Tuesday, March 22, 2016

As Good As It Gets

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I think I've been in a doldrum lately.  As likely evidenced by my lack of motivation to blog or talk about anything.  I know there are several contributing factors to this.  And it seems like I can't shake this feeling of having an unbalance of more problems than to the solutions and options.  There are days I wake up and don't even know where to start.  
So, City Council had their study session on the cell tower that is about to be built in less than 500 feet from our home.  It's predictability and tone was anticipated months ago.  Although the public cannot make comments at these study sessions, they hired an independent expert, and had speakers from Verizon give presentations. When I read their hired experts CV, I knew immediately that he wasn't a neutral party.  Having had a background working for a cell carrier and antenna engineer I knew what he was going to say before I even went.  My legal experience has served me well and I can easily sniff out which side someone is on.  He was simply hired because they wanted do find someone who would support their decision to build this tower.   He got up there and made these analogies comparing broad band widths to dogs that stay in fenced yards, and rarely if ever... do these dogs bark and cause problems.  Essentially he was intending to say that EMI (Electromagnetic Interference) doesn't exist, because broad bands don't interfere with each other.  

Verizon's testimony even more disturbing as they explain to City Council their desires are to have cell towers and antenna as close as every 1/4 mile.  That's crazy.  And that is just one cell phone carrier's goals.  They hone in on projecting the technology for the future... such as smart cars and headgear video games citing their need to act now for something that hasn't even happened yet.  I observed body language of others, the rolling of eyes, their posture, their crossed arms, shaking of their heads at any suggestion that they should think twice about denying any application related to cell towers for any reason.  It was a room divided but the majority is ruling these decisions.  There was even suggestions that the height minimum be raised.  So instead of a 50 feet tower maximum (even though a variance was given to the tower I'm going to receive which will be taller than 50 feet), they want to make the limits higher.   (Higher the tower, higher the intensity and impact to neighboring residents.) Really the goal of this study session in essence felt like how can we make it as easy as possible to overpopulate residential areas with cell towers with complete disregard for the human safety and well being of others or even allow have homeowner objections to the loss of property values and aesthetics. The County Attorney made a suggestion that since there was a health issue or concern (which was Noah) that they couldn't take into consideration all my other neighbors who were upset about the decline in property values as a result of a tower and aesthetics.   And then I was reading Noah's instruction manual on his power wheelchair that warns against the effects of EMI...

"The interference (from radio wave sources) can cause the powered wheelchair to release its parking brakes, move by iteself, or move unintended directions.  It can also permanently damage the powered wheelchair's control system."  This is such an extensive warning they actually dedicate two full pages in full detail of EMI warnings.

Yet, City Council remains in denial.  Short of the tower being built and me saying told you so... and/or pursing legal action against everyone... I'm not sure how to get them to admit they have a significant problem with a medically fragile child in the neighborhood in which they want to build cell tower.  They don't have a fenced in dog... they have a dog that is about to maul the neighborhood and specifically my little Noah.  But they care not one bit.

And now we transition into other problems on my horizon:  I submitted my 3rd revised request for a flooring modification for Noah after it went from a "firm denial", to a "soft approval" pending State's final review.   I'm obviously frustrated about it, and I know in many ways what I'm experiencing is purposeful in nature.  I also filed two more appeals because I feel like procedures are being violated that are resulting in denials for items Noah didn't even have a chance to formally ask for, unique in that even a Judge can't adequately reverse a denial or make a determination if the denial was appropriate in any fashion because there is no supporting documentation for review.  I still think Section (6505) of the Social Security Act's intentions was designed to prohibit prescriptions or medical treatment outside of the US and described therein as (benefits).  I do not think that rule's intentions were to bar adaptive equipment purchases outside of the USA.  But I don't much get the feeling that the State really wants to dig into that matter, especially because if they use it as they are - it prevents hundreds of families from accessing things they need and thereby saving the State thousands of dollars they don't have to pay out to assist those in the special needs community.

There are miscellaneous things too that I need to deal with.  I given most of Noah's equipment away, which leave him with nothing to replace it, as many were out of pocket purchases and he has outgrown everything - not skill wise, but size wise.  He needs it all replaced which is an impossibility financially, but there are lots of things that I need to obtain for Noah and can't financially.  There is no MNRI camp for 8K-9K, no Dolphin Therapy, no ABM Intensives... can't find a way to fund getting to California for two weeks to obtain a service dog.. the list feels endless and if I rattled it all off it would take up three paragraphs just in itself.

