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SPECIAL REPORT:
AIDS Action Organizes Congressional Delegation for Visits to CARE Act-Funded Services in Washington and Baltimore


SECOND STOP: Baltimore Pediatric HIV Program, Inc.

A comprehensive educational and holistic program for children living with HIV and their families, the Program provides access to a network of community resources, and focuses on all areas of functioning and language, and a variety of skills with individualized attention to meet the special needs of children. In addition, the Program’s staff monitors the health of children and families, administers medication to children, maintains critical contact with medical providers, and offers home- and hospital-based services to children who become ill due to their HIV infection. The Program’s educational services are developmentally appropriate for children as young as two years-old.

(from l-r) Richard Matens, Program Director of the Ryan White Title 1 Office of the City of Baltimore Health Department, and representative of InterGroup Services, a consulting group supporting non-profits including the Baltimore Pediatric HIV program, Cornell Thomas, outgoing Chair of the Baltimore Title I Planning Council, three representatives from Associated Black Charities, a client of the program (standing), and Debbie Rock, Executive Director of the Baltimore Pediatric HIV Program (seated on the floor)

In a large day-care center in North Baltimore, nearly 20 staff members, guests, and clients, as well as 30 smiling children, welcomed the delegation to the Baltimore Pediatric HIV Program. Executive Director Debbie Rock introduced the guests, who included program administrators from Baltimore and Maryland HIV/AIDS Administrations, Johns Hopkins University, Associated Black Charities, InterGroup Services, and the Baltimore Community Planning Group. Among the clients present were teenagers who had been HIV positive at birth and were lifelong clients of the organization, and HIV positive parents, and their caretakers.

Sitting in a circle in the playroom, the group received a short introduction to the work of the Baltimore Pediatric HIV Program, which highlighted the Program’s case management, weekly support groups for HIV positive individuals and caretakers, and child day care. Richard Matens, program director of the Baltimore Ryan White Title I Office, argued in support of these comprehensive services in the context of Ryan White CARE Act funds: “If there is no money for child care or transport, if there is no place for kids to go everyday, the Ryan White CARE Act money is useless.”

Ms. Debbie Rock confirmed that their work to provide emotional support, to train clients on how to become agents of their own medical care, and to “work with families” is critical in helping clients take their medication regularly, keep their spirits up, and attend their medical appointments.

In her first public speaking engagement, a mother of a young HIV positive woman, whose own son had died of an HIV related illness at seven years of age, spoke to this issue from her personal experience. “Being at home with someone living with HIV, you see things other people don’t . . . You wouldn’t know looking at my daughter that, many days, she doesn’t want to get out of the bed . . . or take her medications, because the side effects are so bad . . . on those days, [the center] is the only thing that gets her out of bed.” Her daughter agreed, revealing that “the smiles on these kids gets me up in the morning . . . and I’ll be here still ten years from now, that’s what I’m claiming.”

A common theme several clients shared was how the Program improved their relationships with medical providers, a relationship many reported as one of indifference or blame. One HIV positive woman explained that the Program taught her how to ask for the help she needed from her provider: “It used to be the doctor only spent three minutes with me, I didn’t know how to ask him to come back. . . Debbie taught me that.” Others reported that their providers had scolded them for not taking their medication properly when they presented with side effects, even though they were complying with the regimen. One young woman was treated so poorly, she said, that the center helped her change providers to one she feels is caring and professional.

Lastly, an HIV positive client shared how the day-care center helped give her the time and space necessary during the day to take care of her health and plan for the future. “I thought I was dealing with the disease before,” she said of her experience before visiting the center, “but the disease was dealing with me.” Meeting with Ms. Debbie Rock, she said, “gave me the break I needed.” The client has now received a scholarship to earn a Master of Social Work degree and she is moving her family into the first house that they have ever owned.

At the end of the visit, Debbie Rock spoke of the challenge she faces with the flat funding of the Ryan White CARE Act in recent years. “We face the pressure of doing more and more with less and less resources,” she reported “The administrative cap, too, is a serious burden,” a staff member said, commenting on the requirement in the Ryan White CARE Act that all administrative costs total less than 10% of the programmatic budget.

For more information on the Baltimore Pediatric HIV Program, go to http://www.bphivp.org/


AIDS Action

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Washington, DC 20036

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