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ASCENSION HEALTH

By JUDITH VANDEWATER
Photos by DAVID R. PFLEDERER

> View related Alexian Brothers Health System videos of The Harbor, Bettendorf Place, Bonaventure House, My Own Key.

CHICAGO — Before LaRon Burton got his head straight and his life on track while living at The Harbor, an Alexian Brothers Health System sober house for recovering addicts with HIV/AIDS, he bet his life on one last high.

"I bought a bunch of drugs and I tried to OD. I said, if I die, I die; but God, if I don't die, I'll do whatever it takes to stay clean and do what I'm supposed to do," Burton says. Now 47, Burton had relapsed after nine years of sobriety; and, by the time he hit bottom on Sept. 3, 2011, addiction to cocaine and heroin had cost him his livelihood, his home and his health. "I just wanted it to stop. I didn't care how it stopped," he says.

LaRon Burton, a graduate of the residential addition recovery program at The Harbor, sits in the dining room of the Waukegan, Ill., facility where he lived for about 19 months. He has an apartment of his own about two blocks away and has started a small business, LaRon's Electrical Repair and Upgrade.

Patricia Douglass was 12 the first time she used heroin. Over the next 30 years, she did prison time for theft, she "lived off other people" and occasionally supported herself as a prostitute. "I made it day by day, basically," she says. She was 26 when she contracted HIV by sharing a needle with a person she knew had the virus. "I didn't think ahead; it just didn't matter," says the 45-year-old.

No matter how raw her lifestyle, how reckless her choices, Douglass says she couldn't imagine any consequence that would push her to stop injecting heroin. That changed in the summer of 2011, when, she says, "I felt my spirit leaving. I felt myself dying inside." She checked herself into a detox program and went on to spend 17 months in residential treatment at Bonaventure House, the second of two Chicago-area sober houses for HIV-positive people operated by Alexian Brothers Housing and Health Alliance. The alliance also operates a permanent supportive housing complex in South Chicago and has dispersed apartments for HIV-positive individuals and people with serious, persistent mental illness.

Clients must have 90 days of sobriety before they are eligible to live in either Bonaventure House or The Harbor; they can stay up to two years. Residents get a private sleeping room, case management, job preparation and spiritual care. They share meals and attend group recovery meetings on site and in the community.

In addition to HIV or AIDS, and addiction, the majority of residents have a history of mental illness. Some residents have other chronic health issues such as hepatitis C or tuberculosis, as well. There is no medical doctor or nurse on staff at either facility. Case managers assist clients in accessing medical care in the community. They make sure that clients understand their doctors' instructions; and they emphasize the importance of taking HIV drugs and mental health drugs as directed, and without fail.

"In every step of what we do, we are always focusing on preparing people for independence," says Cheryl Potts, executive director of the Alexian Brothers Housing and Health Alliance.

Burton and Douglass both graduated from their respective Alexian Brothers alliance residential treatment programs this summer and moved into rent subsidized independent housing. Burton has a one bedroom apartment two blocks from The Harbor in Waukegan, Ill., and is starting an electrical repair business. Douglass is taking college courses and has settled into her efficiency apartment in Chicago. She is exuberant in describing her new life, but she does not mask her vulnerability.

She says: "I used for 30 years of my life; I still don't know who I am."

Both Burton and Douglass participate in the yearlong Connections Aftercare Program, which provides ongoing case management and emotional support to graduates of Bonaventure House and The Harbor. Both Burton and Douglass say they are taking their HIV medications on schedule. Burton, who was diagnosed with AIDS in 2000, says his viral load is undetectable; Douglass says her HIV status plays only a "very small role" in her life.

