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Possible Medicaid rule change has Oklahoma mother worried

The Oklahoma Health Care Authority board is considering a change to Medicaid that would no longer allow family members of children who require private-duty nursing to serve as a paid employee taking care of those children.
by Jaclyn Cosgrove Published: March 10, 2013

The first time she saw her son Joey crawl, Ashley Zeno cried.

They were happy tears, appreciating those first three crawls toward independence.

“That's just a miracle, for him to finally be able to move in a given direction to get something he wants,” Zeno said.

Joey has a disorder that requires private-duty nursing care, some of which Zeno, a licensed nurse, is paid to provide through Medicaid dollars.

But a proposed rule change through the Oklahoma Health Care Authority could change that.

The Oklahoma Health Care Authority oversees Oklahoma's Medicaid program and often reviews the rules about Medicaid payments.

Thursday, the Oklahoma Health Care Authority board could vote to no longer allow family members of children who require private-duty nursing to serve as a paid employee taking care of those children.

Health care authority officials argue that the rule change is to ensure objective care is being delivered and that Oklahoma is among a minority of states who allow parents or other relatives to serve as private-duty nurses and be reimbursed.

Dr. Mike Herndon, senior medical director at the Oklahoma Health Care Authority, said it is inappropriate and not permissible for a nurse in a hospital setting to care for a close relative or someone in their custody while that patient is in the hospital.

“Thus it is likewise inappropriate in the home setting where the care needed is that it should be equivalent or likened to the care that the nurse would give in a facility such as in a hospital,” Herndon said at a rules committee meeting Tuesday. “If anything, OHCA's thoughts are that it would be perhaps even more inappropriate since there's lack of routine oversight and input from other nurses and medical professionals that they would have in a hospital.”

Of the 203 Oklahoma Medicaid members who receive these private-duty nursing services, the Oklahoma Health Care Authority's rule change would affect 14 of them, he said.

Joey, who turns 4 this month, came to live with Zeno when he was 1 1/2 through the Oklahoma Department of Human Services foster care system. Zeno has since adopted Joey and his sister, Caitlyn, who's 2 and does not have any special needs.

Joey has a syndrome known by many names — 5 p- (minus), cri-du-chat or “cat's cry” syndrome, which comes from the high-pitched scream children with the syndrome sometimes make.

Children with cri-du-chat syndrome have symptoms that include a cry that is high-pitched and sounds like a cat; downward slant to the eyes; low birth weight and slow growth; intellectual disability; and slow or incomplete development of motor skills, according to the National Institutes of Health.

Intellectual disability is common, and half of children with this syndrome learn enough verbal skills to communicate, according to the NIH.

When Joey first moved in with Zeno, he would simply lie on the floor. His birth mother would leave him alone at home for several hours throughout the day and hadn't worked with him to help him develop any basic learning skills, Zeno said.

Zeno works with Joey on a daily basis, helping him get physical therapy and occupational therapy. Joey is learning to walk using a reverse walker. He communicates through a series of cries and, so far, knows sign language for “more,” “eat,” “bubbles” and “all done.”

“Instead of him beating his head or biting us or hitting us, we're teaching him if he doesn't want to do an activity we're working on, because we do a lot of work on activities for daily living, we make him sign ‘all done,'” Zeno said.

Because of his syndrome, Joey is self abusive. At night, he often bites his thumbs so hard he bleeds. Throughout the day, Zeno frequently pulls Joey's thumb out of his mouth to keep him from hurting himself.

Joey wears a soft butterfly harness around his chest while in his wheelchair so that he cannot beat his head against its table. He will sometimes pull out his hair, or sometimes, Zeno's hair.

If he's frustrated and sitting on the couch, he will sometimes try to beat his head on the floor. He's missing a front tooth from this type of behavior.

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by Jaclyn Cosgrove
Medical and Health Reporter
Jaclyn Cosgrove writes about health, public policy and medicine in Oklahoma, among other topics. She is an Oklahoma State University graduate. Jaclyn grew up in the southeast region of the state and enjoys writing about rural Oklahoma. She is...
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