A fraying lifeline to neediest children

Cuts threaten center; families rally support

(Globe Photo/Michele McDonald ) Shannon Booker, left, with her son Muhammad at the SPARK Center, a program for Boston's most vulnerable children on the grounds of the old Boston Chronic Disease hospital in Mattapan.

Shannon Booker kneels in delight at her son Muhammed's tentative "steps" in a specialized walker. "You can do it!" she coos. Muhammed lifts his small face toward her. He's blind and nearly deaf, can't walk or talk, but he knows his mother is there. He rolls tentatively in her direction.

If Booker is excited, so is the staff at the SPARK Center, which serves the city's most vulnerable children. They bought the walker for Muhammed and others like him, and they have taken turns going up and down the halls with the 2-year-old. Located on the grounds of the old Boston Chronic Disease Hospital in Mattapan, the center serves another 100 children like Muhammed. Most are poor and ill. Some are without parents or homes. They have chronic or terminal conditions, developmental delays, or serious emotional issues. Some have been abused or neglected. Nearly all are referred by their doctors.

But because of recession-related budget cuts, the center next fall may have to reduce enrollment and cut hours for the children who remain. Already, art and music therapy have been eliminated, and many of the 21 employees have been given fewer hours.

Social services throughout Massachusetts are reeling from budget cuts and dwindling donations, including mental health legal aid and programs for families and seniors. The SPARK Center recently learned that it will lose 27 percent - about $406,000 - of its $1.5 million annual budget next fall when Boston Medical Center withdraws its financial support because of a $114 million reduction in state aid. SPARK also faces decreased funding from other sources, including a 50 percent hit from private donors and a decline in foundation grants.

Though staffers aren't yet certain of the total budget cuts, they're preparing for more bad news. "It will be crippling," says director Martha Vibbert.

For 20 years the program has kept a low profile because of patient confidentiality, particularly surrounding HIV/AIDS. In 1988, the center opened as a residential program for children infected with the virus. In 1992 it moved from Boston City Hospital to Mattapan and soon switched from residential to day care. Then called the Children's AIDS Program, it provided educational, medical, and mental health services for the epidemic's youngest victims; most had also lost a parent to the disease.

Five years ago it changed its name to the SPARK Center (Supporting Parents And Resilient Kids). The change reflects a medical reality: Fewer infants are infected with HIV nowadays, so the program also serves children with other chronic conditions such as metabolic problems, serious asthma, neurological disorders, diabetes, cerebral palsy, and growth issues.

Because of the budget cuts, parents and children for the first time agreed to speak to the Globe about what the center means to them. "This has been a huge blessing for me, because Muhammed is a child who needs 24-hour care, and I can get some respite here," says Booker, who has two adult children and is in the process of finalizing Muhammed's adoption. The boy has a rare abnormality called bilateral schizencephaly, in which there's a cleft on both sides of the brain.

"We have to save this school," Booker says. "All of us need support when children have major disabilities."

In a written response to questions from the Globe, Elaine Ullian, chief executive of Boston Medical Center, expressed regret at the planned cuts and the "devastating effect" on families. "It is unfortunate that we are in this untenable situation that so negatively impacts the safety net and ultimately the families of the Commonwealth who are most in need of assistance," she said. She added that BMC is committed to working with SPARK in "crucial, nonfinancial ways," though she did not elaborate. Many services at Boston Medical have been reduced, including a Birth Sisters program that matches a low-income pregnant woman with a mentor.

In a cheery building that resembles a house, SPARK provides year-round services: day care, medical help, meals, counseling, therapies, transportation. The recipients range from newborns to age 24. For younger children, there's a full-time preschool program, and for those 6 to 18 - most of them HIV-positive - an after school and summer program. For HIV-positive people ages 18 to 24, and for those who have lost one or both parents to AIDS, SPARK offers job training, peer support, and counseling.

Though the infant infection rate has decreased, staffers are seeing a new group of teens infected with HIV through sex or drugs. The virus in youths is treated as a chronic disease, and they must take medication for the foreseeable future. Vibbert says it has been a problem to get teens with HIV to stay on their medication, as many resist taking them and there is still shame surrounding the diagnosis.

"The older kids have fallen off the radar screen because they're no longer babies," Vibbert says. Many of them have been with the program since they were young children.

Alice, an 18-year-old high school senior, was born with the AIDS virus and lost her mother to the disease. She has been coming to the program since she was 9. These days, Alice - who did not want her last name published because few know of her condition - comes in after school, grabs a snack, does her homework, goes on field trips, hangs out with her friends, and is reminded by a nurse to take her medication. (Though SPARK provides the program, the youths' medications are covered by Medicaid or private insurance.)

Alice works in the office for a small stipend. "I don't know what my life would be like without this place," she says. "This is where I can be myself."

Jason Wilkins was one of the first children to come to the center 20 years ago. Now 24, he has graduated from the young adult program and is a mentor to other SPARK children, a paying job at the center that he loves. "This has been a second home for me," says Wilkins, who lives in Dorchester with his foster father. "It's helped me be the person I am today."

Dr. Jack Maypole, a special needs pediatrician at Boston Medical Center, treats many of the SPARK kids. Some have had tracheotomies or are on ventilators or feeding tubes. "The families are usually overwhelmed," he says. "I do believe this enhanced care keeps them out of the ER, out of the hospital, and at home where they belong. It allows their parents to go earn a living or to get some oxygen and recharge their batteries."

As medical breakthroughs keep such high-risk children alive, their numbers will continue to grow, he adds. "There's not much of this kind of care, and it [the budget reduction] is making me heartsick. If this goes away, we are really bereft."

Vibbert says she's determined to keep the program running. "If we don't, the costs will be greater," she says, adding that some parents would be forced to leave jobs, losing health insurance and housing.

Bella English can be reached at english@globe.com.