Over 600,000 people are released from state and federal prisons every year. But unless they are prepared for life "on the outside" and get the support they need, chances are they will return to their former behaviors and possibly to prison. In addition, people with HIV have specific needs that must be addressed if they are going to make the transition successfully.
To try to understand this complex process, I interviewed Tracy Mack (pictured at right), Director of Transitional Services and HIV Testing at Exponents, a community-based organization in New York City.
When should discharge planning start?
If it starts when a person enters the system, the outcome will be better, since a lot of the process is based on trust. If I'm an inmate and I meet with a discharge planner, I have to believe that you care about me before I'm able to care about me. And even if I don't care about me, the fact that you care makes a difference. I might just be engaging in the process for you, but once I get involved in it, I'm going to stay.
Unfortunately, the system is now run by government agencies, and they don't have the staff to invest the time needed to facilitate that change. Behavior is one of the hardest things to change, and if you only give a person five to ten minutes, that's not enough. If there's a community-based organization working in the prison that calls them down twice a week, they can build a relationship. They can trust the process and we can give them the time they need to digest all the information, answer questions, address their fears, and distinguish what's factual from myths. Currently, the system is not set up to do that. They can't spend that quality time with people.
You have to take the time to get the person invested in the process.
Absolutely. They have to believe that their life is going to improve if they do things differently: "If I do this, then this may happen for me." Often you have to want things for them that they may not realize they want. It's often just about being there -- setting up another appointment, creating structure. Structure is needed. You don't want to act like a correctional officer, but you have to have boundaries in place. Let them know that there are certain things they have to do in order to receive services. You don't want to hit them in the head, though -- you have to be loose, but structured.
What role do former inmates play?
Sometimes we bring in former inmates to do discharge planning, and it makes a difference Some inmates think that unless you've been there, you can't possibly help them. If I say, "You can do this," they'll respond, "Yeah, right -- you tell everyone that." But once they know that the person they're sitting next to in a support group came from the same penitentiary, knew that same prison guard, lived in the same dorm, and once they got out they got their GED or even Masters degree and became a substance use counselor, they're like, "Wow -- I can do that too." And sometimes we're able to disclose, if it will help -- if you're HIV positive and I'm positive, I can share that.
You can't hit your head against a wall until a client is ready to take positive steps. You have to provide them with the support mechanisms that facilitate that change. And it's not going to happen overnight. Some people come out with a plan: "I'm sick and tired of this and I'm not going back in. I really want to get my act together and do the right thing." But others just aren't ready. And that's okay, as long as you let them know the consequences of not being ready.
For example, one of my first clients had a long history of incarceration and substance use. I was really green -- I wanted to save the world. I held his hand, I was present for him. But he just wasn't ready. He had other ideas. He stopped using drugs so he could fulfill his probation requirements, but as soon as he got off probation he went right back to using. I was crushed. I stuck with him, thought about it, and finally realized what the harm reduction process needs. I hadn't asked him what he wanted. Once I did, and found a way to fulfill the needs he articulated, he was able to make progress. Today, he has four years clean and hasn't been back to prison. But that took a good year and a half of work.
How long does follow-up need to continue?
It's open-ended. Some people know what they're going to do, they have things in mind, and they're insistent on attaining them. For others, it's a longer process. They may get sticky fingers -- they still don't get the concept of paying for things they want; they need instant gratification. Substance use is a major issue, as well as mental health. We've had people who've attended every one of the twelve programs we run. Others just want to use a few of our services. They may go in and out of our program, but we always invite them back. There's no close date.
So clients come to you with a range of issues -- not just their health.
Yes, and we know those issues. Of course, we believe that people with HIV should get into care as soon as possible. But if they're homeless, that might be the issue they need to address first. Or "I'm using drugs and I want to continue to use, so I can't commit to taking meds or going to a doctor regularly." Or "I live with my family and I can't start treatment because God knows they're going to find out somehow." Some of these problems are very delicate and take time to resolve. For example, the housing program in this city may send you to places that are not conducive to well-being. We try to find a place clients can feel good about.
You also have to work on a person's self-worth. If I don't feel good about myself, or if I have mental health issues, my HIV is irrelevant, especially if I'm not sick. Sometimes providers forget to ask clients, "What is it that you want?" I think if they did that more, rather than worrying about their agenda or their deliverables, they'd have better outcomes. If we engage them and invite them into the process, they'll be more apt to do what's needed. Now they can care about what they think and even if they say, "No, I don't want to see a doctor. I don't want to take meds. I still want to see you on a weekly basis, but right now I want adequate housing. I want the support groups and your training program, but I'm not ready to talk about being HIV positive." And I say, "That's okay. When you are ready to talk about your HIV, I'm here. And I may ask about it every time. And if you accept that, cool." I find if I take that approach, those walls will come down.
I recently went to a meeting with some bigwigs from the Department of Health. They wanted to change the whole process of how they deal with the mentally ill coming out of jail. All these wonderful, smart policymakers -- but not once did anyone say, "Let's ask the clients what they need."
I've had people who are eager for care when they're inside: "I want your services. I want to connect to a provider." But then they jump out of the transport van at a red light as they are being brought to me after release. That's probably because other issues were not addressed, and health care was not one of their priorities. "I want to get laid, I want to smoke, I want to shoot some dope." If they have issues other than their health, we have to address those other needs first.
But the current system is not set up for that. It doesn't provide that comfort level and that level of safety. There was a time when community-based organizations did the discharge planning, and I think that worked a whole lot better than the way it is today. Now you have Department of Health care coordinators. They make appointments for people, but they send them to random places. Why don't they ask the person where they want to go? They may have a provider or place they like. I think if community-based organizations were more involved in the discharge planning process, the rate of connection would be higher.