I've been asking his speech therapist since September to do an evaluation for a smaller device so we can mount it to Noah's wheelchairs and he'd have access to it more frequently.  And I keep getting excuses, a teaching schedule stands in the way, or Noah has to trial three other devices even though he already knows what model is successful for him... or that they have to find another rep to order it from because they don't like the vendor... (which they can't do).  I'm so tired of excuses.  I don't get to hide behind excuses.  I can't say you know what I don't feel like dealing with 101 problems and issues in my day.  I have to suck it up and get it done because Noah depends on me not to drop the ball.  I don't know how to light people's fires sometimes.  They drag their heals until I feel like I could scream.  We're not talking days or weeks - we're talking now 8 months later...

Noah's DME accidentally broke his Mygo Leckey Chair when we were trying to fit knee guards on it. It was an accident, but that's a minimum of two more weeks we have to wait to have something fixed.  In the meantime he knows it is broken and swing his leg over it, so there isn't much I can do with it, and it's terrible for his hip positioning problems.  Yet, I'm quietly biting the bullet, because his DME has been making a valid and successful attempt at better and prompt customer service for Noah and I happen to really like his new assigned representative and she's giving a 100 percent effort right now.

Noah's entered in a bike contest to win an adaptive bike... for the third year in a row.  Yes I know what you're thinking.  A contest?  I enter lots of them for Noah as that is the only chance he has at many pieces of adaptive equipment.  We know the chances are slim - yet like a moth to a flame we can't help but convince ourselves our children have a chance at being a winner.  And in the back of your mind you always wonder is this as good as it gets?  Am I forever destined to have to think outside of the box to get anything Noah needs?  If you happen to want to swing over and give Noah a vote this is the link to do so. https://www.friendshipcircle.org/bikes/2016/02/noah-w-2/
He's 1 of 600 children entered in the contest.  The hopes were they'd get enough donations to fund all 600 bikes - but my gut instinct thinks that was likely a lofty goal.  I am amazed though at the number of votes Noah has received.  Last year he only scored around a 100... so I'm very appreciative of the support people are giving him. 

Noah's T-Max Shower/Toilet chair that was funded by the county's emergency funds is also being held up by customs.  I'm not surprised, there isn't anything in our lives that actually is easy.   I know they can't hold it up forever as there is a medical provision that they have to allow it through customs because I've gone down this road before with some of Noah's other equipment that has had to be ordered from Canada and the UK.  It's just getting them to realize what it is, and then they will likely assess me a fee an additional customs delivery fee.  But this means I may not see it this week, while I communicate back and forth with them.  I have to essentially convince them not to return it to the UK by the 29th of this month.  One more extra added event in my day. 

And we're going from a great 72 degree day to tomorrow's predicted blizzard snow conditions.  I'd be lying if I said I was looking forward to trying to keep up with shoveling blowing snow all the while checking on my disabled son that has to stay indoors laying on the floor while I shovel... and if you think I have neighbors who will help - think again.   Kindness costs money.  Let's just be real - and how does one budget to hire a snow removal company when the majority of them charge you based on the inches of snowfall they have to remove?  I cannot predict mother nature's furry and she could screw me with one hell of a bill if I gamble on business contracts based on snowfall totals. 

That's it in a nutshell...


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, March 3, 2016

Battle Fields, Blessings & Backaches

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Monday I received an email from Noah's CCB notifying me that Noah now has a new caseworker and that implied that I had a requested caseworker reassignment, with the words "I’m sorry that working with Victoria did not work out for you and Noah."  They would have been better off to say something like they were rotating caseworkers, or just doing a basic reassignment.  To insinuate that there was a problem that I wasn't aware or that I somehow was the reason for the change was a bit unprofessional.  So now Noah has a new caseworker and bless her heart they probably have painted me to be a complete nightmare and she's losing sleep over managing Noah's case.  I have to laugh because I'm not sure really what else to do.  So, Noah has a new caseworker and who knows really why.  He's on his third one now.  And I don't have the over excited warm and fuzzy feelings because it feels like they're are all on the same "deny Noah" team.

