Forum; AIDS Services of Austin

heart. He happened to be the first AIDS patient that hospital had had and the amount of discrimination and rejection that we experienced there was horrible. This week on Form, support services for AIDS victims and families. From the Center for Telecommunication Services, the University of Texas at Austin, welcome to Forum, I'm Olive Graham. I'm very proud of our community's reaction and where we're going with is who we are at the

crest. Our caseload is going to continue to double each year probably for the next several years. There's always going to be the need for new people, new volunteers, wherever a person is. Here's this program. I would encourage them to get in contact with their local AIDS Service Providing Group. If there's not one in their community, the one in the next nearest largest town because there may be someone who's diagnosed with AIDS in their community. If they're in the suburb of some large city or in a rural area and they may be the person who can do some of those kinds of services that are very important. You're just being a friend, doing an errand for someone. Glenn Maxie, Vice Chair of AIDS Services of Austin. Today, Forum features a panel discussion that is directed toward one of the crucial health issues currently facing our society. Our guests are Glenn Maxie, who in addition to serving as Vice

Chair of AIDS Services of Austin is also consultant to the Texas AIDS Network and he also serves on the Public Policy Council of the AIDS Action Council. Steve Hosford is the Director of Client Services of AIDS Services of Austin. Nora Lorena is a member of the board of Directors of AIDS Services of Austin, serves as one of their volunteers and is the mother of a son, Stuart, who died of AIDS in 1985. In seeking to find out what kinds of support are available as AIDS becomes more and more a part of our public health picture, our discussion began with Glenn Maxie describing the evolution of the AIDS Services of Austin. In Austin, our community group began as a service of a gay and has been counseling center after a year or so as a service of that organization and as the disease began to move out of those communities and the concern, especially the education aspect of our community project, began to broaden to the community at large. It became necessary for us to become an independent

nonprofit organization, a separate service agency. That's been in the early days, sort of the history of most AIDS service providers around the country began as services in the gay community because that was the impact or the community that was impacted most heavily. Around the country there are now service providers being formed across Texas, I know of five or six right now, they're in the formation stages. They're all beginning with a broad base of community support coming from public health people, local health departments, including higher risk group members, you know, a really community-based group. So that's sort of where we are now in the formation of community-based groups. They're approximately 18 community-based AIDS service providers in the state of Texas now. There are, you know, in the hundreds across the country ranging from tremendously large projects in San Francisco and Los Angeles, Houston, Dallas, those kinds of organizations all the way down to sort of the mom and pop

kind of operations of four or five volunteers getting together in a community such as cabling Texas to deal with the problem in that community. The statistics in Texas have been lagging behind either coast. Are they catching up? Well, we're at the beginning of the curve, so to speak. As of mid-October nationally, there had been approximately 42,000 people diagnosed with AIDS. That's a very misleading figure that when you look at it because those are people who have a full diagnosis of a clinical definition as defined by the Centers for Disease Control. For every person with AIDS, there's an estimate that there's five to ten people who have age-related complex, maybe as many as 50 to 100, who may have just the infection and be asymptomatic. So it's truly sort of an iceberg kind of thing. What we've seen as far as the numbers in Austin or in Texas are throughout the central part of the country, is that there is a lag from the coast.

The disease was first recognized in New York and on the west coast, San Francisco and Los Angeles. It's sort of like everything else that happens in this country, sort of me, is from the coast inward. We are beginning to see the crest of diagnosed cases in Texas now, and because this disease has such a long period of latency, some may be infected for several years before they have any medical signs or any symptoms, we're just now seeing that crest of numbers of people who were infected three or four years ago, or as much as five years ago. When you look at the communities like in San Francisco, they pretty much are from the latest statistics or sort of reached a plateau, because we're hitting now the situation of people who were infected before we knew what the infectious agent was or how this disease was transmitted. Hopefully our education programs are going to cause those numbers to flatten out and if we're lucky and if we continue our very proactive educational program,

those numbers just start dropping. But this is not like a disease that you can treat with penicillin or something and walk out the door because of that latency period. We will still see cases of people who were infected before we knew that it was even caused by bloodborne virus. That's the case that we've seen now of most of your transfusion related people who are now being diagnosed. People get afraid of having blood transfusion. Well, that should not be the case. Those people, almost totally, are people who were infected before 1985, before we had a test for the virus or for the antibiotic to the virus and before we knew that it was bloodborne. Those recent seders of Lebanon statistics referred to infants, but actually these are children who are seven or eight years old by now, right? Correct. That study was being done by looking at the blood samples that that hospital, which had very good record keeping and evidently kept blood samples of most of the infants that came through that hospital,