Out of hiding
There is no cure for addiction or for HIV; both are chronic diseases that can be deadly. Antiretroviral drug therapies initially introduced in 1994-1995 have greatly improved the prognosis for HIV-infected patients who adhere to their dosing schedules. But research has shown that only a minority of people with HIV get the full benefits of available treatments. Homelessness and addiction are great obstacles to the effective, consistent treatment of HIV-positive people. Stable housing and social service wraparound programs like those offered at the Alexian Brothers alliance facilities combine with antiretroviral therapy to produce the highest health outcomes for HIV-positive individuals with a history of homelessness and addiction, Potts says.

HIV adds another layer of complexity for recovering addicts because the stigma of HIV lingers despite the success of drug treatments. And that is particularly true in poor African-American and Hispanic communities that have become a locus of new infections, Potts says. It's not uncommon for recovering addicts to hide their HIV drugs and status from others at residential addiction treatment facilities, Potts says. That concealment is unhealthy because deceit and denial are hallmarks of addictive behaviors.

At the Alexian Brothers recovery homes, residents can be honest and open about their HIV/AIDS status. "We have staff who are educated about being adherent to (HIV) medications. We have transportation services to get people to the doctor. We have support groups that focus on living with HIV," she says.

Sober houses provide the recovering addict with a structured living situation away from toxic social networks and emotional triggers that may increase the risk of relapse in early recovery. At the eight-bed The Harbor and the 35-bed Bonaventure House, newcomers agree to abide by strict rules intended to improve their chances of success. They adhere to an early curfew. All residents blow into Breathalyzers when they return home for the evening. They submit to random urine drug screens.

Residents share chores, and those who have a job or disability insurance pay 30 percent of their monthly income toward their room and board. (The Alexian Brothers alliance also receives funding for services from local, state and federal payers, as well as government grants and private philanthropy.)

Many of the residents know what it's like to scavenge for a meal and a place to sleep. At The Harbor and Bonaventure House they have hot meals and private rooms. They have case managers to help them set and achieve goals and a spiritual care counselor focused on creating or restoring a sense of self-worth.

Potts says many residents have been sexually or physically abused. "They are coming to us so very broken. These are individuals who have always been told they are not good enough; they have been rejected by their churches and their families. We have people whose family members make them eat off paper plates when they go home for Thanksgiving," she says.

Staff maintains a respectful, safe environment where people are held accountable "and are loved — are genuinely loved," Potts says.

Even so, relapse is a constant threat for the addict in recovery. The choice not to use ultimately rests with the individual. Staff builds therapeutic relationships by being approachable and authentic, but must be emotionally girded too because not everyone who tries to get clean succeeds. Some die as a direct consequence. "The best thing you can do is just open doors, and people make decisions about whether or not they are ready to walk through those doors," Potts says.

Douglass says that at Bonaventure House, she experienced for the first time what it feels like to have people who care in her corner. The staff members gave of themselves without expecting anything in return, she says. "In the world I come from, that is huge."

Many people with life-threatening addictions may not want to give up alcohol or drugs; others who do may never achieve lasting abstinence. Still, these individuals may be able to cut back on their intake of drugs and alcohol and so reduce the physical damage to their bodies. According to the National Institutes of Health, public health strategies to promote "harm reduction" have been effective in reducing morbidity and mortality among adults with addictions.

The Alexian Brothers alliance employs a housing first, harm reduction model of care at its Bettendorf Place Apartments. The permanent supportive housing complex opened in August 2011 in a converted convent on Chicago's south side. To qualify for one of the 23 efficiency apartments, prospective tenants must be homeless and diagnosed with a chronic disease. The majority of tenants are HIV-
positive. Some tenants have no issues with drugs or alcohol, some have mental illness and/or substance addiction, some are recovering from addiction and some are actively using drugs or alcohol (illegal substances are not allowed on the campus).

Michele Kamin-Lindsay, Bettendorf's clinical director of harm reduction, and other staff work with willing tenants who are actively abusing drugs or alcohol in the hope of guiding them to safer choices.

