Friday, May 29, 2009

Why My Daughter is Skinny and I Stress Eat

What a long-feeling week.

I'm still fighting the Regional Center on, well, everything really. They sent me on a wild goose chase for the following after I asked for help with PediaSure:

1. A denial letter from WIC. Ok, whatever. I could tell them that we didn't qualify, and they could easily look online and verify, but no. I needed to make an appointment, take off from work, and get a letter. - Done.

2. A prescription from the Ped saying that PediaSure was recommended. So I called and requested one. Which required me to play phone tag with the Ped for a while and then explain to her what I needed it for. Granted, it was nice to chat and go over the issue as a whole, but then I had to send BD over to the office, 30 minutes away, to pick it up in person. - Done.

Mission Accomplished.

I was pretty proud of myself too. I got it all done in record time.

Then, I spent the next few days attempting to get in touch with our Service Blocker Coordinator, who eventually tells me that I've "forgotten" something.

Yeah, whatever. That is so not the case. Unlike her, I write down important things that people tell me.

Back to the now-longer list.

3. Obtain a denial letter from our insurance company. Uh-oh. Now this one is tough. Apparently, they just don't give stuff like this out all willy-nilly. [deep breath] First, call the insurance company. They tell me that I need to request the Ped's office to request from them an authorization for PediaSure. Then, they will say no decide how to rule and send notice back to both me and the Ped's office within 14 days. Hm. So I did that last week and then, in the midst of typing this out, I call the Ped's office (again, some more) and see if they've heard anything. Amazingly, they have. Today. Not so amazingly, the answer is no. Yay? - Done.

I mean, I would have been happy with a "yes" of course, because that would mean that we'd be done, BUT I knew it wasn't covered and now this means that I remain at the mercy of the Regional Center and our PITA lovely Service Blocker Coordinator.

So, in the midst of all of this, I went to Social Services, remember? That was...fun.

The thing with MediCal is that if you qualify for it? You qualify for WIC.

And with WIC you get to drink all the PediSure you want.

Well, maybe not really. I'm sure there's a limit, but I couldn't pass up the opportunity to write that because for some reason, that would be really hard to explain here, it cracks me up and I need a laugh.

Anyway, so not only would we have the elusive MediCal that comes in handy when you really need something to come in handy, we'd have insta-access to PediaSure, which is how this whole most recent mess got started in the first place.

Win-win. Right?

Of course not.

Insert Service Blocker Coordinator.

Again, trying to get in touch with her is difficult, but I do realize that she is not my personal concierge so I cut her some slack. Nevermind that I'm still waiting, after 3 weeks, for a new IFSP meeting. Slack? Being cut.

Oh, so wait. I did accomplish something at Social Services on Wednesday. I turned in enough personal paperwork so that, in the wrong hands, we'd be financially ruined. When I called the Case Workerto inform her that the info had been submitted, she informed me that the only thing that remained was the letter of support from the Regional Center.

*sigh*

Back to the Service Blocker Coordinator. After a lot of blah blah blahing with other people in the office, I find out that she is there and get transferred to her, but only because no one else there has a clue about the Institutional Deeming waiver I'm seeking. Not that my Service Blocker Coordinator does either, but still. I'm her responsibility, for lack of a better term.

More blah blah blahing about how busy she is and how she went on vacation and...(I stopped listening. Don't worry, it wasn't relevant.).

Then she asked me about the IFSP meeting. Huh?

I reminded her that I was still waiting to hear back from her about that.

Totally different can of worms.

So then she tells me that her boss said that only permanent clients of the Regional Center can qualify for Institutional Deeming and permanency is determined at age 3.

I call BS. Immediately.

My child does not have a singular condition that is considered temporary in nature. She is not possibly going to "age out" of the Regional Center at/before age 3. This does not apply to us. Try harder.

Plus, I have this nifty guide on Institutional Deeming (from another Regional Center) that I found somewhere and thankfully held onto that reads:

The child must be an active client of the regional center. Although this status is generally determined for the child at age three, if his or her medical condition warrants, a child may be given active status prior to age three at the discretion of the [regional center] physician.

So there.

And this? Is why I want Reese's Peanut Butter Cup Cake for dinner.

7 comments:

ds.mama said...

I got dizzy just reading this! I feel for you. And I would love to eat that cake with you.

My name is Sarah said...

This is Joyce. Holy cow, we must have been doing basically the same thing all week. You for pediasure, me (well sarah actually) her week of respite/resident camp paid for. It is incredible isn't it? The amount of crap we deal with. Eliminate all the roadblocks and they could have paid for Pediasure for life. You're doing a good job of staying on it - I truthfully think they hate that. They are counting on you just going away.

Michelle said...

Keep at it. I'm amazed how different each state is - in WI, there's a program that (quite easily) qualified Ru for state insurance. With that state insurance, she also gets WIC, even though we wouldn't have qualified for WIC otherwise.

Stay on it, though - the supports are there for a reason.

datri said...

{{hugs}} How frustrating! I think they make it so annoying so people just give up. I had to walk into the SSI office and tell them we didn't qualify in order to get the Medicaid waiver. The lady was shocked and said most people don't walk in wanting to be denied, LOL.

sheree said...

I totally feel for you. Not that it would neccessarily make anything any better, but have you requested a new service coordinator? I don't know if you remember or not, but I had some "issues" with my original service coordinator a while back and I have since been assigned a new person...much better!

I just don't understand why everything has to be so dang difficult or why some (most) people at the regional center look at you all cross-eyed half the time you ask a question. It is frustrating beyond belief.

Let's get together...bring that cake please.

Wendy P said...

Chrystal - you go Mama - I don't envy you the hoops through which you're jumping and jumping and jumping and...

And unrelated - yes - the Earthbound Farms newsletter print edition will get you on their mailing list for coupons.

;)

Cate said...

I'm tired just from reading that.

Keep fightin' the good fight, though.

And that cake looks AWESOME.