Children with special needs often languish for months waiting to get needed medical equipment and supplies through a state health care program designed to help them, according to a new report.
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.*
“It seems unconscionable,” said Maryann O’Sullivan, the report’s author. “There’s a devastating impact sometimes on the children who have to wait to receive this equipment… they have to wait so long and they really suffer in the meantime, everything from developmental delays to pain to lack of independence.”
The Department of Health Care Services, which administers CCS in partnership with counties, doesn’t track wait times for medical equipment obtained through the program, nor does it set an acceptable timeline for fulfilling orders, according to the report. To find out how long families are waiting for equipment and what obstacles they face, O’Sullivan drew data from three surveys of parents, health care providers and advocates. She also conducted dozens of interviews herself, including of CCS administrators.
Those surveyed frequently reported delays in receiving equipment. In one survey, almost a quarter of parents said they waited a year or more for equipment. In another survey of hospitals, CCS staff and family support organizations, more than half reported kids having their discharge from hospital delayed because they couldn’t get access to medical equipment or supplies.
Prolonged waits can cause children’s health conditions to worsen, and result in both physical and emotional pain, according to the report. One example details how a boy with muscular dystrophy endured the embarrassment of starting kindergarten in a stroller because his family was unable to obtain the wheelchair he needed.
Already stressed-out parents also suffer as a result of the wait times and battling the bureaucracy of the CCS system to try to obtain the equipment, O’Sullivan said.
“These are families that already have way more complicated lives than families that don’t have children with these conditions,” O’Sullivan said. She believes the system should say, “‘let’s support those parents and support that family and make sure that we make it as easy on them as possible,’ but instead they run up against this bureaucracy.”
O’Sullivan identified several reasons for the delays. These include a complex system for deciding who should pay for medical equipment, burdensome administrative requirements, and a shortage of vendors willing to fulfill equipment needs.
The author offered several policy recommendations to address these issues, including establishing a system for addressing payment disputes, ensuring adequate funding for vendors and expedited payments, and establishing a minimum timeframe to fulfill requests.
In an emailed statement, the Department of Health Care Services said it has been working for several years to improve health care quality and coordination for children and youth with special needs, including those in the CCS program. The agency said it will also begin implementing a new system in July called the Whole Child Model (WCM), which aims to provide better care coordination, access to care and consumer protections for children and families in CCS.
“DHCS is currently reviewing the full report,” department spokesman Anthony Cava wrote in a statement. “Many of the recommendations will be implemented with the launch of WCM, including developing memorandums of understanding between the county CCS program and the managed care health plan, continuity of care for durable medical equipment, and timely access to CCS providers and facilities.”
Advocates have questioned whether the new system, which is scheduled to be implemented in 21 counties by early next year, will cause difficulties for children who rely on uninterrupted access to their doctors.
*The Lucile Packard Foundation for Children’s Health has also been a funder of California Health Report.