2nd Insur. Appeal & IEP Fight Today

[tpotter]

Well, today, we are the lucky recipients of a "2-fer". We have our 2nd level appeal for insurance (Dr. K. will be on the phone with me), AND we get to go fight the school district again. AND I get to try to squeeze a full workload in the middle!

 

For those of you who don't know, my 14 yo son was supposed to get IVIG with Dr. K.2 weeks ago, and insurance denied it. He actually was going to get PEX with Dr. L. prior to that, but it had to be put on hold at that time, and he is desperate (so's my 17 yo, but that fight is just starting.) I will be sitting in my car, outside my client's house (I've already told her I'll be late) while there is an annual review going on inside the house. I'll be on the phone with the insurance company.

 

THEN, I get to hustle up to the school district (about 45 minutes away), and continue the fight for the right IEP and placement for my 14 yo. We arrived here from NY with a 504 plan 3 years ago, and our school district decided to ignore it. Long story short, he completely fell apart, and they didn't care. Ended up with severe school phobia, hospitalized at CHOP for 4 days with scarlet fever, 104 fever, sydenham's chorea (he was already diagnosed, mind you, but CHOP dr decided to claim that PANDAS was "voodoo." Never was able to go back to the school district, and we placed him in a very expensive private school that specializes in stressed out kids. Then filed Due Process (liken this one to an extremely messy divorce), and then finally settled in June (we filed last October.) Now, they're fighting us again, even though our lawyer told us they wouldn't do that after settling (and it really doesn't make sense.) We actually have an excellent advocate going with us, who used to be a hearing officer, so she really knows her stuff, and had me do some things to prepare that are really excellent (like an "I told you so" letter...basically, if he goes to the school, gets ill and/or gets too stressed out, he WILL have a flareup. I then listed about 25 things that are liable to happen in flareup, and also told them about how PANDAS works (describing molecular mimicry.)

 

Anway, I'm rambling here, but I am horrendously stressed out. This has been going on for 3 years with the school district, and 6 1/2 years with PANDAS, and I am just horribly overwhelmed. If I could just get my boys treatment, like this week, I'd be ok. But, it has dragged on and on, and we are so dysfunctional at this time.

[kimballot]

I wish you ALL THE BEST today. I so hope everything falls into place for you. Please keep us posted!

[melanie]

Although I can completely understand every freaking thing your going through I cant tell you enough times that someday things will get better...Soon I hope..Your doing all the right things.You may need to try a different MD to get approved by the insurance.Thats what I did .One Md coulndnt get it so I went to ,well 3 others.ghot one to say abcdefg and the insurance company said ok we will cover that.

 

Ill pray for your boys

 

Melanie

[momaine]

Good luck!

[JAG10]

Good Luck Trudy!!!

 

Let us know how it goes all around.

 

No matter what happens today, we're NOT going to let up on Independence BC/BS! We will keep after them and keep after them until they cave by whatever means necessary. We'll continue to recruit our state politicians, we'll use the local media, we will not stop and (I know he needs help YESTERDAY) we will get them to cave eventually. We won't stop, we won't quit, whatever it takes, whether they realize they should either do the right thing or they realize we will cost them more in grief and bad PR, they are going to provide payment for the service that is medically necessary for our children!

[Tenacity]

Your woes are familiar to me. As if the illness itself weren't awful enough, we are forced to deal with a barrage of medical and educational system professionals pushing us around and treating us like pesky flies -- or worse -- like criminal suspects. It's absurd, unjust, destructive, counterproductive.... But you must not throw in the towel!

 

One thing to bear in mind: Sound reason and piles of evidence may simply "roll off" the bureaucrats like water rolls off the back of a duck. Unfortunately, my experience has been that being honest and being right are often useless in dealing with these people and with these bureaucratic systems. You need to "twist their arms" with the kind of "muscle" recognized within their backward culture -- e.g., doctors' oral and written testimony, attorneys' oral and written assertions.... No matter how wounded, frightened, or justifiably enraged you might be, stay (on the outside, at least!) as calm, cool, collected, confident, determined, and ever-polite as you possibly can. The message is, not only are you right, but you're going to do whatever it takes to get them to do what's right, and you're not giving up until they do....

 

At our first Committee on Special Education meeting, my husband and I naively went in on our own with three medical letters and a prepared presentation, and the committee smiled, condescended, and ignored all of it -- didn't even include the things we said in the minutes to the meeting. It was as if we were invisible. When we went back to the CSE to try again, we brought a doctor, an education attorney, and an old tape recorder with us. (When the CSE chairperson saw the tape recorder, his oily veneer disappeared for a moment, and he really looked as though he'd like to strangle me!)

 

We ultimately got the things we needed out of this meeting. But I truly believe it was not because the Committee finally "saw the light" (although they put on a good act) -- but because we had the doctor, the attorney, and the tape recorder, and, I suspect, someone "higher-up" had instructed the chair to be careful and not to leave the Committee vulnerable to a law suit.

 

Stay strong! Good Luck!

