Insurance will drive you mad. And being a special needs Mom I spend hours dealing with insurance, copays, deductibles, and everything in between. I dislike every insurance, I dislike we can't get federal help since Maelee is "not disabled enough". We are the family that will fall through the cracks and there isn't a soul who cares.....except us!
We are thankful for our early intervention program through the CDSA.....but this August we will fall into the category of "too rich" to get full assistance for our daughter. Her therapies alone will cost us more than our mortgage every month. You see the wonderful world of insurance puts caps on how many therapy sessions a person can receive....and Maelee is way past her limits. We are blessed to have the CDSA picking up the extra right now and helping with her schooling/CRBS during school but in August we have to pay 60%.
60% doesn't sound like a lot but it is. Thankful it's not 100%...that will come when Maelee is 3! Maelee has been diagnosed with Mild CP but according to our lovely government Maelee is "not disabled enough" to get any assistance. She spends hours in therapy, working at home, has SMO braces, and I know without therapy she wouldn't be where she is.....but her disability is determined by the government, not the people who take care of her! It's beyond frustrating. I am not asking for handouts, I don't want free insurance, I just want my baby girl to have all the opportunities she can have. And come August we may have to cut therapy sessions out, cut down on time in therapy, or just sell everything we have to continue with her care plan as it is.
I just wish someone would spend a week with us before deciding what is best for Maelee, or that the state I lived in would dig it's head our of .....well you know and realize that we need waivers for people who don't fall into the categories so nicely. That people come in all different shapes, sizes, and needs. That just because she can walk doesn't mean it didn't take an army to get to this point and won't continue to take an army. Because she can use her left side doesn't mean we are done......it's a life long process for her.
I know that ranting about it won't fix the problem but if I could write a post about all the people, places, letters, and times I have been put on hold for hours just to hear "NO" there would not be enough space on any blog for it. I keep trying, I keep searching, and I keep hoping that something will change, that we will find an answers to help Maelee......then I realized today that I am the answer, My husband and I are the answer.
If I have to sell everything we own, walk miles to work, and give up every belonging I have that is exactly what I will do so Maelee can continue to grow and learn while having all the help she needs along the way. Until the government starts to see that disability isn't a description for one category, one problem, or one type of person I will continue to move forward and give Maelee what she needs.
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