When Ashley Zeno decided to speak out, it wasn't because she was worried about losing her job.
Rather, she was worried that a proposed rule change from Oklahoma's Medicaid agency would disrupt the daily nursing care her son receives.
On Thursday, the Oklahoma Health Care Authority had planned to vote on a proposed rule change that would have required private-duty nurses to not be related to the children they serve.
Zeno serves as one of Joey's private-duty nurses and is reimbursed for the care through Oklahoma's Medicaid system.
However, earlier this past week, the Oklahoma Health Care Authority board determined it would not vote on the measure. Instead, the authority, which serves as Oklahoma's Medicaid agency, will spend the next year studying the private-duty care system, including the rule Zeno was concerned about.
“It isn't about a nurse and her job,” Zeno said. “This isn't about a mom being able to stay home and have an easier life. This is 100 percent about this child and every child that is on private-duty nursing services receiving continuity of care. You cannot reach your maximum potential if you do not have continuity of care.”
The decision came after Zeno was interviewed for a story that ran in The Oklahoman on Sunday.
Each year, the health care authority analyzes which policies it should update. Authority staff members research each rule change before the rules are voted on.
Authority spokeswoman Jo Kilgore said the authority has heard from Medicaid members, lawmakers and Gov. Mary Fallin's office regarding the issue.
“It was not intended to hurt anybody or cause any issues with people,” Kilgore said. “If there are unintended consequences, we want to make sure those are thoroughly vetted and addressed and make sure we're doing what's best for the member.”
Zeno's 4-year-old son Joey has cri-du-chat syndrome, a rare disorder than can cause intellectual disability, low birth weight and slow growth, among other symptoms.
As a Medicaid member, Joey qualifies for private-duty nursing care. He cannot yet speak and instead communicates through high-pitched cries and four words he knows in sign language. He is gradually learning to walk.
Joey is also self abusive and must be consistently watched. He has knocked out his front tooth from banging his head on hard objects and frequently bites his thumbs.
There is a lack of nurses to serve children like Joey, for private-duty pediatric nurses are paid at some of the lowest rates among nurses, Zeno said. Also, there aren't any day cares that Zeno could take Joey to during the day.
This means working outside the home is not an option for Zeno. If the authority were to change its private-duty nursing rule, she would no longer be able to serve as Joey's nurse, she said.
Zeno said she was happy to hear the news, but she doesn't plan to take a break from advocacy. Zeno hopes to stay involved in advocating for Joey and other children who qualify for private-duty nursing care.
“I can't tell you how much a relief it is to know that Joey and the other children will have at least one more year of continuity of care,” she said.