AIDS TREATMENT NEWS - February 20, 2007
John S. James

Summary: A Philadelphia program for people with a mental health diagnosis who are HIV-positive has won national recognition. We interviewed its founder for ideas and approaches others can use.

The unique Community Living Room in Philadelphia was selected as a model adult mental health day program, both locally and nationally in the U.S. It serves people with a mental health diagnosis who are HIV-positive. Jeff Hoeltzel, M.Sc. and a licensed psychiatric rehabilitation practitioner, built the CLR during the almost 12 years he directed it. He will be leaving in February 2007, and the staff he trained will continue the organization.

AIDS Treatment News interviewed Jeff on January 10, 2007.

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AIDS Treatment News: Could you outline the guiding philosophy of the Community Living Room, how it started, and the recognition it has received in the mental health field?

Jeff Hoeltzel: The Community Living Room is the first thoroughly community-based mental health HIV program in the United States -- meaning that it is not part of a hospital or university providing mental health services, or within an HIV agency with a few counselors. The whole focus here is on the mental health HIV client.

CLR was started with a grant from the U.S. National Institute of Mental Health to the city of Philadelphia in 1995. The grant was awarded to 11 cities in the United States in the first go-around, to look at whether there was a need for specialized mental health services for people with HIV -- or should we put these clients into the regular public mental health system. In Philadelphia this project was looking to serve low-income people, and those who often don't seek out services. In the other 10 cities the programs were attached to institutions such as universities or hospitals. Philadelphia did something different, and asked COMHAR (http://www.comhar.org) to set up a freestanding community-based service. ...

How CLR Works: The Three Pillars

We wanted to do a couple things differently than traditional mental health services. We needed to engage people who are very difficult to engage, because many times they are on the outskirts of the society, sometimes because of stigma of HIV, sometimes mental health, or sexuality issues; often they are rejected by families and social circles. I decided not to go any traditional route, but to reach out, to deal with their pain but also their joy and their possibilities.

After first coming here I talked with every client I could individually, and discovered how isolated people felt, how alone they had felt beforehand, and how they thought they were going through things uniquely.

So one of the pillars was how to help people build relationships, connect, and network -- that had to be one of the major goals we had in this program.

The second pillar is achievement. People with mental health issues often have what we call in psychiatry learned helplessness; they feel that they are not able to do anything. They had HIV added onto that, and it was before protease inhibitors, so people had the specter of death looming, and many had given up. I wanted accomplishment to be the 2nd pillar, so that people could achieve and get rewards for doing so, both internally and externally. We built on a theory of successive successes -- that no matter how small the success we could build on it, but let's help people find something that in a couple weeks they could achieve.

The third pillar is to build empowerment. The first step in empowerment is knowledge. So we want the Community Living Room to be a place where people can come in and share knowledge, and members (clients) can share knowledge with each other. But there are many smart people who are not empowered. You cannot empower people, only provide the tools so they can empower themselves.

Many people needed the skills to use their knowledge to their advantage. So we had to design services that also taught skills. But many skillful people are still not empowered. So we had to help instill motivation to use the skills and knowledge to their benefit.

Two other principles evolved..:

(1) We needed a program not based only on problems. Psychiatry is so problem-oriented that people are not aware of strengths and wellness. When I would do an intake, people could often talk for a long time on their problems. But when I asked them to tell me about their talents and strengths, how quiet they were! They were so quiet, yet they all had talents and strengths.

So I wanted to do a more holistic program -- one that involved peoples' talents, and the creative arts, and presented different ways they could get involved in HIV and other treatment.

On complementary therapies, I may not agree that all of them are equally important (herbal therapy, aromatherapy, massage, among many others) but we wanted to present this approach. We wanted to have art, music, dance, writing, and drama -- because people are more than HIV, more than mental health, more than their labels. So we developed a holistic approach.

(2) The second addition that became like the fifth pillar was community integration. People come here, and we work hard to make the space look attractive, inviting, and engaging. But I didn't want a sanctuary from the real world; I wanted windows to look right out on Philadelphia streets. Those same streets that held difficulties before also hold promise here in Philadelphia.

