Many California families struggle to find safe, affordable child care. For families of children who need medical care throughout the day, this struggle is amplified. Children who need medically intensive care — such as those who use feeding tubes or breathing tubes, or have seizure disorders — cannot attend traditional day care programs.
California has an option for these kids, called Pediatric Day Health and Respite Care facilities.
But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing, and families across the state are struggling to find places for their kids to go.
California’s public health insurance program for people with modest incomes and those with disabilities, known as Medi-Cal, foots the bill for these programs, but it pays such a low rate that the centers have a hard time staying open or paying qualified staff. The state needs to increase funding for pediatric care facilities to ensure medically fragile children can access this care.
The children who receive nursing care from pediatric day centers are at high risk for institutionalization. These children are frequently kept in acute care hospitals longer than is medically necessary, because families are unable to find home nursing care, due to the same root cause – low Medi-Cal reimbursement rates. Providing care for these children through pediatric day centers costs substantially less than leaving them stranded in hospitals or group homes, and it allows children to grow and learn at home with their families.
At a glance, a typical day at a Pediatric Day Health and Respite Care facility looks very much like it would at a traditional day care, with children playing and learning together. The difference is the kind of children who attend and the level of care provided. In addition to providing the types of play-based activities common at traditional day cares, these centers employ nurses who take care of the children’s medical needs. For example, instead of serving juice and graham crackers, nurses provide tube feedings for children with feeding tubes. At nap time, nurses care for children who use oxygen or breathing machines during sleep. Nurses provide medications, monitor children for seizures, and help children learn to move safely with braces, walkers and wheelchairs.
Families don’t pay for care at these centers out of pocket. Care is funded by Medi-Cal at a rate of $44.12 per child per hour. This rate — unchanged since 2018 — has not kept pace with inflation or with rising labor costs for nurses and other staff.
Katelyn Ashton is the director of Loretta’s Little Miracles, a pediatric day center located in Fresno. Loretta’s facility currently provides care to 48 children, ranging in age from infants to 21. She has 53 children on the waiting list for care. Ashton told me she can’t take in more children because she’s struggling to recruit and retain qualified nursing staff, due to increased staffing costs and stagnant Medi-Cal reimbursement rates. Nursing homes and hospitals are able to offer higher pay rates, more benefits and more opportunities for overtime.
“We have spent two years chasing hospital wages,” Ashton said, “and can no longer keep up with our fixed Medi-Cal reimbursement rate”
Access to these facilities is critical for families with medically fragile children. Take Katie Bewarder, whose 3-year-old son Beau has attended Loretta’s Little Miracles for the past year. Beau has a rare neurological syndrome: His vision is impaired, he can’t walk, he moves around by crawling, and he is at risk for seizures. Prior to enrolling at Loretta’s, three different day cares rejected Beau because they couldn’t meet his care needs as he grew older. Bewarder told me that lack of consistent child care made life difficult for her and her husband, who both work full time. Bewarder said the nursing care her son receives at Little Miracles “gives me the opportunity to work, and work with peace of mind” knowing that his medical and developmental needs are being met.”
Meanwhile, Jason Peterson’s 20-year-old son Evan has received care from Loretta’s for seven years. The availability of safe, consistent nursing care makes it possible for Peterson and his wife to work full time in education. Peterson worries how his family would function without access to the care center. The only option he could think of was to send Evan to live in a group home, but the idea makes him shudder.
“That would take him out of our house,” he said. “That’s not something we’re willing to do.”
Low Medi-Cal reimbursement rates are a problem across the state, both in high-cost regions and in rural regions where families already have limited care options. I spoke with Michael Lyman, CEO of Ridgeline Pediatric, which operates six pediatric care centers in rural areas of Northern California where access to home nursing care is extremely limited. Ridgeline Pediatric previously offered overnight respite care, but has stopped because Lyman can’t retain nurses to cover those shifts. An increase in Medi-Cal funding would help fix this problem and allow the organization to open more care facilities, Lyman said.
California can show commitment to medically fragile children by increasing the Medi-Cal reimbursement rate to a level that will allow pediatric day centers to remain in business and expand services to children who are currently not receiving care. The care that these centers provide makes it possible for medically fragile children who would otherwise be institutionalized to live safely at home with their families. California’s 2023 budget needs to include a 30 percent rate increase, coupled with a retrospective 10 percent rate increase to mirror what other long-term care facilities received at the start of the COVID state of emergency.
Pediatric day centers are a critical part of the home and community-based services infrastructure. We must protect and expand access to these day cares for the families and children who need them.
Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program. She is active in advocating for disability rights and home- and community-based services.