SB-38: The Quest for Transparency & The Consequences to Advocacy

Noah's blog is filled with posts about our ongoing struggles with Medicaid and Noah's CES Waiver.  It's important for people to know the struggles that we face obtaining services that should be covered benefits for Noah.  And we should document and discuss the real truths of why benefits are being withheld from Noah.  

We started realizing in 2014 that there were problems with his financial statements from his CES (HCBS) Waiver.  What the state had been reporting he spent wasn't at all what he was receiving.  When asked about why they were paying out more than what they should have, the response was they were assessing a 3.5 percent FRE fee (for the cost of doing business) and taking that 3.5 percent fee out of Noah's CES (HCBS Waiver) yearly cap.  This year they reported that he used way more in respite care than he did, as reflected by the respite care provider's W-2, in comparison they pocketed over $4,000 themselves just in the respite category alone.  They reported two different figures for the end of 2015, and neither were correct, nor did they really have an explanation for why I received two very different end of year reporting statements.  


Then in December of last year finally someone took notice that Rocky Mountain Health & Human Services one of Colorado's 20 CCB's (Community Centered Boards) that handle the CES (HCBS Waivers) were found misusing funds in an audit.  You can read the news articles at the following links:


http://www.denverpost.com/news/ci_29268965/denver-audit-finds-shameful-misspending-intellectually-disabled

http://www.thedenverchannel.com/news/front-range/denver/audit-reveals-non-profit-misused-18-million-in-tax-payer-dolars

Senator Irene Aguilar sponsored  and introduced a bill called SB: 16-038 on January 7, 2016.  I was hopeful.  Finally.  After all these years, even before Rocky Mountain Human Services got caught with their hand in the cookie jar, I knew there was a problem.  Of course Noah's CCB (Imagine) did their best to deflect any negative perception their way even going as far as to release a Youtube video that can be found here:
https://www.youtube.com/watch?v=tnP3w7a5HZk&feature=youtu.be

After watching this video wouldn't one think that it would appear that CCB's want people to believe that they are not abusing funds that are intended to go to our community's most vulnerable members?  You might think CCB's would support this bill - after all those who have nothing to hide... hide nothing at all.  But Imagine quickly went on the defense and testified before the Senate Committee opposing this bill.  Because they claim they are already transparent "enough" and that it would be too "costly" to be transparent about their financial practices.  Many parents gathered to support this bill statewide, I am not the only one.  But as the CCB's put it, "they have no fear of a few angry parents."

But as parents to severely disabled children we aren't the only ones who should be angry about this.  All of you as tax paying US citizens should be angry. Very angry. You deserve to know where your tax payer dollars are going.  Are they going to help children like my sweet, helpless Noah who is dependent on these programs for his quality of life?  Or are they being pocketed so those managing Noah's benefits so they can pay for things like Costco memberships, or going away parties... and personal internet services?  Who knows where else the money is going, because none of us will ever know that without passing a bill that will force these CCB's into a much overdue audit.

What I do know is my accounting statements are all over the place for Noah, and his CCB is reporting they paid out services on his behalf for things he never received.  So where did that money go if it didn't come to Noah and they report that it did?  These funds don't just roll over year to year.  What doesn't get used in a year - disappears.   And how much money a year does a child have under a CES Waiver Cap?
In 2014 ($36,400) in 2015  ($37,310),  and for 2016 ($37,955).  That's a lot of money.  But Noah's CCB does their very best to deny as many requests as possible to prevent children like Noah from accessing those funds.  The majority of all children under the CES (HCBS) Waiver don't get to access much of that.   If we were allowed access to that complete funding for Noah yearly can you just picture how much better off his life would be?  The recovery and progress he could make? 

To say the least my advocacy and support of SB: 16-038 has continued to ruffle even more feathers.  As the very moment that I was giving a Fox 31 news interview, Noah's CCB left a phone message denying everything before them.  Telling me once again to go appeal it.  As if it were a dare.  I can tell you that retaliation is real.  I can tell you yes without question there are consequences if you attempt to shine a light in spaces that people want to keep dark and hidden.  Parents are hesitant to speak out, as they fear they'll wind up just like me facing even more denials than they were before.  While many support my efforts, few are willing to rise to the occasion of identifying themselves publicly. 

