Wednesday, December 30, 2009

IBI Not-So-Happy Ending

Well, it's official. We figured as much, but right before Christmas we found out that Esme does not qualify to have her IBI therapy covered by the government. The reason? She's doing too well. The reason? (Among other things) Her IBI therapy.

It is so ridiculous and disgusting. The fact that we have paid for therapy for her, that we have spent every extra dollar we have (and some we don't), have asked friends and family and strangers to help us provide for our daughter only means that now she is considered to be "moderate-low" in her abilities, and thus is ineligible to receive IBI.

We asked if it meant anything at all that a mere 8 months ago she was diagnosed as non-verbal, severe autism. It doesn't. Because we don't "know" that it was the IBI that helped her get better. Even though research shows that IBI is the most effective therapy, even though the government only funds IBI therapy, we can't be sure it was the IBI that has helped her progress. I think I should put a call into the local hospital... we are paying for all this chemo and radiation for cancer patients, but how can we be sure that its the chemo getting rid of the tumour? Sometimes they just get better by themselves, after all. Think of the money we could save! Ridiculous.

So, according to the IBI center, Esme is best served with community supports. You know, the 30 minutes a week of group speech therapy she receives. Oh, did I say every week? I meant every other week.

The worst part of it all is that the lady who gave us the news actually said that its kids like Esme, who have the skills she has, who do the best with IBI. Who go on to attend school without a ton of (or any) support. Who go on to have jobs and live independent lives. Who really bloom with IBI therapy. But in Ontario, that comes with a big IF. They do the best IF their parents have access to an extra 50000 plus a year to fund a full-time therapy program.

We do not.

And so we are at a cross roads. We cannot indefinitely fund IBI programs for Esme. Even another month is out of the question right now. The choices we have are all difficult, and there is no real light at the end of the tunnel, money wise. Raising enough to fund a full time IBI program is more than I have energy for right now.

We have a few new therapy options we are looking in to. I will continue to do IBI type activities with Esme to try to build her skills.

It makes me so sad though, to know that as hard as Esme has worked, she now falls through the cracks. Our kids deserve so much better than this.

6 comments:

Brenda said...

Fuck.

Steph said...

Jane, that is super crappy and I can empathize with the situation you're in. We keep getting the run around with Quentin and sit in some sorta limbo land too.

Keep up as much as you can at home cause that will help Es out so much!

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