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Making Plans for the Future Care of Your Children
Submitted by Abdul Wakil Rushaka
Table of Contents
It is difficult for most parents to think about not being able to take care of or make decisions for their children. While it is important for all parents to consider this possibility, it can be even more important – and scary – for parents who are living with HIV (HIV+). If you plan ahead and make arrangements while you are healthy, you will have less to worry about if you become sick. Also, knowing that your children will be well cared for if anything happens to you can help both you and your children feel safe and secure.
With proper planning, you can make sure that your children will have good care in the event that you become too ill to provide for them. Planning ahead can not only give you peace of mind, but also allow you to make choices that reflect your values and what you would like for your child.
Arrangements for the future care of children require formal legal procedures. These legal procedures vary from state to state, so it is important that you consult the legal department at a local AIDS service organization or a private attorney who knows your state’s laws. You may also be able to get valuable information and assistance in planning for the future care of your children from a local social worker. Sometimes there are low-cost or no-cost (‘pro bono’) legal services available in your area. For help finding these, check out the websites for Pro Bono Net and LawHelp.
The most common ways of making plans for the future care of children are described below.
Guardianship is a legal arrangement that allows you to select someone else to care for your children in case you become unable to do so. The legal guardian has the right to act as the children’s parent and can make important decisions for the children, including decisions about health care, education, and housing.
There are different types of legal guardianships. Full guardians are responsible for both the personal and financial care of the children. Limited guardians are ‘limited’ to being responsible for either the personal aspects of the children’s care (nurturing and physically caring for the children) or the financial aspects of their care (handling the monetary needs of the children).
Selecting a guardian for your children can be a challenging but rewarding process. It is important to do it when you are well, since in an emergency, the state’s court system steps in to select a guardian and may choose someone without your input. Here are some questions to help think about whom to select as a guardian for your children:
Is the person dependable and capable of caring for your children? Will he/she be able to provide a stable and nurturing home for your children?
Is the person willing to take on the long-term responsibility of parenting your children?
Do you want your children to stay together? If so, it is important that the person you name as guardian be willing to care for all your children and that you name that same person as guardian for all your children.
You may also want to consider if you feel comfortable talking to the guardian about your health, what your children think of the guardian, and if the guardian shares your values and has similar ideas about raising children.
Making someone a legal guardian of your children requires a court hearing. At the hearing, you will need to explain to the judge why you want someone else to take care of your children. The person you want to name the guardian is called the designated guardian.
The designated guardian must also appear in court and show that he or she is a person over 18 years old and has never had a felony conviction. The court will look into the designated guardian to see if he or she is qualified to provide care for the children. The court will legally recognize the guardian of your children once the court is convinced that the guardian you chose is qualified and that having a guardian is in the best interest of the children.
In making these arrangements, you must understand that both parents may have parental rights to care for the children, even if one parent has never been involved in the children’s life. If you believe that your children’s other parent would not provide good care for them, you obtain a court hearing to testify why your selected guardian would be a better caregiver than the other parent. The court can make the legal decision, based on the evidence, as to which person would make a better guardian.
The guardianship arrangements you make now do not have to be permanent. You can make changes in the future if you decide you would like different arrangements for your children.
Standby guardianship allows a parent to name someone who will become the children’s guardian at a future date. This future date occurs when the parent becomes unable to care for the child, the parent dies, or the parent chooses to make the guardian the legal caretaker of the children. Standby guardianship is not available in all states.
Selecting someone as a standby guardian enables a parent to keep her/his parental rights and decision-making responsibilities while the parent is able. Then, if the parent becomes unable to provide care to the children, the standby guardian can take responsibility and has legal authority for 180 days after the parent becomes unable to provide care. Within 180 days the standby guardian must make a legal request for guardianship of the children in order to maintain legal authority. If the parent’s health improves, parental authority is restored to the parent, and the guardian goes back on standby.
How to name or “designate” a standby guardian for your children depends on the state in which you live. Most states require that you either (1) go to court and tell the court whom you wish to name as the standby guardian, or (2) designate the standby guardian in writing, and that person goes to court after you become disabled. As with regular guardianship, you can change or reverse the standby guardianship arrangement at any time.
