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Disabled Foster Children

October 05, 1995
State Capital Bureau

JEFFERSON CITY _ Few people, you would think, actively would want a child with debilitating medical problems _ problems that demand enormous amounts of time for care and attention.

But in Missouri, there are some who seek just that. One of them is Pat, a foster parent for Missouri's Family Services Division, who agreed to provide a home and family for a child with severe medical problems.

Ten months ago, Pat quit her job as a medical secretary to become a full-time foster parent.

But when she initially became a foster parent, she didn't know the challenges she would face when she was asked to care for a child with two dangerous medical problems.

Pat's full name cannot be used because state law prohibits social services agents from providing information that would identify foster children.

Her foster child was born with spina bifida, when the spinal cord is unprotected at the child's birth. The child also has hydrocephalus, commonly called water on the brain.

"When I first saw this child I thought, 'I cannot do this,' but this child is such a sweet thing," Pat said. "This child has been a blessing to our family."

Becoming a medical foster parent requires countless hours of training. In Pat's case, she and her biological daughter spent two days at the hospital learning how to care for the foster child before it came to their home. The doctors familiar with her foster child's case trained Pat on the child's needs.

In the nine months Pat has had the child, she has gone through continuous training, allowing her to take over more responsibilities from the child's doctors and nurses.

The child has little muscle control because of the spina bifida and a shunt in its head to drain the fluid caused by the hydrocephalus.

The amount of care her foster child requires seemed daunting at first, Pat said.

"At first [the work] drained me," Pat said. "It's hard to adjust to but now it's become daily routine."

Placing all the children with special needs has become more difficult as more children need help than ever before, said Bernadette Nenninger, a social services supervisor at the Missouri Division of Family Services.

"Even the kids in regular foster care are needier than just five years ago," Nenninger said.

The state of Missouri has approximately 160 "medically fragile" children in foster homes certified to care for them. The state asks all foster parents if they are willing to take care of a seriously ill child when they first become licensed.

Lynn Cole, a children's services supervisor at the Boone County Division of Family Services said about 10 to 15 percent of all foster homes are licensed to provide medical foster care.

Because of the significant time commitment medical foster children require, finding families for them is no easy task. Some children cannot be placed in foster homes at all because of the seriousness of their illnesses.

"Without these [medical] foster parents, some would just end up in state institutions," Nenninger said.

Marcia is another medical foster parent who lives in the same area as Pat. Like Pat's child, her foster child was also born with hydrocephalus.

But her child also has cerebral palsy and a growth problem. Because of these problems, Marcia takes the child to Kansas City to receive a special growth hormone treatment.

Marcia's motivation for becoming a foster parent is a bit more personal, however. Her husband was a foster child himself, which led them to return the favor he had been given by his own foster parents.

"People had given of themselves for him, and we wanted to give some of that back to other foster children," Marcia said.

While foster parents are paid by the state for their efforts, Pat says her motivation was never the money involved.

"You do this job because you want to make a difference in these children's lives," Pat said. "If you look at the money compared to the hours you put in, it's not even minimum wage. But a big part of the money goes back into helping the kids anyway."

Marcia agrees, and says there is only one reason to become a foster parent.

"The money you get from the state is adequate, but nobody would do this job for the money," Marcia said. "You do it because you love kids."

Marcia knew she wanted to work with children in some way and so she got a degree from the University of Missouri-Columbia in counseling and psychology with the goal that she could understand the needs of children when she became a mother.

"One of my professors told me that I was probably the only person he knew of that was going through all this school just so I could be a stay-at-home mom," Marcia said.

There is no way to gauge the number of hours medical foster parents spend in training and caring for their children, Pat and Marcia say. Despite the challenges, both say they will continue to be medical foster parents, and, if given the chance, would adopt a child with medical needs.

"It's the most rewarding job I've ever had," Pat said. "In a heartbeat, I would adopt a special needs child."