Everything about 4-year-old Robbie Grimes' life has been a challenge.
He was born with AIDS, was handicapped by the AIDS-causing virus and has been held back by a system that hasn't adapted to fit the special needs of such a child.Liz Grimes called Robbie one of the state's hardest-to-place children when, during National Adoption Week in 1988, she gave a televised speech on behalf of an adoptive parents' support group.
Although she and her husband, Jac, already had four adopted or foster children and had no intentions of adding a fifth, they were moved by the belief that every child deserves to be missed when he dies.
So the couple became the state's first to knowingly try to adopt a child with acquired immune deficiency syndrome, a disease that attacks the body's immune system and leaves victims susceptible to a wide variety of infections and cancers.
``We felt it wasn't fair for Rob to have a shortened life without a family,' Jac Grimes said.
He compares adoption vs. foster care to marriage vs. living together. It's a difference in the level of commitment and responsibility.
A year and a half after Robbie moved from the hospital room that had served as his home for the first three years of his life into the Grimes house, his adoption is close to becoming final. Even when that hurdle is cleared, the couple know others await them.
``We're plowing a lot of new ground,' Liz Grimes said.
Mary Lou Rix, supervisor of adoption services in Forsyth County, said Liz and Jac Grimes, both 36, are well-suited for their pioneering role.
``They're fighters, and that's really one of the things it takes,' Rix said. ``They are the kind of parents who will demand services and help.'
Seventeen youngsters who have tested positive for the AIDS-causing human immunodeficiency virus are in the state's Social Services' foster care program.
Sue Glasby, head of the Children's Services Branch of the state Division of Social Services, said she was apprehensive about being able to recruit foster parents to care for HIV-infected children four years ago but has been pleasantly surprised.
``I think it's great that we're moving away from the notion that there's such a thing as an unadoptable child,' Glasby said. ``We've realized that there are people out there who aren't looking for a perfect child, but for a child who needs a parent.'
Robbie got the HIV virus from his 19-year-old mother at birth, as do about three-fourths of all children with AIDS. His mother left him in the custody of Forsyth County social workers at age 5 weeks after authorities found them sleeping in a truck.
Virtually all babies infected with AIDS at birth have drug-using parents, and Robbie's father was no exception. He died while Robbie was living at Amos Cottage, the pediatric division of N.C. Baptist Hospital. Robbie's mother died of AIDS last month.
The HIV virus affected development of Robbie's brain, leaving him with cerebral palsy, mental retardation and vision problems.
In North Carolina, foster parents receive varying amounts of money from their counties for room and board of children with AIDS. One parent is required to stay at home. Until now, adoption meant that all financial assistance would end.
From the start, the Grimeses said they could not accept the state's burden for paying for Robbie's medical needs. They couldn't agree to jeopardize the college educations and future needs of their other children.
``We basically said we have a lot to offer, but total financial support is not part of it,' Jac Grimes said. ``We said we could offer him a permanent home, a loving environment, and brothers and sisters and people who would miss him.'
The Grimeses are close to signing a contract with Forsyth County that will guarantee support for Robbie's medical needs. Under the agreement, the Grimeses will document the costs of Robbie's needs above what Medicaid pays for his medical expenses. The county then will pay part of the actual cost, Rix said.
``The county's been real flexible with this one,' she said.
In 1988, Guilford County adopted a policy guiding foster care for children with communicable diseases. The policy sets up procedures to protect the child and family and provides up to $1,500 a month for special care. But so far, the county has not had a case of a family wanting to adopt a child who tests HIV-positive. No policy is in place for that.
``We've got to make some changes in the whole system to make it work,' said Helen Alspaugh, Guilford County's supervisor of adoption services. ``We've run into some problems with HIV-positive mothers who have several children. Even if none of the children test positive, we've got to look ahead for their care because it's inevitable the mother will die.'
About 150 children have been treated in the past four years at the Duke Pediatric AIDS Center, the only center in the state approved for clinical trial treatments.
The typical AIDS baby is black, poor, lives at home and has at least one parent with AIDS. He doesn't get his medicine regularly. No one takes him for medical checkups, and he is surrounded by drug and alcohol abuse.
``We've got a bunch of kids in deteriorating situations,' said Chris Weedy, a social worker with Duke's Pediatric AIDS Clinic. ``We're always looking for more foster care and respite care anywhere in the state because we have kids all over the state.'
The U.S. surgeon general predicts that by 1991, 20,000 children will be infected with the HIV virus. Because of insufficient foster-care programs, many children with the virus are unnecessarily hospitalized, with the average bill nationally for each child's care coming to $200,000 a year.
Keeping an HIV-positive child at home costs much less than North Carolina's average of $50,000 to $100,000 a year for hospitalization, Weedy said. But so far, the General Assembly has resisted efforts to increase subsidies for families that care for children with special needs.
``Normal insurance is simply not going to cover it, and we know it's a tremendous cost,' Rix said. ``The legislature thinks if a family adopts, they should take on the medical as well as the emotional needs. They don't understand. Families just can't say: 'I think I'll go broke.' '
The state now provides up to $1,200 a month in adoption assistance for special-needs children identified as eligible, but Glasby notes that sum is a drop in the bucket whenever children have serious physical, mental or emotional needs. All children in social services care are likely to have such needs because they enter through situations of neglect and abuse.
Liz and Jac Grimes describe themselves as politically conservative but say their battle on Robbie's behalf has challenged their beliefs. Trying to change the state's subsidy law to provide more for adoptive families of children with special needs proved to be an obstacle they haven't yet overcome.