Health insurance is supposed to protect us from high medical costs. What happens when it doesn’t?
“We had to purchase my daughter's first wheelchair out of pocket because there was a very long back and forth with the insurance company," said Olya Schumacher. "We waited for a year, and my child needed to have mobility."
Olya's seven-year-old daughter, Kaitlyn, was born with spina bifida, a birth defect that impacts the spine and spinal cord. Spina bifida is often called a “snowflake” condition — as it impacts everyone differently. However, one commonality is that many people with SB, including Kaitlyn, use durable medical equipment, such as wheelchairs, crutches and braces.
“Sometimes families and individuals with disabilities feel that even though there is access through a Medicaid and insurance program to certain medical equipment, they oftentimes are very limited in their choices. And they are limited by the funding that insurance provides," Olya said.
The Schumachers have seen and encountered what many people do: strict limitations, high co-insurances, and long wait times from their insurance when requesting coverage of durable medical equipment, or DME.
"Oftentimes the insurance company will say, 'Well, if we approve the wheelchair, we will not approve crutches,'" Olya said, "because a child may be able to partially ambulate with crutches and everybody knows that standing is very important for the growth of the bones. "
Nick Heilig, who has spina bifida, says for him, getting parts replaced on his wheelchair, or getting new equipment has also been a time-intensive and expensive process.
“Basically, braces for somebody who's ambulatory and chairs and tires and things like that are part of our daily life,” Heilig said.
Sometimes even necessities are denied by insurance, and he’s told they’re a “luxury.”
“It's always been a fight. And it shouldn't be. There's things that we need that are different than those that don't have any medical hurdles throughout their life,” Heilig said.
"It's not a scenario where me or anybody else is looking for any handouts or anything like that. It's just the facts as far as what's needed,” Heilig added.
So locally, Heilig, the Schumachers, and many other families are tackling this barrier to accessing their community through Spina Bifida of Western New York.
“Our hope is to raise funds to be able to provide, within the budget, medical equipment grants to offset some of those expenses that are not covered by insurance or public funding," Olya said.
According to the Centers for Disease Control and Prevention, the estimated lifetime cost of care for someone with SB, including caregiving costs, is $791,900. A major cost for many people with SB is medical equipment.
Olya says their organization is currently able to provide $200-$300 grants for medical equipment and smaller grants for individuals in the hospital who may need help with out-of-pocket costs like food. They also hope to have a lending closet for equipment in the future.
“We have a common goal of making things better for one another. You know, for kids, for adults,” Heilig said.
In early September, Spina Bifida of WNY raised over $11,000 in their first Walk and Roll event, to not only support the grants but also their referral, education, and outreach programs, as well as more wheelchair-accessible community events.
Programs like this one highlight the bigger, more systemic issue.
"I feel that these limitations that are currently placed with insurance companies create barriers, and it is my wish, my hope, my dream that those barriers will eventually be removed," Olya said.
A national problem
"The problem is that, 'Oh, your coverage doesn't include wheelchairs,' and they would appeal it and it’s basically, 'How can you appeal if you're not covered in the first place?' Or we would actually see some examples of 100% coinsurance," said Silvia Yee, a senior staff attorney at the Disability Rights Education and Defense Fund, or DREDF.
Yee and DREDF have been hearing about limitation issues, like the ones she described, in California for over a decade. Now, they’re suing California and the plan California uses as their “benchmark” for Affordable Care Act standards for not adequately covering wheelchairs.
“People tend to think of discrimination as just outright, ‘Oh, no, we don't want your kind here.’ But you don't have to do that anymore," Yee said. "Like your options, where you work, or where you live, are all so deeply affected by these, these less obvious ways of designing a benefit."
"People with disabilities just don't have the same options. They don't have the same choices," Yee added.
Every plan and every insurer is different. New York’s benchmark plan for the Affordable Care Act also has limitations.
Manual wheelchairs are considered to have a five-year lifespan and if different mobility aids can help you, you’ll only be covered for the device that meets your minimum needs.
Yee says she hopes their lawsuit has a ripple effect for other states and plans with limitations, but in the meantime, it’s important for others to share their experience.
“That's sort of the ammunition of your story that needs to be put together with others. Because we can't fight the system alone," Yee said.
Stories from Spina Bifida of WNY's Walk and Roll event
When Kristi Leone’s daughter Elliana was diagnosed with Spina Bifida at the 20-week anatomy scan, her OBGYN asked if there is anything they could do for her. Kristi told them she wanted to talk to other parents of kids with SB.
“Unfortunately, they said to me, we don't know anyone and made me feel very alone," Kristi said.
But life is very different for Leones now. Elliana’s now five years old and just started kindergarten. At Delaware Park, they met up with dozens of other people for Spina Bifida of WNY’s first annual Walk and Roll event.
“We really want to raise awareness so that no other family has to get that diagnosis and leave and say ... they don't know anybody with spina bifida, because we are out here and we want to connect with those families," Kristi said.
Elliana was a bit shy with a reporter – but seven-year-old Kaitlyn rolled up to her to chat. Both girls enjoyed cupcakes, rolled with their friends, met some superheroes, and Elliana had her face painted. As much fun as it all was, the event also served as an opportunity to fundraise for much-needed programs.
Spina Bifida of WNY will use the $11,170 raised from the event to support their grants, referral and outreach programs, community education, and various wheelchair-accessible community events, including an upcoming Halloween party.
