NORTH ATTLEBORO -- As her home nurse, Judy Blanchard knows more about 5-year-old Grace Darrah than most.
When she hears Grace kicking around in her seat while she prepares her medication in the other room, Blanchard drops everything and comes to Grace’s side with a pair of pink sneakers to protect her feet from bruises and scrapes. When she mentions playtime as an afternoon reward, Grace responds with an excited smile and claps her hands fervently in agreement.
Blanchard has become the master “bubble blower” in the North Attleboro household — a calming technique for the 5-year-old — and knows Grace’s favorite books (“Pete the Cat”), toys and activities.
But she also knows when Grace is too ill to keep playing, even if she won’t admit it. She knows how to restore the girl’s tracheostomy if it falls out and how to feed her through a gastrostomy tube in her stomach.
And, Blanchard loves the girl as one of her own. When asked what makes Grace stand out the most, she looks at her with admiration: Her resilience.
“She wants to be happy,” Blanchard said. “And she has her people wrapped.”
As Grace’s mother, Carole Darrah knows just how invaluable Blanchard is. And she wants the state to know as well.
The Darrahs and the other 900 families who rely on the state’s continuous skilled nursing program say they’re facing a nursing shortage, due to low pay rates, that has left them without the invaluable medical care their families need.
Grace was born with Trisomy 9 Mosaic, a rare chromosomal abnormality that left Grace in need of continual care. She wasn’t supposed to make it to her first birthday, but after four months in the neonatal intensive care unit, she was able to go home — with the promise that a state-funded home care nurse would assist the Darrahs in the day-to-day care of their daughter.
So far, Carole Darrah says, that promise has only been partly true.
The Darrahs are authorized for 56 nursing hours a week through MassHealth, which funds various amounts of home medical care based on each family’s needs.
But in five years the Darrahs have only been able to fill 40 hours at most, leaving the rest of Grace’s medical care on them. Carole Darrah has had to quit her full-time job and sacrifices sleep and alone time for her daughter’s health. She and her husband haven’t had time alone since they left the hospital five years ago.
But home care nursing advocates are hoping a pay increase for nurses part of the continuous skilled nursing program will change that.
Low home care rates by the state have led to a shortage of nurses in the program, advocates from the Home Care Alliance of Massachusetts said. In 2016 alone, home care providers lost 37 percent of nurses licensed and willing to work with families like the Darrahs. Fifty-three percent of those nurses left for higher paying jobs at hospitals or other care facilities, where they could make between $45 and $64 an hour on average, compared to the state reimbursement of about $30 an hour on average for nurses in the continuous skilled nursing program.
As a result, 47 percent of patients regularly receive fewer coverage hours than they need, the Alliance says.
Advocates are pushing for a $16 million increase for home-care nurses, but a smaller bill backed by state Sen. Barbara L’Italien, D-Andover, and a handful of legislators from the Attleboro area is expected to be filed as an amendment to the Senate budget this week. Advocates hope it will be the first step to more equal pay.
And while for some the money may seem like a lot, for Carole Darrah, her daughter’s care is priceless.
“We went a long time without any nurses,” Darrah said. “It was the hardest time of our life.
“We tried night nurses thinking, if I can sleep, I can manage it during the day. But we had trouble with that. We found some nurses sound asleep upstairs. Others didn’t have the skill set we needed. And some of the good ones were only around for a short time.”
Then, one day, they met Blanchard, who agreed to 40 hours a week over four days.
In 4 1/2 years Blanchard has come to know everything about Grace. With peace of mind, Carole Darrah was able to return to work part-time, and the consistency and familiarity of Blanchard has allowed Grace, who is non-verbal, to rely on someone who can tell what she is feeling or thinking.
“We’re so lucky to have Judy,” Darrah said. “We just needed a nurse to come meet us and fall in love with Gracie.”
But, Blanchard is just one person, Darrah says, with a life and a family of her own.
And, there’s always a fear of what will happen if Blanchard leaves for higher pay or retirement.
The Darrahs have spent the last five years looking for additional nurses to fill the rest of their 56 allotted hours. It’s especially important for next year, when Grace is expected to enter kindergarten full-time. But so far, the Darrahs have come out of their search defeated.
“You get battle-shy after awhile,” Darrah said. “But then you rally and you try again. The need is so high for home nurses, but the pay is not the same.”
And the skills needed are rare.
“Things can change in a minute,” she said. “Those things happen fast and you need training. You need to know what to do.”
Darrah remembers a time when a nurse wasn’t by her side.
During one of her first trips back to Boston Children’s Hospital, Darrah was forced to drive without a nurse in the backseat helping out when fluid was suddenly caught in Grace’s tracheostomy tube.
“I pulled over on the side of the highway to suction her,” Darrah said. “That was devastatingly scary. I’m not a nurse. I’m a preschool teacher.
“This world, you’re not ever really in it until you’re brought into it,” she said. “When it happened to us it was a huge culture shock. You don’t know families are struggling with the simplest things.
“We’re so vulnerable and we need help. I remember crying the night before (Grace’s tracheostomy), realizing we’d never be alone as a family. That we would always need help. When you need help just to live your life, that’s a tough thing.”
But, as resilient as the Darrahs are, Blanchard is their lifeboat.
She believes in Grace, helping her learn sign language to communicate and fostering a love of books and walks. She gives the family a sense of normalcy. And she’s become more than Grace’s nurse: A teacher and friend.
“We want Judy to be rewarded because she deserves it,” Darrah said.