FOSTER: Caring for Ill, Unwanted : Pain and Love : Strong Hearts Sustain Foster Mothers of Catastrophically Ill Children

She has five foster children and probably five times the problems of the average parent.

Manuel, 4, has had two heart operations and is deaf.

Stephanie, 4, was physically and sexually abused by her stepfather and suffers from lingering spine and kidney problems.

Johnny, 3, comes from a home where drugs were used and is now up for adoption.

Alicia, 2, was abused by her natural parents and carries deep psychological scars.

But the real heartbreaker, Vera A. Benavides said, is Robert, 2, a victim of cerebral palsy, mentally retarded and blind. Robert had been in two previous foster homes, but those parents had no medical training and could not cope with him, she said.

Benavides, 42, of La Puente, is one of about 50 foster mothers who attended a recent training session at City of Hope Medical Center in Duarte for foster parents who have taken in catastrophically ill children.

Can Be Devastating

Dealing with such a child can be devastating for any parent, and foster parents face additional problems. They must handle routine parenting problems as well as cope with doctors who don’t take them seriously and natural parents who interfere.

They must spend hours filling out forms and even more time driving children to medical clinics and sitting in doctors’ waiting rooms.

And all the while, they fight a widespread image of foster parents as people who take in children strictly for the money.

The training session, “Parenting the Medically Needy Child,” was sponsored by the medical placement unit of the county Department of Children’s Services.

It was the first of a series of sessions aimed at helping foster parents provide homes for sick children whose natural parents cannot cope with the situation, said Judy Flicker, director of the medical placement unit. Another session, focusing on improving the foster child’s self-image, will be held July 23 at the Arboretum in Arcadia.

According to Flicker, it is impossible to determine how many parents turn to outside agencies for help with seriously ill children. Her unit is working with about 100 foster parents, but some cases within the Department of Children’s Services do not come to her unit’s attention. Many others are handled outside the county agency, she said.

One woman who has taken on more than her share of problems is Benavides. A single mother with some nursing training, she has taken in foster children for 16 years.

She has three natural children, ranging in age from 16 to 22, and a 5-year-old adopted daughter.

“I got into it by accident when a neighbor told me he was putting his son in reform school and two weeks later the boy showed up on my doorstep,” she said.

“I first worked with hard-core juvenile delinquents and then the county asked me to work with handicapped children.”

Benavides said it is difficult to explain why people are willing to take in handicapped children.

“Most of my friends are foster parents of these children,” she said. “We share the problems and the experiences and comfort each other when a child dies.

‘We Like Challenges’

“A lot of us have personal reasons why we are involved. Some of us came from large families and want to surround ourselves with these children nobody wants. We like challenges. And maybe we are selfish--maybe we feel we are leaving a better world behind when our lives are over.

“We do it because we care. I just can’t express it,” she said.

“At Christmas I always hear from the kids who have come and gone and it is the best present I get, knowing they are loved and cared for,” Benavides said, thumbing through a wallet filled with pictures of foster children past and present.

Despite the rewards, there are serious problems, not the least of which is money.

“People think we are in it for the money,” Benavides said. “But this is a full-time job and there are no vacations. I don’t make any money from it.”

$280 to $946 a Month

According to Flicker, foster parents of sick or disabled children are paid between $280 and $946 a month for each child, depending on the severity of the illness and the age of the child. The allotment is supposed to cover all expenses, excluding medical bills, which generally are covered by Medi-Cal, she said.

But Benavides says the amount she receives provides only enough to get by and she often dips into her own pocketbook to cover extras, such as toys for the children. She has to hire help, including a full-time housekeeper who oversees the household when she is away and an aide who helps with the children and housekeeping chores.

Benavides said her days are busy, taken up with driving children to doctors and clinics, then waiting, often hours, for them.

“I take the children as far away as Childrens Hospital in Los Angeles,” she said. “Wherever the needs can be met--that’s where we go.”

Her day doesn’t end when the children go to sleep.

Plenty of Paper Work

“When I am at home I am overloaded with paper work that the county requires,” she said. “I have to provide lists of services we provide, doctors and schools the children attend, how they are transported, the names and duties of my household personnel, assessments of the future of the children and how the money is being spent. I have to provide receipts for everything I buy.

“And I have to be here for visitations from the children’s natural parents. That information also has to go to the county.”

She has also appeared in court, testifying in a case involving one of her abused foster children.

“I would like to be able to drop everything and take the kids out, but there just isn’t time,” she said.

One of the biggest problems for foster parents is a state law that requires the Children’s Services Department to try to return the child to its natural parents within a relatively short period.

“Because we are required by law to try to return the child to his biological parents within 18 months, we set up visitation schedules so the children often go back and forth between two sets of parents,” Flicker said. “And we try to involve the natural parents in visits to clinics and hospitals so they understand the needs of the child when he returns home.”

Takes a Special Person

If it is not possible to return the child within 18 months, the Department of Children’s Services tries to persuade the natural parent to agree to adoption.

Flicker says it takes a special person to assume responsibility for an ailing child.

“Some have been foster parents a long time and then specialize in caring for ill children,” she said. “Some have medical training. These foster parents are strong because they have to be able to handle the emotional as well as the medical problems. They are also sophisticated and their devotion is incredible.”

Benavides, who cannot recall exactly how many foster children she has had over the years, said, “They come and go. The longest I had one was for four years and it broke my heart when he left. But he wanted a daddy.

“Most of mine have eventually been adopted, but a lot of biological parents go into limbo and don’t allow adoption, even though they don’t want the responsibility of a handicapped child. Some visit to see how the kids are and some walk away from the situation.”

Some Special Problems

Most of the women at the City of Hope session seemed confident about their ability to handle routine problems of being a parent. It is the special problems--doctors who tend to ignore them and natural mothers who interfere--that concern them.

“When we are dealing with a very ill child, medical personnel don’t pay much attention to us because they think we are just foster parents,” said one mother, who asked not to be identified. “But we have bonded so closely to this child. We are a family and very much involved with the children.”

Another mother also criticized the medical profession, saying, “I develop a gut instinct when something is wrong, but the doctor always wants to go back and ask the biological parent. The doctors don’t listen to the foster parents.” Foster parents are barred by law from making medical decisions concerning the children they care for.

The answer, said a third mother, is that the foster parents have to persevere and be strong enough to tell the doctor they disagree with his decision.

Respected as ‘Professional’

Another problem, said Morris Powazek, director of pediatric psychology at City of Hope, is a lack of consistency in behavior toward a child if the natural parents disagree with the foster parents on important issues. He compared it to situations that occur in divorce.

But one foster mother said she had found a way to deal with this problem. “I have had terminally ill children for 18 years and I don’t have much trouble in dealing with the biological parents because they regard me as a professional,” she said. “I’m a professional to the biological parents but a parent to the child.”

Despite the problems, Benavides said, “I’ve never regretted it. All these kids have given me so much. I’m very much involved with the kids even though (social workers) say you shouldn’t be. Each child has something special no matter what the handicap.

“It’s not a picnic, but the love and caring between me and the children is always there.”