at least the pictures are pretty...

Thanks to Facebook, I sometimes forget what I've posted on the blog and what I've upload to FB from my phone, but wanted to get these up here because they are cute and make me smile - Noa is wearing an old pair of my glasses by the way. She likes putting them on and taking them off. She even made up the pretty bead headband herself. Very creative.

So.... you might want to look at the cute pictures every once and a while as you read this post.

Mostly on this blog I've been focusing on Noa's successes, and even in the time of trial I've tried to focus on her - not the system. But the system intrudes and so often takes Ben and I away from focusing on Noa so that we can fight with the people who are supposed to be helping her (and us!).

Tuesday we have a hearing to determine if Noa's Medicare will be cut off. Back in April they suddenly sent us a notice saying that in 3 weeks she would cut off because they approved her by mistake (their mistake, not ours).

This was especially surprising to us because we went through a lot of trouble to get Medicaid... 3 years ago! And every year we've had to re-up her Medicaid (also no small task) and every time its gone smoothly.

All of Noa's therapy - basically her school too (which is where she has most of her therapy) - is paid by Medicaid. So to cut her off without warning basically take her out of school and therapy and we'd have to start all over which would take up to a year. If she did not qualify for Medicaid that would be one thing... but she does. There is a whole catagory of Medicaid specifically for kids like Noa. And everyone we've talked to agrees. The problem seems to be some paperwork.

We applied for a fair hearing and got services extended until the hearing (which is Tuesday), and resubmitted all our paper work (from soup to nuts, not just the stuff they thought we were missing, because the apparently couldn't find some of her paperwork). We were hoping we'd hear back about the new application before the hearing - making the hearing unnecessary. But we haven't heard. I'm sure at this point my legal advisor (Ben) would tell me to say no more about the particulars our situation, so I won't. But I will say that we've spent the past 24 hours trying to figure out if - after all our efforts - we still didn't have all the right paperwork. It now seems that do, but if you want a sneak peek at what that road is like, check this out.

The OMRDD wavier, which is now an OPWDD waviers, covers all the same stuff as a CAHDD or CAHPD but it doesn't waive all the same things and has different paperwork. In trying to figure out what is waived in each Ben visited the Help Desk at MAP, which is an arm of HRA. They said to talk to CAH, but CAH didn't know how to apply for a CAH and sent Ben to MAP. They sent Ben to a website that also didn't have it the form. If you click the link it takes you to OPWDD - because you still need OPWDD eligibility to get the CAHDD Or CAHPD - and we have that. This all has to be done through your MSC who can prove that you already have a FAP (which you get by getting a FAP service, but you can't get that unless you have a waiver - which you apply for with your MSC that is assigned to you after you get your FAP, and there's a waiting list for that. But it doesn't matter because you don't have the MSC or a waiver to get you the FAP, so you have to prove that if you had a FAP, then you could get an MSC - which you can only get once you've been approved using the form that only your (non existent) MSC can submit for you. Of course you can't get any of this until after you go through the process of being rejected - at which time you can apply for approval.

Confused? Maybe the cute pictures will help? Yeah, just look at the cute picture and cross your fingers for us Tuesday!