Melissa McWhinnie’s 9-year-old son, Kyle, has cerebral palsy and a severe seizure disorder, and suffered a stroke in utero that left him blind and mostly paralyzed. He receives around-the-clock nursing care in his Cibolo home, much of it through the state’s Comprehensive Care Program — without which his mother can't fathom how he'd survive.

With the current budget being negotiated in the Legislature, that’s exactly what pediatric home care providers say some Texas families could face. Staring down the barrel of an estimated 28 percent reduction in the funds they're paid to care for some 3,300 medically fragile children — some $217 million over the next biennium — the companies that employ private-duty nurses to work in family homes say they could be forced to shut their doors, or else dramatically slash what they pay nurses.

If families can’t get the in-home nursing hours they need, or if the nurses they rely on can’t make a living and must move into hospital settings, some of Texas’ most profoundly sick or disabled kids could be forced into institutional settings or even nursing homes.

“We’re already dealing with a shortage of nurses in this area,” said Michael Rose, regional accounts manager for Maxim Healthcare Services, which provides such pediatric nursing. “Parents will literally have to quit their jobs to care for their children.”

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Between the House and Senate drafts of the budget, these in-home nursing providers would see their Medicaid rates — already slashed 2 percent since September — cut another 3 to 8 percent. Coupled with a shortage of funds to cover growing enrollment in the program, the cuts feel more like 28 percent, something providers say is effectively impossible to work into their bottom line. 

Meanwhile, these providers are praying for a last-minute budget rider to protect them from Medicaid rate cuts, something long-term care providers for adults and people with disabilities believe they have secured. The only difference between pediatric care and adult long-term care, providers say, is that the medically fragile kids are lumped into a separate program within a separate agency: the Department of State Health Services' Texas Health Steps, which provides basic care like immunizations and well-baby checks for half a million other kids. The entire program faces $415 million in cuts for the 2012-13 biennium, including the in-home nursing for 3,300 medically fragile kids.  

“Families are not going to be able to care for their kids at home,” said Samantha Meadors, a registered nurse and regional clinical director for Dallas-based Epic MedStaff. “They’re going to be forced to find alternative medical foster homes. Or these kids are going to end up in the hospital to live out what they can.”

Sen. Jane Nelson, R-Flower Mound and a member of the budget conference committee, said she and other lawmakers are “working diligently to restore rate cuts in all health care settings,” though she acknowledged it’s unlikely to spare them all together. “But we aren’t finished yet,” she said.

The medically fragile children served by the Comprehensive Care Program aren't just any Medicaid patients, said Anita Bradberry, executive director of the Texas Association for Home Care & Hospice. They have everything from traumatic brain injuries to seizure disorders. They get anywhere from a few hours of care a week to nearly around-the-clock care. They’re far better off — and cheaper for the state — if they can be cared for in their homes, she said.

“My heart just goes out to these families that are raising these children, who are doing everything they can to give them a loving home and involve them in their community,” Bradberry said. “I just cannot see the state of Texas being so indifferent to that.”

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McWhinnie can't either. She said that if Kyle must be admitted to a nursing home, "they better find a bed for me, too."

"My son has lived because of the love he gets here at home," she said. "He would’ve never made it this long without it."

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