"Some people may choose to drink six beers a day for the rest of their life instead of a 12 pack," says Kamin-Lindsay. "They may choose abstinence and need help getting to that path. The one thing I appreciate about harm reduction is it is very open. We are saying we are accepting you as you are when you walk through the door, and whatever path you choose, we are going to support."

Potts says that people taking antiretroviral medications for HIV can't miss their medications without putting themselves at a health risk. "If you talk to someone who is using, you say, 'You can't binge on weekends. How are you going to stay adherent'" to HIV medication dosing? "The adherence piece is very important," she says.

Kamin-Lindsay says it takes time for Bettendorf Place staff to build trust with residents, and trust is the foundation of a therapeutic relationship. "It takes time to empower clients enough to have them want to take their meds and have this lifestyle that is safe," she says. "We've had people living under viaducts before moving to Bettendorf." Residents with mental health issues who don't stay on their mental health medications can be impulsive and may be in and out of hospitals. "There is so much they come to us with," she says, "that is part of the reason it takes so long to build a relationship" of trust with staff. The residents "have to put all that down."

Alexian Brothers care for the most unwanted

CHICAGO — In 1989 when the Alexian Brothers AIDS Ministry opened Bonaventure House in Chicago as a residence for men and women with AIDS, an AIDS diagnosis was an almost certain death sentence. Bonaventure House was a place to die with dignity. The somber black and white portraits of the first residents hanging in a stairwell gallery are a haunting reminder of the abject emotional and physical devastation wrought by the disease in the first decade of the epidemic.

By comparison, HIV status has a bit part in the lives of most of the residents at Bonaventure House today. When anti-retroviral therapies drop viral loads to undetectable levels, worries about HIV can recede; and residents can concentrate on rebuilding their health, recovering from addiction, breaking a cycle of homelessness, managing mental illness and starting fresh.

When HIV/AIDS first emerged, "it was called the plague of the 80s," says Br. Warren Longo, CFA, assistant superior general of the Alexian Brothers Immaculate Conception Province. The main source of infection was unprotected sex between males, followed by needle sharing among IV drug users. The virus destroyed the immune system and allowed opportunistic infections like thrush and toxoplasmosis to rage unchecked. Many of its victims suffered agonizing, wasting deaths. Mainstream society reacted to the epidemic with fear and revulsion.

Br. Daniel McCormick, CFA, provincial of the Arlington Heights, Ill.-based Alexian Brothers Immaculate Conception Province, recalls early AIDS victims being rejected by family and friends. "Literally, parents were kicking their kids to the curb; men were abandoning their lovers" dying of the disease, he says. "People had absolutely no place to go."

The unmet need and suffering moved the brothers to action. Br. Longo says the decision to get involved in AIDS care was in keeping with the lay congregation's original charism — to care for the most unwanted, the most marginalized in society. The brothers cared for victims of the Black Plague in the 1300s, and they would not turn away now. Br. McCormick says: "Historically, we have gone into the mouth of the lion rather than running from the roar."

The Alexian Brothers' original attempt in the mid-1980s to open an AIDS residence on the south side of Chicago was shot down by Rep. Daniel Rostenkowski, a powerful member of the U.S. House. Rostenkowski, who died in 2010, had been adamant in his not-in-my-backyard objections to the project, Br. Longo says.

Chicago's late Cardinal Joseph Bernardin offered the brothers a vacant convent to house an assisted living facility for men and women with AIDS, and its life-limiting precursor, AIDS-related complex. The convent was across the street from the Illinois Masonic Hospital, a facility known for its AIDS work and in a near north neighborhood that Chicagoans call "Boystown" because of its concentration of gay residents. In 1989, the brothers opened Bonaventure House in the remodeled convent.

Br. McCormick was at Bonaventure House in the early 1990s as a pastoral care provider who also did fundraising and development. "I was working there in '94 when a mother came into our alley and pushed her daughter out the back of the car with two bags of clothes," he says. The Alexian Brothers took the young woman in, and cared for her. Br. McCormick says the brothers helped reconcile the family before the patient's death. "She was able to hold her niece and nephews, and her family was present at her death and at her funeral."