You can designate a guardian in your Will to make plans for the care of your children after you die. However, you should not rely on your Will to select a guardian because it is not legally binding in court. While the court would view a guardian named in your Will as strong evidence of your intention, it is possible that the court would make a guardianship decision different from the one you wanted. In most cases a parent should make formal guardianship arrangements in addition to designating a guardian in the Will.
Parents can also arrange for future care of their children through adoption. With adoption, the biological parents give up all of their legal rights to their children. The adoptive parents take full parental rights and responsibilities, which are legally recognized and enforced. For this reason, many parents are reluctant to arrange for adoption of their children.
An adoption decree would end the biological parents’ rights to custody and visitation. The adoption process can be time consuming. Both biological parents, if alive, must consent to an adoption and the court must conduct investigations regarding the suitability of the adoptive parents.
Some states recognize standby adoptions, in which the adoptive parent(s) is given legal parental rights after the biological parent(s) becomes too disabled to care for the children or dies. The standby adoption arrangement is often more attractive to parents because they do not lose their parental rights until they become too ill care for their children or die.
Although many people living with HIV are living long, healthy lives, it is wise to make formal arrangements for the future care of your children. A parent’s failure to make these arrangements will result in the state having to make decisions about the future care of the children in the event of the parent’s incapacity or death. Unfortunately, it is possible that a state decision, though well-intentioned, could go against a parent’s wishes or cause unintended confusion and disruption for the children.
You may find it helpful to look at the pros and cons of the various ways of making plans for the future care of your children. It may help to talk to a social worker or counselor about the emotions and concerns that these issues may cause. In order to save your family, your children, and yourself difficult decisions during a period of serious illness, it is best to make your wishes known about your children’s care clear and legally binding. It is also best to make your wishes known sooner rather than later
guardianship and HIV
taking care of children
future care for children
Select the links below for additional material related to guardianship.
HIV, Custody and Guardianship (PWN)
Future Care and Custody Planning (National Abandoned Infants Assistance Resource Center or AIA)
Programs for Families Affected by HIV/AIDS (DHHS)
Standby Guardianship (AIA)
Guardianship (National Resource Center for Permanency and Family Connections)
Standby Guardianship (Child Welfare Information Gateway)
Providing a Guardian for Your Children (LiveStrong)
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thewellproject.org Learn about common, important ways to plan for the future care of your children: guardianship, standby guardianship, wills, and adoption.
The Good News
Every parent wants his or her child to be healthy and safe. When your child is living with HIV (HIV+), there are some extra steps to take to make sure that he or she gets the right care. The good news is that HIV+ children, just like HIV+ adults, are living longer, healthier lives with improved treatments.
HIV in Children
HIV is somewhat different in children than in adults. HIV+ children normally have much higher CD4 cell counts than HIV+ adults, but may also have higher viral loads (the amount of HIV in the blood).
In adults, HIV weakens a fully mature immune system. In children, HIV attacks a developing immune system. As a result, HIV+ children - even those on HIV drugs - are more likely than both HIV-negative children and HIV+ adults to get bacterial infections, including ear infections and pneumonia.
In addition, HIV+ children who are not taking HIV drugs are more likely to become sick with shingles (herpes zoster), Mycobacterium avium complex (MAC), and a lung problem called lymphoid interstitial pneumonitis (LIP). LIP symptoms include fever, coughing, and shortness of breath. Thrush (white patches in the mouth due to yeast) is common in HIV+ children who are not on HIV drugs and can make it difficult to eat. Since infections can start in the mouth, it is important that HIV+ children see a dentist regularly.
HIV+ children who are not taking HIV drugs may be small for their age and may not grow at the same rate as HIV-negative children. An HIV+ child may be undersized or underweight because of loss of appetite related to HIV or because of some of the drug treatments. HIV+ children may have diarrhea, which can also make it difficult to gain weight. It is important that HIV+ children have proper nutrition. But getting kids to eat right can be hard, even when children are not living with HIV! If you have questions or need help, it is important to ask your child’s health care provider or an AIDS service organization for a referral to a dietician who knows about the nutritional needs of HIV+ children.
