Kids grow. This may not come as a surprise to most of us, who were ourselves children one, but health insurance companies are not necessarily prepared for this facet of reality. And where reality and bureaucracy can really come into hard conflict is when kids who need durable medical equipment might — gasp — outgrow the tech, which doesn’t grow at all.
The Atlantic tells the story of one girl who suffered a sudden, virus-related paralysis. While it took some time for doctors to come to a final verdict on diagnosis and treatment, one short-term goal seemed clear: since the girl couldn’t walk, she’d need a wheelchair to get around.
The girl’s medical team wrote a prescription for a wheelchair, but the family hit a snag when it came to insurance: without a formal diagnosis of the problem, they wouldn’t pay for any equipment.
It took a crowdfunding campaign from friends and family to buy the girl her the first chair, but that one — secondhand, and adapted for someone else’s very different needs — proved to be a bad fit for the active nine-year-old.
Getting a properly-fit medical device, like a wheelchair, for an adult is one thing. But for a kid it’s a whole separate set of issues, because kids are constantly growing. At 29, your leg length, arm length, and shoe size probably aren’t going to change much in the coming weeks. At 9, though, there’s no such guarantee.
That means that one GoFundMe — even if it reaches its goal — isn’t going to be enough. A child with a disability who needs mobility aids is going to keep needing new ones for years to come — some kids, after all, are still growing as late as college.
A family seeking medical treatment for pediatric disability may find themselves having to go through the process of getting a wheelchair prescription nearly yearly… and every single one of those requests can be a lengthy back-and-forth with doctor’s offices and insurance. The longer it takes, the worse the problem gets, because a kid keeps growing — and outgrowing the requested replacement gear — while adults are arguing about the logistics.
So what is a parent to do when repeated requests from their child’s pediatrician and specialist, with literal reams of proof attached, keep getting denied? Go out-of-pocket — and go social.
Susan Mahoney, a specialist who worked with the families interviewed for the story, told The Atlantic that some families go through as many as six levels of appeals. “By the time you hit a certain level of appeal, you’re looking at six months to a year. It’s unethical,” Mahoney said. And that leaves only one venue for rapid change: “I tell the families to go to the media, if they can.”
Twitter, Facebook, and crowdfunding sites are where families in need end up going. According to The Atlantic, there are currently over 15,000 wheelchair-related campaigns happening on GoFundMe. In fact, medical expenses are far and away the most popular category of donation-seeking campaigns, accounting for 15% of all the money given on the site. (In 2012, that was worth more than $6 million.)
When multiple appeals for getting the partially paralyzed nine-year-old were denied, her mom took to Twitter and told the world about the situation with a hashtag that went viral. Cable news picked up the story, and an escalation expert from the insurance company appeared like magic to solve the family’s problems and get the girl’s new chair approved.
When the family finally got the wheelchair they had been requesting for their daughter, they didn’t stop. The mom who won the day with a blog post and twitter fight is now doing the same work on behalf of other families.
“I’m willing to loan my soapbox to anyone who needs it,” she told The Atlantic. “If they’re having trouble with their insurance company, they can come and stand on my mountain and yell.”
One Parent’s Twitter Campaign to Get Her Daughter a Wheelchair [The Atlantic]
by Kate Cox via Consumerist