Michael Copeland takes tiny steps under watchful eyes.
A team of medical professionals analyzes how the 3-year-old never touches the floor with one of his heels. This boy, whose favorite storybook is "The Little Engine That Could," has come a long way since he was born 12 weeks early weighing less than 2 pounds.
He suffered from apnea that was so severe that he would stop breathing up to 10 times a day when he first came home from a neonatal intensive care unit. He also had stomach issues and sensory perception problems.
Now, he's getting ready to start preschool because of the help he has gotten from the people with the watchful eyes at the Vanderbilt NICU Follow-Up Program. Vanderbilt runs one of five Tennessee Regional Perinatal Centers that share a $4.5 million annual grant -- money that won't be there under the proposed TennCare budget on Gov. Bill Haslam's desk.
The centers in Chattanooga, Johnson City, Knoxville, Memphis and Nashville help other, smaller hospitals prevent birth complications, aid in the diagnosis of babies with special needs and help children such as Michael overcome their challenges. Their work has been funded with a $2.25 million annual TennCare grant, matched dollar-for-dollar with federal funds.
Dr. Alan Kohrt, head of T.C. Thompson Children's Hospital at Erlanger in Chattanooga, said missing out on the money could be "a significant financial hardship" for the NICU program in the beleaguered hospital. Currently about 125 children who graduate from the neonatal program enter the follow-up program every year.
The grants for NICUs were started in the 1970s, when Tennessee had infant mortality rates that were similar to those in some Third World countries, Kohrt said. Rates everywhere have improved, but Tennessee still lags, he said.
Outreach and education to surrounding hospitals would be the first to go, followed by nurses and assistants who are paid with the grant money.
"I can tell you that it's a significant amount of money. Early this year, the TennCare program changed the payment structure on what was called CoverKids. And that meant that Erlanger had a reduction of about $1 million because they changed the payment rate," Kohrt said.
He said the new cuts could cost the hospital up to $750,000.
That is a deep cut for Erlanger, which is just starting a financial recovery process of its own, he said.
"I understand the governor's position. We would all like to be in a position where we didn't have to make cuts. Unfortunately for us here, every cut hurts very deeply," he said.
TennCare sent a budget to Haslam without the grant program along with other funding cuts after the governor directed all state agencies to identify how to reduce costs by 5 percent -- something he has done every year since he took office. Haslam will look over the proposed budget and then make his own recommendation to the Tennessee Legislature, which will set the budget for TennCare, the state's Medicaid program.
David Smith, the governor's press secretary, said Haslam takes a "thoughtful and comprehensive approach" before making his annual budget recommendations. He did not discuss specific programs but added, "This will be a tight budget, and the governor expects it to be his most difficult yet."
Task grows harder
TennCare officials say their task has gotten harder each year.
"We have had to make reductions for several years in a row," said Kelly Gunderson with TennCare. "We do not make these decisions lightly, and as more reductions are made, the decisions only become tougher. We certainly acknowledge the important function these centers perform, but given the other significant reductions we proposed, including increased member copayments and provider rate reductions, we feel we must include this reduction since it does not fund direct patient care."
The Vanderbilt clinic is the only place that Mae Copeland can take her son, Michael, for the specialized care he requires. It will have to shut down if the state funding ends, said Dr. Nathalie Maitre, the clinic director. The grant accounts for two-thirds of the clinic's annual operations.
Copeland listened intently as Maitre talked about her son's walking issue.
"We are going to do a full neurological evaluation to figure out why this is happening," Maitre said. "We are going to figure it out. You need a diagnosis that is going to help you going forward."
Although the funding for the perinatal centers comes from the state's Medicaid program, the money is not tied to specific patients. In the Vanderbilt NICU Follow-Up Program, Maitre and her staff treat the children of millionaires along with the children of welfare recipients.
"We are the only clinic of its kind in a 100-mile radius," Maitre said. "There is not a single other clinic that provides this multidisciplinary approach to child development and infant development."
The clinic includes physical therapists, speech therapists, nutritionists, educational specialists, psychologists, highly trained nurses and doctors who are experts in their fields.
Vanderbilt's portion from the grant this year was $597,000. It and the other Tennessee Regional Perinatal Centers have worked behind the scenes for decades to reduce infant deaths and birth complications. The program has evolved from buying ambulances and ventilators for rural hospitals to providing specialized clinics such as the one Maitre runs.
"When it first started in the 1970s, it had actually had the same dollar amount," said Dr. Bill Walsh, who is responsible for overseeing how Vanderbilt uses its grant allotment. "It was because babies were dying in outlying hospitals and there was no transport to go get them and no care for them."
Rural hospitals received training
The centers still provide training to rural hospitals. Their staffs have trained nurses throughout the state to use pulse oximeters to detect heart defects in newborns. The monitoring, which was mandated by a new state law, began Jan. 1, 2013, and will continue.
"There was no money attached to the law, so that fell to the perinatal centers to teach all the delivery hospitals," Walsh said. "That education effort has resulted in six babies being diagnosed before they arrested with critical congenital heart defects -- six babies saved since Jan. 1."
In 2011, TennCare also recommended that the grant program end. That year, Haslam penciled in half what the centers would normally receive. Then the Legislature restored full funding.
"Every two years it has been a fight," Maitre said.
The $2.25 million expenditure is a smart investment for the state, Walsh said. The money is matched with federal funds, he said, and the program's early intervention efforts save the state the cost of hospitalization in neonatal intensive care unit. He added that the program has operated for decades at the same level of funding.
"Babies don't vote very well," he said. "They don't run for office. They are totally dependent on us as adults and responsible people to make sure things go well for them."
Staff writer Louie Brogdon contributed to this report.
Contact Tom Wilemon at firstname.lastname@example.org or 615-726-5961.