In New York City, a handicap parking permit is a bit
different than the ones you see outside of the city. Here there are no “handicap
spots” on city streets, but you are allowed to park in a variety of areas (No
Parking, No Standing Except Trucks Loading And Unloading, etc) that are typically
off-limits to others. The permit lets us park closer to our destination, which
allows Maya to walk to and from the car, just like any other 4/5 year old
would. These permits are worth their weight in gold. If you could sell them on
the street (which you can’t, as they are all hologrammed up and have your
license plate number clearly printed in huge font on the front) they would go
for a pretty penny.
They aren’t easy to get.
And that’s ok. That’s fair.
Getting the permit proved to be a long process. We had to obtain a non-driver's photo ID for Maya (and if you think your license picture is bad, Maya probably has you beat). We waited to get her ID card in the mail, we filled out an application,
and then we had to have a packet filled out by Maya’s pediatrician. The packet asked questions about
the nature of her disability, the extent of her limitation. It asked,
prominently, if this is a permanent condition. He said that yes, this is permanent. (And, every year
since, he says that yes, it’s permanent.)
After submitting the application, we waited to get assigned an appointment with
a city-appointed physician. (This step, I assume, is to prevent city-dwellers
from calling in favors from their doctor friends and getting permits willy
nilly.) Then we waited until the date of our appointment. Then we went to the
city medical building, met with the doctor for 5 minutes, and he told us that a
decision would arrive in the mail. So we waited again. Finally, the permit
arrived in the mail.
It took about nine months from the time of our initial application to the time that our permit arrived. But we were happy. For a year.
The permit only lasted a year, despite the fact that my
child has a genetic condition that is not going to change. Although she makes
slow and steady progress, walking is hard work, climbing stairs is exhausting,
and balance issues add an element of danger to any path we travel. Despite the “yes, this is permanent”, the pass only
lasts a year.
Ok, fine.
After the first year the papers arrived to renew our permit,
and I was elated to see that we didn’t have to see the city doctor. It’s a gimme . . . you can get your pass renewed
automatically.*
(*except not really
automatically because you have to resubmit papers, and if you miss the deadline
then your permit would expire and you would have to start all the way back at
the beginning again, do not pass go, do not collect $200.)
Another year passed. This fall we got the big packet again,
forms for our pediatrician and the promise of a city-appointed doctor visit. Our
pediatrician filled out the forms (yes
this is permanent) and I mailed them in. As the days ticked by my anxiety
level climbed---we hadn’t yet received an appointment with the city doctor, and
yet our permit was soon to expire. A call to the permit office told us that
they were backed up and we would now* receive a temporary pass to cover the
time until they sent us an appointment time.
(*now that we called,
of course, because even though they knew that they were going to miss their
deadline and our permit would expire, they weren’t planning on making sure we
were covered unless we took the initiative to point out that we were being left
in the lurch. You know, like: “If you miss your deadline then no permit for you
but if we miss our deadline and you didn’t realize it in time, then no permit
for you.”)
In January, an envelope arrived. I assumed it was the notice
of our appointment time with the city doctor. I was so wrong. Below the picture I've pulled the
essential quotes from the letter:
In reviewing your
application, we find that the additional medical documentation is required.
-chromosome labs
-CT scan: brain
-developmental pediatrician
report
-psychological evaluation
-IEP
-school special ed
-neurology
-details of orthotics
The above requested
documentation should be on your provider’s letterhead and forwards within
thirty (30) business days of this notification . . .
You have got to be kidding me.
First, a minor (but infuriating) detail---they fudged the
date. While the top of the letter proclaims Date
Mailed: 1/7/2013, the postmark quietly confesses that it was actually
mailed a full week later. This is not the first time I’ve received
correspondence from this agency with date discrepancies, although it was the
first time that I thought to save the envelope and take a picture. With only 30
days to gather a lot of obscure medical documentation, they were trying to
shave 7 off the top. A 3 week turnaround on a plethora of papers that need to
be collected from hither and yon seems, well, unfair.
Not cool.
