Wednesday, May 4, 2016
Thankfully, the agency Noah works with was very understanding and assigned someone to Noah in the interim just to get the new AAC device evaluation completed. Noah of course fell ill during this time, and we had to reschedule twice to my dismay after waiting all those months. Noah wasn't his best as he was just starting to recover from being sick the previous week, and the evaluator was so kind to come back again this week to give Noah the best chance at success so we really could decide what device we should approach Medicaid with funding with. Noah has a Tobii eye gaze device right now, and for the most part I do really like the device. However, it's huge and there is no way that we can mount it to Noah's power wheelchair - he can't see anything past it when he drives, and it also blocks his view from seeing anything if we were to mount it to a manual wheelchair that he has. Our only option was to pursue a smaller device. Noah also needs something he has access to all day long - right now because his current Tobii device is so big he can only use it at the kitchen table on a stand - maybe one or twice if we're lucky daily. Which isn't enough time to get him to expand on sentence building from one word choices. He needs something he sees and works with frequently.
We trialed three devices, the Accent, the WinSlate and the smaller Tobii. Noah did not do well on the Accent, it did not calibrate to his eyes well and he didn't find the same success he did with the WinSlate and Tobii. There are pros and cons to both devices. Obviously Noah has the Tobii now and I'm familiar to a degree with it. It does have good calibration for his eyes and is windows based. The WinSlate is lightweight compared to the Tobii. The smaller Tobii weights about 8 pounds, the Winslate weighs 3 pounds. A significant difference. Both are about IPad size, so Noah could see to drive and navigate his power wheelchair and also see around it in a manual wheelchair. The WinSlate comes with a talker lanyard, so Noah can hang a small voice box around his neck so when he talks it would sound like it was coming directly from him and not directly from a computer. Both tracked Noah's eyes well. I really liked the graphics on the WinSlate. They are crisp and clear as if you were watching a 3D Disney video on television. The WinSlate seemed user friendly and easy to navigate, I hear that it also has excellent customer service, where Tobii customer service in the USA has been declining rapidly. I do have access however to the Tobii creators in the UK, and have clung to them as my source for help all these years. The WinSlate ironically offered Noah an easier time of getting to the right hand corner of the screen, something that has been his weakness - an area where he much doesn't look at often and was wiling to do on the WinSlate. Over all I'd say the WinSlate and smaller Tobii were almost a close tie. We ultimately gave Noah the choice of what he wanted. We asked him to pick and he picked the WinSlate multiple times. The speech evaluator also held out his wrists giving two options for Noah to pick and he'd pick the Winslate doing that too visually.
It was quite funny as Luke witnessed Noah being given choices by visually picking a closed fist, so he walked over to Noah with two closed fists and told him one was Arby's and one was Chick-Fil-A and to pick which one he wanted for lunch! Clever little Luke - using his brother to get take out for lunch. Noah picked Arby's. Surprisingly too because he adores Chick-Fil-A. But it was quite obvious that Noah and Luke have found yet another way of communicating. Choice by fists. Luke is now doing that to get Noah to pick videos and toys. And I'm just letting them do their thing because they are indeed communicating rather well together using the fist method at the moment. And Noah has been getting much stronger daily since his illness. His spastic athetoid movements have even returned. And I never thought I'd say how awesome it is to see athetoid movements in Noah! But, I'm so glad to see him returning to the child I've always known him to be after being so sick.
The catch to all this is Medicaid only allows a new speech device every 5 years. Noah has had his almost 3 years. However, Medicaid does make provisions on a case by case basis depending on need. And this is a need - he can't see around such a big device and it's a safety risk certainly with his power wheelchair. It would be the equivalent of putting up a sunshade in the windshield of a car and saying good luck go drive the car now when you can't see around it. I don't know that I really feel confident about what Medicaid will do. Honestly, I'm feeling really crappy at the moment about Noah's Medicaid benefits and CES waiver benefits. Three weeks ago the Director from the State Department of Health Care, Policy and Financing personally called me shortly after our story made front page news to inform me that I should be expecting a letter with "mixed news." News from the grapevine is that it's a three page letter, yet no one is sharing or disclosing the nature of the letter to me. Supposedly, I was to expect this letter in the mail Monday or yesterday, and I'm still waiting... I was also told the same thing three weeks ago. I anticipate it's filled with news that will trigger an anger response from me - I hope I'm wrong. God how I hope I'm wrong. But the way everyone is behaving it's like I'm waiting for a doomsday letter.
