While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
Position: Volunteer Executive Director
Chicago Youth Programs
Joe has helped me in so many ways. It is a debt I can never repay. He tutored me weekly when I was in high school. Now I go to Columbia College. In Cabrini, often what people think is fun is a felony or is life threatening to other people. But playing basketball, going out for pizza, going to a play—all that was fun and kept me off the streets as well. Those may seem like little things, but it's had a major impact. Now, I talk to the younger kids about peer pressure, gangs, staying in school, l and just about having a positive attitude. I hope that one day I am able to do half of what Joe has done.—Former Chicago Youth Programs Participant
I have come to believe that what Dr. Joe has accomplished is simply inhuman. He has created a community institution—bridging resources between varied organizations—to serve the health and well-being of the hundreds of children and families within Cabrini Green. And he has done so with a tireless devotion and a consuming passion. Still, while close to every parent and child in Cabrini Green knows and respects Dr. Joe, the larger community of Chicago (the media and other high-profile sectors) has never heard of him.—Volunteer Director, Washington Park Youth Program, Chicago Youth Program
The children and their families are not just recipients of Chicago Youth Programs' services, but they become his friends as well. When a child is killed, or a teen gets pregnant, Joe hasn't lost a consumer, he has failed a friend.—Director, Cabrini Green Youth Program Clinic
Even as a child, Joe DiCara says, "I always knew I wanted to work with children in need," he recalls. "But the 'in need' part wasn't well defined." A science major in college, he grew frustrated spending his time looking through a microscope. "So I said to myself, 'what can I do to bring science and caring for people together?' And the obvious answer was, medical school." A native of New Jersey, Dr. DiCara enrolled at Chicago's Northwestern University Medical School in 1982.
"At that time, the front-page news in Chicago featured gang shootings, out-of-control teen pregnancy, high-school dropout rates of 60–70 percent," he remembers. "You'd have thought these were things the medical school would be dealing with, or at least have a lecture on. So I waited patiently for two years, but we did not receive a single lesson on it. You got the impression, as a medical student, that most of the people charged with teaching us were in ivory towers. They were sitting in a nice clinic, and waiting for people with the means to pay to come and visit them. That's not what I went into medicine for." Dr. DiCara went through a period of soul-searching, thinking that he must be in the wrong place.
He began sharing his thoughts with fellow students and discovered that many of them felt the same way. Out of this sharing, an idea began to take shape in Dr. DiCara's mind—a vision for helping children that grew into a life's work.
"It kind of came about by accident," he says, remembering the 1984 genesis of Chicago Youth Programs (CYP). "On our forays into the bar district, to relieve some of our own medical school stress, we would come across kids from the nearby housing project, Cabrini Green, who were panhandling at 10:00 or 11:00 at night. They would be 9, 10, 11 years old, and they'd have no direction in life, and obviously no supervision, because they're out at all hours. So we just started talking to them. I was running the sports program at Northwestern for the graduate campus—the intramural sports program. So I had an 'in' to gyms and stuff like that. So eventually, we invited them." The kids responded enthusiastically.
"That was how we got started," he recalls. "Let's meet the kids, and do something that they enjoy and we enjoy, and as we get to know them, we can figure out more that we can do for them." It was only a few weeks before pure recreation expanded into simple lessons on the heart, health, and lifestyle. Although it did not yet have a name, CYP had been born. Its spaces and equipment were all donated. Its workers were all volunteers. Today, it remains largely the same. CYP serves more than 700 children and teens in three Chicago neighborhoods where 95 percent of the population is African American, and 75 percent live below the federal poverty level. CYP offers 46 distinct programs, yet all but eight of their more than 600 staff are volunteers, and all 46 of their spaces are donated. Joe DiCara, who has worked for the organization nonstop since 1990 in a volunteer capacity, says, "My desire is always to get an extra person to help at the office. It wasn't going to make our organization better to start paying me when we had raised extra money for a position."
"In the beginning," remembers Karen Sheehen, MD, MPH, now the director of CYP's Cabrini Green Clinic, "it was a fledgling program serving about 40 children, funded by passing a hat around class. Like many medical students, Joe had idealistic dreams, but unlike many, he acted upon them. He convinced the university to donate space. He raised money, recruited volunteers, overcame prejudice, designed programs, mentored children, and was a role model for all of us. And yes, he completed his medical studies."
