Natalie Briggs spent the first six months of her life in hospitals. Born at 30 weeks with an extra chromosome, she couldn't breathe or swallow on her own. She was deaf. Doctors predicted she'd be permanently confined to a hospital bed.
Now nearly 8 years old, Natalie has short brown hair and a big grin. She is walking, learning sign language and living at home with her parents in Shelburne, although she still breathes through a tube in her throat. Another tube delivers food and water directly to her stomach.
"She has to have eyes on her 24 hours a day to maintain her airway, monitor her for seizures," explained her mother, Amelia Briggs.
Amelia and her husband, Will, rely on nurses to help care for their daughter. The state determined that the family needed 112 hours of home nursing a week — and that Medicaid, the federal insurance program for those with low incomes and disabilities, should pay for it.
But the young couple says they receive only 70 hours of care a week. They take turns monitoring their daughter at night, each picking up a four-hour shift. On July 26, Amelia was on duty from 3 a.m. to 10 p.m., while Will, a software engineer, worked.
The Briggs' plight isn't unique.
For the last 20 years, the United States has suffered a nursing shortage, a problem that's expected to worsen as baby boomers age. The crisis is especially acute for home health agencies that provide nurses for families such as the Briggs, because they compete for employees with higher-paying hospitals and doctors' offices. [...]
"The problem is that we're not compensating home health nurses at a rate that allows there to be enough of them to meet the needs of these kids with high needs, and so there's a shortage of nursing, particularly in the home and particularly nights and weekends," said Barbara Prine, an attorney with Vermont Legal Aid's Disability Law Project. "What that creates for these families who are dealing with really medically complicated kids is a tremendous amount of stress." [...]
In the meantime, families continue to pick up the slack.
"The consequence of not having someone alert, ready to take care of the kids, is really dire," said Prine of Vermont Legal Aid. "Part of the problem is we have this expectation that parents can go above and beyond. These parents are going above and beyond night after night, week after week, month after month, year after year, and that is a huge toll on them and their families."
The issue is not just about providing relief for overextended parents. "They are saving Vermont money by keeping these kids home," Prine noted. [...]