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Medicaid policy forces a difficult choice

The program won't pay for nurses for children needing constant care if they're in school, forcing some to stay at home.

By JUSTIN GEORGE
Published September 17, 2006

TAMPA - In the house where a little girl has taught a family patience, perseverance, unconditional love and selflessness, frustration now resides.

Anna Lewin sat at her kitchen table recently in her house near Palm River. Her eyes filled with tears, and her words were anxious as she talked about the care of her 7-year-old niece.

"My greatest fear, with all the cuts Medicaid has made," Lewin, 34, said, "is eventually, I'll have to put her in a facility where she'll deteriorate."

She was talking about Elaysia Taylor-Balls, playing on the tile floor in a nearby bedroom, a nurse watching her every move. Medicaid pays for a nurse to monitor the active child for 12 hours a day and agrees that constant supervision is needed. But this month, the government program surprised Lewin, Elaysia's guardian, with a new policy. It said a Medicaid-reimbursed nurse could watch her all day - unless she went to school.

Medicaid would not pay for a nurse during school hours, though it would pay if Elaysia stayed home.

To Lewin, the policy creates an arbitrary cutoff line of where Medicaid approves care.

"Unfortunately, the person stuck in the middle is Elaysia," she said.

Brandi Brown, deputy chief of staff for the Agency for Health Care Administration, which administers Medicaid in Florida, said case law prohibits Medicaid from paying for private-care nurses at schools. But late Friday, Brown said, the agency temporarily lifted its prohibition after officials found out some students such as Elaysia weren't attending school because of it.

The agency is working with Hillsborough and one other school district that have yet to deal with the new policy. State officials maintain the districts are supposed to care for disabled children while they're at school.

Hillsborough school officials are reviewing the policy, but in the meantime, they say, they can care for Elaysia using their existing medical staff.

But that would mean she wouldn't get the one-on-one care Lewin thinks she requires.

"I know Elaysia's health history," Lewin said. "I know her problems. I know what it takes to maintain her."

About 20 Hillsborough students are affected by the policy change, and Lewin isn't the only guardian keeping her child at home while the school system searches for solutions.

"We have a number of medically fragile children in the district, and many are affected by this new rule, this new policy by Medicaid," schools spokesman Steve Hegarty said. "We are reviewing all of those cases."

The Pinellas County School District chose to pay the nursing bills for about 20 students when Medicaid drew its line, schools spokeswoman Andrea Zahn said. Pasco County officials, meanwhile, bolstered their nursing staff to better monitor seven disabled students affected.

Elaysia was born with Angelman's syndrome, a neurological disorder that causes seizures and severely impairs speech and movement. She also has chronic obstructive pulmonary disease, which causes the gradual loss of the use of her lungs. She has sleep apnea, osteoporosis, asthma and Lennox-Gastaut syndrome, a severe form of epilepsy. She can't walk or talk. She is fed medicine and liquid formulas through a stomach tube. She is prone to suffer as many as 100 seizures a day, something medication quells.

Lewin's then-16-year-old sister gave birth to Elaysia but couldn't care for her. When Lewin noticed the girl's health deteriorating, she took custody of her when she was 14 months old.

Medicaid helps Lewin and her husband, who care for four other children, pay for Elaysia's care. It pays for about a dozen medications, which can cost as much as $600 per prescription. It pays for occupational, physical and speech therapy. It pays for a nurse's care for 12 hours a day.

Until this month, a nurse accompanied Elaysia to Lopez Exceptional Center in Seffner. The school has two nurses on staff and another who visits periodically, but Lewin said they're not enough.

Once, she said, she sent Elaysia to school without a nurse, only to have medicine the girl should have been given returned home.

"If it was my child, I wouldn't be comfortable with the situation," said Laura Buck, nursing director of Advanced Nursing Solutions of Clearwater, which oversees Elaysia's care.

"This child is on 8, 9, 10, 11 ... 24 medications. So you're counting on somebody to give these medications, plus monitor for any changes in respiratory or neurological symptoms.

"A lay person won't realize that if she's twitching her hand, she's probably going to have a seizure. Or if her nose is flaring slightly, she probably needs oxygen."

So now Elaysia sits home, away from school, which provides disabled children a range of learning opportunities including therapy.

The same goes for Natrina Brown, 6, of Gibsonton. She has vision problems, cerebral palsy, asthma and is fed through a tube. Medicaid pays for 20 hours of nursing care a day - but not when she's in school, said her guardian, Nathaniel Brown, 57.

"You're locked in," he said. "You can't do anything."

Another case is Paige Snedeker, 13, of Seffner. She has a neuropathy of unknown origin, which affects her sight, hearing and breathing. Though physically disabled, she is mentally sharp and needs to be in school, her mother said. Medicaid pays for 22 hours of nursing care a day. But not at school, her mother, Julie, 41, said.

A nurse is Paige's "hands, eyes, her everything," Julie Snedeker said.

Her school is giving Paige her lessons at home, and Snedeker is optimistic a solution is ahead.

Hegarty, the district spokesman, said Hillsborough school officials will meet with parents in each case to develop specific educational plans for each child.

"It might" include hiring more nurses, he said.

In the meantime, the situation is taking a toll on Lewin, who filed for bankruptcy last year after she lost her job - because she was tending to Elaysia's appointments and emergencies, she said. Lewin now works at a Brandon group home, taking care of children like Elaysia, and said now she needs to spend more time at home figuring out Elaysia's therapy needs.

She has watched the girl rebound from four surgeries. She has seen her grow from someone who couldn't sit up or vocalize - "a shell, nothing there" - into the child who tugs at her necklace and reaches happily for her embrace.

"It really does leave you at your wit's end," Lewin said of the situation.

"You try to do what's best for her."

Justin George can be reached at jgeorge@sptimes.com or 813 226-3368.

[Last modified September 17, 2006, 00:34:15]