 

Tenacity

Edited July 22, 2010 by Tenacity

[forjpj]

Good Luck Trudy!! Sending good vibes, thoughts and prayers, whatever I can to help get you through this day!! Stay strong!! We are all with you!!

Sarah

[peglem]

Sending lots of prayers! I know how stressful this can be...many many struggles with schools over the years.

[Mary M]

Please know you have a full force of PANDAS parents standing strong behind you...I wish we were there in person but imagine us, out here in cyber-space, holding hands in one strong circle of support as you fight this battle for proper schooling and adequate medical treatment.

Mary

from Michigan

[tantrums]

Best of luck to you with all of it!!! Hang in there

[tpotter]

Thanks everyone. I survived. Dr. K. was great, and I know we did everything in our power. They were supposed to give a decision by the close of business today, so I'll call tomorrow.

 

The school district IEP dragged on for 3 1/2 hours. The higher ups still don't care (why am I not surprised) about what this would do to him to send him back at this time to the public school. They kept demanding that we give permission to have their physician talk to ours (i.e. Dr. L.), but I stated again that this was NOT going to happen. I told them they could have permission to have their physician read 1 1/2 hours of Dr. L's testimony at our Due Process case, as well as the opinion letter just written by his psychologist.

 

They tried to claim that Dr. L's testimony no longer applied, because it was given before the settlement agreement. We responded that it was an absurd position, given the fact it had only been 3 months since she gave it, if anything, he's gotten worse, because IVIG and PEX that were supposed to happen, didn't, and we are not going to play their games.

 

Our advocate also made it clear that they were taking a lot of responsibility of he got sick, and I really really stressed that one. At the end, I asked if I was going to have to send him to the school, and watch him get sick again, just to prove that it couldn't be done (and against 2 doctor's advice!)

 

The people at the meeting really did try hard, and we know they can do a very good job, because our 17 year old goes there (he has Asperger's and PANDAS). He loves it there, and they have been exceptionally accommodating. BUT, our younger son fell apart, because they never supported him, and personally, I think tortured him until he had his 3rd school refusal, and school phobia as well.

 

So, it all continues.

[peglem]

Thanks everyone. I survived. Dr. K. was great, and I know we did everything in our power. They were supposed to give a decision by the close of business today, so I'll call tomorrow.

 

The school district IEP dragged on for 3 1/2 hours. The higher ups still don't care (why am I not surprised) about what this would do to him to send him back at this time to the public school. They kept demanding that we give permission to have their physician talk to ours (i.e. Dr. L.), but I stated again that this was NOT going to happen. I told them they could have permission to have their physician read 1 1/2 hours of Dr. L's testimony at our Due Process case, as well as the opinion letter just written by his psychologist.

 

They tried to claim that Dr. L's testimony no longer applied, because it was given before the settlement agreement. We responded that it was an absurd position, given the fact it had only been 3 months since she gave it, if anything, he's gotten worse, because IVIG and PEX that were supposed to happen, didn't, and we are not going to play their games.

 

Our advocate also made it clear that they were taking a lot of responsibility of he got sick, and I really really stressed that one. At the end, I asked if I was going to have to send him to the school, and watch him get sick again, just to prove that it couldn't be done (and against 2 doctor's advice!)

 

The people at the meeting really did try hard, and we know they can do a very good job, because our 17 year old goes there (he has Asperger's and PANDAS). He loves it there, and they have been exceptionally accommodating. BUT, our younger son fell apart, because they never supported him, and personally, I think tortured him until he had his 3rd school refusal, and school phobia as well.

 

So, it all continues.

Glad the insurance thing went well- I've been thinking about you guys and praying for you all day.

 

Aaaaarrrgh! on the IEP meeting. I've had plenty of battles w/ obstinate schools...it has got to be the most frustrating thing. Shame on them-they should know better. They are trained to know better...they've built their careers on knowing better! I'm feeling frustrated for you! And they are wasting all this time when your child could be getting what he needs. I'll keep up my prayers for you on that front.

[kimballot]

I so hope this works out for you - on both fronts.

 

Regarding school - I cannot imagine a school taking a risk with 2 doctors making statements and with all that testimony from Dr. L. Whatever happened to a free and APPROPRIATE public education?

 

Regarding insurance- that is nuts, too, since they already approved PEX and it was not done because of difficulty at the center. It is so good that you are sticking to this. Is there another layer of appeal if they say "no" again?

[tpotter]

Peglem,

 

They know, they understand, they really don't care (there's no other explanation for what they have done.) No other school district would waste the time and money needed to fight us for 3 years, when they KNEW they were wrong (but our lawyer says that we shouldn't feel badly...they do it to everyone :-(

 

 

Kimballot,

 

The free, appropriate education does not exist here.

 

Insurance...I have no idea why they would approve one and not the other. If we don't win this, I really don't know what is next. We might have to pay out of pocket (which we don't have), while we fight. JAG10 contacted a state rep that she knows (she also lives in PA), and he has said that he will also take up the battle.

 

Now, if only NIH would get off their behinds and change that website! We wouldn't be having this problem.

 

I'll keep you all informed.