You can watch my Fox 31 news interview here.
http://kdvr.com/2016/02/19/should-disability-boards-that-take-taxpayer-money-have-their-records-open/
I was pinch hitting for another family that was out of town at the time of the media's request for an interview, so I stepped up because there was no one else to talk to the press.  I can assure you my recent media interviews aren't something I find an enjoyable hobby.  But someone needs to stand up so be it, it happened to be me.

I knew I already pissed off the State last July when I brought several issues to the table - including addressing CES funding Caps which resulted in a denial of adapted clothing even though I had an approval for four months a move that was made out of spite after I challenged them making up rules that didn't exist under CES guidelines to block Noah from his covered benefit.  I did get the Order back from the Court and a Judge agreed and reversed their denial.  They had until February 23rd to File An Exception to Initial Decision, and I know I shouldn't have been surprised but they filed a request for a continuance on February 22, 2016 to obtain a court transcript of the hearing, stalling and ultimately after they obtain their transcript can and most likely will still file their Exception to Initial Decision.   So as you can see they make it as hard as they can to make sure you can't even get close to your child's yearly cap.  They now have until March 25, 2016 to file an Exception to Initial Decision to attempt to block me from the Judge reversing their denial.  Mind you I won in court.  I won.  You'd think they'd finally concede and confess that what they are doing to Noah is wrong - especially when you have a Court Order that states what the State is doing is against guidelines. 

 

When I returned the call of Noah's caseworker after my news interview I was pissed to say the least.  While I wasn't mouthy to the point of being out of line or obscene they knew they had pushed my buttons way to far.  I think they expected I'd just quit with appealing, but I made it known I will continue to appeal and reminded them my track record for winning in Court and reversing their denials is good.  Within twenty minutes after that call I received an email from a supervisor saying they changed their minds on one of the denials and said I could resubmit with more information for reconsideration.  You might be thinking they were playing a nice card.  But I can assure you that isn't the case.  When one of their clarification points being they don't want to approve something because they worry Noah's drool on the floor could be a safety issue, you know they're looking to pick anything out of thin air to support a denial.  And just for the record if Noah drools or throws up or even if he cries tears on the floor I just don't leave it here.  I do clean it up - even if that means I have to spot treat the carpet.

I plan to resubmit the request in fact after I finish writing this blog, but let's just say I already know how this is going to go.

So what's the other mind blowing part... because none of this could be enough to make any parent go crazy right?  

The State also entered a denial for PPod accessories for Noah.  For those of you no familiar with a PPod it's an adaptive seating device.  We paid out of pocket for Noah's PPod by using a credit card a few years ago, but could not afford he accessories he also needed to go with the chair.  I had learned that another family had been approved to receive the PPod so I mentioned I wanted Noah's accessories to be funded.  And asked about the procedure.  Shortly after the other family's PPod went from an approval to a denial and the State gave the reason is they changed their mind because they decided the request was a "home furnishing."  While I strongly disagree that an adapted seating device that only a disabled child can use or benefit from is a "home furnishing." They knew they could not use that basis for a denial for Noah since Noah already owned the chair and simply needed accessories.   I asked how I could get the accessories considered, so they anticipated my request, but I hadn't had the chance to submit a formal request or obtain an OT evaluation - a requirement for consideration.  Yet I got a call saying that they were denying it because they were not permitted to be making purchases for any item outside the USA.  The PPod comes from a UK vendor. 
They cited in the denial I received in the mail for this "anticipated request" :

Section 1902(a)(80) of the Social Security Ac, P.L. 111-148 (section 6505) 8.603.40.A.2.f&g. and 5.f. & 11

What this means:

Section 6505 of the Affordable Care Act amends section 1902(a) of the Social Security Act (the Act), and requires that a State shall not provide any payments for items or services provided under the State plan or under a waiver to any financial institution or entity located outside of the United States (U.S.).