Second, a major (and also infuriating) point---most people
don’t have copies of their lab reports at home. Generally MRI results, genetic
lab results, developmental pediatrician reports, etc. remain in the doctor's office, in your file. Or
files, actually, because the MRI would be in the neurologist’s file, the
genetics labs would be in the geneticists’ files (that’s plural geneticists’
files, because we’ve worked with more than one geneticist), etc. That’s a whole
lot of paper-gathering that has to be done. Add to that the fact that some
doctors need written requests for copies of files and some hospitals need
requests to be made in person with photo id. Some places are happy to fax
things over, but not all people have access to fax machines.
Third, some of these things don’t exist. “Details of orthotics”? What does that
even mean? Is that something that I write? Or the physical therapist, or
pediatrician, or the place that created the orthotics? It’s clear as mud, and I’m fairly sure that
if I don’t read their mind correctly our permit could be denied on a technicality.
And now that the small stuff is out of the way, let’s get
down to my two major contentions: relevancy and privacy. Clearly, when we
applied for a parking permit, based on medical necessity, we must expect to
divulge some personal medical information. As a parent, it’s troubling to send
your child’s medical information into the great wide open, but that’s the
concession that comes with asking for a medically necessary allowance. So I
try to make peace with that.
I understand that they need to know about her disability,
and the pediatrician paints a clear picture in his forms and recommendations
and yes it is permanent. I respect
their request for information about her orthotics (do they really exist and what exactly are they for), and can
understand why they asked for her IEP (does
she really have physical therapy goals for this year) and progress notes
from the school (which could possibly say
that she’s met her PT goals and is now the champion at the 40 yard dash). Perhaps I can even understand the request for
genetics labs, although they are so intensely personal, because we claim that
our need for a permit is due to a genetic anomaly. (Although truly, a letter from the geneticist should be fine. The
details of my 4 year old’s genetic labs aren’t really necessary.)
But why the psychological
evaluation? There’s nothing
psychological about our need for a permit. At all. Truthfully, had we not been
going through the kindergarten process we wouldn’t have even had a psychological
evaluation to offer. Why the CT scan of her brain? First of all, it
was done in 2009. Second of all, it was normal. Third, it has no bearing on
this situation. A report from her developmental pediatrician? And her neurologist? Well, we haven’t seen the developmental
pediatrician since 2011, and no word from the neurologist since 2009, but sure,
I can see why you would need to see those reports, both of which are grossly
outdated and neither of which have anything to do with Maya’s need for parking
concessions.
It leaves me feeling like I have no choice but to expose an unnecessary
amount of my daughter’s private medical information. Because that’s exactly what
I had to do.
It was infuriating. And it felt very unfair. And I couldn’t
see any way around it.
So I sent it all in. On time. Labeled with post-its. Via
certified return receipt mail.
And I waited. I
thought to myself, They must have a plan
here. Probably, if you have a child with a permanent disability, you see the
doctor the first year, get an automatic-ish renewal the second year, have to
send in bucketloads of supporting documents the third year, and then maybe you
get a ten year pass or something.
When the envelope arrived this past Monday, I tore it open and was
shockedfrustrateddisappointedsoveryangry to see that the pass expires in
November. This November. 8 months from
now I’ll wait to see what they ask for next, and in which way I will be
expected to declare she’s DISABLED! She needs SO MUCH HELP! Let me prove to you HOW
DIFFERENT my daughter is and how many SPECIAL NEEDS she has and how it is
PERMANENT, it’s PERMANENT, and WHY MUST I KEEP TELLING YOU that she CAN’T WALK
FOR LONG and her BALANCE ISN’T GREAT and everything IS MORE WORK for her.
And everything is more work for me.
And SHE GETS SO TIRED.
And I get so tired.
I am so tired.
I shouldn’t have to fight annually for a parking
permit. I need to fight for therapies,
and to fight for school placements, and to fight for her rights over and over
again. I need to fight insurance
companies and to fight for assistive technology, and then to fight people to
use the assistive technology that I fought for. I need to fight prejudices and fight ignorance
and often fight her as she is pushed and challenged and learning to fight for
herself (I hope).
I shouldn’t have to fight, annually, for a parking
permit. It doesn’t feel right. It feels like I’m being asked to jump through
hoops and hoops, just for the sake of jumping and the hope that I miss a hoop
and don’t get the magic permit. It doesn’t
feel fair. I’m not trying to steal
something or to pull a fast one, I’m trying to get a pass that will allow my
daughter to walk to and from her destination, just like other kids her age. She
deserves it, fair and square.
