With an operating budget of nearly $5 million and programs dispersed throughout the city, the Chicago House and Social Service Agency is considered one of Chicago's largest and best-known HIV/AIDS nonprofits. It's been inducted to the Chicago Gay and Lesbian Hall of Fame and has welcomed luminaries such as Bill Clinton and Madeleine Albright.
And it all got started with a simple meeting in a drag bar.
In 1985, a group of community members, sick of seeing their AIDS-positive friends die on the streets, met at the Baton to address Chicago's need for nonjudgmental housing. The would-be activists soon banded together, fundraised through "tag days," and within a year, had enough money to lease an Uptown mansion.
"There wasn't one visionary," said Stan Sloan, current executive director. "There was a whole collection of people from the LGBT community. A little known fact about our history is that it was the whole LGBT community; it wasn't just gay men."
The Chicago House was incorporated as an Illinois not-for-profit on Sept. 9, 1985. Armed with private donations and $91,500 worth of city block grants, the NGO opened its first home on Feb. 25, 1986.
The renovated twenty-room Uptown mansion housed eight individuals in private rooms with shared dining, cooking and living areas. Since medications were largely nonexistent and life expectancies short, the house provided a space where people could die with dignity.
" [ We offered ] an environment where no one put blame on them, shame on them," said Dan Sesztak, who's worked at Chicago House since March 1987. "At least they were in an environment that was home-like. We tried to make the rooms as homey as possible."
Modeled after similar group homes in San Francisco, Houston and Boston, Chicago House's Uptown residence soon developed a hefty waitlist.
In November 1986, noted LGBT activist Thom Dombkowski became the organization's first executive director. Under his guidance, the fledgling NGO expanded operations to open Lakeview and Northwest Side homes in 1987.
Though the organization was making strides, it soon became evident that some residents desperately needed 24-hour hospice care.
"You can only be in the hospital for x-amount of time because of the insurance system we have," Sesztak said. "Then where do you go? Who wants to be in a nursing home and have AIDS?"
In 1988, Chicago House launched its 24-Hour Care Program on the first floor of its Lakeview residence. The need for hospice support quickly outgrew the tiny space, and in 1989, the organization opened a seven-bedroom Edgewater home that would become a permanent location for its 24-hour support services.
By the early 1990s, AIDS had become a truly global pandemic that touched people of every nationality, race and walk of life. To address the needs of shifting HIV/AIDS-impacted populations, the Chicago House launched its Family Support Program in 1992.
"From the start, our roots were in the gay community," Sloan said, "but we've always been about the much bigger picture of HIV and AIDS."
Chicago House partnered with the Children's Place Association to become the first service provider in the Midwest to offer family-focused housing. With funding commitments from the U.S. Department of Housing and Human Services ( HUD ) among others, Chicago House broke ground in 1995 on what would become known as the Fred Woods Home.
Open to the public in 1997, the North Side facility housed nine families in a collection of one-, two- and three-bedroom apartments. In its first year alone, the home received 53 applications for just nine spots; and the Chicago House soon launched a second family facility in Uptown.
In the late 1990s, the HIV/AIDS landscape shifted once more with the development of highly active antiretroviral therapies ( HAART ) . As people impacted by HIV and AIDS lived longer, fuller lives, their needs grew to include counseling, medication adherence therapy and much more.
Chicago House rose to the occasion.
"When you look back at our history," Sesztak said, "we tried to meet the needs of our clients as soon as we could. We saw [ a problem ] and—bam—we implemented the need."
In addition to offering myriad counseling and support services, Chicago House launched the Independent Living Program in 1997 with the purchase of a 24-unit building. Clients who could live independently but might still need financial support could apply to live in studio apartments.
"The question was: What could people do now that they could kind of manage their health and see their life expectancies extended?" said Jeff Pulliam, resident manager.
Regular case management and other social services were soon added to Chicago House's growing repertoire.
Health had improved so much in the HIV/AIDS community that by early 1999, Chicago House's 24-hour care facility had free beds and empty waiting lists for the first time in its history. After serving more than 400 people over the course of a decade, the facility closed its doors in 2000.
"It was a very clinical, hospital-like setting, and we just didn't need that anymore," Sloan said.
What Chicago House did need was a push toward prevention services, medication adherence programs and alternative housing. Today, the NGO boasts numerous counseling and employment programs, not to mention five distinct housing programs located in neighborhoods across the city.
The Supportive Living Program offers a "first step" home for those who are coming directly off the streets or might need substance abuse counseling; while family housing options now include aftercare and tutoring for children. And programs such as Gaining Ground and Scattered-Site offer rent subsidies for those working toward economic independence.
Helping clients achieve that kind of independence is what Chicago House is all about, Sloan said.
"The analogy is: People show up at our door, and we give them a toolbox," he said. "Over however many years that they need to live with us, they fill that toolbox up with tools to live healthy, independent lives. And they save [ money ] while they're with us: They take part of their income and it automatically goes into an account that we give to them when they move out."
While creating safe, affirming housing will always remain central to Chicago House's mission, Sloan said, the organization plans to focus its energy on social services, such as peer-to-peer education and employment programming, as it moves forward. [ For an in-depth look at Chicago House's employment services, see other article this issue ] .
"Chicago House has always chased the virus—whatever the new thing is," said Lisa Razzano, a UIC professor who conducts research with the organization. "Initially it was housing. There were no housing programs, so they made housing. Now there's no work for people with HIV, so they're doing that. We have a peer workforce in recovery that we could be taking advantage of. They're doing that."
Razzano believes Chicago House will continue to be on the forefront of innovative, adaptive programming well into the future.
"They've evolved as much as HIV science has evolved in the last 30 years."
To learn more about the Chicago House and Social Services Agency, visit www.chicagohouse.org or twitter.com/HereTilTheCure.
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