This effects any child under any Waiver in the United States.  This is a big deal.  And I mean big deal.  Countless children seek equipment outside the US and use Waivers as a source of funding to do so.  And here's the interesting part.  Noah has received anti-suffocation pillows from the UK.  I appealed and won disposable pillowcases for those anti-suffocation pillowcases (which are a reoccurring order) also that come from the UK, Noah's life jackets came from Canada... A toilet chair that was granted under State emergency funds (but not the waiver) also came from the UK.   Lots of things Noah needs, like many other children who have special needs, come from non-USA vendors.

So now I'm told I have to re-appeal the pillowcases (even though I already won once...) because of this new rule!

If your head is spinning from reading all of this - can you envision how I feel?  

So where do I go from here?  I don't know.  I don't know how to be silent when I have knowledge of an injustice that is happening.   I don't know how to sit on the sidelines and pretend I don't see it - pretend to be blind to what is happening.   I don't know how to stop caring and feeling so desperate to help Noah and children like him.  But no one is paying attention.  I can write about it, I can give interviews about it... I can try to fight for change... but my voice only carries so far.   I do dream of someone coming to my rescue.  Fighting for me, on behalf of Noah.  I'm so tired.  I'm exhausted in fact by what they're putting me through.

Sometimes all you can do is pray.  Without having any clue that Noah is still being blocked from adaptive clothing - even after a court win and now a continuance likely for the State to seek a reversal, I received a few adapted clothing shirts in he mail as a gift from the Butterfly Fund.  They had no idea that I was feeling beside myself, Noah's skin is suffering badly from nummular eczema, sensitive skin and sensory problems. There are nights when I cry myself to sleep because I don't know what to do.  I cry, pray, cry some more, pray some more.  And I know God sees what is happening and weeps for me.  I know God cares, I know he does or he wouldn't have sent an angel to send Noah shirts - especially when no one knew about what the State is doing by attempting to stall and/or block my win.

Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing - but I'm not dead
Tomorrow's another day
And I'm thirsty anyway
So bring on the rain
Jo Dee Messina

 Love, 



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

I Am Cell Aware

The question on everyone's mind: has my new neighbor (aka the camouflaged cell phone tower) moved in?

No, as of now we are currently cell tower free.  But, I'm not at all hopeful that it will remain that way.  The really interesting thing is when you speak out and advocate for your child, you'll find really two groups of people.  Those who fully support you, and those who don't.  We were really fortunate that the people who understood and supported the real impact and concerns that a cell tower will have on a child like Noah, outweighed the criticism, and in turn I found myself becoming even more educated than I ever was before on the issue. Experts and professionals in the field reaching out to me via email and phone to lend a hand and their support with keeping Noah safe from RF harm.  And while they they likely feel like their hands are as tied as mine have become, they've offered tremendous support and reassurance that EMF, EMI and RF are very real problems.

The ironic thing is none of this would have been on my field of vision if hadn't been for Noah.  I probably would have been one of those people who would have been like a cell tower?  What's the big deal about?

I wouldn't have even given it a second thought.  But Noah changes everything.  From the moment he was born it changed everything.  How I seen the world, I how seen others, how others react towards me, and the things I had to learn to care about.  Ten years ago I probably would have been voted least likely to become an advocate of any kind.  I was in my own little world then - and now Noah is my world.  The really frustrating thing is when you have to come to grips with understanding that you are just one person, who can't move a mountain alone. The feeling of being powerless leads to feeling helpless. 

But I can make other people aware.  Noah has a beautiful blog dedicated to our life's experiences, and it serves as a tool for so many who find it and read it, regardless of what they decide to take away from it.  Maybe it makes someone think about something they hadn't before, or makes them feel something they didn't know existed within them, or offers comfort and understanding on a difficult day.  And so I continue to talk about many of the things that effect special needs children and families and one of those is cell towers and radio frequency, and electric and magnetic fields and how they can interfere, known as EMI, with medical equipment and wreak havoc on a child's neurological sensory sensitivities like Noah.

