Women and Children with HIV

An Interview with Andrea Carr, President of the Board of Directors Families' and Children's AIDS Network of Chicago

What do you think a woman with children should do when she finds out she is HIV+?

I'm assuming she probably finds out while she is in contact with medical people. Therefore they should provide counseling for her. Although, whatever they provide in the form of counseling may not be terribly extensive.

She may also want to consider testing her child if she hasn't already. She should find a major multi-service AIDS center--major places in Chicago include the Cook County Hospital's Women and Children's HIV program, Northwestern University Medical Center, Children's Memorial Hospital, The University of Illinois at Chicago, and Wyler's Children's Hospital.

However, although the medical community can do many things to help, assuming the woman is healthy, she may be interested in emotional support--the Chicago Women's AIDS Project has programs for women and for adolescents . The organization Test Positive Aware provides all kinds of support groups. They also have a resource library and publish an up-to-date directory of resources and services available in the Chicago area for people with HIV.

For those living in suburban Cook county there is an organization called Community Response which does case management, and housing as well as support services. Erie Family Health Clinic is also important since they provide medical and other services in the rather underserved West Side of Chicago.

Is there any way of ascertaining which provider offers the best care?

I think they all have good reputations, the choice is really where people live and what sort of medical insurance they have. Wyler's Children's Hospital serves the South side, The University of Illinois at Chicago and Cook County Hospital's Women and Children's HIV program serve the West Side and some of South Side. Northwestern serves the North Side.

Is it a good idea to tell your relatives about your HIV status or about your children's HIV status?

Most of the people involved in providing support for people with HIV would caution people to do it only when they are feeling very comfortable themselves. A book put out by the HIVCo (The HIV Coalition) called Learning to Live with HIV features a chapter discussing this decision and outlining some of the things that people should consider. For some people it may be an easy decision, for others it may not be. It really depends on who you are and what kind of relationship you have with your family.

What if people do reject you? Is there anything you can do to perhaps educate them?

You can certainly bring some education to people. But I don't think you can control others who might reject you. You can educate others some, to make them less fearful. Some of the research I've done shows us that there may be a small number of people who will reject HIV+ people, but an equal number of people will be supportive when they learn that someone is HIV+.

Is it legally necessary to tell your child's school that your child is HIV+?

That's something that's an issue here in Chicago. We have a principal notification act saying that principals must be notified. Some people feel this requirement is not necessary.

Must you tell the parents of your children's friends?

This is a decision that should not be rushed into. A family should consider this carefully. Perhaps they can speak to others who had to make this decision. In some instances it might be fine. It really depends on the relationships that people have established. Also the degree to which their friends are well-educated about HIV could be a factor. I think that it is an individual decision.

Are there any legal documents recommended to file when someone discovers she or he is HIV+?

My sense is that when most people first learn about their HIV status they are pretty shocked. This is probably not the best time to make major decisions. It may be better to wait and be more considered about this sort of thing. Service providers often feel that parents in particular experience enough denial that they don't prepare a will or make guardianship plans for their children. There are other things that are difficult for most parents to face--like permanency planning for their children.

Parents facing a serious illness eventually will benefit from making contingency plans for the care of their children. One new option in Illinois and a few other states is Stand-by Guardianship. It's new legislation and FCAN (The Families' and Children's AIDS Network) was instrumental in bringing this into existence. What stand-by guardianship provides is a legal tool for providing guardianship for children that could go into effect for a limited time, for example if a parent is temporarily hospitalized. It allows parents to name a legal guardian for a short period of time. In fact, we're planning a conference on permanency planning in Spring 1996 in Chicago.

Where can you get legal help for low or minimal cost?

We have several groups in Chicago, although many have been hit hard with funding cuts. We have several clinics that offer services for those with low income. We have one service provider that specializes in people with HIV called AIDS Legal Council. The Legal Assistance Foundation of Chicago and Chicago Volunteer Legal Services Foundation can also be helpful and there is an American Civil Liberties Union branch here, though they tend to deal with constitutional issues and precedent-setting cases.

Why does everyone join support groups?

I don't think everybody does. I think HIV+ women in particular are a pretty isolated group, especially in outlying areas of Chicago and in downstate Illinois. Support groups give people the opportunity to talk with people who may have dealt with problems that they may be having. Support groups can help people feel less alone. I have a sense that the people who are connected to a support group value the support they are getting. Those who are connected also have a better sense of what other services are available. I see it as valuable at several levels. Those who are connected tend to be much more positive about living with HIV than those who are not connected.

Are there children's support groups?

I know that there have been some in the Chicago area. They've tried it for adolescents. What's more typical here is that some of the women's support groups have a children's group while the women run their support group.

What exactly does the Families' and Children's AIDS Network (FCAN) do?

FCAN is a network of organizations which provide services for HIV-affected women, children, and families, and individuals who are interested in our mission. We are currently focusing on advocacy aimed at identifying and eliminating systemic barriers to services for families affected by HIV.

In the past FCAN has done a lot to stimulate needed services--we don't provide direct service, but we do identify the needs and then initiate what is needed to have the needed services come into being. For instance, FCAN, a few years ago determined that respite care was a need for many families. We took the lead in gathering together the programs that might make such care available, and from that effort Chicago now has Ascension Respite Care Center, which provides both in-home and center-based respite care for families when the families need child care in order to visit a doctor or clinic, or just for relief from the stresses of living with HIV. It's run by Chase House, a local provider of day care for low income families.

FCAN has also been a major force and contributor to several other new programs in Chicago for families dealing with HIV. Camp Getaway is a camp for families with HIV. Those who go find it a rewarding experience. It's a week long program with outdoor activities and a safe environment for families to get away and also interact with others who are dealing with HIV.

One of the other programs that we were instrumental in initiating is a program called Second Family and it is lodged with Lutheran Social Services. It is a program that tries to identify families that will become future families for kids whose parents may die of AIDS. Second Family tries to get the parents together with the prospective adoptive or foster parents so there will be a less traumatic transition for kids. This program in one of a continuum of services that addresses permanency needs for children affected by HIV.

Is there any book that you've come across that gives a good introduction to HIV?

There are so many now. Most are written for or by gay men and so most are very oriented toward gay men. But we are beginning to have a little more literature geared toward women. I think most of the literature oriented toward women and families is found in newsletters and other local outlets, and, of course, there is some in academic journals.