So what could the letter contain? Anyone's best guess. I'm sure it will address outstanding requests for Noah. There is a flooring modification that has been pending since the beginning of the year with Noah's Waiver. Our home is primarily carpet which strands Noah. He can't propel any of his equipment on it, and when Noah does have an accident on the carpet whether that be when he's sick, or well and we need to spot treat the carpet, he can't lay on it for twenty-four hours minimum because wet carpet can put him at risk for contracting Kawasaki disease. His waiver denied it the very day I was giving Fox news an interview after they were contacted for comment, but then changed their mind within 1/2 hour and approved it pending clarification of the request. Yet, it still had to be sent to the State for their final seal of approval. While Noah's home has decent square footage, his waiver only permits for certain sections of the house to be revised. Meaning we can't change the flooring in every room of the house - we have to ask for the spaces Noah uses most. And this isn't something where the state gives you really nice hardwood floors. We are asking for cheap basic tile. I think sometimes public perception is that families like ours get really nice benefits or things for our children, when in actuality we are just after functional. The state uses the word luxury rather loosely and even happens to think that porcelain tile over ceramic tile is a luxury even though the cost comparison is equal. They will nit pick a request to death and make you jump through a thousand hoops, and then you sit and wait for usually a big giant no for all that they required of you. I really hope this letter contains an approval for the flooring. Noah really needs this for some personal freedom safety and health concerns in his home.
The letter may or may not also address the pending fight over adaptive clothing, will those two things take up three pages? I don't know. I guess they could. I'm not sure what to expect from this letter. But I know that things are still getting denied - Noah needed a part for his wheelchair that was only $104 and that was denied. So what will the state do with a request for a new communication device that probably retails somewhere between $16,000-$18,000 depending also on accessories and software? I don't know. I don't know what they'll do. I suppose I'm preparing myself for the perpetual fight - because I always feel like they are backing me in a corner when it comes to helping Noah. Maybe the letter will address SSA Section 6505, which I still think the State is misinterpreting to block equipment that isn't manufactured in the USA from being purchased, it will be something that I'm pursuing in an appeal before an Administrative Law Judge in a few weeks, and something that I'm working discussing with vendors who are now being blocked from allowing their products to be funded and purchased.
I'd like to believe the State wants to build a bridge to work with families and not torch and bomb the bridge continuously. Part of me wants to be optimistic - but part of me being realistic with the probability of this letter being any type of good news. I am quite used to bad news bombs dropping on me frequently. There is no one at the State that I feel has made genuine efforts to build trust with me. It's hard for me not to perceive them as the enemy, because it always feels like I have to wage war and fight them over Noah's benefits. And I'm certainly not alone in my feelings. Lots of families feel the same way. Some are very open about it, some a bit quieter but nonetheless share the same intensity of feelings. I hope I'm pleasantly surprised. I'd love nothing more than to blog about some superior news. Truly I would. I'd love to say guess what everyone the State is making efforts to redeem themselves. Only time shall tell.
The things that Noah needs are of course mounting by the day. I'm not sure what to do, I'm exhausted from trying to hunt foundations;
Noah needs a New Tomato Floor Sitter (he's outgrown his size 2) that is around $1,000
A Flexi 3 IPad case to mount to his wheelchair as an activity retailing for around $120
I have to pay for his wheelchair piece that was denied $104
Noah didn't win a bike after his third year entered into the Great Bike Giveaway Contest - that's about $7,500 (good luck I know right!) This child will never ride a bike at that price.
A sleep pod which will cost about $1,800 including shipping
We have to pursue another travel car seat for Noah - the purchase price on that is about $4,000
Noah needs a new molded wheelchair seat for his power wheelchair - he's need it for a long time now, but his DME had told us to hold off because all of them are currently being denied by Medicaid
I need a 8 inch threshold ramp to get Noah out into his own backyard - that will vary anywhere from $400-$600 depending on style
He needs a new swing set he outgrew his that will be a few thousand for a folding swing frame, plus accessories
He needs a power wheelchair canopy to keep him out of the sun
The list is endless - I could keep going but it's so discouraging for me.
I of course see things other children are getting and benefiting from, wishing that Noah was afforded the same opportunities, yet knowing very well if I put in an identical request, the same rules don't apply for Noah and he'd be denied. Which of course is hard, I certainly am celebrating other children and families getting what they need and what their children need, but at the same time of course saddened that it doesn't work that way for Noah.
So everyone pick a fist, the first fist says good news is coming... the second fist says bad news is coming...
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Posted by Noah's Miracle at 12:36 PM