Having set up the organization and launched its first programs, in 1986 Dr. DiCara went on to his residency in pediatrics at Northwestern's Children's Memorial Hospital. Meanwhile, the numbers of CYP participants and volunteers quickly grew. By 1989, two thirds of Northwestern's medical students were volunteering each year. But as the program grew, so did resistance to it. Joe DiCara, a white man at the head of a mostly white corps of volunteers, had to earn respect from Cabrini's mostly black residents. And on the other side of the equation, the university found itself under pressure for allowing large numbers of inner-city youngsters to invade a campus usually reserved for well-heeled students. It wasn't long before a spark came along to light the fire—literally. A group of CYP children was to perform at a fundraising ball at the university. While Dr. DiCara was upstairs getting the staging set, they were at the university, getting bored waiting for him. One of them idly set a rubber ball on fire. Someone pulled an alarm, police and firefighters arrived in force, and the next thing Dr. DiCara knew, CYP had been kicked off the Northwestern campus. Their donated spaces were gone in the blink of an eye.
That same year, 1989, Dr. DiCara was finishing up his residency. It would have been an expedient time for him to let CYP die, head back to New Jersey, and start a lucrative career in medicine. Instead, he worked with politicians and the park district to re-establish the program, this time in Cabrini Green itself. Although a difficult experience for Dr. DiCara, this was a turning point for the program. Because of the move, CYP was able to expand programming, both in depth and breadth, and to serve additional children. Incidentally, CYP has since been invited back to the university, and uses space donated by Northwestern.
Once things were up and running again, Dr. DiCara changed directions. He decided to take a year off before beginning his pediatric career. He had worked developing CYP for five years. "I wanted to see how really impoverished communities overseas do community development," he recalls. "It was a really great experience for me." He went to Thailand as a volunteer on a Luce fellowship. There, his research and reports on AIDS in the slums of Bangkok provided one of the first indications of the presence and severity of the disease in Thailand. Dr. DiCara also founded a malnutrition monitoring program in the city's slum schools, taught basic project monitoring and statistics to the staff of local foundations, advised a community-based anti-drug abuse program, and wrote manuals on accident prevention, first aid, and basic triage for Thai schools, day care centers, and clinics. His busy service year over, he returned to the United States, but he has kept his connection to Thailand, and continues to do occasional work for the Duang Pratheep Foundation, a charitable organization improving the education and health of slum children in Bangkok.
Dr. DiCara married a Chicagoan in 1990, and accepted a job as a pediatrician in neonatology at Chicago's Prentice Hospital, where he works to this day. And he resumed his volunteer executive director's job at CYP. Soon, he became aware of a newly emerging problem with the Cabrini Green program. In founding CYP, Dr. DiCara had had two goals in mind—to improve the life opportunities of high-risk children, and to provide volunteer medical students with first-hand insight into the difficulties of living in the inner city, so they could incorporate this knowledge into their practices. To realize this vision, he had developed the volunteer mentoring program, where medical students provided the children with a "window on the world," introducing them to many new experiences. While the mentoring program was still doing well with younger children, by this time it was apparent that as the children reached adolescence, many of them left the program. Often, they quickly became involved in violence and other high-risk behaviors.
"The first goal became to keep them in," Dr. DiCara recalls, "because we couldn't help them long-term if we couldn't keep them in long-term. And if they were still in our program because we have provided attractive activities and services for them, we needed to figure out what things they needed so they could be successful long-term." As a result of asking this question, Dr. DiCara concludes, "From 1990 on, we had an explosion of programs." This expanded set of services included safe recreation, education, career guidance, health care, and injury prevention (through a Robert Wood Johnson Foundation (RWJF) funded project, Injury-Free Chicago, which is part of the Dissemination of a Model Injury Prevention Program for Children and Adolescents). It provided natural steps up the developmental ladder—from reading, socialization skills, and role models for preschoolers; to career/college prep and scholarship help for teens. Sports and a health clinic were offered throughout.
An absolutely essential component of this comprehensive approach was that community adolescents, working with medical students and professionals, now served as role models to the younger children. "They wanted small, part-time jobs," Dr. DiCara relates, "because, as a teenager, there's a lot of pressure to have a certain pair of sneakers, or have a little spending money to be able to go out on a Friday night. For them, the only option was to sell drugs, or be runners or lookouts for drug sellers. So we paid them to design lessons and activities and teach our younger children not to be in gangs, not to do drugs, etc. And it's well worth the small stipend that we pay them, because they have a big influence." In order to take advantage of recreational, social, and job opportunities, teens were required to come to career and tutoring classes themselves.
