Disabled Kids Should Get Home Care, Lawsuits Say

By Lauren Mayk, WFLA

TAMPA – Zurale Cali drives two hours a day to see her 5-year old son, kiss him on the cheek and hope for some eyebrow movement that will tell her he knows she is there.

Andi, who nearly drowned during a bath as a baby, has brain damage and is hooked to a device that helps him breathe.

Andi lives in a nursing home in Tampa because his family says the state won’t pay for 24-hour care that would let him live with his two brothers and parents.

“I can’t change what happened to him,” his mother said. “But I believe the law and the state and Medicaid can do a lot of things much better for these children.”

Cali is part of a lawsuit filed in South Florida last week claiming that about 250 children who receive Medicaid live in nursing facilities in Florida because of decisions by the state about their care. A second lawsuit claims several thousand other children could end up in those facilities.

The lawsuits name officials with the Florida Department of Health and the Agency for Health Care, and contractor eQHealth Solutions Inc. All three agencies declined to comment on the lawsuit.

“It’s sort of a dirty little secret no one talked about for a very long time,” said Stephanie Langer, an attorney for the plaintiffs.

The lawsuits claim the agencies’ actions violate several laws, including the Americans with Disabilities Act.

Langer says at-home care would be less expensive than care at a nursing home.

“There’s no reason these children are in institutions other than there’s this system that prevents them from being in their communities with their families,” Langer said.

Langer also says nursing homes make money in the current system and are a powerful lobby. But the administrator of Lakeshore Villas Health Care Center in Tampa, where Andi lives, says that’s not the goal.

“Our primary goal is to provide a valuable community service to our patients,” said Christina Johnson. “I believe if the primary focus was fiscally driven, more skilled nursing facilities would have a similar program.”

A spokesman with the Florida Agency for Health Care Administration declined to discuss how decisions are made about the care for the children and how much it costs. A spokesman with the Florida Department of Health did not respond to questions about the same issues.

Though facilities such as Lakeshore Villas have special areas for young patients, a visitor might pass older residents in the lobby – a striking difference compared with the younger patients with Elmo and Sesame Street toys.

Cali says she drives an hour each way to and from her Spring Hill home to see Andi and do therapy with him.

“Imagine if I don’t come every day, my son is going to stay just in a room, he’s going to stay just in a chair,” Cali said.

The lawsuit says Lakeshore doesn’t provide physical therapy, but the facility’s administrator says all but one of its young patients receives some type of therapy – speech, physical or occupational.

As for where the young patients should receive care, Johnson said “there’s no one answer that will fit all situations.”

Cali praised the staff at Lakeshore, but said she wants the state to pay for more care for her son – and wants to take him home.

Cali and her husband, who is a contractor, have readied their home for Andi’s arrival, which they thought might happen last fall, when they believed their request for more hours of home care would be approved. They have knocked out walls to accommodate Andi’s wheelchair, built a special shower and decorated a bedroom with photos, toys and an “A” on the wall.

An administrative hearing on Andi’s case scheduled for last week was canceled after Langer said it looked like the state was going to agree to approve more hours of care for the child at home. Cali says she is hopeful, but not counting on the approval because of previous disappointments.

According to the lawsuit, some of the children living in nursing homes are in the custody of the Florida Department of Children and Families. The lawsuit claims that they could be placed in medical foster homes if more at-home care were approved.

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