Lastly, children living with HIV who are not taking HIV drugs may also have more learning and thinking problems. Some of these thinking and behavioral difficulties, as well as many of the illnesses listed above, can be prevented by taking HIV drugs. HIV+ children who take HIV drugs can now grow into healthy adults, get jobs, have HIV-negative children – and make many of their dreams come true.
The US Department of Health and Human Services (DHHS) has made recommendations to prevent HIV+ children from getting opportunistic infections (OIs), or diseases that attack the body when the immune system is weak. All HIV+ infants up to the age of one year are given medicine to prevent pneumocystis pneumonia (P*P, also called Pneumocystis jirovecii), a type of pneumonia that is more likely to affect people with weakened immune systems. After the first year, some children should still receive preventive medicine depending on the health of their immune systems.
If an HIV+ child tests positive for exposure to tuberculosis (TB), it is important that the child take medicine to keep TB from developing. Depending on the child’s age and immune system, medication may also be given to prevent mycobacterium avium complex (MAC), which is caused by a germ that can affect the lungs or the gut. In some cases, as the child’s immune system becomes stronger, her or his health care provider may suggest that these kinds of preventive medicines can be stopped.
Vaccinating your child is one of the most important things you can do to keep him or her from getting sick. HIV+ children are immunized for most diseases in the same way as HIV-negative children.
Check with your child’s health care provider about any special requirements for vaccines for HIV+ children. For example, it is important that HIV+ children get the measles, mumps, and rubella (MMR) vaccine and the chicken pox (varicella) vaccine if their CD4 cells are high enough. However, they should not receive these vaccines if their CD4 counts are very low.
No parent can protect a child from every germ. While you may want to keep your HIV+ child away from people who have colds and the flu, it is important to understand that your child will eventually be around someone who is sick. Try to teach your child to practice frequent and thorough hand washing. Because children often rub their eyes or put their fingers in their mouths or noses, keeping hands reasonably free from germs and using tissues to wipe your child's eyes or nose can help keep your child healthy.
HIV Care and Treatment for Children
Finding a pediatrician (children’s doctor) with whom you feel comfortable and who has experience treating HIV+ children can be very important for your child’s health. It is helpful to have a local pediatrician who is close by and can help with all of the regular childhood issues, and to consult a health care provider who is an HIV expert (especially if your local pediatricians do not have a lot of experience treating HIV+ children). Expert HIV pediatricians will often work at a children’s hospital or medical center with an HIV program.
HIV drug treatment works very well for most children. and starting it early will keep HIV from causing more damage to your child's body. The World Health Organization (WHO) recommends that all HIV+ children less than 12 months of age receive HIV drugs, regardless of their CD4 count. The WHO treatment guidelines can be found here. The DHHS has also put together a set of pediatric treatment guidelines that recommend when children should start medications and which ones they should take.
Your child’s HIV specialist is the person to talk to about when to start HIV drugs, which ones to start, and what the possible drug interactions and side effects might be. There is not as much information available about the use of HIV drugs in children as in adults, and not all HIV drugs are available for children. Still, the US Food and Drug Administration (FDA) has approved over thirty HIV drugs for children. Their list of approved HIV drugs for children can be found here. Finding the right dose is important. Children's doses are based on their weight, so dosing will have to be adjusted as your child grows.
Once treatment is started, it is important that your child be checked regularly to make sure that the HIV drugs are working well and not causing any serious side effects. Work with your pediatrician to keep a close eye on your child’s growth, development, and lab tests (such as viral load and CD4 counts). If you see problems, you may need to talk with your child’s HIV provider about changing to different HIV drugs. It is also important to ask your child if he or she is experiencing any pain. Staying aware of how your child is feeling will help you to know if he or she has become ill or is experiencing side effects.
