Ok. So I am going to try not to be too political here just because this blog is mostly intended to be about my daughter and her life with Autism and Agenesis of the Corpus Callosum. But sometimes with Special Needs, you have to be political.
You have to be your child’s biggest advocate. When you hear on the news and through word of mouth that certain things like Medicaid may be taken away, you have no choice but to scream at the top of your lungs and ask why?
So let me back up. I never thought that we would need Medicaid. My husband and I are both educated and both had great jobs before our daughter (my husband still has a great job, I am a stay at home mom now.) I always had private insurance and up until I was pregnant, I always thought private insurance was great. Then comes the pregnancy.
While it wasn’t considered high risk or complicated, I began to realize just how shitty my personal insurance was. I was paying almost half of the cost for each well being appointment. I was paying almost half for an ultrasound. The high risk ultrasound when they thought they found calcium on her heart (could indicate DS) was covered even less. I finally had to use my husband’s insurance as secondary because everything started adding up and fast.
So let’s skip to when my daughter was about a year. At that point she was in early intervention and no one knew what was going on with her. She wasn’t reaching her milestones. She was choking and projectile vomiting every time she ate something with texture.
At this point my pediatrician has recommended going on MA Health. How could we? We supposedly made too much money to qualify. However, they do take into consideration families with children with special needs. We were warned though that we would get denied then have to pretty much jump through a ring of fire after the denial but they should cover us eventually. We were moving out of State and we decided that it would just be too much of a hassle because we probably wouldn’t see it prior to us moving.
When we moved up to VT we were told about Katie Beckett. Basically, it is Medicaid that doesn’t look at your finances. It looks at the needs of your child or whoever you are applying for. We applied and let me tell you, I was up to my eyeballs in paperwork. Telling the same story over and over again. But when we were approved, what a difference it made. Whatever our private insurance didn’t cover, Medicaid did. If we didn’t have Medicaid, we probably would have been homeless.
An example of this is genetic testing. When we lived in MA, we got denied four times even though four different specialists said it was imperative to get genetic testing done. They wrote letters and appealed the decision, only to get denied over and over again. This was Boston Children’s that was requesting it. Finally, we were so defeated we asked if we could just pay out of pocket.
Wait for it…. $16,000 for just one test. One test. Turns out A needed 4 tests.
Excuse me. But what person can afford that? I know we couldn’t. We waited over a year to get tested. Wtf? Seriously? If anything had come back not normal, we could have started therapies. We could have treated her. We could have found out what was wrong. But no.
Insurance doesn’t think this way. There is no human side to insurance. They don’t know my child, they don’t know the people that they deny time and time again. They don’t get how it will impact a family, a person. For the most part, I don’t think they care. And who can blame them?
I worked in auto insurance for 7 years. Probably the most miserable 7 years of my life. When I went home, there wasn’t many times that I stayed up at night thinking about all the people I potentially screwed over. It was a job. My day ended at 5. I got paid and pretty well compared to most of my friends. Look, no one says they want to get in insurance when they are adults. When I graduated college, I thought I’d be editing Documentaries and film in California. How naive.
So getting back to Medicaid.
It worries me. My daughter at this time can’t communicate. She has no words. She has vision and sensory issues. She has autism. She has Agenesis of the Corpus Callosum. She has Global Developmental Delays. At 2 and a half years old, she just found out how to stack blocks and put rings on her ring stacking toy. She has balance issues. She can eat with her hands but not utensils. She cannot change herself into clothes or get unchanged. She is nowhere knowing what potty training even means. She is on 2 Pediasure per day. (Which by the way at Walmart is $11.99/six pack… CVS in a pinch is $14.99/six pack.) In just 5 months, she has wracked up a bill of almost $14,000 and that is not including her eye surgery. So is Medicaid a necessity? Yes… Yes, it is.
I am so tired of seeing Memes on Facebook saying that people don’t want to “pay” for other people. I get it. You see the homeless guy at the corner of the street who you assume is just a junkie. You see people abusing the system. I get it.
But for people like my daughter, Medicaid is a necessity. And she (knock on wood) doesn’t have it as bad as other people in similar situations if not worse situations.
So why this blog? Well, last Thursday we got the Medicaid renewal form. That day I sent it back out. Today we found out we got approved another year. I am now doing my happy dance.
And would you look at that? I didn’t get too political 😉