Aid lets parents care for disabled children at home

January 26, 1995|By Sherry Joe | Sherry Joe,Sun Staff Writer

Agnes Levine-Oliver had a nervous breakdown caring for her blind, mentally retarded son at home. Two years ago, the Towson woman reluctantly placed 8-year-old Quori in a Baltimore rehabilitation hospital.

But this September, Quori returned home, his way smoothed by a little-known state program that lets the family use Medicaid money to pay for the boy's at-home nursing care.

Though still in its pilot stage, the program already is helping dozens of children like Quori move out of the Mount Washington Pediatric Hospital, the state's largest rehabilitation and specialty hospital for youngsters with chronic medical conditions.

It eventually could affect hundreds of developmentally disabled children -- some now in hospitals, others at home with parents paying for their special care.

"It's . . . wonderful," Quori's father, Ron Oliver, said of the move. "He's back home."

But critics -- including some hospital officials -- worry that children with severe disabilities might not get the care they need outside of hospitals or institutions.

"These initiatives I've seen in the past are flashes in the pan," said Francis A. Pommett Jr., president of Mount Washington, which the state estimates could lose $5 million a year in Medicaid payments because of the program -- a figure hospital officials dispute.

"I'm very fearful, in the not too distant future, that these supports will fall apart," he said, referring to uncertainties about potential state and federal funding cuts.

The debate is about whether these otherwise healthy but disabled children are ready to move out of institutions and perhaps back with their families -- with possible savings in the cost of their care. It's been made possible by a change in federal rules on how the state can spend medical assistance funds.

"Children should grow up in families, not in institutions or hospitals," said Dr. Lois Meszaros, director of psychological services for the state's Developmental Disabilities Administration. And Medicaid is now allowing that.

This has dramatic implications for what state officials estimate to be hundreds of Maryland children with severe mental retardation, seizure disorders, cerebral palsy and other developmental problems.

Before 1993, the state could not use Medicaid funds for such children unless they also had another chronic illness, such as asthma or a heart problem, or were in a hospital or other institution. Federal rules also set strict income guidelines that made many families ineligible for Medicaid assistance.

So families generally tried to care for these children at home -- until their financial or emotional resources ran out. The families then would turn to Mount Washington or other institutions.

But last spring, after the federal government relaxed its rules, the state began its pilot program by identifying 50 children at Mount Washington as likely candidates to leave the 129-bed hospital. The state contracted with three private agencies -- Kennedy Krieger Institute, The Chimes and the Center for Progressive Learning -- to provide for their care outside the hospital.

So far, 25 children have left the hospital or soon will leave, returning to their own homes or going to foster homes or a three-child group home.

The transfers could save the state hundreds of thousands of dollars in Medicaid payments each year, estimates Dr. Meszaros. The reason: home care can be cheaper than the $87,000 to $90,000 it now costs the state for each child at Mount Washington.

Even when the alternative is more expensive -- $100,000 per child in the case of group-home care -- they may be better off, she said.

Jackie and Michael Golden of Towson have chosen to move their 13-year-old son, Joshua, from Mount Washington to a group home due to open in Towson next month, saying they can't care for the boy at home. Born with cerebral palsy, Joshua is severely mentally retarded and suffers from a seizure disorder. The Goldens cared for him at home until he was 8, sleeping in `D four-hour shifts to monitor his seizures and eventually placing him in Mount Washington.

"We want Joshua to be in a home setting, to have the care he needs and to have the support of his family and care-givers," said Mr. Golden said, whose son is due to share the group home with other boys from the Mount Washington hospital, including Matthew Cammarata, from Fallston.

Matthew is 14, but functions at the mental level of a child 9 to 15 months old -- the result of a stroke and other complications occurring just before birth, according to his mother, Bonnie Cammarata.

Mrs. Cammarata said she and her husband, Ron, cared for Matthew at home for 12 years, and made the "hard decision" to place him at Mount Washington when the Maryland School for the Blind would not enroll him. "I'm probably still going through the grieving process," she said of that separation.

She feels that Matthew will fare better in the three-child "assisted living unit" with a core group of care-givers than in a hospital setting, Mrs. Cammarata said.

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