The Challenge of Adherence for HIV+ Children
Medicines cannot work if they are not taken correctly. If children do not take their HIV drugs exactly as directed, HIV can mutate, or change. Some of these changes enable HIV to survive and reproduce (make copies of itself) despite having the HIV drugs in the bloodstream. When this happens, we say that HIV has developed resistance to the HIV drugs and the child will likely have to change to another treatment (for more information, see our article about resistance).
The best way to avoid resistance is to take medicine just as it is prescribed. This is called "adherence" and means taking the right amount of medicine at the right time and in the right way (with food, or on an empty stomach), without missing or stopping. Children need to be adherent to their HIV drugs’ dosing schedules for the treatment to work well.
When talking with your child’s health care provider about which HIV drugs your child will take, think about your day and how you will fit taking HIV drugs into your child’s schedule. If you are also HIV+, you may want to think about how your child’s dosing can fit with your own. It may be helpful for both of you to take your HIV drugs together, as a type of family activity; however, your child may take different HIV drugs that need to be taken on a different schedule.
Getting children to take medicine can be a real challenge. Children may not like how medications taste or they may have trouble swallowing pills. Many children do not understand why they should put up with drugs’ side effects. Older children may hide pills or pretend to take them.
It may be especially difficult for kids to take their medicines in front of others. Taking pills in public or in a social situation may cause embarrassment or emotional distress. Going on vacation, trips, or to camp may make it more difficult for children to stick to their medicine schedule. It is important to talk about these situations with your HIV+ child and plan ahead for problem times.
Both you and your child may need extra help with your child’s adherence. Ask your pediatrician or other parents for suggestions about how to help your child take medication. Try using reminders, rewards, timers, color-coded messages, and weekly dosing packets to check adherence. If your child is having trouble taking a particular HIV drug, talk to your health care provider. It is possible that the HIV drug can be switched to a different one or that your child can be put on a different schedule.
HIV+ Children and Disclosure Issues
Many parents are concerned about who they should tell about their child’s HIV status. It is your right to decide this for yourself. Your HIV+ child is not a danger to others. HIV cannot be spread through casual contact or saliva, tears, or sweat. Your child cannot infect someone by hugging, going to school, or sharing toys, utensils, food, and drinks. It can be very helpful for HIV+ children to understand this so they can interact at school and with other children without concern.
It is important for parents to help their children take responsibility for protecting themselves and protecting each other. HIV can be transmitted through blood and certain bodily fluids (semen, vaginal fluids, and breast milk). Since there is a small chance that infected blood on a toothbrush or razor could infect someone else, it is best not to share these items. You can teach your child what to do if they cut themselves and how to dispose of their used bandages and other items.
Those who need to know about your child’s status are the people involved in their care, such as nurses, pediatricians, dentists, and social workers. It may be helpful to get support from your health care providers or local AIDS service organization as you decide whom to tell. While it is for you to decide when is the best time to tell your child about his or her HIV (see our article, “Talking with Your Children about Your HIV Status or Your Children’s Status”), it is very important to tell your child before she or he becomes sexually active.
Taking Care of Yourself
Any childhood illness can be hard for parents as well as for their kids. As a parent, you might find yourself wishing that you could take the sickness away from your child. You may feel upset because the medication that you need to give your child causes him or her distress. You may feel helpless when there is not a good way to explain the situation to your child. Remember that these are normal experiences and feelings for any parent.
It is as important to take care of yourself as it is to take care of your HIV+ child. Here are some tips:
Find information and resources at a local AIDS service organization (click here to search the POZ directory in the US; go to AIDSmaps’ e-atlas to find global resources)
If you feel alone, find other parents who can understand and provide support. If there are no other parents nearby who have HIV+ children, find a group for parents of children with other on-going health care needs or look for an internet group.
If you are HIV+ take care of your own emotional and physical health. Many parents put their children’s health first. You need to stay healthy to help your child.
If you have other children, find special time for them too
While you want your child to be healthy and safe, it is important to allow him or her to enjoy normal childhood experiences
Remember that it is okay to ask for help from family and friends. While being a parent is a full time job, sometimes being a good parent means taking a break!
thewellproject.org Get basic information on HIV in children: HIV care and treatment, preventing illness, drug adherence, disclosure of HIV status, and more.
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