Brian Smart (L) holds baby Noah, while his wife, Laura, holds their 5-year-old son, Ethan. Noah was born with a severe congenital heart disease. (Jordan Katz)
The number of people at Brian and Laura Smart’s San Jose home has been steadily growing since February.
By June, it reached six adults: Brian's parents, Laura's mother and an au pair. They're all part of a makeshift medical team aimed at keeping Noah, Brian and Laura's one-year-old son, alive.
Last July, Noah was born with Shone’s Complex, a rare congenital heart disease. In February, he suffered a stroke during a surgical procedure, which further disabled him. Noah is now dependent on a ventilator and a gastric tube, and he takes nine medications every day.
“We had this little boy who was rolling over and playing with us and now we have this body that vomits and cries, and it’s torture.” Brian says.
“What Noah was up until then, Noah is not anymore,” says Dr. Meera Sukumaran. She specializes in pediatric neurodevelopmental disabilities at Stanford, where she treats Noah. After Noah suffered the stroke, he started having seizures and muscles spasms, Sukumaran says. “He would cry out, be very distressed. ... He was having a harder time digesting his milk, so he was throwing up 10 to 20 times a day."
Noah has a feeding pump, a suction machine, and needs oxygen, his father says. These needs are highly complex, and while some members of Noah's makeshift support system have medical skills -- Brian's mother is a retired registered nurse, the au pair has a nursing license from the Philippines -- everyone agrees this care system is not sustainable.
"Ideally, we would want a nurse 24 hours a day,” Brian says, although he also says they’d take even 8-hour support. But trying to access that level of care has been a months-long odyssey.
Brian and Laura are both employed full time and have health insurance with United Healthcare through Laura's job at Apple. Despite the insurance, they estimate they're paying $5,000 a month, out-of-pocket, for hired care and copays.
The Smarts applied to get an in-home nurse covered by United Healthcare and were denied. The insurance company claimed the care Noah needed was custodial, meaning it was the same as the care that comes with having any baby. They appealed, and were denied again, even though a home nurse would help them avoid emergency room visits that would quickly cost the insurer more than a home nurse.
The Smarts next turned to Medi-Cal, the state's health insurance generally for people who are low income. Severely disabled children can be deemed eligible for the program, even if their parents’ income exceeds usual limits. This was a waiver the Smarts sought for Noah.
But getting a waiver is just the first hurdle and no guarantee Noah will actually be able to get the nursing care he needs. The problem is home health agencies that provide the care have trouble attracting nurses to meet the pressing demand by families, and they blame low Medi-Cal reimbursement rates.
“On paper, there are all these pediatric home health agencies," says Sherri Sager, chief government and community relations officer of Lucile Packard Children's Hospital at Stanford. “To meet the demand for pediatric home health nurses, the supply is nowhere near what we need."
At Maxim Healthcare Services, a home health agency that connects families with nurses, Kris Frank says he is finding it harder and harder to recruit and retain registered nurses, because the rates they offer are so low compared to what nurses can earn at hospitals or other skilled nursing facilities.
Currently, the average hourly rate for a registered nurse working in the Bay Area is around $65 an hour, according to the Bureau of Labor Statistics. The reimbursement rate Maxim says it receives for a registered nurse caring for a Medi-Cal patient is $40.16 an hour.
Though Frank says Maxim pays all its nurses the same rate whether the agency is reimbursed by Medi-Cal or another insurer, the net effect of a lower Medi-Cal reimbursement rates to the home health agency is a lower rate overall.
“We blend the rates,” Frank explains. "but costs go up, and we just can’t continue to pay enough for us to fill all the approved shifts."
Barbara Crane, Maxim's director of clinical services, first came to the agency as a home health nurse after she and her husband moved to the Bay Area from New York. When she arrived, she says she was “taken aback” by the difference in wages.
“It was less than half of what I had been making ten years ago in New York,” Crane says. “Caring in the home, where you don’t have other doctors or other nurses around to support your assessment and your decisions, is a bit of a daunting task."
"I know this is a different state, but the rates for nursing to be done in the home are just so sub-standard,” she says.
Now her job is to convince nurses to work in home health.
"I am in the predicament of trying to get nurses to come here and get them to understand how important home health is, even though it’s not financially rewarding,” Crane says.
What’s more, Frank says, the nurses that agencies like Maxim need to recruit are highly-skilled, almost to the level of a hospital neo-natal intensive care unit. “But we’re bringing them in-home," he says, "and some nurses don’t want to work in the home." Then when he tells them the rate, he says, they balk. "They think, ‘Well, heck. I could be making more working as a waitress, or a waiter—a lot more.’”
Maxim has been working with Sen. Mike McGuire, D-Healdsburg, to pass legislation that addresses the issue. Senate Bill 1401, first introduced in March, would establish a three-year pilot program in three regions around California— including the Bay Area. Under the pilot, Medi-Cal reimbursement rates for registered nurses and licensed vocational nurses would be increased 20 percent.
In a statement, McGuire pointed out that in-home nursing is cost-effective. “It costs 10 times more each day to care for a child in a hospital," he said, "than it does to care for that child at home.”
Tony Cava, spokesman for the Department of Health Care Services which oversees Medi-Cal, said that the agency was "not aware of any significant access issues" with home health care for Medi-Cal recipients.
If a family is unable to find a home health agency -- or HHA -- to provide prescribed nursing service, Cava said that "DHCS nurses [would] provide assistance to the family by referring them to other Medi-Cal-approved HHAs, individual nurse providers, and pediatric day health care centers.”
But implementing SB 1401 would cost more than $20 million to implement, according to an analysis presented to the Senate Committee on Appropriations. The bill was ultimately held in the committee earlier this year and cannot be re-introduced until next January.
Meanwhile, home health agencies struggle to fill the hours that patients need. “We should be filling 100 percent," Frank says, but even when nurses call in sick, "we have no backup nurses."
As for the Smarts—after months of phone calls and paperwork, Noah is on track to get Medi-Cal coverage. What's unclear is whether that coverage will make a difference, given the shortage of in-home pediatric nurses.
Brian Smart knew that even with coverage, Noah's name might linger on a wait list for care for a year—or more. Still, he decided it was worth a shot.
"I filled out the paperwork as a just-in-case,” Brian says. Even the program coordinator told him it would be a "long shot" that he would get an in-home nurse.
"Even if it’s a one-in-a-million chance, at least it’s a chance."