OK, as my first blog, I have to say that this will be one of those ranting and raving posts that everyone loves to read and agree with or flame and hate on. Normally, I try to be optimistic and thread humour through my issues to make them easier to deal with. But this is one thing that I cannot abide by, and that is injustice and discrimination against children. My child, in particular, has suffered since birth with a disability of the body, not the mind and has been treated like garbage because she has her wits about her.
She was born with myelomenigeocele spina bifida. In short, her spinal column didn't finish forming and her spinal cord isn't a cord, but rather like a pancake. In addition to this delicious picture, the spinal "pancake" was protruding from her back, all wrapped up in a meningeal sac and fluid. She had to be delivered via C-section at a large hospital and immediately moved to the NICU. She had to be laid on her stomach and monitored constantly due to newborns having a knack for apnea on their stomachs. She had surgery at 36 hours old to make her spinal "pancake" into a spinal cord and line it up in her back like it should be. The surgery went very well and her recovery was speedy and miraculous. Normally, recovery from a major surgery like that takes several weeks and lots of pain medicine, but we were released after day 9 and she didn't even need Tylenol for pain. Needless to say, my daughter is a trooper.
During our hospital stay, we were contacted by a social worker who asked us if we intended on applying for Social Security Disability. We said we were, as we were a young couple with a tiny income and less means. We applied with the understanding that we would not be denied since she was diagnosed and treated for her condition since birth and it will cause permanent nerve damage that will affect her mobility in the future and possible mental side effects.We applied and didn't receive word for over six months. When we did receive word, they asked us a few questions about how she has recovered ad what we thought and we answered favorably because everything we'd been through had been fairly well, thus far. The person making the call said he would be in touch and we never heard from him again. Two months after that phone call, we got a letter from the Social Security Administration saying that there was nothing medically wrong with our daughter and she was denied. We hired a lawyer to fight this and he told us it was pointless and not to bother trying again.
Needless to say, I was pissed off. My daughter, who has now been diagnosed with GERD and tibular torsion (twisting of the shins and tibia bones), was perfectly healthy and uneligible for help. Right. And I'm 5'9" and am hotter than Giselle. *Insert eyerolling here* Well, I kept applying (by myself) until they accepted my daughter. At that point, we were receiving maximum benefits because I was out of work and my husband hadn't received his promotion (which I'm very proud of him!) and were renting the upper portion of my mother's house. Yes, we were very broke and very much in need of help. And we received it, for a time, thankfully.
Then I started working again. I found a very good job which I love and I make better than minimum wage without a college degree. I was thrilled. And then the payments got cut in half. OK, we can handle that. Since I'm working and bringing in an income, that's fine. Our expenses are no longer higher than our income. We're making progress! Yes!
And then we used the extra money to save up for a house down payment. And then we found a house. And then we bought it. And then they discontinued her disability entirely. And then we had to start going to specialists 3 hours away on a regular basis. And then we got told that because we make too much money for her to be disabled, she doesn't get Medicaid anymore. You see where this is going, right? Do I need to go on?
Anyway, at this point, my daughter is now 2 years old, she has to have special braces to keep her feet straight, we're having some difficulty potty training her, she goes to physical therapy every Friday, and she sees a specialist 3 hours away at least once a month. Not to mention the diapers we go through because of her bowel/bladder problems. And gas. Oh, and did I mention we have to have a walker for her to use to walk with? What about a stander so she can bear weight on her feet properly? And specially made outdoor toys so she can be outside and enjoy the sunshine. It adds up, people. Quickly.
Now you can see why we're a bit peeved about them cutting the disability checks. And now I'll tell you something else. Did you know that they only consider income and assets, not expenses, when deciding whether or not you're disabled? It doesn't matter what the doctors think or if you are in dire straits. If you make enough money that you're at or above the poverty line ($20000ish a year, I think) then you don't get what you need to help you survive.
Now here's my rant and rave. It's been a long time coming and now it's arrived! I am of the opinion that if you live in America and have to have a urine test to get a job, you should have to have the same urine test to get assistance. I work and pay the taxes that help disabled and underprivileged Americans get through their lives. I think that since I have to work and pay those taxes and have to have urine tests to make sure I'm an upstanding member of society that everyone who takes my tax dollars needs to be tested for drugs as well. If everyone who received benefits was tested, there would be less abuse of those funds and more funds to go around. People who are using them for their own personal "get high" cash can get lost and let the people, like me, who are actually working and TRYING to get ahead and make sure my daughter has a good life can get the assistance we need.
And also! They need to take into account expenses of the necessary variety. Grocery bills, doctor bills, medicine, housing, utilities, and possibly transportation. Maybe they would get the picture. Even those of us that are working still need to live. I work to live, I don't live to work. So I'm sorry I don't earn lots of money. I'm doing my best, and progressing. But I've made mistakes and have taken setbacks and I've also been proverbially knocked down a few times. I'm working on it. But don't you DARE take it out on my child. She is an innocent little girl that needs help. So get your head out of your ass and frigging help her, you jerks!
Rant over. Thanks for reading! :o)
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