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

                -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.

You gotta fight (!) . . . for your right (!). . . to party (?)*

My new books arrived in the mail today . . .

. . . watch out, Mr. "You don't have the right to that, I only have to give you a school placement." Now two of us will know the laws.

Or at least one of us will.

Come to think of it, you seemed confused on some of the details. I could bring them to the meeting in case you need a refresher.

:)

Also, I put up a new poll.   Be interactive, chime in---it only takes a second (or two), and it makes me happy to see votes come in (you know, like there are really people out there).

Learned Helplessness & Early Intervention

Warning: The first three paragraphs here are kind of science nerd-y, but I tried to keep it short, sweet, & simple, and I think what I'm getting at here is really interesting from a psychology standpoint.

The Theory:
As you may or may not know, I was a zoology major in college.  I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology). 

There is a very interesting model of animal (and human) behavior called "Learned Helplessness".  Basically, experimenters exposed dogs to a series of shocks.  "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks.  Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them.  "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks. 

Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up.  They  didn't assert themselves.  They were depressed.  (Human tests have found similar results.)

I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.

The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system.  I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry.  And, honestly, I'm still pretty ticked.  Here's the backstory:

I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints.  Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay. 

Causing a big delay?---Ha!  Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore.  Now I'm trying to get on people's nerves like it's my freaking job.  I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.

If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:

10:15: Called Service Coordinator work line, left message

2:00: Called SC's cell phone (which she prefers to be reached on), left message

2:30: Called SC's supervisor, left message

4:15: Called SC's work line again, left another message

4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.

She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things."   Thursday.  Thursday?  If she calls Thursday, the signer person won't even get the message until Friday afternoon.  And no way they'll call her back on Friday.  So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH

I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers.  So tomorrow I'll start calling the new number.

How can this be so hard.

My effingg kid can't walk. I need these splints. Sign the papers.

I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )


In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."

And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't.  You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.

Plus---think for a moment about these calls I'm making.  I'm trying to get splints so that Maya can stand and walk.  Everyone who is in Early Intervention has kids with specials needs who are younger than 3.  So these people trying to make the calls?  We're pretty much near the end of our emotional rope a lot of the time. 

We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.

We are already angry and frustrated, feeling like we try to help but things don't work.

We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".

-or-

We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".


Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly.  For now anyway.  I'm sure I'll get frustrated again :)

So that's where I've been.  And now , here are some totally random pictures from the weekend, just for fun:

Waiting for Daddy in the lobby of the building (he took this pic)

Shopping is so exhausting.   Sometimes I just need a break.

In light of these recent stressors, I've needed to up my caffeine intake.