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.”