Phin Hause weighed less than two pounds when she was born eight weeks early. For 14 months, she remained in the ICU. Every day, her parents Lori Ann Dotson and Jeff Hause, made the long drive from their home in Napa to Kaiser in Roseville.
When doctors decided Phin was strong enough to leave the hospital, her parents started looking for caregivers to assist her in the home. She needs round the clock care and a team of skilled nurses to administer life-sustaining treatments. Phin still uses a ventilator to breathe, feeding tubes to eat and a host of other medical machines to stay healthy.
After weeks of trying, the search for fulltime at-home nursing support in their area came up short. So the family moved—500 miles south to San Diego County—to get Phin, now 2½–years-old, the care she needed.
“What was so disappointing was when we got to this precipice that we could potentially bring her home, it was harder than it needed to be,” Dotson said. “We were willing to do the work and learn whatever we could to care for her at home. But there weren’t adequate resources to do it.”
Phin’s long journey home highlights what many people call a lack of vital homecare for medically fragile kids. Testimony from parents, nursing agencies and hospitals, as well as a review of state and industry data, point to significant challenges in accessing consistent homecare for children.
And while a state lawmaker introduced legislation earlier this year to address what he calls a crisis, the state department that oversees millions of disabled and low-income Californians isn’t convinced there’s an access problem.
The NBC Bay Area Investigative Unit contacted the children’s services or public health departments in all nine Bay Area counties. Five counties—including Napa, Sonoma, Marin, San Francisco and Alameda—report they have experienced problems matching kids with at-home nursing agencies. San Mateo said it has concerns about whether local agencies can provide care. Santa Clara and Solano Counties said they haven’t faced challenges. Contra Costa County doesn’t have any data.
Kids are on nursing agency waiting lists for months, according to Marilyn Romero, nurse manager for the Alameda County Public Health Department. In Napa, where Phin’s family lived, county officials report that none of the nursing agencies on the county’s list of providers could provide home health for kids. Both San Francisco and Sonoma Counties point to the low acceptance of Medi-Cal reimbursement rates for the difficulty placing pediatric patients with in-home nursing agencies.
State data analyzed by the Investigative Unit shows a small percentage of home health agencies actually provided homecare to kids. According to home health agency utilization data maintained by the Office of Statewide Health Planning and Development, 144 agencies in the Bay Area accepted Medi-Cal in 2014. But just 35 of them, or less than a quarter, report they actually provided care to children age 10 or younger.
A 2015 study shows access to homecare is decreasing for patients like Phin, whose complex medical conditions entitle them to home health services through Medi-Cal. The research was performed by Leavitt Partners, a health care consulting company, and funded by Maxim Healthcare Services, one of the largest pediatric homecare agencies in the nation.
Researchers surveyed more than 600 home health agencies in the state and found many are “shifting resources away from providing care to Medi-Cal patients” and “almost all Medi-Cal certified agencies report being unable to staff all the hours approved for their Medi-Cal patients.”
The study also found the problem is impacting kids. “The picture becomes particularly concerning in light of pediatric services,” researchers noted. According to the state, 3,900 children on Medi-Cal are entitled to homecare.
“It pretty much sealed the deal that there’s a problem when it comes to access,” said Kris Frank, Maxim’s western regional director of government affairs.
He said Maxim is increasingly turning down new patients referred to the agency after they are discharged from the hospital. He also said the agency is experiencing greater challenges staffing all of the hours new patients require. Frank said it’s difficult to recruit and retain new homecare nurses, partly because many opt to work in acute care settings, such as hospitals, where the pay is higher.
North Bay Senator Mike McGuire recently proposed legislation to raise the Medi-Cal reimbursement rate for homecare nurses by 20 percent in three test areas of the state, including the Bay Area. Rates for in-home pediatric nursing care haven’t increased in 15 years. The current reimbursement rate is $29.41 an hour for a licensed vocational nurse and $40.47 an hour for a registered nurse, though industry representatives say nurses wouldn’t pocket the full amount.
McGuire said raising pay could incentivize nurses to work in the homecare setting. More nurses may mean greater access for thousands of children in California who rely on Medi-Cal services.
During a state senate health committee hearing in April, a neonatal nurse specialist at UCSF Benioff Children’s Hospital in Oakland and a pediatrician from UCLA Medical Center testified that children have to stay in the hospital months longer than necessary in some cases, because families can’t find available at-home nurses.
McGuire said it’s costing the state more money to care for kids in the hospital instead of at home. He also called it “unacceptable” that once kids are home, they may not be able to obtain the resources that were promised to them by the state’s Medi-Cal program.
“We are not following through on a promise for some of the sickest kids in California,” McGuire said. “If department heads from the Department of Health Care Services spent 10 minutes with any of these families they would know there is an access to care issue, but as long as they don’t track the numbers they can plead ignorant.”
Jennifer Kent, the director of Health Care Services, the department that oversees Medi-Cal, said the state does not have a systemic access problem.
“Anecdotally we’ve been made aware that there are cases that are challenging but we’re not sure that constitutes a statewide access problem or an access problem more broadly,” she said.
Kent said the state tracks the number of homecare hours authorized but doesn’t track the hours agencies can’t fill. She also said the state doesn’t track when agencies turn down care to patients, though she noted the department will begin informing families how many homecare hours they are entitled to so they can choose to seek assistance from other agencies.
But families argue the nursing supply is dry and doubt other agencies can pick up the slack.
Windsor resident Liz Helfin’s 14-year-old daughter, Kaitlyn, has been on a waiting list for homecare services for a year and a half. Kaitlyn suffers from debilitating seizures and requires intravenous feeding that provides her with essential fluid and nutrients.
She is eligible for shift care nursing through Medi-Cal, but the Heflins cannot find any agencies in Sonoma County to provide care to Kaitlyn. Heflin quit her job as a daycare provider to stay home fulltime with her daughter.
“I don’t like to complain about our life because it doesn’t get our day any better,” Heflin said, “but it’s really frustrating that there are services she is eligible for that are really important that we can’t get.”
The Department of Health Care Services contacted Heflin for details after the Investigative Unit began raising questions about homecare resources. When asked if she will begin seeking information from families and providers about potential access problems across California, Kent said she would be “happy to look into it.”
But the Investigative Unit also found obstacles accessing homecare isn’t limited to Medi-Cal patients. Larkin O’Leary’s 2-year-old son James is covered by commercial insurance through her employer. After 40 days in the hospital following two surgeries on his esophagus, James returned to his Santa Rosa home in January.
James is not as medically complex as Phin Hause or Kaitlyn Heflin, but his doctors decided that he could benefit from 100 hours of homecare. James eats through a feeding tube, and when O’Leary needed help using the pump, she called Kaiser. But the hospital didn’t have a nurse to send.
“To have been in the hospital for so long and then to come home and just feel isolated and feel like nobody is looking out for you or nobody is thinking about you is just heartbreaking,” she said.
O’Leary said Kaiser told her there is no pediatric home health care available in her area. The hospital finally sent a nurse 10 days after James came home.
Kaiser can’t comment on the case because of patient privacy laws, but said in a statement, “As the demand for home health care increases, the shortage of home health nurses, especially in certain specialties, is a challenge affecting the entire health care community, not only Kaiser Permanente.” The hospital said it is “successfully recruiting home care nurses, but there is great demand, and a limited pool to draw from.”
Dotson and Hause said the healthcare community must make homecare a priority and believe the state has a responsibility to understand and address problems. They said with the right resources and committed caregivers, kids like their daughter can thrive at home.
“Every day is a miracle with Phin,” Hause said. “We are just so happy she is with us.”
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