Wednesday, September 9, 2015

Failure to Appear

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Last Wednesday was Noah's appeal hearing regarding his anti-suffocation pillowcases for his anti-suffocation pillows (which the State approved).  I called in when scheduled only to be told that the Court was having difficulties trying to reach someone at the State to participate in the hearing.  They certainly were aware of it, as they received written notification by mail, a notice from the Court and we had a verbal discussion about it in August during a meeting with the State on various issues and concerns.  So, I was rather surprised that they didn't make an effort to participate in the hearing.  I was worried the Judge would postpone since they could not be reached and failed to appear for the hearing.  But he took my testimony and asked me a handful of questions for clarification on the issue. 

One might think maybe that will be in my favor since the State decided not to even appear, much less file anything to explain their denial, but the Judge was still very clear that if the State provided a reasonable explanation for their failure to appear he could potentially entertain hearing their side.  Part of me wonders if the State didn't even bother because they figure they'll just file an Exception to Initial Decision - just like they did with Noah's Krabat Pilot win last year and overturn anything a Judge does anyway.  Maybe this is their way of snubbing their nose at the system because they know they have the final say regardless of what a Judge thinks.  It's really hard to second guess their intentions. 

It's an exhausting dance that I do with them.  And just when you think you've seen it all they do something else that blows my mind - like not even bothering to show up for a Court issued hearing.  Yet, there I was on time and ready to do battle, even with a very sick Noah that I was trying to care for at the same time, while attending a Court hearing by phone on his behalf.  Without complaint I managed to juggle all things at the same time - behind the scenes without anyone even knowing the heavy load of my day. 

And I've been really worried about Noah's health.  He's been sick frequently since May, with this last time being the worst.  And it doesn't take him long to get to a bad place - it's totally different than when his little brother gets sick.  So I'm sure I wasn't as sharp I as I could have been for the Judge had my mind not been racing about Noah and his dangerous sounding cough.  Still I think, I offered the clearest picture I could, and had a decent detailed strong Motion behind me, with exhibits that I think painted a good picture of the issue, something the Judge admitted he wasn't used to seeing.  But, with my legal background it's the only way I know to present an issue to a Court of Law.   I'm sure most parents just write letters - which works too.  Do whatever it takes just don't let the State steamroll over your child's rights.

The State is forcing my hand to continually appeal just about everything these days.  Yet they aren't penalized not one bit for brushing these things off like it's nothing.  I received Noah's formal denial for sensory clothing - or at least that's what we'll call it.  I suppose categorically it could be labeled adaptive clothing - in my mind it's the same thing.  Although it would have sensory benefit, it also would help with Noah's skin condition, which is easy to document in pictures and in his letter of medically necessity (which the State reminded me means nothing.)  I think still what unnerves me the most is that I had approval for many months with simply with unreasonable discussions on how the State wanted to go about that approval (i.e. me send them a check for my unspecified portion and a 50/50 proposal) when I knew for a fact that wasn't in the guidelines, and then when I spoke up and challenged them on that issue, the TRUTH struck a nerve with them and they decided to deny it as a penalty to me. 

And you just can't do that.  You can't approve something for months and then turn around and deny it.  That is a tremendous abuse of power.  Yet, I still need to work on filing an appeal for that too - something I'm dreading knowing the time it takes me to accomplish.

Today I learned that families that were being able to utilize benefits that Noah was denied, were terminated from those services.  Likely because I brought it to the State's attention that what they were doing was unfair if they weren't equally offering benefits to all like Noah across the board.  I still take issue with it, as they are still allowing some parents to utilize certain benefits but only if they are LESS physically disabled than Noah is.  Children with Autism and Aspergers for instance have often greater access to other benefits where children like Noah who are severely handicapped are denied under the exact same waiver.  A waiver that is currently designed to be universal across the board regardless of diagnosis. 

It feels very much like your hands are tied behind your back though - I see the problems - I can tell everyone about them, shout it from the rooftops in fact yet I lack any ability to change it, fix it or make it fair for all children on the CES waiver.  Some parents are blind to them - some don't care, and some much like me don't know what to do.   I can't even do a good job for Noah anymore since I've become so outspoken Noah is now suffering the consequences of me being a strong advocate.  A fear that many parents have so they hesitate to ever participate in questionnaires that could lead to their identity, or speak up publicly about problems, or even write about issues or orally discuss problems.  Because they know if they do their child could easily be targeted for even more denials than they already are.   I'm proof of that. 

Someone asked me if I wished that I had just stayed quietly on the sidelines and sucked it up, and not made waves with the State.  But I think if you don't stand for what is right then what is the purpose of all the
"Be sure you put your feet in the right place, then stand firm."


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.