The government is so twisted, it's ridiculous.
And frankly, it pisses me off that so many people easily get on Welfare and food stamps, but when it comes to trying to get Medicaid for my disabled daughter, it's like jumping through hoops that are set on fire and trying not to get your butt singed.
When Wendy was born, the social worker at Vanderbilt told us to apply for SSI because Wendy had a permanent disability and we would be able to use the money to take care of her and to supplement the income that I would never have the opportunity to make because I would be staying home to care for her. Included in SSI, was Medicaid- which would be very helpful because Zed's army insurance ran out when she was 6 months old and just because no insurance company could technically deny her coverage because of her disability, they could certainly make the premiums so high that we couldn't afford them.
Wendy was denied SSI, because Zed made too much money. I was fine with that because we were making ends meet okay and we didn't need the help of government check. However, the problem of insurance was still present. Zed joined the National Guard for a year, non-deployable. However, when this year is up, we have to figure something else out because if he rejoins and his unit deploys, he goes too. And I do not want to be a single mother with a disabled child.
That's when we started the process for the Katie Beckett waiver. Our first problem with the KB waiver was the case worker we were given. She's rude and about as useless as tits on turtle. Every question I asked about the parts of the forms i was supposed to fill out, she just skirted around answering the question, but saying things like "you need to include estimated monthly costs" apwhen I asked if I was supposed to include the cost of seeing her surgeon and specialist in the monthly costs of physician services. I had all the rest of the paperwork filled out by Wendy's pediatrician like I was supposed to and faxed it in. Now she calls and says it needs to be mailed in. Oh, and it has to be there before the 15th or her case is denied. Also, on part of the paper the doctor filled out is a recommended level of care that must be completed. The only options for that are, "hospital", "nursing facility", or "intermediate care facility for the mentally retarded". Well Wendy doesn't need any of those levels of care. She is taken care of just fine at home. So I asked for her to explain each further. She emailed me back saying:
"A level of care must be selected. If not, Wendy does not qualify for this waiver. Hospital- same level of care a hospital provides. Nursing home- same level of care a nh provides. And, IC/MR is intermediate care/mentally retarded facility."
That did not help at all.
And on top of having to deal with the fact that Wendy is most likely going to be denied, I also have barely gotten any sleep. Wendy didn't go to bed last night until 10, which is highly unusal- she's usually asleep by 4-6pm. And starting at 12, she woke up every single hour. So this mommy has had no sleep. I'm assuming she's probably teething, but whatever it is, I hope it passes soon, I don't think me or Zed will be able to function if this continues much longer.
Hi Jamie... You do not know me but I saw your post on my friend Amanda's blog about having a unique one of a kind child also, and I started reading your blog too. Of course as I come to this post I am outraged and would like to just say a few things. Our Government is crap and will never change. But please do not stop fighting for what you are entitled for. I understand the whole ssi which in my book is very very stupid, but in all honesty fight it and don't give up.... fight for your daughter's rights to money that is taking out of your husband's checks for this very reason. You are entitled to that source of income whether he makes to much or not.... so basically they are saying your daughter's care and needs should be solely supported by your husband and your care and needs, as an army man.... what do they think he is president of the united states!! Secondly on the medicaid.... be patient with the forms, so they are filed out correctly by you.... if you have questions on something and you cannot get answers from the social worker, which I will go into in a minute, then ask your daughter's dr to the best of their ability what you should select... medicaid is for the elderly and disable, but more of the questions pertain to the elderly if you ask me. On to the social worker, if she is not providing the assistance you need, then make a report with anybody and everyone until they give you someone that actually wants to help you. You have enough stress in your life that you do not deserve or need to deal with theirs too!! And on that also, if you don't get the help that you desperately need, fight them too--even if it means going through the whole court appeals, you are entitled to it. I would rather see someone like you receive all the state assistance in the world, then some druggie or lazy lowlife that chose that life for themselves. You did not choose this life for your daughter, but they are making it seem like it is your fault somehow by all of the bull they are putting you through, and it should not be that way at all!! Put the lowlifes that don't want to work through it, or the drug addicts/sellers through it, but not you!! Just remember you are entitled to the help and don't settle for anything less. I hope and pray that you get all the help you need and that it doesn't turn into a huge battle against them, but if it does then fight and fight to your fullest. prove a point that you are not going to take no as an answer. I wish you all the luck in the world!!
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