Monday, March 11, 2013

Adding (bureaucratic) Insult to (permanent) Injury

It started with a realization: children Maya’s age were walking and running, and she was creeping unsteadily with her walker. Because of this, she was relegated to a stroller a lot more than other children her age . . . which seemed counterintuitive to the whole learning-to-get-around-independently goal. Walking independently would come slowly, with devices and splints and soreness and falls, and long distances would be more or less infeasible, at least for a solid few years. And so three years ago we applied for a handicap parking permit for Maya, an accommodation that she clearly qualified for and would benefit from.

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
                -school special ed
                -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 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.


Unknown said...

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!

Three of Cups said...

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!

Unknown said...

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.

Mel said...

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!!

Erin said...

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.

icansaymama said...

This is clearly completely impertinent! I'd get so mad and frustrated, too!

Brielle and Me: Our Journey said...

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.

Dawn said...

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...

Just the Tip said...

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!!!!

Paula said...

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.

Julie said...

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. :)

marie clare said...

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

Amanda said...

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.

Anonymous said...

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.

Nancy Cavillones said...

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...

Anonymous said...

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!


Anonymous said...

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.

Anonymous said...

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.

Helen said...

My gosh. I'm angry, frustrated, and in disbelief that they're putting you through this for a simple parking permit!

Marcela said...

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:

The more support we have as parents the better for our children.

Thank you again for your blog!

SerenityByJan said...

OMG, is this what it's like to live in New York City? Do you ever want to move? It sounds so hard.

Ellen Seidman said...

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.

Bonnie@TheFragileXFiles said...

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.

Special Apps, Special Kids said...

WOW! Someone in that office has a chip on their shoulder! And now glad the process is much simpler here in California.

Anonymous said...

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!

Kristi Campabell said...

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....

Anonymous said...

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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