I wanted a program that sent people out into the world to live. We're the Community Living Room, and I wanted to highlight living in the world, not just in the program. So we provide opportunities, and help people find different niches in the world than they ever found before -- sometimes to find a job, sometimes volunteer work, and sometimes committees. We have almost 25 clients on committees in the city, from mental health, to HIV, to drug and alcohol, and gay/lesbian/bi/transgender committees. People are involved in the theater, in sports, everything we can do to integrate them more in the community.

For example, the members who work on the Community Living Room newspaper have passes to the Flyers, to Penn, to Temple. Our reporters can even interview players in the locker rooms after the game -- anything we could do to integrate people into the wider community.

So the three pillars and those two additions have become the guiding tenets. Members and staff working together are a community.

We forged this together. People began to do many new things in life, even if their life hadn't been going anywhere, and they keep doing new things.

We tried to aid this with a space that looked different from your typical clinic. I want art on the walls, and different colors; we are a community of many colors here. I want fountains, and murals by members in the art group, sculptures. I don't want furniture that's institutional, so we found things like a Viennese canopy lamp, southwestern lights, medieval gothic chairs, anything that can add to the atmosphere, to support all this.

We've also made it so you can come right in to the program; we don't have a guard or anything. It's rare for a program not to have a front desk, but people didn't like being questioned right away. ...

We have a huge multicultural day in February, to celebrate culture in general as well as African American culture. Every year we have a special African American performance or presentation. Last year for example we had a poet from Liberia; the year before, we heard Raymond B. Webster, a major writer on Black scientists and inventors. We then may follow up with something like Brazilian dancing or Caribbean rhythms. We had a Serbian lunch, catered by a Serbian restaurant; the year before we had a Burmese luncheon. Then we had a cultural Jeopardy game. Every year is different. We have a talent show that attracts hundreds of people; celebrity guests judge it, as members perform; it's jammed, it's awesome.

And we have a formal Spring Tea. Many Philadelphians have teas in the spring, so we have one in May to celebrate new life beginning. We have classical music every year, people dress up, we elect a king and queen, we have a promenade in, and a whole tea table of different pastries and tea sandwiches. People love it.

We have a trip every year. Where do we go on a trip? We go wherever people don't usually go. We do not go to go to the amusement parks; people have other options for that. We do not go to malls; this is not a shopping trip. So each year we usually do something uniquely different. This year we went to the Museum of American Glass in Millville, New Jersey, and saw old-fashioned glass making. We had a seafood lunch down at the shore, and then we went on the world's fastest speedboat from Wildwood for an hour and a half on the ocean. Each year it's a different trip of something unique to do.

So throughout the year we have many highlights and special things to bind us together and to remind us.

Those are the special activities. But it always comes back to our core services and goals, in networking people, achievement, and providing the building blocks for people to empower themselves. ...

Funding

We do have to take insurance, although we always serve a couple of people free as well. The insurance that we take is the City-sponsored CBH (Community Behavioral Health) insurance. No other insurance will reimburse us, because we're so different, so unique; they want the traditional program, all talk groups that are problem-based. CBH has kindly and supportively agreed to reimburse. In the City of Philadelphia, the Department of Behavioral Health has been outstanding in supporting us. And of course so has our parent agency, COMHAR. ...

Recognition of the Community Living Room

The city of Philadelphia, and the U.S. Department of Health and Human Services in Washington, have wanted to transform community mental health services. ... The idea was to provide different, more creative, empowering, networking, achieving, services for people. The Philadelphia administration brought in experts ... to transform Philadelphia. They looked around and saw that the Community Living Room was already doing it. ... So suddenly we were picked as the model day mental health program for the whole city of Philadelphia, even though we happen to be only for persons with HIV. ...

We were selected as Program of the Year in the United States by the National Council for Behavioral Health... We also received state and local awards. We can never take those awards and just sit back and think that we don't have to change or grow. We have to keep listening, keep finding creative ways to serve people, and never rest on laurels or bask in the glow of recognition.

New people aren't coming here because of the awards we've received, like going to a restaurant because of a five-star review. They don't want to have mental health issues, they don't want to have HIV, they don't want to be homeless, or have drug or alcohol issues. We have to strive to always improve our services. The awards have been nice, they've helped in funding, and the members love them, but they are not our purpose.

In a nutshell, that is our little corner of the world here at the Community Living room in Philadelphia.

2007-02-20
ATN070208

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