A rant about healthcare and a kid with special needs

This may be the beginning of a very long rant, and maybe only those with special needs children can understand where I'm coming from, but I just don't get why we have to jump through flaming hoops of death just to get our child NEED based aid.

According to SSI/ disability/Medicaid I make $500 more over the poverty line, and I have 1 car too many. (We have 2, one is mine and one is Rob's) Because of this my child cannot have Medicaid that would actually COVER the cost of all these specialists he has to see. Mind you they did not ask me where my money goes to each month, or copies of the medical bills, or really disclose anything other than my salary range. They just deemed me as ineligible solely due to what my salary is.

Yet a teenage mother who does drugs and yet find themselves to be completely poor can get Food Stamps, go on Welfare, and suck the life out of the system (mind you they also get the luxury of having a completely normal child, go figure!). I actually for a moment contemplated quitting my job so that my son can get need based aid because, well, he NEEDS it.

I'm sorry but unless you are a millionaire you cannot afford a child with special needs out of pocket. You NEED health insurance, in some instances YOU NEED Medicaid, and you NEED someone who knows the system that can help you get it. In 2010 adding up ALL of Seby's medical bills, including his heart cath., dr's appts, medications, sedations, lab work, and equipment exceeded over $150,000 (From September through December).

I was told today that my child is my responsibility and NOT the states. I've been told today that I should have been prepared both emotionally and financially to handle the possibility of having a child with special needs.

How? I went to every single OBGYN appt, and everything was "normal". I had every test I could imagine that wouldn't harm the baby or me and all the results came out fine. Even his kidneys (which this is still hilarious to me) were within normal range!

Really? You're going to make me feel like a bad parent, because I had no idea that I had an 11;22 balanced translocation in my human genome and therefore produced an offspring that would never be able to fend for himself in this inhumane world?

So then every person should have at least 1.2 million dollars in their bank account to pay out of pocket for the possibility of having a child with special needs. Because that's how much it costs, out of pocket, with no insurance. I am immensely positive that I have some ES Moms that can top that!

My child has every right to have the same care that your child does. Yes, my child has to see a specialist for any possible little thing, but wouldn't yours if your child fell out of a tree and broke his arm, or God forbid, his neck? Wouldn't you want to make sure that your child has the BEST possible care that you could provide for him?

How would you feel if the care you can provide for your child was completely up to the insurance company? What if the insurance company said, "Oh well, I know that this (insert whatever medical thing here) can save your child's life, but we can't pay for that and you can't afford it out of pocket so you might as well say goodbye now."

Think about it, FEEL it, and TELL ME how that would make YOU feel.

I truly believe that this world is not ready for handicapped issues, people, or anything relating to the word handicapped, and I was proven right today. Those that are so completely insensitive and naive to think that the cost of having a child with special needs vs. the cost of having a "normal developing" child are equal, seriously needs to read a mother frikkin book, because they are completely ignorant.

I am not asking my child to be treated any differently than any other, but if my child needs to be seen by a certain Dr. there should be NO REASON, whether financial or not, that my child is unable to be seen.

Yes, my son has been turned away from other practices because "they don't take my insurance." Or they don't "take THAT form of Medicaid", and I am still LIVID about it, can't you tell? (But at least my hubby tore them a new one before we walked out of the office) I was naive enough to think that just because I had work insurance and I was paying $200 a paycheck for it that my son would be covered %100. It doesn’t. Not when you have a child with Special Needs. It doesn’t matter what insurance you have or what condition your child has. It's not right for the insurance companies to jack up the price of services (Lab work 7k? WTF!) nor is it fair to them to have to pay hundreds of thousands of dollars in malpractice insurance, but it's done anyway. So I'm sorry if you think that I am an unfit parent because I can't afford a 40k heart catheterization, but at least I'm doing something about it, all you're doing is judging.

Yes, I am the parent that will probably pitch a fit if someone is blocking the handicapped sidewalk ramp, because the other person who has NO IDEA what I'm going through is being an inconsiderate SOB and my son’s special chair weighs a ton.

Yes, I am the parent that will DEMAND to be seen at a Dr's office from here on out because now I know that it is my son's GOD GIVEN RIGHT to be seen, and it is well within his rights as a US citizen to have the state pay for that super-special-one-of-a-kind Dr. because the US has decided that raising the cost of a simple blood test will help our economy (How, I have no friggin idea, I’m not an Ecom major - just a really angry Mom). It is not my son's fault that he was born this way, and it is not my fault as a tax payer that I need to pay millions of dollars in medical bills because as some people put it "I should have known better than to not be prepared for the cost of a child with special needs." I pay my Taxes. I Pay Medicaid Taxes. My son should have the right to receive Medicaid Benefits.

Screw you and your perceptions. My Son is my gift from the universe, and as that gift it is my obligation to take care of him, by whatever means possible even if that means getting government granted need based aid.

*bows*

and off my soapbox I go... I feel better...