July 22, 2011

Case managers are usually social workers or public health nurses who help coordinate the lives of people with HIV infection. People with HIV infection are in extraordinary need of help with work, home life, medical care, medical insurance, legal issues, finances, and psychological problems. Furthermore, people with HIV infection are subject to so many sudden changes in health that planning becomes difficult. Fortunately, the complexity of their needs has been recognized, and increasing numbers of organizations, programs, and other resources now satisfy these needs. The quality and quantity of these resources vary. Case management is a way of linking the people with HIV infection to the resources in their own communities.     Working together with medical care providers, case managers commonly make two plans for each person with HIV infection: a medical care plan and a social work plan. The medical care plan includes plans for a range of continuing medical services, including home care, care in a clinic, hospital, nursing home, or hospice, and, when necessary, care in an addiction program or a mental health program. The social work plan includes financial plans, insurance benefits, benefits from publicly funded programs, resources for drugs, housing plans, and employment plans. The social work plan also links the person with HIV infection to community organizations that provide such services as support groups, home health care, companionship, meals in the home, and the like.     The primary goal of the case manager is to be an advocate for the person with HIV infection. This means obtaining for the person with HIV infection all the services that are available and appropriate. A second goal is to obtain the best services at the lowest price. In short, a case manager knows the system, and his or her job is to make the best use of it.     Case management services are sometimes funded by state health departments, by other sources of public funds, or by foundations. Insurance companies will sometimes pay for case management services. You can find out how to arrange funding for case management services by talking to the case manager or to a social worker.     Both the availability and the quality of case management services vary widely in different communities. Some are not run as well as others. Some may not be networked into both the agencies that provide social services and the agencies that provide health care services for people with HIV infection. And even those that seem to be run well and well-networked are difficult to evaluate. Case management has been used to care for the elderly, for the mentally ill, and for crippled children; evaluations of the usefulness of these programs have been quite variable. As for HIV infection, there is probably no other disease in medicine where the fundamental philosophy of case management is more sound.     Case managers can increasingly be found not only in comprehensive care programs but also in hospitals, clinics, state or city health departments, and community organizations dedicated to HIV infection. To find a case manager, ask if your hospital employs a case manager, and if not, if it will refer you to one. AIDS physicians and social workers will also know the names of the good case managers.*157\191\2*

June 26, 2011

To decide who should look after the children, parents need to consider a number of questions. Who wants the child? Who does the child like? Who is fit enough? Who is trustworthy? Who is emotionally capable of caring for a child? Who will think of the child first, will protect the child? Whose house is suitable? Who has enough room for a child? Who feeds their own children well? Who will pay attention to education, to developing the child’s talents? Who values what you do? Who has the money to take on a child? Who has the physical energy? Who has a stable home life, is in a stable long-term relationship, has stable relationships with other relatives? Who holds a job? Who is not drinking or using drugs?     Needless to say, no one is saint enough to meet all these qualifications. For many parents, deciding who should look after their children comes down to two questions: Who among my friends and relatives do I love the most? Who loves me the most?     Some parents have several children and need to consider whether to try to keep them together or to place them in separate surrogate families. Social workers generally advise keeping brothers and sisters under one roof: they say siblings do best together.     But keeping the children together is not always possible. If not, perhaps their surrogate families will take on the responsibility of keeping brothers and sisters in touch with each other. Perhaps, if everyone agrees, this can be made part of a legal agreement.     Some parents have raised children alone. They need to consider a further question of whether they want the child’s other parent to have custody of the child. In all states, at the death of one parent, custody of the child will normally be assigned to the remaining parent. If you do not want the child’s other parent to have custody, see a lawyer. Sometimes the other parent will legally sign off his or her parental rights. Sometimes another person—an especially close relative or friend—can be given legal custody instead. In any case, your state’s Department of Social Services or Friend of the Court can advise you on this decision, and help you find the attorney to make the necessary arrangements.     Once parents have made these decisions, they discuss the decisions with everyone concerned. When talking to their children, they often do not discuss their decisions outright. Instead, they tell the children gradually. They say, “What do you think it would be like living with your aunt?” Or they say, “If anything ever happened to me, your grandmother will look after you.” Or, “If I should get sick, your cousin will care for you for a while.” Whether people discuss this decision with their children gradually or outright, one way or another, they do let the children know who will take care of them. Children need this reassurance.     When talking to their relatives, they must be more forthright. This is not always easy: sometimes the people not chosen, especially relatives, are upset at the decision. Helen, though her sons are nearly grown, asked her father and stepmother to watch out for the boys and take them in when necessary. They all agreed. Helen also has a sister she did not choose, in truth because she trusted her father and stepmother more. But she did not want to hurt her sister, and so she gave her sister what she thought was a palatable reason for the decision: that the father and stepmother had more money, and that taking on two young men would thus be less of an imposition on them than on her.     In general, people find reasons for explaining their decisions that are not personal but are external to the person. In other words, they did not choose a certain person because he or she is more trustworthy, or has a better marriage, or a better temper, but because she or he has a better income, or better benefits, or a bigger house, or no other children, or children the same age.     When deciding what sort of legal arrangements to make between your children and their surrogate parents, get advice. The three options are custody, guardianship, or adoption. Custody means the person you choose has temporary responsibility for the child. A guardian has certain but not all parental rights. And adoption is the legal equivalent of biological parenthood.     You can choose an option and make the necessary arrangements at any time. Helen has a friend who has her second opportunistic illness and who arranged for her mother to legally adopt her young child; the mother is now that child’s legal parent. Many agencies offer advice on this subject: the state Department of Social Services, social workers, and such private social services as Catholic Charities, Jewish Family and Children’s Services, and Lutheran Social Services can help. In any case, to guard your rights as a parent, make any such arrangements only with the advice of your own lawyer.
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