And it's taken me years to figure out these things, I didn't just wake up one day and think to myself, let's fight a cell tower today.   I've learned over the years what can create interference with Noah's devices; a large antenna that a neighbor would install on a rooftop, a weather station... and now in the land of smart meters.  Which has grown complicated for us in the last few months since our meter caught fire and we've been dealing with Excel switching it out for something that would cause less or no interference - something they have been resistant to doing.  While our meter has been switched out "less powerful" smart meter,  that isn't reporting every five to ten seconds, I still have a model of a smart meter, that still reports frequently... just not as frequently.   I've also witnessed Noah's triggers around certain electronics, devices, gadgets... among a host of lots of other sensory triggers.  I didn't learn all of this overnight.  I've spent countless hours troubleshooting problems that come along with special needs parenting.  Dwelling on solutions to problems not knowing how to solve them or what was causing these problems for Noah.  Trial and error.  Sometimes the answers didn't come for months.  I had no idea what was causing the buzzing and static on Noah's devices before we moved to our current home until one day I opened up the window in the master bedroom and looked at an antenna on my neighbor's roof that had been installed sometime over the winter and held up a receiver to the window and realized how much more intense the interference was with Noah's devices. 

I look back on things now - like how sick Noah would get in the car as an infant, toddler and even young child having no clue as to the cause, and realizing how sounds and vibrations and noises, things that I couldn't even hear - that he could rocked his world into a gag and vomit reflex.  Your life becomes incredibly complicated when you have a child with severe disability.  

A company called I Am Cell Aware reached out to our family after they heard about the cell tower being built in our neighborhood and sent out two phone deflectors in the mail.  We also received a RF meter which I'm sure will be put to good use for before and after readings of our home if we're about to have a cell phone tower built on top of us.  There was a dramatic drop in RF before and after the installation of the I Am Cell Aware deflector. So dramatic in fact, a reading from 66.30 to 0.036.  A huge decrease in the RF that our cell phone was transmitting.  Granted for me, cell phones really aren't a big part of my day.  I operate primarily by landline and rarely use my cell phone.  It exists solely in the car - and I'm lucky if it even has a charged battery.  But in my case it is necessary in case Noah were to have a medical crisis while we're on the road or if we break down.  We don't live in a society anymore where someone would pull over to the side of the road to see if we needed help, or to give us a ride without me calling and paying for help.  It's sad, but it's reality. However, Noah's daddy uses his cell phone much more than I do, because he's a semi-truck driver and needs it to coordinate his deliveries.  So, I'm much relieved that this deflector is actually making a difference.

It's ironic as I look back when I was working before Noah's birth and relied more heavily upon my cell phone than I do now, and remember how hot the ear I primarily held it to got, and how my ear literally ached or felt like heat was generating into it.  And I never ever ever gave it a second thought, not once. 

But I keep thinking people will never ever hand over their cell phones, or drop the technology they have become so overly addicted to, but if a simple deflector like that an reduce RF, then why aren't we focusing more on biologists, physicists and engineers that could put their heads together and find ways to still allow for technology to thrive without making us sick or interfering with already medically compromised and those in the disabled community like Noah.  

I Am Cell Aware has created a promo code to assist Noah.  If you use the code "Noah" 20 percent of sales will be donated to him and spreading awareness about how RF impacts many children with neurological conditions like Noah.   We thank them, and so many other organizations and individuals that continue to reach out to us with such love, understanding and sincere desire to help.  You can purchase your cell phone deflector here.

Still want to learn more about how EMF is effecting you and your children?  Here's a great TED talk:
https://www.emfanalysis.com/tedx-wireless-wake-up-call/

I loved this cartoon from Katie Singer in Radiant Times:

Love,



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

Butterflies, Angels and Adorabelly on Valentine's Day

Noah's little brother was exceptionally excited for Valentine's Day this year.  His awareness of holidays has increased now that he's older and realizes that holidays are gift giving days.  Luke's excitement fuels Noah's excitement and he reads his little brother's energy in anticipation of fun.   Luke is still in a phase where he wants to wear identical clothing to Noah.  It's really cute on how much he really wants to be like his older brother.  He'll search his closet to see if he can find something that matches Noah.   So it was really cute that a business called Adorabelly Design made matching Valentine's Day shirts for the boys.  One shirt with a blue truck and the other with a green truck each hauling hearts.  They were perfect for Valentine's Day.  Adorabelly also does a lot of other custom items, and specializes in G-tube covers.  You can check out the store at this link.

