Jamie Riordan's Perry Hall home is equipped with her wheelchair, her hospital bed, more than two dozen medications, feeding and suction tubes -- and a nurse who is never more than a few feet away.
But the nurse might not be there for long to help the 17-year-old, who was born with a birth defect that left her blind, with seizures and unable to walk, talk, swallow or think beyond the ability of a 10-month-old.
For three years, Jamie's mother, Bernadette Riordan, has battled the state over its annual decision to cut off government-financed nursing care and replace it with care from less-experienced home health aides, which state officials say is adequate.
The dispute illustrates the tension that can arise between families and health-care officials as home care for disabled children becomes more common and families grow to rely on a certain level of service.
On Tuesday, for example, state health officials told Riordan again that they would replace Jamie's eight-hour-a-day nurse with a home health aide, a move Riordan's lawyers plan to challenge in Baltimore County Circuit Court next week.
Jamie's mother, pediatrician and nurses say the girl needs the nursing care.
"It's such an injustice -- and a disrespect -- to Jamie," Riordan said of the effort to remove nursing care for her daughter, who has an engaging smile and appears to be delighted to see visitors to the family's immaculate two-bedroom apartment.
Two hundred disabled children in Maryland are cared for at home through a program that allows Medicaid payments for home care rather than institutional care, said Larry Triplett, director of compliance for the Maryland Medicaid program.
"We have 10 children who have similar needs to Jamie's who have home health aides," he said.
Triplett said no other families are appealing the state's decision to eliminate nursing care, but Jamie's lawyer, James F. Rosner, said he is handling an appeal for a Prince George's County child with autism who has had weekend nursing care replaced with a home health aide.
Riordan, a single mother and former elementary school teacher, said caring for her daughter is a full-time job, even with the nurse and with Jamie attending the Maryland School for the Blind when she is well enough.
The family is supported primarily by Jamie's government disability payments and her mother's welfare payments, which will be cut off when Jamie turns 18 next year. Riordan's ex-husband makes their mortgage payments, she said.
Before 1992, Jamie's home nursing care was provided through private insurance. In 1992, she was switched to Medicaid, which is funded through the state.
In 1994, the state notified Riordan that Jamie's home nursing care would be replaced with a home health care aide. Riordan said officials told her that that "Jamie's level of care did not warrant skilled nursing. Their whole theory is that they're not doing this to be cost-effective. They're doing it because it's what Jamie needs."
Twice since 1994, Jamie's mother has appealed to state administrative law judges the state's annual decision to cut off nursing care.
The first judge, in 1994, allowed Jamie to keep her nurse. The second, in January of this year, said the state could switch to a home health aide, but the switch has been delayed by Riordan's legal challenges.
Jamie's pediatrician, Dr. Alan M. Davick, has testified at court hearings that he opposes the cancellation of nursing care.
He said Jamie's medical stability -- which relies on the administration of more than a dozen medicines and liquid food through a feeding tube, along with suction of her throat to keep her from choking -- can be maintained only by a registered nurse.
Riordan said she tried switching to home health aides a few years ago and found that "they had no idea what they were doing. They didn't know what the drugs were and how to administer them."
She said she was particularly upset by a home health aide who asked whether she could smoke while she cared for Jamie, who often has respiratory problems.
Triplett said, "We have steadfastly offered to assist Mrs. Riordan find a qualified home health aide. She has not taken us up on our offer."
Triplett also said that "home health aides are trained to be under supervision of a nurse and are licensed to do [stomach tube] feeding, suctioning and simple administration of medications."
The state's decision "is not intended in terms of savings. All the decisions are made by health professionals," he said.
Riordan said she is skeptical of the state's motives. At this week's meeting with state officials to review Jamie's health care, Riordan said, a doctor hired by the state told her the state wants to switch to a home health aide "for cost containment."
Samuel Colgain, chief of the state's Division of Long-Term Care, who also attended the meeting, said the doctor's comment was misunderstood.
State officials think Jamie needs only a home health aide for daily care. Just because a nurse costs less than institutional care "doesn't mean we should spend public funds inappropriately," Colgain said.
Riordan argues that her daughter needs the more intensive service provided by a nurse.
Recently, as Jamie recuperated from pneumonia, a nurse removed fluid from her throat with a suction tube every few minutes because Jamie can't swallow on her own.
"She's been to hell and back," said Riordan, mentioning Jamie's bouts with epilepsy, pneumonia, and an operation to repair a dislocated hip.
Despite those problems, her mother said, Jamie "is environmentally smart." She knows her nurses and her relatives, and loves to hear children's voices.
In her room, the walls and shelves are filled with angels of cotton and porcelain.
"They protect us," said her mother.
Pub Date: 9/25/97