This? This is not “improved”

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[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. Read more »

Stupid Hoops

[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. Read more »

by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.

Lawyer and Black Eye

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: Read more »