Noah was gifted with the sweetest butterfly cookie holding a heart from the Butterfly Fund and Mia's Cookies and received Valentine's Day cards from Angels Sending Hope.   Both were the most touching gifts.  There are days... most days in fact where you feel that you and your child not on anyone's mind.  So when something like these beautiful packages of love find their way to us, it's really a reminder that someone out there cares.  And we need that.  Most importantly Noah needs that.  To have a severe disability like Noah has, and to be non-verbal and be cognitively aware and essentially trapped in a body that doesn't work for him, is understandably frustrating at times for Noah.  I can read it in his eyes the yearning to play with toys that his brother has, or aches for the world to see him, like the world views his typical sibling.  As Noah grows older I fear he feels like he's in the background, even though he's very much front and center to us. 

So when he's thought of and can help open a package that arrived just for him, he understands and I think it really brightens his days, and brings him a spot of sunshine.  We had wanted to do something really special to celebrate the day.  We contemplated dinning out, but knowing that the crowds would have done Noah in, and that it's germ season that was out.  We opted for dinning in at home, and his grandmother found the boys these cute little individual heart cheesecakes at the store for desert, which was perfect for Noah since he demands cheesecake after dinner, nightly.   That's the tough thing, I always think big, and then have to reel myself back into realize a lot of these things just aren't realistic for Noah.   If it's too cold or windy, we're indoors, if there will be too many people and crowds or long waits of any kind the game plan is out.  But sometimes the best plans are the ones unmade. 

I am always trying to keep gifts for the boys equal.  I found these chocolate heart suckers at the store and knew that Noah could suck on his with assistance.  It is often hard to keep things the same when you have children that have different physical abilities.  But, I'm trying.  I don't want either boy to ever feel left out of experiences just because of the hand that life dealt all of us.  I paired their suckers with a Lion Guard bath towel for Luke that I found on clearance and and a Disney book for Noah.

Noah is really into books at the moment.  He could have someone read to him non-stop all day long and not get tired of it.  He's also make great efforts to learn how to spell on his AAC device.  Who would have ever thought Noah would learn to spell words.  But we are working on a literacy program and of course reading books with him as much as we can will help him to learn to read and spell words.  I kind of wish there was a an adaptive chair that was made for a parent and a child to sit in together.  We sit Noah on our laps but he slouches and I can tell sometimes the way we have to hold him might bother his hips and sides of his legs, he arches to re-position himself.  It would be neat if there was a couch designed for families like ours where we all could sit and cuddle together comfortably and read.  But even if something of that nature existed I'm sure it would cost as much as a new car, and wouldn't have an insurance code for funding. 

I watched Noah's daddy read to him nestled up in the same recliner chair that we used to use when we bottle fed him as a baby in his nursery, today.  And I love my spouse, my partner, Noah and Luke's daddy more and more for the person he has been all these years and the incredible love and devotion that he has.   I couldn't do this without him.  And I genuinely mean that.   Noah takes the very best of the two of us.

I love you
for all that you are
all that you have been
and all you're yet to be.

Love,



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

Return To Warm Water Therapy

Nearly a full year after Noah's former warm water therapist retired, her replacement was hired.  We always have some reservations when starting up with a familiar therapy but with a new therapist. You never know what to expect and if Noah will welcome the change and accept another person into his routine.  Our first session went well, Noah seemed open to the fact that he was experiencing a different therapist in the water.   I was worried that child before him would cause him a sensory gag or sensory challenge.  Last time Noah had a child that came after him, but not before him.  This time it is the reverse.  Noah's sensory challenges to other children that he is unfamiliar with or that he feels gets too close to his personal space is typically a gag and vomit trigger.  But, staff and the child's attendants do a great job of understanding Noah's challenges to others and I'm so thankful they aren't offended by the knowledge that Noah often doesn't respond well to change, strangers or others too close to him. 