are now in transfusion related people. And they're studying how the disease was spread through transfusions specifically and they are talking and the press in recent days has talked about the seders study of infants that those children are, in many cases, five, six years old now. Steve, let me ask you, what sorts of specific client services does AIDS Services have lost in delivery? We currently offer support groups for people diagnosed. Our client population is defined by people with AIDS or AIDS related complex and we have support groups for them. We also have support groups for their significant others, which are friends, family members, partners, anyone in that support network around the client. We also have a parent support group, which is specifically designed to hook up parents and let the parents network for support.

We also operate a support group for our volunteers that are providing the services to the clients. In addition to the support groups, we have another emotional support program called the Buddy Program in which volunteers go through a 20-hour training session to learn the tools necessary to deal and provide the emotional support to a person that's facing a potentially terminal illness. And then they're assigned on a one-on-one basis usually to assist that person. They become like the best friend, but they're people that know what resources are available, who to contact when an individual needs a specific type of service. Another program that we provide is called the helper program in which the volunteers will go out and do basically one-time tasks, such as cook meals, clean house, provide transportation, run errands, any type of task-oriented functions. We operate a food bank to supplement the food for the clients since the majority of our clients are not able to work or have signed up on social security

or receiving food stamps, we try to supplement that. We are a member of the Capital Area Food Bank, which is a nonprofit food organization here in Austin, in which we can go and purchase bulk food, but we also rely on the community to provide specific donations to us. We provide direct emergency assistance, financial assistance to clients. One of the problems that happens when a person is diagnosed and they're no longer able to work, and they sign up for social security. It can be anywhere from a four to six to eight week time lapse before they receive their first check. Meanwhile, rinse, do bills or do so we'll step in and help the person get through that initial time period. Let me get a clearer picture of the clientele, because as you describe many of these needs, I'm sure you're talking about people who although diagnosed are not necessarily ill. We see the whole spectrum in order for an individual to qualify, for instance,

to social security, they must be disabled. And AIDS diagnosis, the federal government has declared AIDS disability. So if an individual has been diagnosed with AIDS, which requires a specific opportunistic infection diagnosis, then they do qualify for social security and begin receiving those benefits. A person with age-related complex or arc can actually be as ill as a person with AIDS, but the physicians cannot find a specific opportunistic infection. They may have rapid weight loss, they may be experiencing the extreme fatigue and not able to get out of bed. They may be having drenching night sweats, spiking fevers, and the physician cannot explain why, other than HIV or the human immunodeficiency virus activity. And those people, it is very difficult to document that medically and get them determined, disabled and applied, and signed up on social security.

Other people with age-related complex will come to us for services to help plan for the future, to learn as much information about the disease process, to begin making provisions, whether it's taking care of wheels and powers of attorneys and stuff. And also for the emotional support. The emotional side is one of our greatest weapons against the virus. The education and learning is much about the virus feeling comfortable with it, alleviating the stress because stress does have a direct impact on the immune system, and that's what the virus is attacking. So if we can remove all other obstacles that may be hampering the immune system, it strengthens that individual's chances of fighting off the disease or keeping it in check and not progressing on. What size staff do you have to develop all of this? We currently have three full-time staff members in the office. I have been the only staff member.

We just recently received additional staffing support of a case manager and a client service volunteer coordinator to begin working more directly with the volunteers and providing the services that the volunteers are providing. The case manager will be focusing on the intake of a new client and writing service plans for the individual, making sure that that individual understands what services are available, will be providing crisis intervention techniques, as far as helping that person see down the line what resources are available, talk about what possibly could happen if it happens, have a plan in action to take care of it. Sounds like you need psychologists, psychiatrists, lawyers. We do have that on a volunteer basis. We've had an excellent response from the community here in Austin of lawyers donating their services to do wills, powers of attorney directives to physicians,

dealing with discrimination cases, whether it's employment or housing, helping the clients in bankruptcy matters, the whole spectrum and the vast majority of it is done pro bono or free to the client. We have psychologists that are donating their services, they operate our support groups. We can make individual referrals to individual counselors or our agencies because the counselors understand that the clients that we're serving, the vast majority are financially destitute and they're relying on social security and that may be their only source of income. Let me ask Mrs. Lorina, what kinds of services were you able to avail yourself of when your son was suffering? My son died two years ago and he lived in Washington. We brought him back to Austin and we were not familiar with the services that ASA was providing. So we worked without the help of ASA. I realized now how much easier and how much more helpful it would have been