It seems like it wouldn’t be much more work to grant a 3-,
4-, or (hey, let’s get a little crazy) even 5-year permit to families of
children who have clear and permanent disabilities. If not, why not at least
make the permit last 2 years, since there’s an automatic-ish renewal in there
anyway. Or maybe just ask for the
personal medical records that are actually essential to determining whether a
parking permit is necessary, rather than just checking (many, many) boxes at
random.
And to add insult to the insults to the injury, the permit
that expires less than a year from now came with the note below, which includes
the request to return any inactive permit(s) in my possession (please note the
fact that in the past two years it has never been mentioned that expired
permits must be returned). It ends like
this:
Please note that failure
to comply with this regulation by submitting the inactive permit(s) will oblige
us to make you non-renewable and prevent us from issuing you any future
Permits.
Of course it will.
33 comments:
That whole process was ridiculous! I'm sorry that you have to go through that--you shouldn't. I feel like gov't and insurance make all these hoops so that most people won't bother with it. What they don't realize (or care about) is that there are lots of people who need these things (permits, therapies, etc.) in order to survive and function and the time it takes to go through all their red tape is insane. I hate having to disclose so much personal and medical information too. I don't understand why the permit doesn't last a year like the previous one? Hang in there!
Holy crap! Have you tried calling your local/state representative? They can sometimes help with the crazy bureaucratic nonsensical processes... worth a try. I'm in NJ, but mine is very responsive to stuff like this. Good luck!
My kids and I live in western NY, and my son and I both have permanent disabled parking permits. I am appalled that the process for obtaining Maya's permit was so much more lengthy onerous and invasive than ours, what with our families living in the same state! I'm gobsmacked, really.
Wow, Can I just say how much our lives are the same! I get so tired of fighting these silly little things, when we should be fighting for all the special things our girls need!! SO FRUSTRATING! But glad you got the permit!!
This is maddening. I'm so sorry you have to put up with this crap. I'd love for your post to go viral and get some attention-put some pressure on the agency that oversees this. I get why it's got to be moderately difficult to obtain a permit, but there should be some way of making it easier for families once they've obtained them.
This is clearly completely impertinent! I'd get so mad and frustrated, too!
Oh my gravy. I am totally infuriated for you! How can they expect that sort of detailed information let alone the timing (of needing it and how long the permit would be valid). We live in Georgia.Our permit was free. Our physician simply signed a form provided on-line that had very few details. The permit last for four years. However, we did have to present the signed document in person and "forfeit" the expired hanging tag. We had a similar process when we lived in Ohio AND Texas - no details and each was valid for several years. This certainly needs some light shed on it. Simply ridiculous.
Oh my goodness!! There is no way I would continue to live in a place that treated my daughter so unfairly. In Indiana, I only had to have my child's primary care doctor sign a form stating my daughter's permanent disability (no other invasive medical info needed). Our permit isn't lifetime, but you only have to renew it every 5 years, not every year. What you are being asked to do is outrageous! Wow, just one more reason for me to never want to live in NYC...
MEDIA. This for sure needs media attention. Here in VA, I have my own pass bc of my heart problems, but P could EASILY have her own pass as well. I *think* they last 5 years with a simple one page sheet from the doctor and are auto-renewable. Granted we have more space here, and probably much more misuse of them, WHAT YOU ARE HAVING TO DO IS UTTERLY RIDICULOUS!!!!
I'm not surprised at all. If it was something easy, then poor Suzie Collazo wouldn't have anything to do all day! I live in the Washington, DC area. We have a pretty good public transportation system, but we also have a para-transit system for people who are disabled enough that they can't use the public system. A friend of mine who is congenitally blind has to get a signed letter from her doctor EVERY YEAR!!! to say, yep, she's still blind! Apparently if you are missing a limb, you don't have to send it in every year because they don't think limbs will grow back, but blind people might suddenly become sighted. My friend is still waiting for that to happen.
I can't believe the process they put you through!! It is a much simpler one page form for the doctor to fill out and then a trip to the DMV for a placard that lasts several years here. The process you are dealing with is truly ridiculous, but I think you probably know that. :)
Ahhh, there is finally one thing NJ is better at than NY with SN's, parking permits lol
What a load of beurocratic C*** you have to put up with
Dana, I read this and it made my heart race and my blood boil!! I am absolutley sickened by what you've had to go through for a parking permit! You're right, it's not right, it's not fair and plainly... it just doesn't make an ounce of sense. I'd be putting a phone call into a lawyer, honestly.
