Author's Note: This post has been brewing in my Drafts folder for some time. I wrote this post and engaged in this debate the day before I learned Maggie had passed away and - therefore - it remained buried in the depths of the blog.
This occurred on a birth board for women sharing the same due date that I had with Maggie. Medicaid came up frequently since there is a specific Medicaid program for pregnant women and newborn infants. The mothers who were on Medicaid - in my opinion doing a noble thing insuring the good health of their future children - were vilified. Even though Brian or I have never been on Medicaid (Jack's waiver is just for him), I felt the need to listen and interject, as Medicaid recipients in general were being attacked and I am the mother of one such recipient.
However, now seems an appropriate time to resurrect it from blogger limbo. You see, Jack lost his feeding therapy - for several months, at least - because Medicaid would not approve it. They kept giving bogus answers as to why - answers that were simply incorrect - like that we had not documented a "change in condition" (he'll always be autistic!) to the fact that we had no evidence of "medical necessity" (the War and Peace-sized novel of documentation showing choking and feeding issues paired with prescriptions from doctors and multiple letters of medical necessity obviously was not enough).
But ultimately, what does it come down to? Where do these bull**** - because there's no better word for it - answers come from?
MONEY.
Or, rather, a lack thereof. I live in a state where people think so poorly of Medicaid that our own governor declined to take additional funding from the federal government (part of the ObamaCare package) if he would only expand the program. It is this public distain for Medicaid and the people who are on it, plus these non-sensical stereotypes about Medicaid recipients that are passed through popular media and cable news as "truth", that creates these crises.
After all, our elected officials follow the will of the people. They will fight a program of which supporting will cost them votes.
So, this is not meant to be a political debate. It might surprise you to know that - historically - I have tended to vote pretty conservatively, straying more towards the independent side when it comes to certain issues. This is simply one mother's plea for understanding for recipients of a program without which my son would not have the therapy that he does have, even though that therapy has been cut back.
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"You should be able to provide for your children and if you rely on assistance (the debate being about Medicaid) to do so, then you aren't doing that."
When I informed the poster about my family's situation, it was written off. I was told that my situation - staying home, being unable to work because I care for a disabled child, and needing a Medicaid waiver to cover medical and therapy expenses larger than the salaries of most people - was "extremely rare". I was also told that my situation was "extremely rare" because Jack doesn't qualify for Medicaid based on income (we would never in a million years qualify based on income); he qualifies based on the severity of his disability. Somehow, that both separates us from the debate and - in a backwards way - makes us unable to comment or engage in the fray because we are outside of the mainstream.
So often, the situation of the disabled is written off as "extremely rare", because it doesn't paint the negative image on Medicaid that the naysayers desire. Our kids aren't convenient for that debate. Here is what I would say to those naysayers...
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Hi! Let me introduce myself. I'm the mother of a 4-year old little boy who doesn't fall into that convenient box of what a Medicaid recipient is - at least to the person trying to convince everyone that Medicaid is a flawed and wasteful system. You see, I know that the person you are thinking of is a single mother of multiple children who you are convinced is cranking these children out in order to increase her monthly government payout. You see her as someone who doesn't work because she doesn't have to work and who just sits back and collects her share of your hard-earned money. You blame her - your "ideal" Medicaid recipient - for the reason why your healthcare costs so much, why you wait so long at the ER, why your premiums go up, and why you pay so much in taxes. You try to convince everyone who will listen that you pay for your family, you take care of your kids, and you should not have to pay for people who don't contribute. All of those people on Medicaid should have to work just as hard as you do to pay for medical expenses.
Here's where your argument gets shady - when I mention my kid. My kid has autism and an ever-growing list of special needs, so he gets Medicaid through a special waiver. What you pay in medical expenses is a drop in the hat compared to what my kid needs each month, which includes 5 therapy sessions weekly at a full-sticker price of around $200/hour, plus a special instructor that costs $70/hour, plus almost bi-weekly doctor's visits at the cost of a co-pay plus whatever else insurance doesn't cover. Oh yeah, plus there's the 25+ hours of ABA that my son should get per week that my insurance won't cover because it's considered "experimental". Not to mention that my state doesn't require insurers to cover treatment for autism and my insurance is therefore allowed to only cover a fifth of my son's care under the premise that they only cover "short-term rehabilitation". Add in there a smattering of tests, medications, and hospitalizations, and you get the idea. It's a lot of money, my friend.
Would it surprise you to know that I can't work due to my son's needs? Probably not, but what might surprise you is to know that my family makes a very decent living. If we were to pay out-of-pocket for my son's care, it would eat about 2/3 of our annual gross (not take-home) income.
Yeah, that sounds like a lot, huh? Most people can't really plan for that, right?
So, you try to dismiss me away. You claim that my son is the "extremely rare" exception to your "ideal" Medicaid recipient. In other words, my son doesn't fit into your mold that describes the inequities of the system on the average taxpayer. You dismiss him away, saying you don't mean him, and move forward with your original argument.
I'd like to introduce you to some other friends of mine. You see all of these mamas with their arms folded giving you an "eat poo" look? You see, I roll with these ladies. We all represent an "extremely rare" case that doesn't fit with your Medicaid recipient that you long to demonize. Here's the other thing - we're not that extremely rare. 1 in 88 children is born with autism these days. That's a lot of us, and that's just autism. That doesn't count the thousands upon thousands of moms with kids with other special needs, like Down Syndrome, genetic conditions, traumatic brain injuries, cerebral palsy, epilepsy, etc. Yeah, I roll with those ladies, too. I've got their backs and they have mine.
Holy crap...suddenly there are a lot of us! That "extremely rare" contingent seems to be in good company!
Yet, with all of us here, you pick the extremely rare case of the person who abuses the system? You don't discuss the person who got laid off and - due to being too educated - can't get another job. You don't talk about the pregnant mom whose husband left her and took their family's income, forcing her to go on Pregnancy Medicaid because no one will hire an expecting mother. You don't talk about the person with disabilities. You don't talk about the child with medical needs so great that he or she would live in the hospital without Medicaid-provided access to in-home care.
You don't talk about the autistic child who relies on Medicaid to learn to eat, walk, talk or communicate.
You don't talk about them because suddenly our kids make Medicaid seem like a program that has its uses. You don't mention my son because he makes you look like an asshole for mentioning that it's "unfair" that you have to pay for Medicaid.
You know what's "unfair"? It's unfair that my son struggles to do things that you do so easily. It's unfair that he must be lumped into some blanket debate about the evils of Medicaid, only to be dismissed when he's mentioned because his case is "extremely rare".
See these mamas behind me? We're not so "extremely rare". I'd argue that we outnumber your convenient Medicaid pariah significantly.
Before you demonize the system that has allowed my son the access to the care he needs to simply learn and grow, consider this - if the tables were turned and you were in my shoes, would you like for Medicaid to be available to help your child when there was no possibility of ever affording the huge price tag? You would? Well, then consider your words carefully, because you could be in my shoes.
You see, we're not all that rare. You could be one of us next time. Think about that before you rant.
As for these ladies, they've got my back and I've got theirs, so watch what you say. No one can go all "Mama Bear" quite like an autism mama.
Sincerely,
RM