Prior to the snow skiing accident that rendered me a C3-4 complete quad in 2004, I knew about as much about power wheelchairs as the next nondisabled guy. I thought they were sold between Showcase Showdowns on The Price is Right. I woke up from my injury inside a confusing new world with very little guidance on how to navigate, feeling isolated with nowhere to turn for help. Now I needed my own wheelchair (in addition to a bunch of other expensive stuff) and there was no Showcase Showdown for me to win. Like many of us, I was forced to learn to survive the hard way.
It all started when I was in rehab dealing with a particularly insensitive sales rep from a major mobility company who seemed far more concerned with an upcoming Hawaiian vacation than properly outfitting me with my first wheelchair. A brief moment of clarity when the fog of my injury lifted helped me realize that I wouldn’t settle for that kind of treatment at a car lot; my new pair of legs deserved a far better effort.
The day I was discharged, I contacted a DME provider halfway across the state. Their salesperson showed up at my house with two wheelchairs and built me a usable trial chair in my living room. The experience taught me that if I wanted to get my needs met, I would have to learn to advocate for myself.
Build Relationships Within the Industry
When you have to fight for every shred of adaptive equipment, there is nothing more infuriating than dealing with people who seem tone deaf to your needs. The unfortunate reality is that it’s rare to find someone as passionate about their job as you are about living a full and independent life, so self-advocacy requires a constant level of vigilance that can be uncomfortable at first. It can mean a lot of repeated phone calls and emails with awkward conversations, but this can help separate the nine-to-fivers from the people who care.
In those interactions, sometimes what you say matters less than how you say it. As great as it has felt to vent my frustrations at a receptionist or delivery driver, I have found I get much further with polite persistence than bitter complaints. Your energy is better spent cultivating solid connections than burning bridges you may need later.
“If you can find a good tech, they are worth their weight in gold,” says Bill Miller, an entrepreneur living with a C1-2 injury in Leesburg, Florida. Miller, who has almost 20 years of experience in a power chair, says he has the most luck getting his needs met by dealing directly with the seating technician at his local mobility branch. Working closely with his tech has helped educate Miller on the proper fit of his equipment, making it easier to communicate his needs to others within the industry.
Getting to know the local representative of your equipment manufacturers (Quantum, Permobil, etc.) gives you another option. You’ll often meet these representatives at expos and trade shows, or when trialing their chairs when it’s time for your new one. Not only will they have in-depth knowledge of the idiosyncrasies of their products, they are not tethered to one specific DME provider, so you can work with them even if you decide to break away from the one you use now.
In desperate times, it’s not what you know, it’s who you know. When my chair was sparking in the Philadelphia Amtrak station last summer and the local mobility outfit was closed, I called my Invacare rep hoping for a miracle. Within minutes, I was on the phone with his local counterpart who graciously left happy hour to come bail me out.
Connect With the Community
Of the first six years of my post-injury life, I spent exactly half that time on bedrest battling pressure sores because my skin could not seem to cooperate with the seemingly infinite permutations of ROHO cushions clinicians and I tried. If it weren’t for a random encounter at a Kiwanis fundraiser with a C5 quad named Dan McConnell, I may have never gotten healed and rejoined the world.
McConnell introduced me to the RIDE Designs custom cushion and soon after, I got my own. Meeting him showed me how crucial peer connections are when it comes to navigating the system as a whole. Getting wheel-to-wheel with people who advocate for themselves on a daily basis expedites your own evolution from frustrated patient to informed customer. Whether it is the pros and cons of specific equipment, or which local providers are better than others, you get the benefit of all their experience without having to suffer the kinds of setbacks that cost some of us months or even years.
It’s an idea that spawned The Here and Now Project, a social support network for paralysis survivors and their supporters in the Pacific Northwest [see “Starting a Support Group,” August 2016]. By securing free meeting rooms available at public libraries — all over Washington state — we’ve created safe spaces to discuss issues and learn from each other. Suddenly, a gathering of 20 or so individuals from all walks/rolls of life with wildly different perspectives coalesces into a group with hundreds of years of collective strength and wisdom ready to be mined and put to use.
Get Creative with Funding
At some point, connections within the industry and community will only get you so far. The secret weapon in a self-advocate’s toolkit is the tenacity to search out extra funds. Whether it is through your respective state’s vocational rehabilitation, private grants or a simple car wash at your neighborhood gas station, money is the ultimate bargaining tool.
When it came time for Jesse Collens to order his second wheelchair last year, he left no stone unturned so that he could find a way to pay for upgrades not covered by state insurance. The C1-2 quad, an outdoorsman and live music lover who lives in Federal Way, Washington, had his sights set on upgraded motors for longer trail rides with friends, as well as seat elevation. “It looked like a handy feature for going to concerts or being in social environments with larger groups,” he says.
By working closely with his therapists and social workers, he discovered the Northwest Access Fund, a nonprofit focused on helping people in the disability community acquire the assistive technologies they need most. Formally known as the Washington Access Fund, the NAF recently expanded its offer of low-interest loans, matched savings accounts, and other financial tools to Oregon residents as well. With the organization’s help, Collens was finally able to assemble his ideal wheelchair instead of settling for whatever showed up. “To be able to see over walls and especially crowds at concerts, it’s already been a huge help,” he says.
Also, if you were injured before the age of 26, keep your eyes out for ABLE accounts in the very near future. As a result of the passage of the Stephen Beck Jr., Achieving a Better Life Experience Act of 2014 (better known as the ABLE Act), states will be rolling out tax-advantaged savings accounts for individuals with disabilities and their families that will allow them to save money for qualified expenses — big-ticket items like education, housing and transportation — without jeopardizing their eligibility for SSI, Medicaid and other public benefits.
Although currently only fully open for enrollment in a handful of states, almost all the rest have signed a version of the ABLE Act into law in the last year.
Remember, You are a Customer, Not a Patient
Getting the equipment you need and learning to advocate for yourself are not rocket sciences; they are skills developed over time. They can seem daunting when you are at the bottom of the hill looking upward, but they get easier. Whether it is insurance, a fundraiser, your own checkbook or a combination of them all, you are spending thousands, if not tens of thousands, and you need to make those dollars count.
By connecting with others in your community, you can educate yourself on the equipment that meets your needs and find resources outside of your primary funding, transforming yourself into an informed customer with plenty of negotiating power. When it came time to order my third chair a little over a year ago, I took my time. I knew what I wanted, and I knew my budget, so I challenged my local manufacturer reps to sell me on why I should choose their model, and the more responsive DME provider in my area was rewarded with my business.
Standing up for yourself can be difficult at first, but the more you make a habit of it, the easier it becomes. Pretty soon that sense of empowerment will become less of a struggle and more of a lifestyle. Collens sums it up perfectly. “I feel more motivated to be independent every day, to take charge of what is going on in my life.”