And Finally: A Squeaky Wheel
Do you have a story about how self-advocacy worked for you? Share it with us.It's true—the squeaky wheel (or in my case, the squeaky wheelchair user) does get the grease!
Self-advocacy is one of the core principles of independent-living philosophy, and its effects are never more important than when interacting with today's healthcare providers such as HMOs, physicians' offices, or durable medical equipment [DME] suppliers. In the past year I found myself having to squeak loudly, often, and to many different players in my pursuit of a new manual wheelchair.
It had been eight years since the acquisition of my last wheelchair. At the time, I was an employee of Maricopa County [Ariz.] and had received my medical coverage from several HMOs and PPOs over the previous nine and one-half years, most recently from CIGNA Healthcare.
For the most part, I found navigating the CIGNA HMO relatively easy. Just [use] the primary-care physician, or gatekeeper as they say, and everything will move smoothly. If you play by the rules and receive prior authorizations to see specialists and get prescriptions for medications and supplies, everything is usually 100% covered, minus some nominal co-payments. It is a system that worked well for me. Rarely did I have a complaint. I received the care I needed—when I needed it. However, my pursuit of a new manual wheelchair was a slightly different story.
In October 1999, I began my journey. Not being sure of the process, I inquired at various levels to determine my responsibilities. I talked to my favorite DME supplier, CIGNA customer service, and my CIGNA doctor. I was told to have my doctor write a prescription and complete an order for DME with justification and wheelchair-brand specifics. I took it upon myself to write the justification and specifics about the wheelchair I wanted and faxed it to my doctor, [whose] staff assured me they would handle processing the order and send it to CIGNA for authorization. The wheels of progress were moving—or so I thought.
Six weeks elapsed, and I heard nothing. I once again called my doctor's office. They assured me the paperwork had been faxed to CIGNA. When I called CIGNA, they explained that no record of my paperwork could be found. I asked my doctor's office to re-fax the paperwork, which they agreed to do. The wheels were again put in motion.
Another month elapsed, with no response from CIGNA. When I called CIGNA customer service again, I was informed that wheelchair purchases must be handled by their DME provider, Apria Healthcare.
So I called Apria. I explained to the Apria representative that I wanted a Colours wheelchair similar to the one I've been using for the past eight years. I explained this wheelchair best fits my needs because it is lightweight, easy to push, and easy to transfer in and out of—all of which ensure my safety and preserve my arm strength.
The customer-service representative (CSR) informed me I could not just have any wheelchair I wanted, but I could get a standard chair costing about $600. To this I said, "Bull feathers." A standard wheelchair clearly would not satisfy my needs; it would be heavy, difficult to push, and hard to transfer from.
At this point I began to realize there was no clear process for obtaining the wheelchair I truly needed from CIGNA, and if there was, nobody was going to explain it to me!
My journey continued for several months. I was surely frustrated by all the failed phone conversations. More importantly, I had little time to dedicate to this process while working full-time for Maricopa Health System. Finally, I decided to visit Apria Healthcare in person.
In the course of 30 minutes, the wheels of progress were truly moving. CSRs were making phone calls on my behalf. I was scheduled for a seating clinic. My doctor's office was called. My paperwork was being processed. The financial intermediary, Genteva, was called to approve the authorization, which they did. I was indeed on my way to getting a new wheelchair.
Although the next several months had some continued snags in the process, I finally did get the wheelchair I needed delivered to me in November 2000.
I learned some important lessons from this endeavor. First, don't give up. Second, don't take no for an answer. And third, definitely go see someone face-to-face. This will ensure greater accountability and immediate attention.
Self-advocacy is about sticking up for yourself when nobody else really cares. So, remember: The squeaky wheel does get the grease—and sometimes, a new wheelchair.
Phil Pangrazio is Arizona Bridge to Independent Living (ABIL) executive director, in Phoenix. His comments appeared in ABIL's newsletter, The Bridge (February 2001), and are used by permission. Contact: (800) 280-2245 / (602) 256-2245 / 254-6407 (fax) / firstname.lastname@example.org.
And Finally: A Squeaky Wheel
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