I was born in 1970. About a year later I was diagnosed with spinal muscular atrophy. I never walked. I got my first wheelchair at kindergarten age, and my first power wheelchair in sixth grade.
Yet, around 4 to 6 times per year I have to, for one reason or another, prove that I'm disabled.
Granted, I'm 5 feet nothin', 112 pounds and sit in an electric wheelchair, but apparently that's just anecdotal evidence… We need science!
The Good Doctor
Every couple months I have to send my physician a form and ask him to fill it out. He has to state that I have spinal muscular atrophy, identify the diagnosis date, explained that my prognosis is something akin to "ain't getting better any time soon" and sign it.
With new Medicare regulations, the good doctor is not allowed to sign the said form without seeing me "face-to-face" to prevent fraud. Although I'm extraordinarily healthy, hospitalized last in 1996 for something unrelated to my disability, I go see my doctor every six months like clockwork.
Here's my typical conversation:
Doc – "Good afternoon, Mr. Tweed". One reason he is my doctor is that he speaks to me like an adult. I'm 46 and he has about five years on me. He could call me Jason, but he definitely shouldn't call me "son", "sweetie", "hun" or any of the other condescending titles I've been given by various healthcare practitioners.
But I digress…
Doc – "Good afternoon, Mr. Tweed."
Me – "Good afternoon, Dr. P." I'm not going to publish his name, but it's one of those extremely long last names common to the Indian peninsula. I purposely learned his name and its proper pronunciation. Given his level of respect, it was the least I could do.
Doc – "What brings you in today?"
Me – "Just here to prove I'm still disabled."
Doc – "That time again. Let me take your vitals".
Apparently "vitals" are pretty important to the process. They always take them. None of the paperwork said that I had to be alive, just disabled, but I figure it's better not to argue. If I have no vitals, they will probably cancel my insurance.
Blood pressure – Yep. Pulse – Yep. Respiration – Check.
Then he looks in my eyeballs to make sure they are still there. He checks my ears, freshly de-waxed. He sticks a Popsicle stick down my throat and looks deep into my soul. Nothing remarkable.
He listens through the stethoscope and taps my belly. I'm not quite sure why, but maybe he is superstitious and my belly resembles The Buddha. Good luck.
Then he opens up my chart. He has a piece of paper in my chart that tells my diagnosis, date of diagnosis, and prognosis. He copies those on to the form, and handwriting that is stereotypically chicken scratch, adds a date and the signature.
Doc – "See you in six months."
Me – "Hopefully no sooner."
Why Do I Have to Prove My Disability?
I understand some of the reasons I have to document my disability. Medicare and Medicaid fraud aren't rampant, but they do exist. I receive disability insurance payments, which are permanent, as long as I am alive. (Now I remember why vitals are important.)
However, let's take a look at some of the things I've had to ask my doctor to fill out over the years.
Prescriptions for a wheelchair, actually that takes several. First he has to refer me to a physical therapist, who has to determine that yes, indeed, I can't walk.
Prescriptions for an adjustable bed. Apparently wanting to watch television isn't a good enough reason.
Prescriptions for mechanical lift, to get in said adjustable bed.
Authorizations for a catheter bag, because they don't want any normal people urinating in a bag just for the fun of it.
Orders for a shower chair. After all, the toilet on wheels is a luxury. I'm sure lots of people would skip the whole walking to the toilet, and standing in the shower.
Maybe I don't want to shower, how about a bath. I'm going to need a special permit for the device to get in the tub. Apparently sitting during hygiene must be well regulated.
I take ibuprofen for headaches. It's difficult for me to swallow pills. I can take children's ibuprofen, but to get those adult dose I have to drink about a quart of purple flavored phlegm. So my pharmacist mixes ibuprofen into a suspension. I only need to take one filled shot glass. Apparently, this highly specialized medicine also requires a note from my doctor.
Pharmacist – "Well, at least we can charge it to your prescription coverage now."
Me – "Great. Out of curiosity, how much would it be out of pocket?"
Pharmacist – "$3.00"
Me – "Seems legit. Here's my card."
Pharmacist – "Your plan has a co-pay. $2.00"
Well, I saved a buck this month. Thank goodness for Dr. P.
The DMV for Non-drivers
So I can't drive. Pennsylvania used to charge a fee to have a state ID. The ID card used to be called a "nondrivers license" (WTF?!) It was $15 for a license not to drive.
The DMV rocket scientist brigade offered me the chance to get my ID for free since I am disabled. Terrific.
We just need a doctors note verifying your disability. Apparently, sitting for an hour in the DMV in my wheelchair wasn't verification enough.
Back to the doctor. Verified. Another hour at the DMV.
DMV - Here's your card and your fee has been waived.
Me - Great, how much did I save.
DMV - $15
DMV – Would you like to apply for a disabled parking permit?
Me – Yes, please.
DMV – Great. We just need a doctors signature on this form verifying your disability!
Me – Doesn't the other form I gave you today apply?
DMV – No, we have to have an original signature on both.
Me – Why wasn't I giving both forms at the same time?
DMV – You requested a non-drivers license. We didn't think you would need to park.
My parking permit would arrive in a week or so. It'll hang on my mirror with its oversized bright blue wheelchair. Then I'll be able to park in a space with an oversized bright blue wheelchair on it, marked by a sign with an oversized bright blue wheelchair. It's conveniently near curb cut, marked with… Yeah.
Under the wipers, a ticket.
My van has a raised roof, a lower floor, and a ramp that slides underneath. The body extensions to cover the works make me feel like I'm driving one of those GTA vehicles, running from the cops, and shooting at pedestrians. All I needed is some lights underneath to be a playa'.
Then I remembered that I'm driving a Toyota minivan. I ain't no playa, it's just how we roll!
Apparently the Parking Enforcement Officer, which is only one initial shy of a PEON, gave me a ticket for parking my accessible van in an accessible parking space. Handwritten on the violation was the words "no permit". Apparently this permit thing that I haven't had for years is a bigger deal than I had imagined.
Went back inside the DMV. They said they couldn't do a thing. Fill out the form and plead "not guilty" and write a letter explaining the situation.
Form filled. Form mailed.
10 days later, I open the mailbox.
DMV, office of handicap parking. Looks official. Yeah, parking permit.
District Magistrate, Office of Appeals. Also looks official. Boo, my not guilty plea means I have to go to the magistrate in person a month later.
I rolled into the magistrate court with parking permit in hand.
Me – "Not guilty."
His Honor – "Do you have a parking permit?"
Me – "Yes, it's right here."
His Honor – "Why wasn't it on the vehicle?"
Me – "I was inside dropping off the application."
His Honor – "So the permit was not yet valid on the date of the ticket?"
Me – "No Sir. Am I required to have a permit to use the space?"
His Honor – "No Son (again with the "son"). The permit prevents fraud."
Me – "Is there an abundance of parking fraud?"
His Honor – (Clearly getting perturbed) "Apparently there is, we wouldn't have a permit."
Me – "So I am legally allowed to use the space if I'm disabled, even without a permit."
His Honor – "Yes, absolutely. As long as you were disabled at the time of the incident."
Me – "Okay. I've been a wheelchair user for 40 years."
His Honor – "No problem, I will find you not guilty pending documentation for the record."
Me – "Documentation?"
His Honor – "Yes, it's simple. All we need is a note from your doctor!"