had we known or had we taken the trouble to find out what services were available here in Austin. So you suffered alone then? Yes and at that time I knew of no other mother whose son was dying of AIDS and mothers and I'm sure fathers have a unique perspective. I think perhaps their feelings may differ slightly from other significant others being as you bore this child, he is your son. And there are feelings that you want to share so badly with someone who understands because they've been there or are there too. And I didn't know of anyone that I could talk to at that level. After my son died and I heard of other boys who are women who are dying of AIDS I got in contact with their mothers and I find that I am now in contact

with quite a large number of mothers who have sons who are dying of or have died of AIDS. Apparently it's helpful to them and I find it's extremely helpful to me even though my son died almost two years ago. What is it that they need first? To break through the denial it is not in frequent for a mother or father to learn simultaneously that their son is gay and that their son has AIDS. For those who accept the totally the fact that their son is gay first and then come down, the son comes down with the diagnosis of AIDS it is incredibly painful as you can imagine. But perhaps a little less traumatic than learning that your son is gay and that he has AIDS simultaneously.

I've one can assimilate each thing separately, perhaps it's a little easier, I don't know. How long did your son live after his diagnosis? 15 months which seems to be the average. Some are a little longer, some are a little less, but 15 months seems to be the average. Before AZT I believe it's longer now. So parents do have some time to deal with that if they're so inclined. Is there ever just an impossibility of their settling on what the situation really is? For me and for other mothers who I've spoken to there is a great deal of anger towards God. Why my son? Also the thought why couldn't it happen to me? I've lived most of my life. Why somebody so young? This is something that's very hard to work through. There is no answer. Why? To sit by or stand by? Your son watching him slowly,

fade away, he is an extremely painful thing. The person gets more and more ill, weaker, thinner, and from a robust, healthy, active, young person, you watch your son become emaciated, and weak, and helpless, and so vulnerable. And it's very painful. Are the parents up to continue to bond together after the child has died? Do they still need the support? I'm finding that friends that I have made because of an illness of AIDS in the family have remained friends. We remain close even though it's cross-country. There's a lot of phone calls and support that goes on. I'm also finding that those who have lost children to AIDS are very highly motivated to become involved to help other families that have AIDS. Are you one of Steve's volunteers?

Yes. What are some of the things that you do to help? Again, most of my work has been with supporting other parents, but what do you actually do? Invite them over to my house for retreats, for rest. Visit with them when they are emotionally low, and this happens with a fairly fast rate of frequency. As to have on the board, that's about it. So you have to do as much with lone people who are lonely or who would enjoy a visit from a friend in the hospital. Are there a specific number who are hospitalized in Austin right now that form a core that needs attention, Steve? Oh, there's approximately five people that I'm aware of that are in the hospital right now. One of our main goals is to try to get the people out of the hospital and back into the home environment as quickly as possible.

Very rarely do we run across someone who absolutely has no support network. Those are the people that we try to concentrate the volunteers in as quickly as possible to provide that emotional support. The ones that are currently in the hospital, if they have a buddy assignment, the buddies will spend time with them in the hospital. If they don't have a buddy assignment, then we can supplement with helpers to come by and visit. We also have started a new program called the sponsor program in that the clients themselves begin helping newly diagnosed clients. It's been tremendously beneficial to a newly diagnosed person who is just literally terrified. It doesn't know what is going to come next. They feel like they're going to die at that point in time because they feel so bad to have an individual who was diagnosed two months ago, walking the room, looks perfectly healthy, and to say I was there and then basically in the same bed two months ago, this will pass.

And what a difference that makes. I think one of the things that we've pointed up today is how effective these community-based groups, they're very young. There's a lot of growing pains. Our case load at ASA is here and in this community alone is growing by 15 or so cases per month. We have over 400 volunteers active at this point in time. The cost of medical care alone for a person with AIDS in Austin, Texas is estimated about $100,000 from diagnosis to death for medical care. If agencies like AIDS Services of Austin or other AIDS service providers around the country fulfill their mission of providing support networks so that people can get out of acute care facilities seen where they can get home health care and get people back into their homes where they are more emotionally comfortable.

