A program at Castle Medical Center that provides in-home services for medically frail children will shut down at the end of the month, leaving about 60 nurses looking for jobs and 40 families scrambling to find care for their kids.

The Castle Community Care pediatric program is considered one of the best in-home pediatric nursing programs in the state.

Castle officials blamed the closure on low Medicaid reimbursements, and said the program was losing money.

According to a statement last night from the hospital, Castle said it had attempted to renegotiate rates with the state Department of Human Services, which oversees Medicaid reimbursements, but the hospital was told any increase proposals would not be considered.

Castle's statement was released at press time last night. It was not possible to get comment from the state.

The Castle statement said: "Since Castle Community Care began in 2000, the reimbursement rates for Medicaid Waiver Services have remained the same. Due to the escalating costs to provide care, combined with low reimbursement rates, Castle has been operating at a loss."

Nurses and families said they were notified by phone Thursday and Friday of the closure. Castle said it would also be meeting individually with nurses to "discuss their options."

The hospital will also work with state-contracted case managers for the families to "transition their care to another provider," the statement said. "Castle Medical Center remains committed to the highest level of care for all its patients and to the community it serves," the hospital said.

The shutdown is a double whammy for Jarme Stanley, who works for Castle Community Care and whose 11-year-old gets services through the program. She is trying to look for a new job while also working feverishly to find a new in-home provider.

Stanley's son is paralyzed from his chest down, needs help breathing and eating, is mentally delayed and prone to seizures.

She said it is the families who will be most affected by the closure. It will break their routine and disrupt their children's lives. Many of the children and parents have known their nurses for years and feel comfortable around them, she said.

"Some of these parents, the only break they get is when we go there," Stanley said. She added finding new programs to take the kids won't be easy. There are at least three other agencies that provide in-home services for children, but they are nearly at capacity thanks to a nursing shortage and a critical need, she said.

Stanley said about one-third of nurses who will be laid off work solely for the program. Others also have jobs elsewhere. Community Care also offers a program for adults, but there is no indication that it will close.

Kailua resident Rhonda Roldan said she is worried about her 7-year-old, Frankie, who needs around-the-clock nursing care.

"Our schedule is planned around our son," she said. Roldan gets up three times a night to check her son's breathing. He is on a ventilator when he sleeps and uses oxygen during the day.

Roldan has been using Community Care for six years, and said her son considers his nurses part of the family.

One of those nurses, Bonnie Caddell, has known Frankie since he was born. "I've dedicated my everything for this child," Caddell said. "I know all the ins and outs of his care, his progress."

The alternative to homecare for many parents is placing their children in hospitals or facilities or cutting back on work hours.

Both options are expensive, and sometimes impossible.

Malia Cross, a full-time nurse for Community Care, said the children helped by the program are "fragile beyond belief."

She is worried what will happen to the children she serves, who can get critically ill quickly and react adversely to change.

"When you change things that dramatically, you're not going to get" the continuity of care, Cross said yesterday.

NURSE PAYS TO WORK

The closure stunned Denise Callaghan, a nurse who joined the program while her husband, who is in the Marines, was stationed in Hawai'i. She continued to pitch in even when he was restationed and the two moved to California. Every two months or so, Callaghan flies back to O'ahu to work with the program.

She pays for the ticket out of her own pocket.

"That's how important this program is to me," she said.

Callaghan was planning to come back to O'ahu in early August to work with Community Care, but her visit will be too late.

Still, Callaghan said she has made lifelong friendships through the work. "I keep in contact with some of the families," she said. "I will see them out of my own pocket."

Reach Mary Vorsino at mvorsino@honoluluadvertiser.com.