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.