Emma Farley finally got a new power wheelchair but it lacks some of the features that aid mobility and independence.
Emma Farley describes herself as stubborn. Usually, she doesn’t like to be helped. If she is out at the grocery and can’t reach a high shelf from her wheelchair, she makes do with something from a lower shelf.
At the same time, the fiery 26-year-old, who has had muscular dystrophy all her life and has used a wheelchair since she was 13, says if she needs to get somewhere that her chair won’t go, she’s ready to be carried. “I’m like 90 pounds; I’m a tiny girl,” she says. “I get carried all the time. If something’s not accessible, I won’t be confined to my chair.”
That was precisely the circumstance one evening in August 2017, when Farley decided to spend the night at her then-boyfriend’s non-accessible apartment. As they had done on more than one previous occasion, they hid her several-hundred-pound motorized wheelchair in a garage area. As unlikely as it was that someone would be able to find it, know how to turn it on and be able to move it, in the morning it was gone.
Filing a police report took hours; getting her insurance company behind her was an ordeal that lasted more than 30 months. Twenty-three years old at the time and on her parents’ Dean Health plan, Farley was accused of being negligent and told she would next be eligible for wheelchair coverage in June 2020 — by which time she would no longer be covered under her mother’s policy. Contacted for a response, Dean Health noted that “even acknowledging that a person is a member is protected health information.”
The charge of negligence rankles. “God forbid I should have a normal experience like staying over at my boyfriend’s place,” Farley says. “It’s ridiculous.”
Getting an insurance company to part with about $30,000 for a new wheelchair customized to Farley’s body as well as to her needs was never going to be an easy lift. Even still, while she made do with a loaner chair having none of the special features of her former “Lamborghini of chairs,” as she calls it, Farley was put through the paces (getting measured, filling out paperwork) before getting the initial rejection. With months gone and Plan A seemingly on permanent hold, she purchased the loaner from SSM Health with the help of her dad, who took out a $2,500 loan.
It’s difficult for non-wheelchair-users to understand how two wheelchairs ostensibly designed for the same purpose can be so far apart in price, but the differences are obvious to the user. Mobility features can include adjustable speed, a tighter turning radius, a higher weight capacity and a longer battery life and range, while functional features can go well beyond an individualized seat to incorporate power tilt, power footrests and the ability to elevate the chair. Farley’s stolen chair had all the functional features; her loaner did not.
“I used the tilt to transfer; I have trouble getting up from seats that are low to the ground,” Farley says. “The power footrest relieved some pain associated with having my legs in one position and helped the chair fit under many more types of tables. And then the elevate function allowed me to be at eye level with people. It allowed me to grocery shop by myself, and to look at people without hurting my neck. Also, I'm an adult, so sometimes I go to bars and everything’s up high. With the elevate feature, I could be at bar stool level with my friends. I had all the features to help me maintain independence and make me feel like I'm included in the world.”
The loaner’s drawbacks became more apparent as it began to malfunction in accordance with its advanced age (it was a refurbished 2008 model). It began to stop at random times, something that was either inconvenient or dangerous, depending on whether or not Farley was in a crosswalk when it happened. For a while, her world became decidedly analog, as she turned her chair off and then on again in an attempt to resuscitate it. Then that stopped working, too. A breakdown outside meant switching to manual mode and getting someone to push it back to her apartment, where it could be plugged in for hours in the hopes it would work again when unplugged.
All during the slow death of her chair, she was working on two fronts, applying for Medicaid (after her mother’s appeal to allow Farley to stay on her insurance past Dec. 31, 2019, was denied by Dean) and trying to persuade Dean to reconsider their no-wheelchair stance, which meant fresh appointments and documentation. Last fall, Dean approved her request, with the caveat that she would have to accept delivery of a new chair before the end of the calendar year. Then came a double whammy: SSM provided her with a temporary mobility scooter (of the type that you’d see in a shopping mall rather than out on a sidewalk), which skidded on ice, struck a mailbox and tipped, leaving Farley with five staples in her head; and with its Dec. 31 deadline fast approaching and deemed unmakeable, Dean canceled the entire order, forcing her to begin the entire process all over again.
