A recent report from the Lucile Packard Foundation for Children’s Health found that kids in the California Children’s Services (CCS) program often have to wait months or years for important pieces of equipment such as wheelchairs, shower chairs, and hospital beds. These long waits can cause pain and pressure sores, make existing health problems worse, and even lead to unnecessary developmental delays.
Maryann O’Sullivan, primary author of the report, conducted extensive interviews with parents, advocates, state officials, staff of the CCS and affiliated programs, and equipment vendors.These interviews revealed that there are several different issues contributing to the delays in distributing needed medical equipment. Two primary concerns emerged:
- There is often a lack of clarity regarding who is the “payer of last resort” – that is, some programs are considered “secondary payers,” and will only contribute funding once other “primary payers” have been exhausted. This means that CCS, other publicly-funded programs, and private insurance companies will often require parents to jump through numerous hoops with other agencies before agreeing to assist. One parent described feeling “like a ping pong ball with people pointing at each other.” Another parent told O’Sullivan, “Parents of children with special health needs do not have spare time like other parents do. Not to mention that calling everyone is extremely frustrating and complicated. The job of resolving interagency billing disputes should not fall into our laps.”
- CSS and other public insurers often pay such low reimbursement rates that vendors will not agree to provide families with the equipment they need.
Hurdles to Obtain Equipment
The hurdles that parents must overcome to get medically-necessary equipment for their children are so substantial that many parents have simply stretched their budgets to pay for things themselves, or found other ways of obtaining funding.
One mother, named Alison Beier, told Kaiser Health News that her infant son required an automated blood pressure monitor before doctors would release him from the hospital. He was born two months prematurely, and had several congenital problems, including renal failure and a malformed urinary tract. Despite the seriousness of his health conditions, neither public nor private insurance agencies would pay for the blood pressure monitor. Beier posted about this issue to Facebook, and finally found a stroke of luck – a friend of a friend worked at the company that manufactured the necessary monitor, and agreed to help.
One family told O’Sullivan about more long-term struggles obtaining equipment for their son, Dominic, who has Duchenne Muscular Dystrophy, autism, and three other disorders. First, they were unable to get him a push wheelchair in time to begin kindergarten, so he had to endure the embarrassment of starting school in a stroller. Then, at the age of eight, he was still unable to push himself, but wanted some independence. It took his family six months to get a power wheelchair through CCS. After that, CCS refused to pay for a wheelchair van lift, providing only a metal ramp that was too heavy for Dominic’s mother to pick up. In order obtain a lift, CCS recommended that they contact the Regional Center, which supports children with autism. The Regional Center initially refused to help, because Dominic’s family had an old car. His family explained that they could not afford a new car, so the Regional Center told them to ask CCS to pay for a new van. CCS refused. Then Dominic’s family went back to the Regional Center, which eventually agreed to pay for a wheelchair lift.
To avoid this type of hassel, Dominic’s family has paid out-of-pocket for other items – including shower chairs and a wheelchair lift in their home – that theoretically could have been covered by insurance.
Improvement in Certain Counties; However, Much Remains to Be Done
The California Department of Health Care Services, which oversees CCS as well as Medi-Cal, is planning a program in 21 counties to coordinate health care between these two programs. This may do something to reduce bureaucracy; however, the majority of children in the CSS program don’t live in those counties. Moreover, there will likely still be issues with vendors refusing to work with public programs due to low reimbursement rates.
As O’Sullivan told Kaiser Health News, “It’s a big bureaucratic mess, and kids are suffering.”
O’Sullivan, Maryann. “Threading the Labyrinth: Why Children in California with Special Health Care Needs Endure Delays in Securing the Medical Equipment and Supplies They Need.” Lucille Packard Foundation for Children’s Health, May 2018, www.lpfch.org/sites/default/files/field/publications/threading_the_labyrinth_1.pdf.
Wiener, Jocelyn, and Kaiser Health News. “Children With Disabilities Endure Long Waits For Life-Changing Medical Equipment.” Kaiser Health News, Kaiser Health News, 19 July 2018, https://khn.org/news/children-with-disabilities-endure-long-waits-for-life-changing-medical-equipment/.
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