Right now, I am at my limit with Republican efforts to repeal the ACA. Frankly, if you have no health complications and your children also have no health complications, that’s not an accomplishment. That is luck. And that luck can change in an instant, and then perhaps you can understand how hateful this feels, how this feel like a constant attack from the government on my family’s ability to provide for our children and our children’s ability to live.
It feels like people think we ought to be punished for having a pre-existing condition. It feels like people think we ought to be punished for noticing that my son was not developing in a typical fashion and catching his autism early. It feels like people think we should face bankruptcy for our bad luck.
We have insurance coverage through my husband’s work. This means he is working to provide insurance. We pay hundreds in premiums a month. We pay thousands in deductibles a year. Already it feels as though we have to work twice as hard to be financially solvent than people who do not have a child with a medical condition. And the stress of whether or not we are going to have to stretch our dollars further is aggravating.
Meanwhile, the CEO of the company we have insurance through raked in 17.8 million dollars in 2016. Considering that we still pay about $50,000 a year for my son’s therapy on top of $400 dollars of premiums a month, it feels immoral to me. I feel more like we’re breaking our backs to support a millionaires lifestyle who is doing everything he can to avoid paying for the services that insurance is supposed to cover. Still, paying $50,000 a year is better than paying $100,000 or more, which is what it would have been before the ACA kicked in.
And ironically, considering how Republicans like to scream about entitlement programs and cutting taxes, because schools are not adequately funded, we had to take Brent out of the tax payer funded system to put him in a program that would treat him like a remarkable little human whose needs are different, rather than treating him like an inconvenience. In other words, we are breaking our backs to pay for this out of our pockets and not using tax payer dollars to provide for him.
Here’s the thing. I have worked with families who are less fortunate. I have worked with parents of autistic children who have to rely on the schools even though they know their children are getting the short end of the stick. I’ve worked with parents who are dealing with schools framing their autistic children’s behavior in criminal terms rather than seeing their behavior through the lens of what is normal for an autistic person and planting them firmly on that school to prison pipeline. I have watched as parents agonize over seeing their children treated as criminals for having a documented disability, and to not be able to do anything about it because they don’t have the money.
In many respects, I am lucky to have the problems that I do. However, because I am not a selfish person, I want EVERYONE to enjoy the benefits that my son has. The quality of care my son gets at Easter Seals and the acceptance shown to him is what every autistic child should have.
I am simply shaking my head wondering what the hell it is people want. Investing in early childhood programs saves money long term by keeping children out of prison. Investing in early childhood programs and creating a place in the workforce for autistic adults (like Microsoft does), means children with disabilities being able to grow up and find gainful employment rather than living on SSI.
But then I remember. The prison industrial complex is for profit now. Think about it.