violence or substance abuse that influences whether the child should be placed in his or her care. Court hearings may be necessary to determine the best interests of the child.
If a fit non-custodial parent does not exist, family members usually care for the child when the parent cannot. However, this is not always the case. Sometimes, parents do not want their child to live with grandparents or other family members because of demonstrated negative attitudes toward HIV disease, a history of physical or substance abuse, or differing cultural or religious beliefs. If any of these conflicts are present, the parents need to determine, again as early as possible, who will have custody of the child when the parent is unable to care for him or her. Early planning can help avoid an emergency situation where the parent has become too ill to participate in intense family discussions and critical decision-making about the custody of the parent's child. If the parent cannot participate in these discussions, the very people with whom the parent did not want his or her child living, may end up the custodians.
As discussed below, there are legal tools available to help ensure that a parent's wishes will be followed. If there is disagreement among family members as to placement, formal mediation should be considered to reach resolution.
Once the parent, legal custodian, grandparent, or other third party, and the child have made an initial analysis of the situation, the next step in the process is to create the plan. The plan should include:
- Legal options;
- Potential sources of financial assistance to parents and caregivers;
- Documentation of the family's history by the biological parent; and
- Compilation of support services for parent, children, caregivers. 12
There are several legal options available for the permanent or temporary transfer of custody from a biological parent or legal custodian to another adult, all of which are explored in detail in this manual:
- Appointment of a testamentary guardian through a will;
- Designation of a temporary or stand-by custodian;
- Order of custody for the third party in family court prior to death;
- Termination of parental rights leading to adoption by an adult of the parent's choice;
- Filing a private CHIPS petition or making a child protection report; or
- Delegation of Parental Authority.
Parents and potential caregivers must candidly discuss each of these options in light of the child's best interests to find the appropriate legal relationship to define the plan. Each of these options is fully described in this manual.
Kin who become guardians or custodians after the death of a child's parent should be prepared for many changes in their own lives. The child will require support throughout the bereavement process. The caregivers may need to move into a larger home, or even relocate to a new community, in order to accommodate the child. Finally, kin, especially grandparents, may need to reevaluate their parenting philosophy in light of the different needs of children in a new generation. 13
Resources are available to provide financial support to the kinship or third party caregiver, the parent, and the child, including social security, cash assistance and medical benefits as well as ongoing child support obligations from non-custodial parents. These options are discussed fully beginning in the Public Assistance Programs chapter.
Parents and legal custodians can create a legacy for their children by documenting their time together as a "family history." Grandparents can help parents construct these special histories and ensure that after the parent is gone, the child will always have access to a tangible memory of his or her parent. Suggested legacy projects include:
- Writing a letter to each child;
- Making a family tree;
- Making a video or audio tape recording;
- Creating a family photo album;
- Developing a family scrapbook; and
- Putting aside a meaningful gift from the parent or legal custodian to be given to the child on a special occasion.14
Many types of support services available to kinship caregivers, third party custodians, parents, family members and children affected by HIV disease. Suggested services range from counseling to respite care, case management, special education programs, support groups, hospice care, budgeting, and much more. The Minnesota AIDS Project AIDSLine can provide links to all of these services. Call 612-373-AIDS (612-373-2465 TTY) or 1-800-248-AIDS (888-820-2437 TTY) or visit www.mnaidsproject.org.