There is this monthly meeting that is typically as bureaucratic as it sounds: the Governor’s Commission on Medicaid Care Management. But last month, things were different. A group of mothers were there to testify with their children in tow.
Heather Donnell, the first to speak, ditched her written testimony at the last minute.
"We had a traumatic day yesterday that I feel needs to be expressed," Donnell told the Commission.
Donnell’s son Lucas Bibeau is five years old. He has Downs Syndrome and ADHD. He eats through a tube in his stomach and breathes through a tube in his neck. And, the day before this meeting, Lucas pulled that breathing tube out.
Lucas was soon on a helicopter to Mass General, "where he had no parent, no guardian, no family," Donnell said while choking back tears, "where the ENT doctors forced a [tracheotomy] into his airway three times. And I walk in to my son having blood all over his shirt, and coughing it out."
Taxpayers – through Medicaid – paid for all of this: three ER visits, an ambulance, a helicopter and a pending surgery. What’s not included in that list is probably the most important: a nurse in Lucas’ house to prevent these types of traumatic hospitalizations in the first place.
In recent weeks, Donnell and several other mothers have catapulted a problem affecting only 135 children in the state to the top of the To Do List of the Department of Health and Human Services. That problem? A shortage of skilled nurses to work in homes with kids with extreme medical needs. Low pay rates set by the state mean many eligible families can’t find qualified nurses.
Medicaid has approved Lucas for 80 hours of in-home nursing each week. But because the state hasn’t raised rates for those nurses since 2006, no nurse will take the job. It just doesn’t pay enough. Deputy Health Commissioner Marilee Nihan says a solution won’t come without the Legislature.
"This is going to take an additional infusion of dollars," says Nihan. "This has been years of flat to declining rate resources for the Medicaid providers and we’re starting to see the effects of that."
Without nursing in the home, families are struggling to avoid worst-case scenarios like sending their kids to an institution.
Nurse, social worker - and mom
Audrey Gerkin lives in Brentwood and her 14-year old daughter Lexi, who has a genetic disorder and epilepsy, is approved for 60 hours of nursing each week. The Gerkins have had 13 nurses in less than two years – some left because of injuries, some for higher paying jobs, others because of incompetence.
Lexi has a feeding tube because she can’t swallow. Taking care of her is complicated. Her evening routine includes mixing a few of her fifteen meds with water - just the right amount of water - then injecting them into a tube that goes straight to her small intestine. Lexi sleeps in a hospital bed surrounded by pumps and other high-tech, high-maintenance medical equipment.
For Lexi a cold can lead to a month-long infection. Once, during a routine test at a hospital, she contracted MRSA. Managing all this care requires the skills of an ICU nurse and a social worker, says her mother.
"It’s just a constant stream of phone calls and emails throughout the day to keep up with her care so that she can remain healthy," says Audrey.
Audrey has quit two careers caring for Lexi. That’s in addition to raising two younger daughters. Audrey says she’s reaching a breaking point. The only immediate relief the state can offer is to send Lexi to live at Cedarcrest Center for Children with Disabilities in Keene. That will cost taxpayers more money than a nurse in the home.
"We’re legally supposed to be receiving services and we’re not right now and that infuriates me," she says. "Every day I struggle with the depression. By fighting and advocating for the nursing services that we’re approved for, that makes me feel a bit more empowered – instead of just giving up and letting go and having her move out of the house, which is not what I ultimately want."
History repeating itself?
At the meeting last month, Gina Balkis, the CEO of the Home Care Association of New Hampshire, the trade association and lobbying group that represents the companies that hire in-home nurses, said paying these nurses a competitive wage would mean hiking Medicaid rates 50 percent, from about $40 dollars to $60 per hour.
"Without meaningful increases to reimbursement, access to care for vulnerable patients will continue to be compromised," said Balkas. "There’s just no doubt about it."
Raising those reimbursement rates would require the Legislature’s approval – and that’s always been a tough sell in New Hampshire. There is a bill in committee in the Senate that would create a study commission on pediatric nursing. In the meantime, Marilee Nihan says the Health Department is looking at other options, including tweaking rules to allow licensed nursing assistants to do more and paying parents directly for caring for their kids.
"We’re working with these families very intensely every day to make sure that their children stay in the home," says Nihan. "It is much easier to work in the existing environment than it is to take an institutionalized person and transition them out."
Despite the department’s efforts to help, problems with institutionalized care still linger in New Hampshire. Last year, regulators shut down a troubled institution for people with disabilities, and the year before that the state settled a class-action lawsuit over the forced institutionalization of people with mental illness. In fact in recent history it’s often taken a crisis before lawmakers act on these issues. The last time the state raised rates for in-home nurses was ten years ago – when children were stuck in hospitals because families couldn’t find nurses to work at home.