Meeting the needs of people with HIV released from state prisons is challenging to say the least, and becomes further complicated when they face other health complications such as chronic hepatitis C, mental illness, and chemical dependency.
An estimated 5,500* men and women with HIV/AIDS are currently doing time in New York State prisons, and almost all of them will be released to their communities before the end of their sentences. Assuring a successful transition depends not only on close interaction among service agencies, but also on the role that released people play when trying to navigate various systems and services such as parole, drug treatment programs, hospitals, city and federal agencies, housing, child support, etc. Service agencies that successfully assist people with their discharge planning are those that collaborate with each other, empower their clients by educating them about their rights and responsibilities and, most importantly, work with clients on such issues as self-disclosure, accepting one's health status, and the other problems that released people often don't want to face.
Preparing for community re-entry is a process that includes several steps. Typically in New York State, the first step is performed by a transitional or discharge planner from a service agency funded under the Criminal Justice Initiative (CJI) of the AIDS Institute. One of the first steps that HIV-positive people in prison can take is to connect with the CJI provider agency in their facility, via the office of Transitional Services. They can do this by writing to the CJI provider directly, by contacting the facility's PACE office (Prisoners AIDS Counseling and Education), or by calling the NYS HIV Prison Hotline (see "Resources").
"It is a lot easier to admit that you have problems with alcohol or drugs than HIV or mental illness. I never told anyone that I had HIV and that I had been diagnosed as a schizophrenic when I was 14 years old. It was at Fishkill that I received treatment for the first time -- I couldn't believe that those voices that haunted me for years could go away."
Incarcerated men and women who participate in HIV activities while in prison (support groups, outreach, peer counseling, trainings, etc.), and who also confront any drug addiction or mental illness, may stand a better chance of implementing their release plan and succeeding in the community. They are often more likely to follow up with the transitional planning agreed to prior to their release, and they can carry their strong advocacy skills to their communities, where they can become powerful role models. On the other hand, most people in prison who have not disclosed their HIV status find themselves at a loss. Not only do they lack basic information about HIV/AIDS, but they are also not part of any supportive community. Upon release, a good number of them want to remain invisible. They attend only programs that are mandated, shy away from talking about personal issues (such as the fear of disclosing their HIV status), and have difficulty accepting their medical condition.
Once a prisoner contacts the CJI provider in his or her facility, the next step is to coordinate with the Facility Parole Officer (FPO) and the Office of Mental Health (OMH) in the facility before approaching the Medical Office. It is always good to know what each party is doing in order to avoid duplication of services. The FPO should ensure that all personal documents (birth certificates, Social Security cards) are in place before the release date. The OMH is responsible for documenting the diagnoses, treatments and services received during incarceration. Many outside providers may not fully understand that FPOs and OMH staff inside a correctional facility sometimes encounter the same obstacles and frustrations that outside agencies face when they try to obtain important documents like the Comprehensive Medical Summary (CMS) from an institution's medical office.
A CMS should include diagnoses (including opportunistic infections, or OIs), CD4 counts, viral load tests, and a list of prescribed medications. But getting a copy of it can be an ordeal. Obstacles include working with an understaffed Medical Office, having an incomplete "HIV Release of Confidential Information" form, or receiving a CMS that is not signed by the appropriate medical staff. And often when it is obtained it may lack key information, such as OIs diagnosed prior to incarceration. One of the most challenging situations occurs when inmates are transferred from one facility to another and the medical records do not accompany them in a timely fashion. When this happens there are two options: contact the medical office from the prison where s/he was discharged, or wait until the Field Parole Officer (FPO), who supervises the person on parole after release, receives the person's chart.
"Find me a decent place to live, not a shelter or a drug-infested SRO. Find me a place where I can lay my head, adhere to my HIV treatment, where I can start a new life and reunite with my family."
Housing is the single most important service in discharge planning. Not only does it increase the chances of succeeding in an often hostile environment, but it makes the transition smoother. It is well known among providers who serve ex-offenders that individuals released to shelters have a lower chance of succeeding than those who end up in more structured and private settings.
Another important part of transitional planning is to know, as early on as possible, the criminal background of the person being released and to make sure s/he understands all parole stipulations. For example, a person needs approval by the local parole office regarding where s/he plans to live. A discharge planner could have a "perfect" service plan but a parole officer may not agree to it if the client has a history of criminal activities in the proposed neighborhood. Parole officers can make concessions in certain cases, but when it comes to violent offenders or sex offenders they usually will not.
"Women face problems that make family reunification a lot harder. Before we are approved to receive our children we must complete a parenting skills program that meets the court's stipulation. In addition, we are expected to find appropriate housing, which means separate bedrooms for your children. Sometimes finding a large family unit becomes a full-time job -- it may not be so easy to find what you need for your children."
Service providers that work with ex-offenders know that women coming back from prison face a specific set of issues that are not necessarily addressed in traditional supportive settings. The interrelationship between domestic violence, sexual abuse, emotional abuse and chemical dependency is rarely addressed in a well-integrated fashion. While many programs offer groups that touch upon some of these issues, they often lack the clinical depth and qualified personnel who are sensitive to the issues of women returning to their families after several years of incarceration. Reuniting with their children is often one of their highest priorities, but many women have lost their parental rights while they were incarcerated. Finding an agency or a program that assists with child custody, court advocacy and parenting skills is paramount.
