For Children With Debilitating Illness, the Wait for Medical Equipment Can be Agonizing

According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time before they have access to the medical equipment that they need to navigate the world. Bev Baker-Ajene is the mother of Savitri, who has cerebral palsy. She had ordered a wheelchair to accommodate her teenage daughter, but it took so long to arrive that she had forgotten that she had even ordered it.

Stuck Waiting

The result was that Bev was pushing her daughter around in a cramped, child-sized wheelchair that was simply too small for her. She also was hoping to get a shower chair for Savitri, but the process has been so frustrating that she had resorted to giving her sponge baths instead.

“It’s ridiculously difficult to get what you need for your child,” Bev says.

A Statewide Problem

Unfortunately, the Baker-Ajene family is not alone in facing frustrating wait times and unnecessarily complicated procedures. A recent report found that children that have disabilities regularly wait for months to even a year or more in order to receive the specialized equipment they need to function on a daily basis.

Worse Outcomes for Patients

These wait times can also have dire consequences for patients. They often allow for current health problems to progress and worsen, and can also exacerbate other challenges, such as developmental delays. The report cites several disturbing examples.

A boy with muscular dystrophy had to begin his year of kindergarten with only a stroller to navigate instead of an actual wheelchair. The issue in this case seemed to be a drawn out insurance approval process. In another case, a seven-year-old boy with a bone disorder had to wear diapers for far longer than necessary because he was stuck waiting to received a customized toilet for him to use.

An Overcomplicated System

The health coverage system is unfortunately just as complicated in California as it is in any other part of the US if not more so, and this is often the cause of delays. Patients are often tossed between private insurance companies and public programs such as California Children’s Services (which covers 200,000 kids with special health issues), Medicare, and Medi-Cal, which is the state’s health coverage program for low-income people.

All of this confusion makes it difficult for parents to navigate the system in the first place, much less order what they need and get it in a reasonable time. Many parents simply turn to online fundraising so they can purchase what they need themselves. Clearly, something must be done to make the system work faster and in a more patient friendly manner.


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