Lexi Gerkin is 14 years old. She has a number of complex disabilities and medical conditions, and she’s been without nursing for four months. And Lexi’s mother, Audrey Gerkin, is hopeful that higher pay rates for pediatric nurses will make it easier to find in-home care for her daughter.
"I want to be able to say, 'Yes, I’m so happy with everything that’s moving forward.' " says Gerkin. "And I think we still need to be a little bit cautious. We still don’t have nursing in our home."
For some time, New Hampshire families with severely sick children have struggled to find nurses to work in their homes. The problem stemmed from low hourly wages set by Medicaid – so low nurses wouldn’t take the jobs. But the state now plans to increase those rates, and the families are cautiously optimistic.
A 25 percent to 46 percent pay hike
The announcement about the rate hike came last week at a crowded meeting of the Governor’s Commission on Medicaid Care Management. In the room were several mothers desperate to get nurses into their homes. The Department of Health and Human Services’ new commissioner, Jeff Meyers, spoke directly to those parents’ concerns.
"This is an issue that is really of utmost concern to the department," said Meyers. "And the department understands and recognizes the need to ensure access to nursing services."
Meyer’s comments come on the heels of the highly effective lobbying effort by these families. Essentially, the problem is that their children, all of whom have both disabilities and extreme medical needs, are eligible to get up to 80 hours of skilled nursing in home each week. But because the state hasn’t increased rates for those nurses in about a decade, hardly any nurses can afford to take those jobs. And without that round-the-clock care, kids are repeatedly hospitalized and parents often have to stay home full time.
Deputy Health Commissioner Marilee Nihan says that’s about to change. Rates for nurses working in houses will go up from 25 to 46 percent, depending on the nurse’s training and whether he or she’s working overnight.
"We will be monitoring very, very closely to see whether this makes a change in the families getting the services that they need, and whether or not there are other barriers we are not yet recognizing, such as workforce shortage," says Nihan.
Hourly wages for these nurses will go up April 1, pending approval from the federal government. But Nihan says the state is so confident the feds will greenlight the proposal that six families with the highest needs will see the rate increase as soon as they can find a skilled nurse who wants the job. The state is also looking into other possible solutions, including paying parents directly for caring for their children.
But some want the state to shoulder the blame for the problem. Gina Balkus is the CEO of the Home Care Association of New Hampshire, which lobbies for the agencies that hire these nurses. She reminded the commission of a state law – ignored for years – requiring the health department to reassess nursing rates every year.
"One of the reasons we’re in this position today was that the department failed over the years to follow that law," said Balkis.
Myers, the health department’s new commissioner, nodded his head in agreement as Balkus spoke.
"I'm known as an individual"
Heather Donnell’s son, Lucas, has become one of the poster children for this issue. He has Downs Syndrome and complications from a breathing tube in his neck. Lucas has been without nursing for eight months, even though he’s legally entitled to 80 hours per week.
Donnell is hopeful the coming changes will mean she can go back to work. She recently started waitressing one day a week.
"It’s really nice to be there because I’m known as an individual, and not 'Lucas’ mom,' " says Donnell.
Both Heather Donnell and Audrey Gerkin have been out of work for two years. They say this fight has been about both their children's health - and regaining their own personal identities.
"We’re not at home sitting around, for sure. We’re having to do nursing skills," says Gerkin.
One thing everyone at last week's Medicaid meeting agreed on: hopefully a nurse will soon be doing that nursing in the Gerkin house.