This is the story of my daughter Oliana who was born blind. To read her complete story start with the blog titled Oli's birth. You can email me at shannongardner@live.com




Friday, January 8, 2010

YOU MEAN SHE DOESN'T QUALIFY FOR SSI AND MEDICAID? BUT SHE'S BLIND...

This is a question I often get asked from family, friends and therapists. Sad, but true. I have applied twice for SSI and Medicaid for her and both times she has been denied.  Even though she's blind. They claim we make too much money. On paper this may look to be the case but, if you look at our expenses, so far in the red!!! They don't give us credit for what we actually spend on insurance premiums, out of pocket money for insurance claims, or our rent.  I actually now have to go down to the social security office and find out if it would benefit us more if I didn't work.  Can you believe that?  We might actually make more money if I didn't work, she got some SSI money and she recieved medicaid.  Right now we pay about $900 in insurance premiums for both insurances. We have to have two because Seth's is only an 80/20 and he has to carry insurance by law because he has to carry Thalia on his policy. Mine is pretty good insurance but, it is not contracted by her therapy so that's not covered and we're waiting to find out if her eyes will be covered.  It's an in network only policy and we have to drive to Dallas for her prosthetics. If we only have Seth's insurance we end up paying thousands of dollars a month in co-pays.  Pretty much what we're doing right now because of the things that aren't covered. 

I'm so fed up with this whole system!!  It's so disheartening to think that in our country we get penalized for trying to be productive members of society.  I don't want to stop working but, what other choice do I have?  When she turns three she will go to the school district and I won't have to pay anything for that.  She'll go to school in September for 4 hours a week, 5 days a week.  That will be great but, what am I supposed to do until then.  I feel like the government expects me to just sit here and do nothing for her until she's 3.  No therapy or any kind of intervention other than the measly services they provide her.  They won't even let me have double therapy.  They were providing her with physical therapy for one hour every two weeks.  Of course that isn't enough for a kid that doesn't walk and is almost 3!! So when we went for outpatient services and she qualified for PT.  She gets it at Kidworks twice a week for an hour each time.  Now the state is telling me that I can't have both.  I can either go with their therapist and get it once every 2 weeks or pay for it myself at Kidworks and get it twice a week. With OT/PT/ST that comes to $640 per month that we have to pay. 

It's so frustruating!!!!!  I have to do the best for Oliana but, why does the rest of the family have to suffer because she needs extra help in life.  And who has the right to say that she shouldn't get that help??  Certainly not some high up beuracrat with all his beautiful healthy children. Who never had to go through all this shit!!  They want to evaluate my case based on figures on a piece of paper that do not even reflect our true income status, not to mention quality of life... They even put it right in the denial letter that they did not even look at her disability, just denied us right off because of those stupid numbers!!! I'm going to call my insurance company to see if they will make an exception and cover her therapy. I seriously doubt they will but, I have to try.  There is also another program in Texas I'm going to apply for. I think it's more for kids with medical disabilities but, I'll try. That seems to be today's motto.  So, I'm off to the social security office to be fed more bullshit and become even more pissed off!!!

2 comments:

Anonymous said...

I'm sorry things are so frustrating. It isn't fair that you aren't able to receive SSI for Oli. Too many times real cases get denied because of how things look on paper...while other people are able to claim it when their child does not have the kind of difficulties that Oli and many other kids face. I wish you good luck in figuring out how best to fight the system. :(

kimishoe said...

Girrrrl--I'm so there with you! We've been denied, too for the same exact reason. Some guy was hassling us to apply when Kale was still in NICU. We asked him up front, is it going to matter what our income is. He asked us what it was, then told us we'd be fine. So we apply and as we're filling out the paperwork, he looks at our income and says "Oh...you may not qualify". Are you effing kidding me??? I was in tears I was so pissed. We're convinced he was just trying to meet some sort of quota with applications or something. We had already been turned down for other services due to us making "too much money" which is b.s. in itself as my husband is the only one working. We have a mortgage and all our other bills which they don't even look at. Yet, a girl I know can get it for her son who is mildly autistic but can function no problem in the real world (no, I'm not saying that's not a disability--but it's definitely not the same as what we're dealing with!).
Anyway.
I get what you're saying and feel your grief. And it sucks.
I'm sorry you're having to deal with all that extra crap. I hope somehow you're able to get what is needed for Oli.