Warning – I’m writing angry and off the cuff which probably breaks a lot of rules and is not very wise.
A few weeks ago my sister sent me this Tampa Bay Times article about warehousing children with disabilities, or cutting support so drastically that medically complex kids end up living with the elderly in nursing homes. It’s an absolutely terrifying article and made me more than a little nauseous and I really encourage you to read it.
I get it; my kid is expensive. I’m certainly benefitting from your hard earned tax payer dollars much more than you are from mine. Oh wait, I hardly pay taxes because I only earn a tiny bit of money because I only work very part time. Why? Because the flexibility that is required of me in order to raise Aidan is not particularly conducive to regular employment (ok, and because I love teaching piano). Other Medical Moms have become solopreneurs as a solution to this same issue.
I’m well aware that I have received a great deal more support from my community than many families that are affected by disability. I’m humbled and grateful. Those are real people intervening in my life in a powerful and personal way. However, the use of the phrase Community Support or Community Programs in the Tampa Bay article, and in Disability World in general, is a pretty way of saying stuff your taxes pay for.
Your taxes pay for Aidan’s nurses/home health aides. We’ve always had amazing people working with Aidan. It’s weird having people in your home seeing all of your quirks, but we’ve been fortunate yet again. That being said, the questionnaires we sit through on a regular basis to make sure Aidan is still disabled are, well, exhausting. They’re necessary; I get it; I’m all for accountability. They’re just draining. I have a standing invitation to any State workers who write these questionnaires to come meet Aidan and sit through this hair pulling process with me. Here’s the other thing about this wonderful nursing care you’re paying for – it’s incredibly difficult to change agencies and they’re not always appropriately staffed. Just really. I can see all of you other Medical Moms nodding heartily in agreement. Again, I am just a little bit self employed so this isn’t as crucial to me as it is to many others who lose their jobs as a result of inconsistent or unreliable services.
You know what is crucial… Aidan sleeping safely at night. So here’s what I really wanted to say: I sent in a super huge packet of information, including a handsome picture of Aidan, a letter from me that included words like reprehensible, unconscionable, and disingenuous, tons of doctors notes, a copy of the ED notes and bill from Aidan falling out of his ridiculously unsafe bed, and our insurance’s very own handbook which states on page 41 that it specifically covers specialized hospital beds as durable medical equipment (strangely enough on pg 42 it specifically says that it doesn’t cover sports bras so save your angry letters) to an external third party review agency.
Today I got a phone call saying that Aidan’s bed has been denied for the final time. De-freekin-nied. They are sending a letter with more comprehensive information. I’m guessing, who wants to put money on this, that they’ll say they are happy to require insurance to cover XYZ bed which will be gobs less expensive but also won’t have solid rails, thus leaving Aidan at risk YET AGAIN for entrapment and falling out. There are so many angry frustrated un-churchy words running through my head right now.
It kind of feels less like community support or providing a service and more like keeping even the squeeky wheels silent. We shouldn’t have to be squeeky wheels. In fact, the care that I provide for Aidan (which I see as my responsibility as his mother and my joy because he’s so precious to me) saves the State more money than putting him in an institution. (That’s a bold faced claim that is totally unsubstantiated and coming mostly from the gut so I’m not even sure if it’s statistically true but I’m tired enough to say it.)
So how about we keep the Mamas happy and support families? Cause this fighting the man thing is exhausting and so is raising Aidan. But he’s cuter and arguably smarter too.
Let’s go back to the beginning. First, in no way am I saying that Aidan is at risk for being institutionalized. Second, the bed was denied by our private insurance, not our State insurance. That’s another sad, pathetic, long story that ends with no.
What I am saying is this; it’s moments like these when the truth about our need for community support/stuff your taxes pays for becomes very real. Kids with disabilities belong with their families, in their schools, in their community and often that gets expensive.
I tend to believe it’s a good way to spend my dough.