State Rep. Jimmy Anderson (D-Fitchburg) is no stranger to insurance dealings since incurring a spinal injury in 2010; he uses a motorized wheelchair that costs upwards of $30,000. A huge problem, he says, is the prohibition against doctors making determinations for the patient about what constitutes medical necessity. (The law considers medical decisions as transactions between physician and patient, and coverage decisions as transactions between patient and health plan.)
“When they were fitting me for my first wheelchair, they were asking me all these questions as to whether or not I needed a particular function, and having never had a spinal cord injury in the past I didn’t know what I was going to need,” Anderson says. “One of the questions they asked was, ‘Can you come up with a reason why you would need your chair to elevate?’ I honestly couldn’t think of anything that would make it a medical necessity, and it ended up getting denied. So I get my wheelchair and roll into the hospital elevator for the very first time, and I look up and realize I can’t reach the buttons at the top in order to get back to my room. That’s when I realize there’s something really important that I don’t have, because of how incredibly screwed up the system is.”
At its crux, the issue is money, not care, and so it is reflective of healthcare’s “runaway costs,” Anderson says. Headlights for his wheelchair represented an out-of-pocket expense in the thousands of dollars, whereas a work-around suggested by a physical therapist cost around $20. “Now that I’ve gotten more involved in healthcare policy, it just feels ugly,” Anderson says. “All these costs end up becoming so inflated and inaccessible to anyone who doesn’t have Cadillac insurance.”
Approved for Medicaid in January, by March Farley was once again mobile. As grateful as she is to have new wheels following two-plus years of hassle and five months in solitary, Farley says that just as Dean did, Medicaid dragged their feet every step of the way. Because her insurance won’t cover it, she again lacks the power footrest or elevation. “If my feet get painful I’m just going to have to deal with it,” she says. Her own default of acceptance also rankles. “If I go to a restaurant that has just opened up and it’s wheelchair accessible, a lot of times I’ll think to myself, ‘How lucky am I?’ I shouldn’t think that way,” Farley says. “Accessibility should be a right, not a privilege.”
Anderson says he’s proud to have co-authored legislation in the 2019-20 session that expands the definition of complex rehabilitation technology in state statute and makes changes to Medicaid’s prior authorization process for those items. Revisions to the language in existing statutes and the addition of SB 605, the Standing with Dignity bill, means that “the people at the Department of Health Services can’t delay or put a stop to you getting a particular device or function on your wheelchair,” Anderson says. “Orders will get filled faster by not having DHS fighting with medical experts about what is or is not medically necessary.”
One woman testified during a hearing on Anderson’s bill that because a new wheelchair was delayed for a year, “she ended up in the hospital with pressure ulcers,” he says. “It’s difficult for people to understand how painful the process can be for people like us, and because our community of people who use wheelchairs is so small, it’s hard to get people to focus on the issue. I can only hope it gets better in the future.”
During the five months that Farley was largely unable to leave her studio (it cost her her job as a teacher’s assistant at the Creative Learning Preschool), she and her family had made a concerted effort to apply public pressure to the situation. Her sister posted about it on social media, and her mom wrote the governor. Farley was happy for the help but didn’t particularly welcome the scrutiny. She’s not a fan of “inspiration porn” (a term she embraced the second she heard it) or the infantilization of disabled people. “Living with a disability is to be infantilized,” she says. “‘Oh look, how cute, the little girl got a wheelchair.’ I have never been that girl. I’ve always been very independent, very fierce. I don’t want a pat on the head.”
Stories such as Emma’s have become familiar fodder on social media. Last fall, Mark Poss, a 30-year-old Californian who was left a double leg amputee at 28 after a drunk driver ran him down (he was helping a couple stranded by car trouble), posted his story on Facebook about twice being denied a wheelchair by his insurance company; it subsequently went viral. Their determination that his ownership of prosthetic limbs meant he didn’t need a wheelchair was, for him, “the last straw.”
Fast Company recently reported on a new study that found that 50 million Americans have helped crowdfund someone’s medical bills. It’s clear, Farley says, that the for-profit system of healthcare is dysfunctional.
“I’ve had muscular dystrophy my entire life, I’ve been in wheelchairs like this since I was in middle school, but disability can touch anybody at any time,” Farley says. “What you have to understand about insurance companies is that the people making the decisions about our healthcare in general are not people who care about our needs. Is this the situation we want? The people making decisions about whether I have a wheelchair, and what kind, should be my doctors and specialists, not these yahoos over at Medicaid whose concern is what it will cost.”