Speaking of denials... I guess the State decided they wouldn't stop with the PPod accessories.  I had verbally asked if they'd consider funding a dietitian who would prepare specialized food for Noah. Again, I never had the chance to put in a formal OT request for it or obtain a doctor's letter of medical neessity for it.  And received a denial under 10CCR 2505-10 8.503 That is a really broad 55 page set of published guidelines and rules under the HCBS (CES) Waiver.  Finding what they are referencing will be a needle in a haystack under those guidelines.  And yet again, because I didn't formally request this in writing and they issued a denial I don't have much of a leg to stand on in an appeal and they know it.  But that's fine if they want to change the rules and issue denials without having any written request before them, then I'm no longer going to verbally throw anything out there.   I will make sure my communication is limited and any request will be only in writing I will never verbally ask if something "can" be asked for on Noah's behalf.  As they say there is more than one way to skin a cat and I'm not into playing these kinds of games.  Can you imagine what a big waste of time would be if each caseworker was forced to issue a denial letter each time a parent asked if their child's waiver "might" consider covering an item or service?  Or wait.. perhaps they're doing this to just me?

Family Voices assisted in the coordination of a meeting between us and the Department’s Medicaid Director who oversees the Health Programs Office which administers Medicaid and Child Health Plan Plus (CHP+) health program benefits, delivery systems and provider relations and the Director of the Office of Community Living.  If you are like what does that mean?  It's really the top of the food chain so to speak within the State's Medicaid structure - the Executive Team.  Obviously, I had some reservations because my last meeting with the State resulted in Noah receiving even more denials, and me filing even more appeals.  And you walk into these things knowing that the very real possibility exists that you're either about to shoot your self in the only remaining foot you had left, or you'll be able to effectively demonstrate there is a problem and difficulties that require someone's interests and attention.  And you never really know when you become an advocate for your child or the special needs community how the information will be absorbed and digested and if it will spark anyone to implement change. 

When you take it to this level there is no longer any way to keep your anonymity.   But given that I've been speaking with the press and news reporters, and publicly blog about all our difficulties keeping your name on the down low isn't really realistic.  I am remaining optimistic until I have reason not to be.  I am hopeful that I was able to lay a foundation for wide trail of problems that I hope they didn't find any of this the "norm" for parents who have children under the CES Waiver.  Although some things left me still concerned.  The notation that the appeals process is in some way beneficial or necessary to establish and clarify cloudy rules.  I'd like to believe that the State wouldn't purposely force any family into appeals simply for clarifying their own rules.  And even if that were the case then there would be no need for them to file Exceptions to Initial Decisions to override a Judge's ruling.   And sure does the State need "restructuring?"  Absolutely.  But that isn't a simple fix.  That takes legislation - if it even has a chance of passing, I think the State prefers to be intentionally vague on interpretations of written guidelines so that they have flexibility in how they chose to conduct business.

I'd like to believe that things will take a turn for the better for Noah, but I'm just not sure yet.  I think only time will tell. 

We did receive Noah's new Vitamix which I wasn't sure we'd see.  And I'm so relieved as Noah's first Vitamix from 2010 had finally had enough of blending three times daily.  It was emitting a bad smell and not blending smoothly anymore and stalling periodically entirely.  For the first time in probably over six months Noah's food was the perfect consistency.  

And I have been passing on Noah's equipment and devices that have grown too small and seen a picture today of a little boy in California, Thomas, using Noah's old things.  And it gave me such a feeling of of peace and happiness.  There are days when I sit here trying to find the purpose for it all - the meaning behind the struggle, my fierce drive to fight on for justice and fairness for the medically underserved, and always at the heart of it Noah who is the center of my universe.   I dream of a world that makes it so much easier for those with disabilities.   I want society to care about them more than they do.  We live in world with such potential and a host of possibilities.   I just can't accept this is as good as it gets for those with disabilities or for their families who love and fight for them every day of their lives. We can do better than this. 

I've been lifting and carrying Noah around a lot more lately.  He just wants to be a part of everything.  Wants me to take him outside so he can be with his little brother, wants me to carry him to watch TV in the master bedroom, to lift him up to look into the refrigerator.  To open the door to after it rings so he an see that his incontinence supplies have arrived.  I am his legs, and considering our house is primarily carpet Noah doesn't have adapted equipment that really works well or propels on carpet.  He is stranded without me.  He knows it, and I know it.  My back is sore, and my right shoulder feels like it's on fire.   It's been like that for three days.  I keep thinking it will get better.  But so far no luck.  I rested for an hour today while Noah had pool therapy on a padded bench and it felt so good, just to sit down, and take a mini time out.  The heat of the pool making me sleepy and content.  And I knew Noah was safe with his therapist in his special needs life jacket so I didn't feel like I had to be on guard worried if his face would dunk in the water or if he'd be in any danger.  Of course lifting him back into his wheelchair after he had rinsed off in the shower only reminded me that my relief was to be short lived. 

Tomorrow is another day.  And I can and will do this.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.