The Lazarus effect
In the early years, people with AIDS moved into Bonaventure House with the expectation that they would be dead within six months. With the advent of the first successful drug therapy for HIV/AIDS in 1994 and 1995, the prognosis for HIV/AIDS patients improved so dramatically that published reports referred to a "Lazarus effect."

The "three-drug cocktail" regimen was complicated, sometimes requiring the ingestion of up to 30 pills per day on a rigid schedule, and the drugs caused severe side effects. Today, the drugs are more potent and easier to tolerate, and one or two pills a day may be sufficient to reduce an HIV viral load to undetectable levels. Individuals who begin the drug therapy shortly after an HIV diagnosis can have a full life span. And patients diagnosed with AIDS, who respond to drug therapy, can see their viral loads reduced to undetectable levels. (An HIV infection progresses to AIDS when a person develops one of a number of opportunistic infections, or has a CD4 white blood cell count below a threshold that indicates a severely compromised immune system.)

When drugs transformed HIV/AIDS into a survivable condition, the Alexian Brothers added health literacy and job skills training and case management to the service offerings at Bonaventure House. About the same time, the brothers found that many of the new residents, particularly those with a history of homelessness, were alcoholic or abusing drugs. "Eventually recovery became a mainstay of how we managed the house, because more and more of our residents exhibit comorbidity in alcohol and drug abuse," Br. McCormick says.

In 2000, the Illinois Department of Human Services Division of Alcoholism and Substance Abuse licensed Bonaventure House as an addiction recovery home for individuals with HIV. The Harbor, which opened in Waukegan, Ill., as a supportive living HIV residence in 1998, was licensed as an addiction recovery home for HIV-positive individuals in 2006. According to a department spokesperson, these two Alexian Brothers residential treatment facilities are the state's sole holders of that specialized license.

Br. McCormick says despite regulations against discrimination, many landlords find ways not to rent to people with AIDS. To provide permanent housing for people with HIV/AIDS, the Alexian Brothers began development of Chicago's Bettendorf Place Apartments. (The complex is named for the late Br. Felix Bettendorf, CFA, who was the original chief executive and president of Bonaventure House.)

In addition to the three residential complexes, the Alexian Brothers AIDS Ministry managed dispersed housing units for HIV-positive individuals and people with serious, persistent mental illness. Br. McCormick says the Alexian Brothers had supplemented its AIDS ministry's budget for several years, and the leadership foresaw the need would continue indefinitely. That presented a hardship as there are only 20 Alexian Brothers in the U.S. and they are essentially without income, Br. McCormick says.

Mark Frey, the president and chief executive of Alexian Brothers Health System, stepped up with an offer of support, Br. McCormick says. In 2011, the health system assumed sponsorship of the AIDS housing ministry and a community mental health center run by the Alexian Brothers. Bettendorf Place opened in August of that year.

In January 2013, the Alexian Brothers AIDS Ministry was renamed the Alexian Brothers Housing and Health Alliance. Cheryl Potts, the executive director of Alexian Brothers Housing and Health Alliance, sheds light on the name change: "AIDS is still a stigmatizing term, and we want to respect people's confidentiality. In addition, we are serving more and more people who are HIV-positive, but who do not have AIDS." Residents had expressed concern that potential employers might be hesitant to hire an applicant living at an AIDS ministry facility.

And, at a time when support for HIV social service organizations is shrinking, the name change opens the door to an expanded mission, Potts says. "This year we started to serve, for the first time, individuals who are not HIV-positive. Staying true to our mission of serving those most marginalized and understanding the great benefit housing has on creating stability in the lives of homeless, the mentally ill, and those with chronic diseases, we have expanded our mission to those individuals."

— Judith VandeWater

Copyright © 2013 by the Catholic Health Association of the United States
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