I'm trying to get used to not writing therapy notes during Noah's session - something I did for five years prior.  Now I'm just mom watching Noah do therapy, without secretary duties.  Not that I necessarily minded, but the routine is different for me too.  Some of what we are doing exercise or therapy wise is different, but in a good way.  Noah seems to be responding well to doing new things.   Our momentum started off slow.  Shortly after our first session, there was a mini accident in the pool which caused it to close for a few weeks until they could get the chlorine levels back to normal.  So today was our second time back.   Noah's new therapist is easy going and relaxed, and super helpful. 

The current bath seat however at pool therapy is an Otter and it's really rough mesh fabric is wreaking havoc on Noah's skin.  That is why we had to ditch all products that we have here in the US that are similar.  Noah had a Manatee bath seat at one point and a Columbia Bath Seat.  Both from that standard mesh that vendors use that irritate his skin and cause instant skin breakdown, abrasions and rash, and also sensory wise drive him to the moon.   I asked for a really long time for the current shower chair that his therapy center has before they finally ordered it to help him and other children like him who needed it.  

There is this little voice that sits on my shoulder that says... Stacy... you need to reach out to the therapy school and attempt to explain to them that long term this shower chair with terrible mesh and a broken wheel isn't going to cut it and ask them to order something that is hygienic for all children to use, soft for sensory issues, a bucket seat design so that children can't arch out of it... that isn't made from mesh... and oh it costs only around $3,800.... yes they'll like that part, oh and it comes from the UK.   The incredible T-MAX Shower Chair. 

Speaking of which we asked to access emergency funding through Noah's county services.  After documentation that Noah needed the T-Max and why from his local DME, and treating physician, his caseworkers consented to ordering him one.  I'm reserved on celebrating that a T-Max will be in Noah's future soon because I haven't received email confirmation saying it's been ordered, and likely because items and resources for Noah have been so hard to access lately.   I think I will reserve celebrating until it actually arrives and is delivered to the house.   These days seeing is believing.

No, Noah's T-Max shower and toilet chair won't be something that I can get from our home to warm water therapy, so the therapy school would indeed need to order their own.  While his therapy school hosts a large yearly fundraiser in March of every year that generates a lot of funding for the school, my gut instinct says they will be really resistant to my suggestion that they purchase one - just given how hard it was to convince them that holding Noah in our laps to wash him after getting out of the pool was a growing safety concern with a child who is no only slippery when wet, but loves to attempt to arch out of your arms at the same time.

Yet, I don't know how to quietly just put my tail between my legs when it comes to Noah, so in my mind I'm already going over the best way to approach asking the therapy center to invest in a better and safer product to bathe children with special needs after they get out of the pool. 

Noah's HCBS Waiver approved the funding of two life jackets for Noah at the end of the year.  One that allows him to be upright to some degree and one that allows for him to lay on his back.  We've attempted and trialed a lot of adapted swim devices with little success.  Noah's high tone in literally every product we've tried he could throw himself backwards with his tone and dunk himself.  Frightening for a parent when you know you have a child that is a high aspiration risk.  I was cautiously optimistic about the success of these specialized life jackets that are manufactured in Canada, simply because nothing else has worked.  The price tags on both weren't great, but there are really no good price tags on anything Noah needs.

We attempted the life jacket that allows him to float on his back first, that one seems really stable and great, followed by the one that I thought would hold him upright.  But that one makes him look kind of like an unsteady bobber in the water and I feel it's more unpredictable than the back float, and likely without constant supervision and occasional correction that Noah would find a way to roll in it face down.  I think they both will be helpful for Noah.  Both devices require two hands to put them on Noah, only because of his lack of independent head, neck and trunk control.  Overall, I would feel comfortable recommending both of these products to other special needs parents who have children who are severely disabled and often need all available support options in a product.  While, pricey I feel the level of safety and the design of the product is good.  For more information about these life jackets click here.