What do you do with clients who do get into care but have heard horror stories about HIV meds?
I had a client who was really ambivalent about the meds and I wound up sharing with him that I had just started them myself. And he counseled me! He walked me through the process and that enabled him to eventually go on the meds himself, because of that trust factor. He realized that everyone is different, that this is not 15 years ago, and that there are a lot of new meds with fewer side effects. I think because we talked about those things and read so much, he was able to base his decision on factual information. He wasn't being "informed" by misinformed people. We went through this together, and that made him feel safe. Both of us are still on the same meds and neither one of us had any side effects! It was a trust thing: If you could do it, I can do it. If it doesn't work, we can talk about the options, but let's do this together. You need to almost make a pact with people. It's "each one, teach one."
How does disclosure affect the process?
Some clients hide their HIV status while in prison, but they feel safe here so they disclose. And they worry that if they have to go to the city's HIV/AIDS Services Administration, they might see somebody they know. That can be a problem if they haven't disclosed to anyone outside of our program. Luckily, now we have clinics that treat a broad range of illnesses, so we don't have to send them to an HIV clinic.
I had a client the other day who was concerned about the family cat. He said, "I haven't told my family that I'm positive. How do I not mess with the litter box? They're going to question me." We tried to give him some options, because it's not about us telling him when to disclose. It's about helping him take care of himself. If we get them to care for themselves, that will allow them to care for other people, too.
What about people who don't tell their sex partners?
Sometimes I just want to say, "Man, do the right thing!" One of my clients was a sex worker. On the inside, he was having a lot of sex, just to pass the time. When he came out, he was sleeping with his wife and with other women, but he would not disclose. When I asked if he used condoms, he said it "depended". I tried to engage him -- not just about the disclosing part, not what he did while he was in prison, but, "Hey, how about using a condom for your own safety?" And I want to believe that he's gotten better with that -- when I've asked again, he says, "I'm doing good." But "good" means a lot of different things. He may use a condom three times out of five, but that's better than no times out of five.
And the earlier that conversation happens, the better. If there are peer programs in prison where they feel comfortable enough to talk, that's great. In one of our programs, Project START, we do that from the very beginning. We talk about risk reduction and being safe. So when they come out, they've heard this idea, they know how to protect themselves and others. Because once they get out, they may have a whole other agenda. In prison, we have a captive audience. They don't mind coming down for the counseling. But once they're out, they're going to do what they want to do. So if the safer sex counseling can happen prior to release, I certainly think the outcome will be better.
Is it easier for clients to talk to a peer as opposed to service providers?
The power division in correctional institutions is very clear. The staff doesn't care about anything except keeping order. So I can't act like I'm a correctional officer -- I'm not your parole officer. I have to make it clear that we're in this together. It's not about you against me or me against you. It's an "us" thing. Then the client says, "Wow, you're inviting me in this process?" You know, I've actually seen care plans done without the client. How do you create a care plan without the client being there, and expect them to sign off on it? That's insane! So I engage them from the very beginning and let them know this is a partnership -- it's not about me being in control and you following my lead. It's about, "What steps will you take to address your needs and how can I assist you?"
In prison, it's all about being manipulative, about telling people what they want to hear. It's about trying to be safe: "I don't want you to be mad at me." It's the "bad parent, good parent" thing -- always trying to please the person in power, to be good. Surprisingly, it's often the person who acts out and has problems that makes progress. I'm more concerned about the people who always do what they're supposed to do. How do you not act out in the process of growth? It has to be uncomfortable -- it is uncomfortable.
People who are institutionalized get so conditioned to say the right things. I've had clients who've been to every program in the city, so they know exactly what providers are going to ask and they know the right answer -- the answers that are going to meet their needs at that moment. It becomes a game: Who's going to blink first? So I have to be very clear: "Hey, I've been there, I know what's up." And in the end, the reality is that I work for you. Your provider, your doctor -- they work for you. You're empowered here. We try to facilitate that understanding.
A lot of clients come in with a poker face, with the intent to play the game. But once they get here, they realize they don't have to. They can be real and vulnerable and still get their needs met, and they won't be looked at as "less than". They can't be vulnerable and fearful in jail. They have to either wash people's clothes and act like a doormat or fight back and maybe get cut. They don't believe there's a happy medium. So they come to places like Exponents and begin to see things differently.
I had a client who said, "Wow, you laugh a lot in here." I said, "We do. We do a lot of work, but we laugh a whole lot more than not." And he kept coming back. I think it made a difference. At other places, it was all about, "Where's your Medicaid card? You must be here on this day at this time." But we have fun here, and people aren't used to that. You don't have to pretend here, and people aren't used to that. And once they know that, we can't get rid of them!
If you were king of NYC, how would you improve transition services?
That's a tall order! Well, first, I would make sure that housing was available for everyone who needed it, along with job training and placement services. Support groups would be part of the transition for addicts, alcoholics, people with HIV or HCV, and any other serious problems. I would almost mandate that, but I don't feel anyone should be forced to do anything. If you want something to work, the person has to buy into it. So let's say I'd make it a strongly recommended "condition" of release.
I would make community-based organizations a part of the discharge planning once again. Condoms would be distributed freely inside prisons. And inmates would receive the same standard of medical care that is expected on the outside, from doctors who are experienced in HIV and HCV. I would immediately end the color-coding of medical charts and create private spaces for clinic visits, to protect confidentiality. And I would end the segregation and ghettoization of people with HIV and HCV. That doesn't work -- education does. Finally, medicines would not be withheld due to cost, and would be provided for at least 30 days after discharge.
If we really took discharge planning seriously -- beginning it as soon as people enter the system and continuing it as long as needed after they are out -- we would have a real chance to make sure they never have to go through it again.
Mark Milano is the Editor of Achieve.