Bev Baker-Ajene of Clovis could really use a portable lift to help get her daughter, Savitri, in and out of their family van.

Savitri, 19, has severe cerebral palsy and is confined to a wheelchair. For years, Baker-Ajene has lifted her in and out of the van herself. That was fine when Savitri was a small child. Now, Savitri weighs 115 pounds, and lifting her has strained Baker-Ajene’s body to the point that she needs hip replacement surgery.

But Baker-Ajene said she doesn’t have the time or energy to try to get the lift she needs from California Children’s Services, the program that administers medical equipment for children with disabling health conditions. To do that, she would have to get a detailed recommendation from a specialist, submit a stack of paperwork, and be prepared to potentially navigate a months-long process of additional document requests, denial letters, and ultimately have to apply again through a different agency. Meanwhile, she has her daughter to care for.

“Anytime you have to get something, you’ve got to go through so much justification and verification, as if I’m trying to defraud somebody to get a piece of equipment for a child with documented medical needs. … It’s really kind of insulting,” Baker-Ajene said. “It’s too tiring, and it shouldn’t be, with all the other burdens that we have as parents of children with special needs.”

Baker-Ajene isn’t alone. A recent report by the National Health Law program describes a maze of requirements that families of the approximately 200,000 children with disabling health conditions enrolled in Children’s Services must go through to obtain medical equipment through the program.  The requirements vary depending on what county families live in, whether the child is enrolled in Medi-Cal or has private health insurance, and what other entities—such as schools—might be available to provide the equipment. The equipment can include lifts, wheelchairs, walkers, ventilators and hospital beds.

The byzantine system creates a disparity where children from families without the means to pay for the equipment out of pocket often must go without it for months or years, limiting their interactions with their community or setting them up for poorer health outcomes compared to their wealthier peers.

In many cases, California’s policies and procedures for administering medical equipment and supplies through the Children’s Services program simply aren’t clear, adding to the confusion, the report found. And information available to the public about the program is often outdated.

“It’s pretty complicated,” said Alicia Emanuel, a staff attorney with the National Health Law program. She worked for a year with two other attorneys to understand the program and write the report, which is intended to help legal advocates advise families that are trying to access medical equipment. The 21-page report details the numerous steps families or their advocates must go through to get, for example, a wheelchair or walker for a child.

“I think that the gaps in the state guidance make it very difficult for families of children on the CCS (California Children’s Services) program to obtain the durable medical equipment that they’re entitled to,” she said. “It should be underscored that these are children with complex medical conditions like sickle cell disease, cystic fibrosis and cancer, and it’s an undue burden to create a system that’s difficult to navigate for these kids.”

The complexity can mean families have to wait months to get the equipment they need for their children—or that they never get it at all. In fact, a 2018 report by the Lucile Packard Foundation for Children’s Health found that some children languished more than a year before getting medical equipment. For some children, the prolonged waits caused their health conditions to worsen, and resulted in physical and emotional pain, the report found.

Not much seems to have changed since then, said Ali Barclay, family engagement manager at Family Voices of California, a statewide collaborative of parent-run centers that care for children with special health care needs. Low reimbursement rates for medical equipment may be contributing to the problem, she said.

Durable medical equipment “access is still a huge issue for many California families,” Barclay wrote in an email. “When children are unable to access equipment that is crucial to their development, they are being denied the opportunity that their typically developing peers have to participate and engage in their communities to their fullest potential.”

California’s Department of Health Care Services, which oversees the Children’s Services program, did not respond to requests for comment by the publication deadline.

Some families aren’t able to obtain medical equipment at all through Children’s Services. Yuki Baba of Berkeley said she battled for years to get orthopedic equipment through the program for her 12-year-old son, Nate, who doctors have diagnosed with cerebral palsy. He’s confined to a wheelchair, cannot sit up on his own, and wears a torso brace to support his spine.

Baba has tried to get a hospital bed, wheelchair ramp and other equipment through Children’s Services. But the agency denies her requests because it says Nate’s specific type of cerebral palsy doesn’t fit within its own narrow definition of the disease. Baba and her husband, Peter, have had to find other ways to get the equipment, either through Nate’s Medi-Cal health insurance, the local Regional Center, or by paying for it out of pocket, she said. The process takes a lot of time and is unduly complicated, Baba said.

She said she feels especially bad for families who are new to the Children’s Services system, and those who have limited English language proficiency.

“There are some kids who really should be qualified for medical equipment (through Children’s Services) and they’re falling through the cracks,” she said. The Children’s Services definition of cerebral palsy “is not right, so I want the state to change that to a more reasonable definition.”

Emanuel and her colleagues are now working on recommendations for reforming the Children’s Services program so that families can more easily obtain medical equipment for their kids. So far, Emanuel said they’ve identified a clear need for updated guidance, and better state oversight of the program.

“This is a very vulnerable population,” she said. “If children don’t have access to the durable medical equipment and supplies that they need, that can really hinder their development.”

The California Health Report receives funding from the Lucile Packard Foundation for Children’s Health, but remains editorially independent.