For girls, a primary focus was on avoiding pregnancy, since this was the main reason many of them dropped out of school. The CYP package now offers contraception, recreation (including weekly trips), social and leadership opportunities, part-time jobs, and college and career prep. Professional African-American women visit, providing role models. "We do things like 'I Don't Have a Baby' showers," Dr. DiCara says with a smile, "so they can feel special for not having babies. We have tons of girls leaving for college who have been in our program for awhile, who listened and stayed away from pregnancy." He adds with a note of satisfaction, "We haven't had a girl deliver a baby in our program for a while."
Indeed, the results and outcomes of CYP programs speak for themselves. The organization carefully measures outcomes, which are nothing short of spectacular: a 92 percent retention rate; 75 percent of participants involved in CYP for four years or longer; an 88 percent placement rate for college or trade school; and teen birth rates—going back a decade and a half—that are far below those for Chicago black teenagers as a whole (for example, CYP 15 to 17 year olds had a birth rate of 3.9 percent during that period compared to 10.2 percent for all black Chicago teens of the same age; CYP 18 to 19 year olds had a 5 percent birth rate compared to 16.8 percent for all black Chicago teens of the same age). Dr. DiCara attributes CYP's success to its frugal, efficient, step-by-step approach, and to its dedication to using primarily volunteers. "We don't start programs until we have the volunteers to do it," he says, "and we don't run until we have donated space." For their part, CYP's medical student and physician volunteers gain a great deal of satisfaction from their participation. "It's really helped us maintain our own values," Dr. DiCara notes of the volunteers.
While spectacularly successful and well known locally, CYP was long invisible beyond its own environs. Early media exposure had not been capitalized on, for lack of staff. "Volunteers want to work with the kids—you're not going to find many of them interested in public relations," Dr. DiCara explains. But all that changed when "Dr. Joe," as he is universally known, received the Robert Wood Johnson Community Health Leadership Award in 1998. "To be able to show people that one of the best and largest health care foundations in the country recognized us opened up a lot of doors," he says. "We're getting more nationwide recognition and funding now."
The award came with a $100,000 stipend to further Dr. DiCara's vision. He put the funds to work in several ways—shoring up the peer-mentoring program so it could serve as a more attractive funding magnet, hiring a retired person as a part-time grant writer (taking pressure off Dr. DiCara), setting up a computer network, and increasing CYP's scholarship fund endowment. Through the Community Health Leadership Program (CHLP), Dr. DiCara met and forged strong connections with Illinois Senator Richard Durbin, who continues to be a CYP supporter. Dr. DiCara also appreciated the opportunity to rub elbows with other CHLP award winners at the program's annual retreats. "It's the closest peer group I've ever been involved with," he says. "These are people who experience and go through similar things, and have to tackle similar problems and challenges. Any time we're together, we learn a lot from each other. I don't ever want it to end."
Since winning the CHLP award, Dr. DiCara has continued to further CYP's vision. He sees the next five years as a period of filling out program offerings at the three existing community centers (Cabrini Green, Washington Park, and the new Uptown center), shoring up infrastructure and funding, and perhaps, one day, expanding beyond Chicago, "With a new set of funders and a model that works."
Dr. Joe DiCara continues his work both at CYP and at Prentice Hospital. He works mostly nights and weekends, so as to spend more time with his wife and two children. He remains committed as ever to the volunteering concept. "Being a volunteer tests you, to see if you really can make a difference and if you really want to do it—because you do have to make sacrifices." Dr. DiCara himself has sacrificed much financially—a doctor, in his forties, he is still paying back his student loans.
To Dr. Joe, leadership rests on three things. The first is passion. "There are so many times when you've gotta do something when you're dead tired, or you've had enough, or you can't do it. And you realize there is no one else to turn to, so you do it. Or this is going to fall through if you don't do it—and a lot of little things falling through leads to the organization falling through. It's very difficult to talk yourself into the unglamorous tasks."
In Dr. DiCara's view of leadership, the second element is providence. "A lot of coincidences had to happen for this program ever to happen. And it could've stopped a hundred times along the way; yet every time, something out of the blue came. The Robert Wood Johnson award is a perfect example. We were at a turning point, where we needed definite improvements or things could've started going the other way—and the award happened."
The third crucial element, Dr. DiCara believes, is direct contact with the population you serve. "A lot of the kids would stay at my house with me for weeks at a time—when they needed a friend, or were in trouble—and every time as an organization that we came to an obstacle, I just thought of them, and I couldn't let this stop. There's a certain amount of stubbornness you get when you know what you're doing is making a difference."
With the continued help of providence, it's a good bet that Dr. Joe will continue overcoming obstacles, and making a difference.
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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