Of course these new devices add to the gear I tote into therapy; a wheelchair, a folding therapy mat, a mesh bag with two life jackets, a pool bag with a change of clothing, soap and supplies... and of course the extra things like a jacket when it's cold.  And there are no handicapped buttons I can push at the door.  I have to find a way open he door with all of this, hold the door with my foot and push Noah through first in his wheelchair, pray all the gear I have squeezes in fast behind me, so that I can enter a code for the second set of doors to open so I can also get through those... I'm sure to others I look like a complete mess with just getting into the building.  Of course I wish I had more hands.... or help or both.  I manage however, making what really feels impossible become possible. 

It's like that saying "if it doesn't challenge you, it doesn't change you.  Swim harder."

Love,



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

SweedieKids is Sweet!

If you have a child like Noah, chances are you still have a need for bibs.  And not just any bib - but a bib that can go the distance.  While we still use a large amount of disposable baby bibs (which are quickly becoming too small for Noah) during meal times, we still use cloth bibs for all his drink breaks.  Noah doesn't drool constantly, sometimes when he's excited or has been laying in one position too long, so we don't use them throughout the entire day.  But, bibs are a very much a part of Noah's everyday life.  I'm always on the hunt for cute bibs that have style and character, ones that work well, and ones that will fit a child of Noah's age. 

We've been playing with some SweedieKids Bibs for Noah lately.  I like that they carry an XL bib which works well for Noah.  His problem isn't so much neck size but the length that we need a bib to be to cover as much of his clothing as possible.  Noah like a lot of children who have Cerebral Palsy with athetoid movements can get quite messy at meal times and while drinking because his arms are always swinging.  He gets food on us, the floor, himself... his clothes... the dogs fur is even plastered with food occasionally.  So bibs are huge or we could otherwise go through multiple outfits a day.

I really like that SweedieKids even incorporates their clients into their product, even asking them to help pick out their own line!  Every successful business and vendor hat really listens to the special needs community that they serve will inevitably find loyal and ongoing customers.  SweedieKids washes up really nicely and doesn't fade like many flannel printed bibs do after being washed.  I also really love that SweedieKids gives back to the special needs community and donates $1 of every purchase to a charitable organization benefiting those with special needs.   (Did I also happen to mention the owners grew up in Sweeden?  Hence he name SweedieKids).   And their customer service is exceptional, they are always very prompt to respond and address any questions or concerns. 

I also love that SweedieKids will ship their product all over the world.  I wish all businesses that made products for the special needs community would do that.  I have a long list of things that I would love to obtain for Noah that I have no way getting here from across the pond. 

So you're probably wondering with everyone making a bib these days what makes SweedieKids special....

*First they use a really soft jersey knit fabric, that stretches and gives as the child moves.
*The way the bib drapes in the front assists with catching drool, liquids, or dissolved foods that seep out of a child's mouth
*The bibs have three layers to make sure it is extra absorbent; a jersey knit front, a sweatshirt flannel for the back, and a middle layer fabric made from recycled bottles
*The bibs are available in 4 sizes: small, medium, large and extra-large

I hope that SweedieKids continues to grow and expand their line... perhaps even designing something for us moms and dads, like a stylish apron/cover while we're feeding our child that has athetoid movements... wink... wink.... or even a large square bib that really covers more of the child's clothing or a slip into bib with sleeves! 

Noah pictured in an X-Large SweedieKids Bib

Noah's new SweedieKids Bib is part of their Limited edition Valentine's Collection.  And true to the bib's print, Noah loves it!

SweedieKids gets and A++++
To purchase yours click here

Love,



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

Another Administrative Court Appeals Hearing

I wrote this post two weeks before Christmas.  I was going to post it sooner but it felt like it was smothering the holiday season, Noah's seventh birthday and I was in the middle of trying to protect Noah from the harm of a cell tower in our neighborhood.  Overwhelmed feels like an understatement.  But in any event I know there are some who have been wondering about how the most recent appeal for Noah's benefits went:

I keep thinking eventually I'm going to become numb to the wide array of emotions that I experience every time I have to fight for Noah.   But each time feels like the time before.  Every single appeals hearing I go into prepared for battle.  I spend usually no less than four to six hours drafting a Motion, compiling exhibits, making copies and drafting certificates of mailing and making sure I am way under that thirty day rule with time to spare.  Then I obtain a hearing date, calendar it, and watch that day slowly inch closer, knowing that the week I'll be be preparing the testimony that I'm about to give to a Judge.   Carefully re-reading my words a thousand times, so that I can do my best to represent the facts without emotionally falling apart at he seams.  And I know that I have no choice, because if I don't fight then Noah loses.  I am all he has.  I am all he will ever have.  There is no one else on this earth that would fight for him like I do.

