North Attelboro resident Carole Darrah her daughter Grace, along with nurse Judy Blanchard, were one of a number a families featured in media coverage in the past week about efforts to raise MassHealth payment rates for Continuous Skilled Nursing Services to very medically complex children and your adults.
According to the Sun Chronicle story:
“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.”
There are approximately 900 families in the Commonwealth who are qualified for nursing services through this program. Their stories are all similar to the Darrah’s and were featured in this news pieces:
- 5.17.17, The Sun Chronicle: “Push for Higher Nursing Pay Stars Close to Home for North Attleboro Family”
- 5.16.17, Burlington Union: “Families in Burlington and Beyond Face the Stress When it Comes to a Shortage of Skilled Nurses”
Senator Barbara L’Italien has filed a Senate budget amendment (#512) that would provide $4.5 million for increases to this program. While it is a long way from the $14 million, that the families and the agencies believe is needed to make their salaries competitive in the market, it is an important start.
HCA of MA working with the family led Pediatric Home Nursing Coalition and members agencies to secure this funding.