TALKING WITH INDIRA KOTVAL
Indira Kotval came to Baltimore to study at Johns Hopkins after studying and practicing social work in Bombay, India. She earned her Master’s Degree in Public Health in 1984. After working as an epidemiologist at the state of Maryland AIDS administration and a researcher at Johns Hopkins, she returned to the direct practice of social work in 1989 as Director of Case Management for HERO, the AIDS services agency in Baltimore. Mrs. Kotval is a licensed social worker who continues in senior management at HERO. She is a creative administrator who has successfully found resources for her agency and its clients.
Mrs. Kotval became involved with issues surrounding AIDS early on.
“I used to work with the homeless people in Bombay… I worked with the medical component of the agency and one of the main problems was TB (tuberculosis) and STDs (sexually transmitted diseases). We also had a lot of problems with leprosy. With leprosy it can be cured easily if people come forward and get diagnosed early but people wouldn’t come forward because of the stigma. I was fascinated when I came to Hopkins and the HIV test and just come out in 1983 and everyone was trying hard to get people into treatment. People didn’t want to come forward because the stigma of being HIV positive was so strong and so the social aspects really fascinated me… I was going to go into international health but I switched to Public Health.”
HERO started in 1983 as the first AIDS agency in Baltimore.
“While studying at Hopkins I decided to volunteer with HERO, and I did a special study analyzing the calls [of people needing help] — who called and why they called. Actually, the director of HERO and I gave a presentation at Hopkins. When I discovered that I really wanted to get back to social work I got a job here as director of case management, which is one of our departments. I then moved to the position of program director and then to testing and detection… I now oversee all the program management aspects of HERO, I write grants for programs, and then I do all of the reporting for the programs for which we have federal and local grants.”
The Ryan White ACT provides substantial funding to service providers. Understanding the Grant process is a critical skill.
“Our major grant funding is from Ryan White and HOPWA (Housing Opportunities for People with AIDS), and we also get HUD (Federal Housing and Urban Development Department). Money is given to each area or geographic location based on the number of AIDS clients or patients in that area. There is a planning council called the Ryan White Planning Council consisting of members of the community and they decide how to allocate the money to different areas at a planning meeting each August. So, for instance, they decide that medical treatment should get 30% of the funds, fetal services need 10%, and case management 15%. Once that is done then the city health department, who is the administrator of the [Ryan White] funds, will put out requests for proposals and all the agencies apply. We [HERO] got about 14 Ryan While grants and I write those grants… Roughly a fifth of our money comes from Ryan White… The planning council is divided into sub-committees and I am the chair of the support services sub-committee. We look at all the other grants that are non-medical — housing, financial assistance, etc. The committees meet once a month.
When HERO was started we were mostly a gay agency, because at that time most of the people infected were gay. We started as the first AIDS agency in the city and there was no funding so we started by volunteering and helping people with a buddy system. We got the community involved — the AIDS walk and a couple of other fundraisers. And basically the money came from the gay community and it was used for financial assistance — to help people with medications.
It became very clear when I came here [1989] there was a great need for financial assistance and by then a much poorer clientele was coming in and most of them were abusing substances and had no money. We started looking around for money and that is when I first heard of the Ryan White funds. I think we got the first financial assistance grant in 1991. By 1993 we had funding for all of our programs…
Ryan White does not give any money toward prevention. It is only for HIV positive clients and it is always a last resort. For instance, funds can’t be used to pay for subsidized or long-term housing, only for help in the event of eviction or short-term transition housing. When we apply for financial assistance money we have to write in our grant that one client will not be served more than once a year and a maximum amount of money that one person can get. That’s the Care Act and how it works.”
The needs of persons with HIV or AIDS have changed since the early years of the epidemic.
“The needs are very different, one of the main things back then AZT had just come out as the one medication and it was very expensive. Now there are a lot of state programs that help people afford drugs that they normally wouldn’t be able to afford…What we do now through our financial assistance program is to pay for their medication while we are working on getting them into a program for their meds… People used to not see any reason for getting tested because there was little help so they would come to us and medical agencies when they were really sick and then from the time they were sick until the time that they died it might be 2 to 6 months. So it was always very intensive service, usually trying to keep them comfortable and aiding with their financial problems because they were people who had jobs in those days and then suddenly they got sick. They couldn’t work or suddenly they lost their jobs because people found out that they had AIDS.
Initially a lot of the Ryan White money went to hospice care. No hardly any of the money goes to hospice. The medical agencies and hospitals hospitalized patients more frequently and for a much longer time than they do now. Now the AIDS wards are almost empty. People go in for a short stay and out they go…
We have so many homeless people now that we didn’t have earlier, housing has become a huge issue. So the needs have changed. People are much poorer and so they just can’t afford to pay rent. Over the years HERO has become much more of a social agency than a specific AIDS agency. We are looking after their social needs. Their HIV needs are often not their priority, not what they are interested in.
A lot of people come to us for substance abuse care because what is the point of trying to help them with medications and so on if they are going to be out using drugs and being sick. There is no way you can manage your HIV meds when you are trying to get drugs. So the need becomes to get them into drug treatment first. We now have a whole group of prison inmates that are coming out. In prison some were already infected and some got infected in the prison and then they are released and they are told “go to HERO.” They have nothing.
In spite of many funding streams there are many service gaps.
“I look at the gaps in our services. We have different sources of funding and I look at this and say, for instance, money should go to our resource center. The center has homeless clients who come in and who are all HIV-positive. The center has lockers and showers and voicemail so they can make phone calls and get messages and a lot of clients stay for the day…We find that there are a lot of people who are mentally ill, who won’t come to our mental health department or anybody else’s in the city for additional mental health treatment. They just won’t come. First of all they won’t even say they are mentally ill. They may even be psychotic. So what we want to do is provide non-traditional mental health, meaning have psychiatrists and mental health practitioners working at the center just chatting with people so hopefully they can have them engaged in some way.
With the population of homeless people it is very difficult for them to take the new medications. With the new medications, especially the protein inhibitors, if you don’t take the dosage in the way you are meant to you become immune to the medications and then they don’t work anymore. So physicians are reluctant to give these expensive medications to some people. You also get nausea and vomiting and various reactions to the meds, so you can imagine a homeless person walking around with a bag having to remember that he had to take his medicine, having a place to sit down, having a glass of water — some have to taken with food — some on an empty stomach. It is almost nearly impossible. So most are non-adherent or non-compliant, or they mix up the medications or forget, or they can’t read and write. So that is another thing we do — a lot of education with our clients on how to take their medication. We also leave notes on their lockers, reminders. We try to get them into a schedule.
We just got a prison grant through HOPWA. It is a federal grant for a social worker to go into the prison and work with the inmates 6 months before discharge. This is so that we can start setting up appointments, getting their records ahead of time, working with them so that when they are released they can come back and see the social worker they saw while in prison. So we are looking at different ways to fill those gaps.”