It’s been a while since I’ve posted! Things have been busy. I have an upcoming piece that’s going to be published on a website that isn’t mine (no idea when, but I’m excited about it), I’ve finally decided on a graduate school (hello, Harvard!), and I’ve interviewed an artist about his dessert paintings for Guest of a Guest. Also, I plan to update my accessible bakery blog (subscribe if you haven’t!) with a cupcake shop in the West Village, so be on the lookout for that. And to top things off, I’m joining Panorama: The Journal of Intelligent Travel as a Contributing Writer! Very excited to work on literary travel writing and provide a wheelchair user’s perspective. To balance this productivity, I’ve been watching baseball and hockey (and bingeing superhero shows). I also have a video of myself at Push to Walk doing squats while using a platform walker, which I would post if I were not so sheepish about it. I sent it to a few of my friends, though, and one of them said that my butt looked awesome, which is all the external validation I need.
Opening ramble aside, I wanted to share part two of my “Cost of Disability” posts (again, meant in a literal sense). Because having a disability is expensive. It’s like being Batman, except that you don’t get to lead a double-life that involves fighting crime, and you don’t get a batcave. But you do have to buy a lot of specialized equipment that most people will never have a good reason to purchase. Disclaimer: I’m only going to talk about spinal cord injury (SCI) physical therapy (PT) related costs, at least as they pertain to someone with a C7-level injury, because those are what I am most familiar with. Every disability is different, even among those with SCI.
Last post was all about wheelchairs, some of which my insurance covers, and some of which it does not. This post will cover things that my health insurance never did: Functional Electrical Stimulation (FES) devices, standing frames, the ramp that leads into my house, acupuncture sessions, and sessions at the gym I go to in New Jersey. Everything listed is absolutely necessary for my health and quality of life, but must be paid for out-of-pocket.
But first, an explanation of what everything is and does. Note: Although I am only mentioning a few items, just know that there are plenty of other things people with disabilities need that insurance won’t cover.
Function Electrical Stimulation (FES) Leg Cycle: I use this cycle 3-4 times per week for an hour each session. You put electrodes on different muscle groups (for me, quadriceps, hamstrings, calves, shin muscles, and glutes), and they are then electrically shocked into contracting and pedaling the cycle. My settings have resistance included, so I’m basically pedaling uphill for an hour. If you tried this and had full sensation in your legs, you would probably be in a decent amount of pain about two minutes in, so I do not recommend trying this unless you need it. There are many health benefits to using FES devices. They prevent muscle atrophy, improve circulation (which decreases the chance of blood clots that could land you in the hospital), and provide a cardiovascular workout, among other things. Basically, think of the health benefits you’d get from cycling regularly.
- Cost: $16,900
Standing Frame: I use the EasyStand Evolv. A standing frame is exactly that – a frame that you use for standing. They come with all sorts of options (that you need to pay for), but it’s the closest you can get to a standing desk (which has many health benefits). Standing frames also help maintain bone density and improve range of motion (because your hip flexors can get super tight sitting all day). This is another piece of equipment where the more severe your condition, the more expensive the product will be, because there are certain additions (such as a backrest) that you will definitely need if you have a higher-level injury. I use my standing frame at least once a day for an hour per session, and spend my time either working or watching Netflix/HBO Go.
- Cost: $2,944 (with no add-ons)
Ramp: Yup, insurance doesn’t cover ramps (and this doesn’t really fall into the PT category, but I’m including it anyway). Insurance will acknowledge that I need a wheelchair and cover that, but won’t cover the structure that will enable me to get into my house. I guess they assume I live in a building with an elevator? The cost of the ramp depends on how high your front/back door is, and the ramp should legally be one foot long per inch high. So if your front door is 24 inches off the ground, then you’re going to need a 24-foot long ramp. Any steeper, and you’re going to kill your shoulders trying to get into your home. I would advise against killing your shoulders.
- Cost: $4,000 (This was for the ramp at my parents’ house, but my neighbors (who work in construction) built it at a discounted price. It wasn’t technically built to code because we didn’t have the space for it, but my parents push me up the ramp so that I don’t injure my shoulders).
- A mechanical lift would be more expensive.
Acupuncture: Your insurance might cover acupuncture. Mine did not. In order to maximize time, my parents paid an acupuncturist to travel to our house five times a week (mostly during my gap year before I started college, and anytime I was home from school). This helped with my sensation in general, and with bladder control, especially within the first couple of years after my injury. The acupuncturist made a deal with my parents in which he would travel to our house and treat all three of us (because at least that way he had more patients).
- Cost: $120 per session (the price fluctuated over this time period, in which we even paid for him to travel to Baltimore while I was there for a month – my family is kind of intense). I had 886 sessions (or 66,450 needles…which actually left a lot of bruises), which came out to $130,470 from 2008-2014. Yeah. Expensive.
