Mary Montague, 20, of Burlington, NJ, who was born with spinal muscular atrophy (SMA), recently welcomed New Jersey Legislative District 7 assembly candidate Carol Murphy to her home to witness, first-hand, the vital role that home care nurses play in her daily life.
SMA is a genetic disease that affects the motor nerve cells in the spinal cord, taking away the ability for those with the disease to walk, eat, or breathe on their own. Since birth, Mary’s parents, Tara and Jim, have relied on nursing care at home to help with their daughter’s complex medical needs. However, it has become increasingly difficult to find nurses to cover the 16 hours of insurance-authorized care that Mary is eligible for every day.
Murphy’s visit came at the invitation of Tara, who advocates for her daughter both as a special needs mom and as a manager for grassroots advocacy with BAYADA Home Health Care, the agency that provides Mary’s nursing care. In her role, Tara educates elected officials as well as those running for office about the challenges facing the home care industry.
During her visit, Murphy met with registered nurse clinical manager Chantel Denny, who talked about the difficulties of finding nurses to care for high acuity patients like Mary. “Home care agencies are reimbursed at a lower rate than hospitals, making it difficult to pay skilled nurses the salary they deserve,” said Denny. “What’s more, agencies are reimbursed the same rate for nursing, regardless if the patient needs high technology tracheostomy and ventilator care, or basic nursing care.”
Tara went on to explain the challenges of caring for her daughter’s complex needs, “Mary’s biggest medical issues are respiratory,” she said. “The nurses from BAYADA Pediatrics care for the tracheostomy and ventilator that enables her to breath, they give her medication and food through a gastronomy tube inserted through the abdomen, and they also take her to school. Mary is also 100 percent dependent on help for personal care, such as bathing, grooming, and dressing.”
According to Tara, Mary has been able to thrive at home, which is something that would not have been possible if she was in facility-based care. “Being home has allowed Mary to be a part of our family. She has been able to go to the movies, shopping, and to see Taylor Swift in concert,” she said. “None of that would have been possible without our home care nurses.”
After spending time with Mary and her team of nurses, Murphy was deeply moved, and made two promises to the family. The first was a commitment that, if elected, she will work with the Montague family and home care agencies across the state to make home care nursing a more attractive career option in NJ. The second was the gift of Taylor Swift’s latest CD, which she promised to deliver in person.
BAYADA Pediatrics provides nursing care at home and school for children from birth through adolescence with complex medical needs. To learn more about pediatric home care or to apply for a position, visit bayada.com/pediatrics.