by Sarah | Mar 7, 2012 | All About Kennedy, Crap, Cystic Fibrosis, Special Needs, SSI, WTF?
[flickr id=”5293689107″ thumbnail=”small_320″ overlay=”true” size=”small” group=”” align=”left”]I have spent the past 3 months jumping through hoops. Doing everything the government asked. Going to appointments that seemed ridiculous. After all, she is covered by SSI for Cystic Fibrosis. It’s a set diagnosis. It’s not going to change.
I thought it was just normal. Three years had passed, they did a re-evaluation and we’d go on our merry way as we had been.
I never imagined we’d get a letter declaring the cessation of benefits.
That somehow, according to the government, Cystic Fibrosis is a condition that stands the chance of improving.
That somehow, 2 hospital visits, the addition of a very costly monthly med, a decrease in vitamin levels, a continuing need for nutritional supplements all equal an “improvement” in her condition.
I’ve already met with the lawyer.
Filed the appeal.
I get to go to court (woo-frickin’-hoo).
Continue to jump through their hoops. This time w/ a good lawyer on our baby’s side.
Stupid government.
by Sarah | Jan 17, 2012 | All About Kennedy, All of Us, Crap, Special Needs, SSI
[flickr id=”5888961016″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Four years ago we jumped through hoop after hoop. We went to all of the exams, evaluations and tests needed for Angel to get qualified for SSI.
We were denied.
It took getting a disability lawyer to send in the paperwork for them to say yes.
Three years since our official qualification (thanks to the lawyer & the lovely fee they took out).
Now we are up for review.
For CF.
CF is not currently a disease that gets BETTER.
So we jump through the hoops again.
Pray that this time we aren’t denied again and are forced to go back to the lawyer to push the government back into reinstating what we’ve been qualified for for years.
It’s not like we’re trying to bilk them. If we were we’d reapply for Riley. We’d apply for Brandon. I’d work if I could so we didn’t need the SSI, but as we so recently realized that’s not a possibility if we’re to keep Angel on the insurance we so desperately need to keep.
I’m tired of jumping through senseless hoops.
Angel has CF. What is the purpose of a Speech evaluation and a psychological exam? They have no bearing on her disease at all. None.
Stupid hoops.
by Sarah | Oct 29, 2007 | SSI
Let’s do this in order. The lawyer…well, it’s good news, bad news, bad news.
1. Good – She’ll take our case. Specifically, she’s taking K’s. She offered to take Molly’s too because I was “so nice” and she could “Tell what a struggle this has been for us.” She did explain why she thinks they turned it down and pointed out that, as we have seen, at this stage of the game they aren’t too particular about getting up to date info, etc. She said I could do the appeal and come back, or let her take the case now. She’s taking it now. We mutually decided to not to Molly’s because her case was even more muddy and unsure than K’s (yes, K’s is muddy because while she has CF…her case isn’t “serious” at this point so it’s not so cut and dry).
2. Bad – She’s predicting that it could, quite possibly, have to go to court…and that over time it will take us 18-24 months to get anything. 18-24 months…and to top that off…
3. BAD – I shouldn’t get a job. Financially we are borderline for qualifying. If I get a job…we no longer qualify. I’m supposed to call SSI to verify this…but she’s pretty sure, even with a 5 person household we are right there.
So, we have representation and we can only PRAY that SSI takes a better look at our case this time because we have a lawyer…otherwise we have a very long, very poor road ahead of us. BUT, I really liked the lawyer. She was very nice and I could tell that she really felt for us and our case…and that gives me confidence.
***
Onto K’s shiner. Yesterday afternoon during the heighths of my pain, K was walking around playing. She was playing by the bookcase (Yes, Jess…the bookcase that hurt their toes)…trying to take the books out (despite my telling her no). Well, she had a spell of weakness, or slipped on her pants (they were a little long), I’m not entirely sure what happpend..but she ened up on her knees…hitting her eye into the corner of the lower bookshelf. Luckily it was the corner, the eye socket, so no internal damage…but this is what it looked like last night:
by Sarah | Oct 29, 2007 | SSI
This morning is our appointment with a lawyer about SSI. Yesterday, through the pain, I gathered up a list of all of the girls specialists and therapists and put them in a spread sheet (Yes, Jess…a SPREAD SHEET). I got together my SSI folder, and every possible thing they could need that my poor little brain could think of.
Now I hope I got everything…and I hope that they really don’t mind me bringing the two monsters…and lastly hope that the nasty hump of my shoulder and K’s shiner don’t make us too unseemly 😛
I will be posting later about the meeting and K’s shiner (with pictures!!)
by Sarah | Oct 17, 2007 | SSI
Well, we got the second denial today. The one for Molly (as we were expecting it to be). This time, though…all I could do was laugh. They claimed that the medical evidence supported a good rate of growth currently (not a total lie, I suppose)…but then it said that there wasn’t any problem with her communication and that she was 100% intelligible!!! WTF? I don’t know HOW they got that, since she said NOTHING during the Speech Evaluation…and I certainly never said anything like that in response to the questions she asked me!!
I have called a lawyer and have an appointment on the 29th to find out if either case is viable and if they’ll take me on. Keep the fingers crossed!
On another bad note. K had her nutritionist appointment today. She has lost ANOTHER 7 oz (after losing 8oz last appt). That’s one pound in two months. She can’t eat anymore except liquids and baby food…the poor child is starving. I don’t know what they’re going to do.
On that note…in the good realm, the feeding study has been moved UP to Monday thanks to a fluke w/ scheduling!! So, Monday we have our feeding study…hopefully they can tell us SOMETHING!!
by Sarah | Oct 13, 2007 | SSI
We got one of the two SSI decisions in today’s mail. The government has decided that my daughter is disabled…but not enough to receive assistance. She sees 5 specialists, can’t eat properly, and receives regular speech, physical, and occcupational therapy…but she isn’t disabled enough for us to get assistance for her. I was blown away. I am also broken hearted. I swore that if they turned her down, I would fight it, appeal it…but we can’t afford to wait. It took them five months to come to THIS conclusion. We have gone through every last penny of savings…we do not have the money to go through a lengthy appeals process. They won. I feel completely defeated. I have to go get a job…so that we can pay our bills.
I expect Molly’s decision any day now…and my optimism is gone. The eternal optimist is no longer.
I never thought I would feel this defeated this early on.