I have no words. Actually, I have so very many words but none that I feel I can write publicly. I'm pretty sure we got a three year pass in Maine with very much a check the box kind of application and simple note from the doctor, as it should be. I'm going to come back to this blog tomorrow and hope that maybe I dreamed the whole thing and it wasn't real.
You're amazing, and tired, and still amazing.
The city is stupid. I have a reduced fare MetroNorth card that is easier to get than a parking permit but every time it expires, I have to prove that I'm STILL deaf, even though I've been deaf since I was born and will be deaf till the day I die. I definitely think you should get some media attention on this...
My sympathies in that mess you have to go thru annually. In Illinois, the doctor just has to give a diagnosis and sign a form. The plate or placard comes in the mail and lasts 4yrs.
Although mine is legit, with ease of of placards of plates issues there is widespread misuse. People lend it their freinds for free parking in Chicago or great parking spots at Amusement Parks. In rare circumstances, due to the ease of obtaining permits-people who have doctors as friends obtain them for themselves. (Per a Chicago News investigation a few years ago).
That could be the reason you and others have to go thru so much red tape, though it seems like overkill. Hopefully over the years the DMV, will loosen the restrictions for long-termers. Good Luck!
--Lee
WTF! It makes sense to need to renew permits every few years, but like THIS? Not so much unless the government is granting you a freaking car!
I have a disabled transit pass for cheaper fare, and while it took some paperwork the first time (and let me tell you, it's pretty depressing to see a piece of paper with your name and the words "mental disability"...), since autism is permanent, when I renew--which is every THREE years--I pretty much have to check a box that says "I'm still alive". That's it, aside from the whopping $3 fee.
you should call your local elected official. call your city councilperson and also your borough president (some of those are more useful than others, admittedly.). then call the public advocate. all three of these have staff specifically to deal with issues such as these from constituents and it's absolutely unfair that you go through this every year.
My gosh. I'm angry, frustrated, and in disbelief that they're putting you through this for a simple parking permit!
I read your blog and once again I was disgusted by the relentless hoops people with special needs children have to go through. I definitely can relate. We just finished a battle with my sons school. They were refusing to put him in a traditional kindergarten setting. I as his parent feel that he needed to be in this setting. I finally got tired of the run around and ended up hiring a lawyer. I know with the state you cant really do that, but as other issues arise I have found it definitely made a difference. Best decision we made, He is now is kindergarten! :O)
Here is the link to the lawyer we used: http://csnlg.com/.
The more support we have as parents the better for our children.
Thank you again for your blog!
OMG, is this what it's like to live in New York City? Do you ever want to move? It sounds so hard.
This is amazingly HORRIFIC. Listen, I understand cities having to crack down on these permit because people do abuse them. But really, what they are requesting is over the top (understatement!) and surely if a child has a chronic condition they should be able to find a way to note it in their system. Guaranteed, there's probably no coordinated computer system, sadly.
I agree, you should try getting in touch with your rep. It might not hurt to send a copy of this post to the press office of the Dept of Transportation or whatever local agency is in charge of this.
I think they make it incredibly challenging to keep the people who don't REALLY need one from applying. Because there are fewer than are needed to go around. This doesn't make it okay to ask for all that personal, completely irrelevant information, though. Or to retroactively invoke rules with unreasonable and unfair penalties.
I'm a big fan of writing to and calling Congresspeople and news reporters. Do it. It can't hurt.
WOW! Someone in that office has a chip on their shoulder! And now glad the process is much simpler here in California.
That's crazy and I completely sympathize with you because I literally just went to get my son's permit in CT last month. It was beyond infuriating, but I only had to jump through six or seven hoops, rather than the hoop factory they apparently set up for you!
Wow, I am so sorry that you had to deal with inane bureaucracy that means NOTHING. It's so frustrating. And dumb. It's amazing what they decide to cut corners on...UGH....
Agree that you shouldn't have to go through all that CRAP! Copies of this blog need to go to your elected representatives and to all local newspapers.
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