Push to Walk sessions: At some point I’m going to write a Push to Walk-centered post, because I keep mentioning them in parts of my posts (and I do intend to write a post that explains why I go here instead of to a regular PT place). But that’s for another day. Push to Walk is a non-profit gym I go to in New Jersey that provides individualized workouts to people with spinal cord injuries, paralysis, and other neurological conditions. When I’m not at school, I work out there three times a week for two hours per session. I describe it to people as physical therapy, mostly because saying, “I go to the gym” doesn’t quite cover it – because most gyms don’t strap gym-goers into harnesses and put them on a treadmill, and most gyms don’t have FES devices and other specialized equipment. This is the gym that helped get my core and arms strong enough to wheel myself around England in a manual chair for a year. I also mentioned in an earlier post that I spent my gap year before college working on my core/trunk muscles, which made it much easier to adjust to living independently at college. And guess what? This lovely place isn’t covered by my insurance.
- Cost: $95 per hour
Why doesn’t insurance pay for this?
I have no idea. It’s in their best interest to pay for these things, mostly because this equipment keeps people living with SCI out of the hospital, and hospital stays can be expensive. The Atlantic reported in 2013 that a trip to the ER costs, on average, $2,168 (which is slightly cheaper than purchasing a standing frame). Imagine all the reasons I could end up in the ER – pressure sores, blood clots, bone fractures, etc. With the exception of bone fractures, these are not one-night hospital stays. These are extended visits. A pressure sore can worsen quickly, and some will take weeks to heal. In a worst-case scenario, a pressure sore can be life threatening. And these health risks do not get any better with age.
It’s possible that health insurance won’t pay for my PT equipment or for Push to Walk sessions in part because insurance isn’t the most keen on preventative care (for SCI-related conditions, anyway), and likely wouldn’t pay for my long term outpatient physical therapy anyway. And if I want to sound cynical, insurance companies generally don’t expect my condition to improve. When I was an inpatient, I was told that the extent of my recovery would happen in the first six months, and maybe in the first two years if I were lucky. After this time, my doctor told my parents that my condition would worsen. But what I have found through using my medical equipment regularly and continuing to go to Push to Walk is that people have the potential to improve long after they’ve sustained their injury if they keep working. Activity-based restorative therapies (including FES cycling) are highly beneficial for, among many things, health and recovery (see here and here – many thanks to the former Push to Walk trainer/current PhD student who knows way more about where to find information on this stuff than I do).
Additionally, although scientific literature from as early as the 1970s (and possibly earlier, but the earliest article I found was from 1973) describes the health benefits of FES equipment, insurance companies claim that there is not enough proof that this equipment helps (or at least that’s what they told my family). To be fair, some insurance companies approve FES cycles, but they are not nearly consistent enough.
So how on earth did my parents pay for all this if insurance didn’t cover it?
- Car insurance: Fine, perhaps I’m cheating here by saying that my parents’ car insurance, rather than their health insurance, paid for some of my equipment. It covered my FES cycle, standing frame, and ramp (in addition to my backup wheelchair). If you know someone who was injured in a car accident who would need any of the equipment I mentioned above, check to see if any part of their car insurance will cover medical equipment costs. In my experience, they were far more lenient about what counted as medical equipment than my parents’ health insurance was.
- Fundraising: We fundraised at my high school through their Parent Association and their Alumni Association (which helped pay for a lot of acupuncture and Push to Walk sessions), and held a fundraiser run that was hosted by a running store near my house. I was very fortunate in that there were some generous people affiliated with my high school. For those interested in doing their own sort of fundraising, Push to Walk has a helpful Fundraising Kit on their website. Others can use GoFundMe, KickStarter, and the like. People can be so supportive after someone sustains a spinal cord injury, and they always ask how they can help. Prayers and well wishes are always welcome (and hugs, because who wouldn’t want a hug?), but if they have the time to help you fundraise to get the medical equipment that will allow you to stay healthy, that would be fantastic.
These “Cost of Disability” posts aren’t exactly the most entertaining, but they’re necessary. As you can imagine, not everyone can afford these pieces of equipment, even with fundraising. As a result, many with SCI experience, among other conditions, blood clots, pressure sores, lower bone density, and muscle atrophy. The first two conditions can land you in the hospital. Lower bone density (i.e. osteopenia, osteoporosis) can increase your chances of a bone fracture.
It matters that health insurance doesn’t cover certain types of physical therapy or devices, because people with disabilities are then forced to bear the financial burden of staying healthy. Sure, my health insurance will cover my hospital visits, but I don’t want to end up in the hospital to begin with (I mean, who does?). Unfortunately, health insurance companies don’t seem interested in preventative care for individuals who are told that they have conditions that will supposedly worsen over time. Until something major happens and insurance companies change their policies, people with disabilities are going to have to do a serious amount of fundraising just to stay healthy, stay out of the emergency room, and have a higher quality of life.