Children Who Need Wheelchairs and Other Medical Equipment Often Wait Months or Years Because of Byzantine State System

The complicated system creates a disparity where children from families without the means to pay for medical equipment out of pocket often must go without it for months or years, limiting their int…

Yuki Baba of Berkeley tried for years to get a hospital bed, wheelchair ramp, and other equipment through California Children’s Services for her 12-year-old son, Nate, who doctors have diagnosed with cerebral palsy. Children’s Services denied all of her requests. Photo courtesy of Yuki Baba.

“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.

About 200,000 special-needs children receive health coverage through the California Children’s Services (CCS) program, which serves kids with chronic medical conditions such as cystic fibrosis, cerebral palsy, cancer, and traumatic injuries. Yet when children require medical equipment like wheelchairs, walkers, ventilators, leg braces, and hospital beds, they sometimes wait a year or more to receive it, according to the report by the Lucile Packard Foundation for Children’s Health.*

“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.”

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.

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.”

California's Department of Health Care Services has been listening to these complaints and Gov. Jerry Brown signed a bill Sunday that will allow some of California’s most medically fragile children to keep the health services they rely on.

J.C. Aquirre, shown here with his mother Tina May Kline, is one of the 30,000 medically fragile children who would be able to keep their doctors while their health coverage changes under a new state bill.

Senate Bill 586 aims to prevent potentially life-threatening disruptions in care while the state restructures California Children’s Services, a health program for children with certain chronic conditions, including cystic fibrosis, hemophilia, cerebral palsy, heart disease, and cancer.

Many of these children have seen the same specialists for years, who are well versed in the intricacies of their conditions and medications. The bill will allow the children to keep their existing providers for 12 months. Those who want to keep their doctors after the first year may be able to through an appeals process.  In many counties, the children who have been covered by CCS will be moved into a MediCal managed care plan



Children Who Need Wheelchairs and Other Medical Equipment Often Wait Months or Years Because of Byzantine State System – California Health Report: