Health news Health & Medical News Kennedy Krieger program trains parents to foster children with special needs

Story Photo: Kennedy Krieger program trains parents to foster children with special needs
Kennedy Krieger program trains parents to foster children with special needs

For Jason and Hollie Costa, falling in love with feisty 5-year-old Daeonna Smith was the easy part. Deciding whether to parent a child with special needs, however, tested their resolve.

The Columbia couple didn't know anything about spina bifida, the spinal condition that Daeonna was born with that left her with no feeling below the waist. They wanted badly to become foster parents and eventually adopt, but they worried: Could they meet her needs? Could they handle the inevitable stress of her condition?

The Costas found answers at Kennedy Krieger Institute's Therapeutic Foster Care Program, which trains parents to foster or adopt children like Daeonna with the support of a team of medical specialists, social workers and parents like them. Since 1986, the program has matched parents with children with severe medical conditions, emotional and behavioral difficulties, and developmental disabilities. It's one of seven foster programs statewide that serve kids with such complicated medical problems they are deemed "medically fragile," according to the Maryland Department of Human Resources.

Children are referred to Kennedy Krieger's program by the state and often the city's social services department some 70 percent of children placed in the program come from Baltimore. Their needs are complex. Some have been abandoned by birth parents, many have multiple health problems and nearly all have experienced some kind of trauma.

For foster families, the challenges are great so much so, that these days the program has a critical need for would-be parents. Once they apply, parents attend a three-day introductory training program. When demand is high, Kennedy Krieger typically offers four sessions a year with upward of 30 people per class. But since last July, the program has trained just nine families.

The dismal economy may be in part to blame for the lack of interested parents, said Stephanie King, a social worker and manager of Kennedy Krieger's program. While the program gives parents a tax-free stipend plus room and board payments to cover a child's expenses, it won't place children with people struggling with the basics or who are in debt, she said.

"On top of the typical issues in foster care, these kids have special problems," she said "There are lots of medical appointments, lots of therapy, lots of special understanding. And that requires training that is very different from what you might do with a typically-developing child."
But with help, parents gain confidence and skills to be great caregivers, said King. In fact, many families find fostering a child with special needs such a joy that they become repeat foster parents.

"We've had people come to us and say, 'Oh my God, I don't think I can do that,' and not only are they successfully doing it, they go along to train other parents to do it," said King. "I have families who have done this for 20 years."

Interested parents go through a lengthy assessment process, including an initial three-day training session and four to six home visits. Once approved, parents attend 24 hours of additional training each year. Sessions focus on how to build a rapport with a child's teacher, coping with grief, loss and illness and, for the stressed-out parent, an entire session on how to breathe. Parents are matched at the end of the program with a child based on a family's strengths and a child's need.

Once a child is placed, families meet routinely with a child's doctors at Kennedy Krieger clinics and twice a month with a social worker. A 24-hour support line is available for emergencies. And when parents need a break, they can have their child stay with another foster family for a few days.

When the Costas started the process last year, the details were overwhelming. They learned Daeonna had been in foster care since she was less than a year old, and the Costas would be her third family. Daeonna used a special stroller to get around but she couldn't maneuver it on her own. The Costas would need to take her to physical, speech and occupational therapy and to Kennedy Krieger's spina bifida clinic regularly. At home, they would need to do daily stretching exercises and to strengthen Daeonna's leg muscles. And they would have to learn how to change her urinary catheter several times a day, teach her to dress herself, to use a wheelchair and, one day, leg braces.

The couple also had another child, Benjamin, 8, whom they adopted from Ukraine years ago. And then there was the matter of Hollie Costa's own condition multiple sclerosis. While not debilitating, the condition causes occasional episodes of extreme fatigue.

"Choosing a child that had disabilities worried me because at some point, there is [the] real possibility of me having to take care of not just a child, but my wife," said Jason Costa.

But Daeonna, whom everyone calls Di Di, charmed him upon their first meeting at an Italian restaurant. Wide-eyed and grinning, Di Di climbed into his lap, promptly asked him his name and complimented him on his pink tie. While Hollie and Di Di's social worker discussed specifics, Jason Costa spent the afternoon coloring and laughing with his soon-to-be daughter.

"Here was this energetic little girl, with smiles all over the place," he said. "I couldn't help but enjoy her and be engaged. She's just such a beautiful little girl."

Since moving in with the Costas last summer, Di Di learned to master her new wheelchair, and on a recent morning climbed into it on her own and spun around to the applause of her mother and guests. The chair is fun, she said, but she's eager to get "leg bracelets."

For now, when Di Di is not in her chair, she gets around by creeping on the floor using her arms to propel herself forward, something Hollie Costa hopes she will grow out of.

"I'm a little hard on her, I'll admit it," she said. "I want to teach her to be independent. I want her to know she can grow up, go to college, get married, have a life, and there's nothing stopping her."

The Kennedy Krieger training gave them confidence that they were the right family for Di Di.

"People kept saying, 'You can do this, we're going to be there for you and support you'," Hollie Costa said. "They use this term 'medically fragile.' But once you meet these kids, you see they aren't going to fall apart."

What sets the program apart, say those who work closely with it, is the enduring support foster families receive throughout a child's placement.

"The great thing is they offer this kind of community approach, so that parents get together and share ideas, challenges and experiences," said Molly McGrath, director of the Baltimore City Department of Social Services. "Numerous times, I have seen some of the kids that were the most complex kids that some might say would be in a hospital forever and I've watched them go to homes with parents for years and years. They are in thriving, loving homes."

Not all parents are hesitant. Deborah Barnes of Baltimore has fostered three children over the past 16 years, all boys, all of them with behavioral problems and wrenching stories of abuse and neglect. Where other foster parents steer clear of teenagers, Barnes welcomes them. "I prefer kids over 10 years old," she said. "I'm a talkative person, and we need to talk things out."

The group sessions and network of other parents have been a lifeline for Barnes.

"You would be surprised: The things going on in your home seem hard, but other parents have the same issues," said Barnes.

That network helped her get through the toughest moments with Kwanmay Harris, now 20, whom Barnes took in 10 years ago. Once an angry child, who didn't smile his first year with Barnes, Harris is no longer on medication for depression and attention-deficit hyperactivity disorder, lives on his own and works as a security guard.

"Whenever I need motherly advice. I call her," Harris said of Barnes. "She's my mom."

Source: By Kelly Brewington, The Baltimore Sun

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