Noah's Miracle : The Big Bad Brick Wall

Everyday I wake up feeling like I'm doing nothing but banging my head against a giant big bad brick wall in hopes of helping my child. That can't feel good you say? It doesn't. It hurts like bloody mad hell. But my alternative is what? Now there are people out there that think Noah doesn't need anything. Nope doesn't need a bathroom, nope doesn't need a crawler that's a luxury item, nor does he any other piece of adaptive equipment, much less a chance to participate in the world (thank you dear Internet Trolls for your comments on that).... but it's so easy to think that when this isn't your child or your struggle. I have no doubt you'd think differently if you were in my shoes. You'd be doing the same thing I am banging your head against these big bad brick walls. And chasing down every potential opportunity. Guaranteed.

I take solace in knowing I'm not the only one this is happening to. But the point is it shouldn't be happening to any of us. Which is a large reason that I write about what is happening so other families don't feel so isolated and alone when we're all facing the same fight and outcomes.

We started the process of seeking a modified bathroom with Noah's waiver funding April 16, 2014. It took until July 31, 2014 (maybe August 4, 2014 considering that Noah's caseworker then asked for proof of home ownership) to submit the request to Medicaid. We were told that due to the projected estimates for this bathroom modification that we would likely need to cut other benefits from Noah's waiver. Things like therapy coverage and respite care had to be eliminated from his plan in the hopes to receive funding. So we continued to do without help with the belief that Noah's bathroom modification would be funded.

From the beginning of April until the end of July I spent countless hours coordinating appointments with state-approved contractors, a state-approved occupational therapist who specialized in home-modification requests, obtaining letters from all of Noah's therapists and primary care doctor to support the need for a modified bathroom request per the advice of Noah's county caseworker, then I spent time waiting on his caseworker to write it up and submit it.

We waited from the end of July early August for a decision from Medicaid. Even after my diligent, polite checks to Noah's caseworker only to be told no news yet.

This comes as no surprise if you are a follower of Noah's blog that today (October 7, 2014) we got our denial. Yes, that's the theme for Noah - denials. While I'm not entirely surprised about a denial in general, I was surprised at the reason for the denial. Especially because a large portion of the denial was based on what I was told to do by Noah's caseworker. Either the person who is supposed to be your advocate actually sets you up for failure or a Medicaid worker purposefully misread the submitted information to grab at straws to deny it. Maybe it's a little of both, I'll never know.

The home modification: I (state) reviewed the bathroom modification and it was denied because of the luxury items. The bid contained luxury items including: two roll up sinks and contained items that are available under state plan such as grab bars. Also we don't approve "walk in therapy tubs". This request is not the most cost effective.

The state also include: Also, the "assessment" letter is from a person who is a "Feldenkrais Practitioner"; I'm not sure what a FP really is, but the assessment needs to be from a qualified provider; meaning PT or OT. I'm pretty sure we don't have a Feldenkrais provider category. Also, there is a letter from his doctor who states Noah needs a modified bathroom. The doctor is not a valid referral for a home modification, and will not be relied upon for professional endorsement.

The kicker is sure, we can resubmit it. But that will take some time. Contractors will need to re-do their bid to eliminate a sink that Noah could wheel his wheelchair under (even though we didn't ask for two roll under sinks), and re-iterate to the state that we were not asking for a walk-in tub. And I'm not sure how they'll deal with the fact of convincing the state that yes we did submit a qualified OT evaluation and report from a state-approved agency, in addition to simply submitting supporting documentation from Noah's team of therapists and doctor to simply further support his need. This could take a minimum of a week - likely two because I know how slow this goes.   We'll resubmit it, but the likelihood that Noah gets a response, much less approval on a revised request by December 31st - is likely slim to none.

What does that mean? That means that I just very well flushed nearly 36K of Noah's waiver money down the drain if it isn't used by the end of the year. Purposefully modifying his care plan knowing we'd need extra pennies for this bathroom modification.   Funds that won't ever benefit Noah. The state gets to keep it at the end of the year - whatever funds weren't used.   Feels enormously unfair. A system designed for failure. Do everything you can to keep from helping children like Noah. It feels like a you are constantly living by a lie. Here's all the help - but we'll make sure we find ways to never give it to you.

Excuses like the "state and the county are under stress to conserve funds," explained by his county caseworker. Funding that is supposed to be allotted for your child.   Yet not a single person on this earth gives any consideration to the stress that comes along with special needs parenting. No one loses sleep like I do, no one wonders how I'm going to find help like I do, no one cries endless tears like I do.   Noah means nothing to anyone but us.   No one says wow I just road blocked a sweet deserving child from help. It doesn't lay heavy on anyone's heart.

I used to say I wouldn't wish special needs parenting on anyone, but I think I actually would. I'd wish it on everyone that hasn't gotten a clue what this is all about. That's the only way they'd feel it and understand it - to feel the hurt from hitting this constant big bad brick wall themselves.

Love,