"I was in and out of prison for years. I went to substance abuse programs every time I came out. I stayed clean for a while, but I guess I never realized the magnitude of my problems. It took me years to address and understand the real issues behind my addiction."
It is equally important to complete a thorough assessment of the person's history of drug use and mental health needs, to determine if the client will be able to attend programs that meet their needs and satisfy the conditions of release. Many people recently released are mentally ill and some services may not be suitable for them. Also, there are some programs that may not meet parole qualifications -- some parole officers buy into a harm reduction model, while others adhere strictly to law enforcement requirements of sobriety and a drug-free lifestyle. And if a PO does subscribe to a harm reduction model, the random drug testing often required of those on parole could negate any such program. In other words, transitional planning is not just making appointments for people -- it is a process that prioritizes what is in their best interests. Many substance abuse programs offer groups that touch upon some of these issues in the form of counseling, support groups, etc.; however, they may lack clinical depth and more qualified personnel who are sensitive to issues of women reuniting with their families after several years of incarceration.
"This was life's ultimate challenge for me -- this was the moment I had dreamed of for years. But the weeks before my release were as stressful as the three parole boards I went through."
Returning to one's community after doing five, ten, or more years in a state facility, having an HIV/AIDS diagnosis, perhaps with chronic hepatitis C and/or a mental disorder, is a very scary process for anyone coming out of prison. As one client said, even the best transitional service plan could fail overnight when someone ends up in the street without being emotionally prepared for the re-entry process.
"When I first came out, I was intimidated by the services people offered me -- I was not used to having so many people handling my business and asking me the same questions. To me, they all worked for the government; didn't they all have access to the same information? I said, hold it, hold it, what do you want from me now?"
One of the first problems parolees face is that service providers often don't understand that prior to release, all services were provided at the same facility. Now they may need to access services from two or three different agencies, and traveling from one agency to another with a Metrocard may trigger old insecurities and frustrations. In some agencies, follow-up is done by a person other than the one who completed the discharge planning. In some cases, a person newly released from prison may not be ready to accept what service providers have to offer.
"It wasn't clear to me why my parole officer wanted me to complete another treatment program in the community when I had completed the Alcohol and Substance Abuse Treatment program in prison."
Another source of confusion is how to implement certain conditions of release, such as seeking and maintaining employment. Should a newly released person get a job and attend a substance abuse program after work, or put their health and sobriety first?
Often, people on parole do not want to admit that behind their HIV or HCV diagnoses are chronic substance abuse problems or mental illness. It is easy for people released from prison to focus on their parole stipulations rather than looking at substance abuse issues as part of their general health concerns.
"The reason I did not succeed the first time I came out was that I thought I could do it myself. I never trusted anybody inside or outside. The second time, my transitional planner insisted that I needed to develop a scenario with plan A and plan B. At the beginning this did not make much sense, but after my release the second time I realized that things never go perfect. I was glad that he had prepared me for the worst. I have been out for five years already; prison life is definitely in my past."
Once all these unresolved issues, along with the economic needs of their families, begin to mount, people on parole may find themselves confronting their first crisis. Service providers must be proactive and address the emotional issues their clients face upon re-entry, and they must discuss a range of scenarios, helping them visualize and discuss the pros and cons of every action they may take.
Service agencies can take on additional key roles such as educating people on parole, as well as their parole officers, about living with double or triple diagnoses. One model, used at the Osborne Association, is to have staff regularly accompany clients to discuss medical issues with parole officers, who receive first-hand education from the person on parole. Parole officers in turn educate their clients about the difficulties of supervising 40 to 50 people on parole at the same time. The most successful outcome of this interaction is the sensitivity that all parties are able to develop around issues of HIV/AIDS, substance use, and community supervision. For example, in the past many parole officers misinterpreted some of the behaviors associated with complicated medical issues such as AIDS-related dementia. Meetings between case managers and parole officers were instrumental in preventing clients from being sent back to prison for behaviors that parole officers could have interpreted as manipulation, rather than loss of memory or disorientation caused by HIV/AIDS.
In the end, transitional planning for people with HIV leaving prison is not limited to addressing material needs. It is also about assessing their emotional needs, and about going beyond traditional roles by taking on new challenges, such as educating parole officers about the facts of living with several chronic medical conditions. If we are to enable some of the sickest people in our society to obtain the services they need to survive, it takes a whole community.
* Blind seroprevalence tests of all incoming inmates between 2000-2001 found that 5% of men and 14% of women were HIV positive. But of the estimated 5,500 inmates with HIV, only about 3,000 are known to DOCS medical staff and are receiving care. Of all inmates, approximately 9,250 have HCV (23% of females and 14% of males), 73% have a history of substance abuse, and 11% have been diagnosed as "significantly, seriously, or persistently mentally ill." The State of Prisons: 2002-2003: Conditions of Confinement in 14 NYS Correctional Facilities. The Correctional Association of New York, June 2002.
Dicxon Valderruten is the Senior Instructor at the Osborne Association's Peer Education and Empowerment Training Program. He has provided transitional planning and taught a wide range of HIV/AIDS training courses in prison and in the community for the past 15 years.