Castle closing kids' home care program

Castle plans to end a program that helps disabled kids stay home

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A respite care program at Castle Medical Center for families of disabled children faces closure this month due to a shortage of state Medicaid funds.

About 40 families with children would be affected.

Castle said it was losing money because Medicaid reimbursements for the program have remained the same since it started in 2000, while the cost to provide care has escalated.

Affected are patients with severe disabilities such as Kodah Kalawa, who has arthrogryposis, a disease that leaves his muscles weak, joints stiff and diaphragm paralyzed.

With physical therapy, the 11-month-old now can turn his head, wiggle his fingers and kick his legs. Doctors have warned that if Kodah does not grow strong enough within three years to get off a ventilator, he could be dependent on it for life.

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Five months ago, Kodah Kalawa left the hospital, unable to move because a prenatal disability weakened his muscles, stiffened his joints and paralyzed his diaphragm.

Now the 11-month-old turns his head, wiggles his fingers and kicks his legs, said his mother, Stacey Carvalho. She attributes his progress to a respite care program at the Castle Medical Center.

Castle's Community Care program provides home care for disabled children, helping them leave the hospital sooner and relieve some of the burden on the families.

However, Castle announced last week that it will end the children's program on July 31 because of insufficient Medicaid reimbursements from the state.

The state says it is still working something out with Castle.

"We're still in negotiations," said Derick Dahilig, Department of Human Services spokesman. "We're trying to negotiate some way so they can continue."

It is one of nine programs on Oahu that helps medically fragile children, Dahilig said.

Castle Medical Center said in a news release that it was losing money on the program because costs to provide care have risen, while state Medicaid reimbursements have remained unchanged since the program started in 2000. An adult care service that is also part of Community Care has not been affected.

The state Department of Human Services declined to increase the Medicaid reimbursement rates, forcing the program to close, the news release said.

A Castle spokeswoman did not have any further comment Monday.

Castle said its staff will work with the nurses and aides in the program to discuss their options or move them to other departments in the hospital.

About 40 families in the program will be transferred to other programs through state case managers.

Malia Cross, an aide in the program, said some of the children need intensive care, such as a 3-year-old girl with spinal muscular atrophy who can only move her eyes.

"It's really a wide range of needs for these children," she said, adding that changing providers creates additional stress for the families. "It's a big trust level. You're leaving your child in the hands of a stranger."

Lori Lee, a nurse in the program, met Kodah in the hospital and took a pay cut so she could help him go home. Now she cares for Kodah at his home in Waimanalo.

"The goal was to get Kodah home," she said. "They (his parent's) love their son, they want him home."

"The state is keeping us against the wall," said Carvalho, Kodah's mother. "Castle Medical Center was there to give us the nurses so that we could fulfill our dream of bringing our son home."

She said her son needs constant physical therapy to learn how to use his body, therapy he did not receive while in the hospital.

"It's hard for us to think ... he may end up back in the facilities or back in the hospital, not doing good, not having one-on-one time, not progressing," she said.

Doctors warn that if Kodah, who has arthrogryposis, does not grow strong enough to live without a ventilator by the age of 3, he could be dependent on it for life, Carvalho said.

"This could change his future," she said. She said her options will be to put him back in a hospital or "struggle our butts off to keep him home."