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.
Joey's self abusive behavior largely stems from the fact that he's an intelligent child trapped in the body of a child who cannot communicate, Zeno said. Joey understands what Zeno and others say, but he cannot respond.
“He's not trying to hurt me,” Zeno said. “He's just like, ‘Mom, pay attention to me, you're ignoring me.' He's reaching out, wanting attention.”
Soon after Joey came to live with Zeno, one of his doctors recommended that he receive private-duty nursing care.
Zeno, a single mother, provides half of the paid nursing care that Joey needs each week. Private duty nurses like Zeno are paid an average of $16 per hour.
Zeno said she knows she could make more at another nursing job, but she faces many obstacles in working outside of her home.
“If the system was working perfectly, that's what would happen — he would have two full-time nurses, they would be trained in the beginning, they would know what to do, and they would just run with it, and with that in mind, I could easily work outside the home,” Zeno said. “It doesn't work that way.”
There's a lack of nurses to provide care for children like Joey, she said. Zeno went three months without any nurse stepping foot in her home because they couldn't find anyone.
Also, if a nurse doesn't show up, Zeno is stuck at home. There isn't a day care anywhere near Zeno that could care for Joey. So, each time a nurse calls with car trouble or calls in sick, Zeno has to stay at home.
“If I had a job, what am I supposed to do? Call the hospital and say, ‘Hey I'm sorry, I'm going to be late. I don't know when I'm going to get there?'” Zeno said. “That doesn't work. Another nurse in the hospital would have to cover my shift and stay however late until I showed up.”
Zeno said she worries that if the health care authority changes its rule around private-duty nurses, she will either have to sell her home and move in with her parents, or admit Joey to a home for children with special needs.
Dr. Sylvia Lopez, the chief medical officer of the Oklahoma Health Care Authority, said since she has been at the authority, she cannot recall a time when a child had to be institutionalized because there was a lack of nurses to care for the child at home.
Before proposing the rule change, the agency sought information from other states' Medicaid agencies and found that only New Hampshire, Connecticut and Texas allow parents to serve as private-duty nurses and be reimbursed, she said.
“I want to make it very, very clear that we are not decreasing the services being provided to our patients,” Lopez said. “We want to continue those services. However, we want the caregiver to be a registered nurse or a licensed practice nurse who is not a relative.”
There are a number of issues with relatives providing family members care, she said.
For one, it's a conflict of interest for a parent or other relative to provide care for their children or other family members, she said.
“It's very important in nursing and medical care that a person remains objective and is always first and foremost a patient advocate,” Lopez said. “When you start introducing a lot of those emotional overtones as a parent or a relative, those boundaries tend to get blurred.”
Often, the children who require private duty nursing have several needs and caring for them can be quite time consuming, Lopez said.
By requiring a nonrelative to serve as the nurse, the parent gets a break, which can help prevent burn out among parents, she said.
Generally, families have the same two private-duty nurses coming to their home, Lopez said. These nurses get to know the family, and over time, feel like they're part of the family, she said.
“We expect all nurses to be professional and to provide good quality care,” Lopez said. “I am somewhat concerned by Ms. Zeno's concerns that the staff that's going to be in home either is unqualified or unprofessional because we certainly don't want that, and I think the home agencies would want that either.”