It also is going to not only be very positive for the person who has the diagnosis but in the long term, if we look at the cold hard side of the financial end of this, it's going to save a lot to our public policy, our public sector, in health care, cost and things like that. I think that it's almost an amazing kind of thing that's occurred across this country with almost totally a volunteer effort. Here in Austin, AIDS Services of Austin is providing hundreds and hundreds of thousands of hours of time dealing with people who are diagnosed. And we've done that up until this point with a budget of less than $50,000 or right at $50,000 of public money and everything else raised through private donations. We're able to leverage a very small amount of public money into a tremendous amount of public service if AIDS Services of Austin was not here. Those services or many of them would still have to be provided through our local medical assistance program through our city county hospital through those kinds of public agencies

and the taxpayers of Austin, I think, would be revolting at this point in time because it is very expensive illness. I think that's why one of the things I'm most proud of is how this community has really pulled together to solve a problem not only for our clients who are number one priority of the people sitting here today as volunteers of ASA, but also as something that's very positive for this community. Are you getting city funding, grant funding, local foundations, national groups? How do you get that? At this point in time, we are funded for the past year through a grant in the Austin Travis County Health Department, which is city and county funding, approximately $55,000 a year, which we use to employ our director of client services and our director of education and some support many for the organization, printing, postage, and things like that.

We have a whole other segment of our project that we've not talked about here that deals with education and information referral line 12 hours a day. It's operated by volunteers, speakers of Bureau that speaks to all kinds of community groups. We have all those kinds of services also. As we talked earlier, we are getting increased funding this next year from the local granting bodies, the health department to the city and the county for case management because they see how effective and cost effective that's going to be for us to do a good case management. We are funding for eight service providers is just now coming through public sectors. There's most of the money up until this year had been federal money that had come through the Centers for Disease Control through grants. We've gotten very little of that because it was just so little of it coming from the Reagan administration. The state of Texas until this year had not spent a single dollar on any kind of eight services or education. That money is just now three and a half million dollar appropriation was made

during the last session of legislature. That money is just now becoming available through grants and eight services of Austin has done two major grant proposals there, one in the area of education and one in the area of client services. We are certainly going after the public money that's now available to deal with eight education and client services. We're also applying through a number of private foundations now for we have one grant that's pending application that deals with doing an AIDS in the workplace project in Austin to educate small employers about public policy or employment policy that they need to know about. We have a grant or we're about to begin working on a grant for a cycle social needs to a private foundation. So we're moving in that direction. We're like many other eight service providers. There are first couple of years. It was basically keep our head above water and figure out what needed to be done. Now that we're sort of two or three years into this crisis in Austin, Texas,

we have a pretty good blueprint of where we need to go and now it's just figuring out how to get there and how to pay for it. Mrs. Mulan, when your son was diagnosed and when he left Washington, I assume that any kinds of insurance, health insurance that he might have had ceased to help him. Stuart worked very briefly after he was diagnosed at the Library of Congress and they did have a health insurance plan. However, it specified that the client go to one specific hospital. He happened to be the first AIDS patient that hospital had had and the amount of discrimination and rejection that we experienced there was horrible when I looked back on it. What year was this? 85. We had to be masked, gowned.

I could not touch my son unless I had on rubber gloves. I was told that I could not take a radio into the room or if I did, that I could not take it out because it would be covered with germs. Everything that went in or out of the room was triple red bagged and grabbed at a distance with forceps. It was really a bad scene. Since then, through the education efforts of people all over the country, I'm sure this kind of treatment has been eliminated but it was very traumatic and frightening for the patient and for his family. People have asked time and time again was a typical AIDS patient. There is no such thing. Each person is an individual and as far as prognosis, it's up to the individual. There's so much that's still unknown about the AIDS virus and how it affects one person and not another, why it causes illness and one person and not another. There's just no way of predicting what's going to happen.

From the education side and client services is just make the public aware of what services are available and how to best plan for that and how to take care of yourself. That's the key. Glenn Maxie, Steve Hossford and Nora Lorena represented AIDS Services of Austin. If you have a comment or wish to purchase a cassette copy of this program, write to Forum, the Center for Telecommunication Services, the University of Texas at Austin, 78712. Our technical producer is David Alvarez. Our production assistant is Christine Draver, your producer and host, Olive Graham. Forum is produced and distributed by the Center for Telecommunication Services, the University of Texas at Austin and is not necessarily reflect the views of the University of Texas at Austin or this station.

This is the Longhorn Radio Network.