I was particularly annoyed that Noah's CCB waited until one day before our scheduled hearing with the ALJ Court to submit their packet of evidence.  Doesn't give me a lot of time to prepare for anticipated testimony for cross-examination.  Their exhibits were really a version of mine copied, so I know I did half the work for them.  All they had to do was remember to label them numbers and not letters.  The State did name a witness and I had planned to object to as I had never heard this person's name before, and the nature of their testimony was not provided or disclosed.  However, that witness was a failure to appear.  Much like the State didn't appear at all for the last appeals hearing.  The tone of this appeals hearing was also much like the rest.  You know that the State is silently spitting nails your direction and you feel their dislike for you.  I'm sure speaking the truth can do that to most anyone.  I don't go into battle unless I know that I'm in the right. 

What makes his appeals hearing a bit different is there is now a pattern.  Noah is being really either continually denied or significantly delayed on any approvals.  Over the summer I was involved in several meetings, some with the State, advocacy groups, DME's - it was a busy summer for me.  And I only did it because I wanted to make things better for Noah and families walking in my footsteps.  I know that many of them want to fight and don't know where to begin, who know their children are being railroad and denied without proper reason.  I have the courage, the bravery, strength and understanding of the legal system to not feel intimidated.  And I know how appreciative other families are that I'm willing to stand up for everyone. 

But along with that can force you into greater consequence.  Being an advocate for your child or your community isn't easy.  And since the denials are really hitting Noah fast and furious I feel without a shadow of a doubt that Noah is suffering the consequences for his mother being outspoken enough to challenge the injustices. 

Noah's most recent appeals hearing was about his adaptive clothing denial.  For over four months Noah had an approval from the State for adapted clothing.  But the State wanted me to mail them a check - for an amount they wouldn't even disclose or be forth coming with me about for what they felt was my parental portion.  I explained that the nature of sending the State a check for services that they were supposed to be assisting my child with didn't at all feel right.  So I proposed they send us a gift card for an amount that they determined they'd fund.  While his CCB seemed agreeable, they would not simply allow me to use a gift card within the dollar limit but wanted me to make purchases beyond he gift card amount for what they felt our parental financial responsibility was - again an amount they refused to disclose to us.  When I again sought clarification and was growing frustrated in their lack of communication they offered to personally come to my house with the State's credit card - force me to order whatever amount they thought I should owe and they'd pay a portion - again without telling me how much that would be.  Did the state think I should be pay $100?  $200?  $500?  How much?  No one would say.  They danced around my very direct question for four months.  So I decided I would slide the issue into a meeting I had coordinated with the State.  I had several agenda bulletins - some of which weren't even my issues but issues that other families were currently experiencing and I was going to bat for them.  And while at the meeting I certainly took the opportunity to also discuss my ongoing problems with Noah's adaptive clothing approval.  The State representative again confirmed that Noah's adaptive clothing request was approved.  While at the meeting I specifically asked the State representative if our meeting would have any impact or repercussions on Noah's benefits, she indicated it would not.  You always run the risk when you advocate that you will unintentionally ruffle feathers, and even though my personality and my approach is non-aggressive and my tone and presence remains courteous, professional and kind. The content of the discussion can unintentionally cause automatic tension - even when you don't intend it to.

Shortly after this meeting with the State came back saying that they were offering me a 50/50 financial proposal.  I pay 50 percent and they'll pay 50 percent of Noah's adaptive clothing up to $600.  Which means we'd have to match $600 yearly out of pocket for Noah's clothing when annually we were used to paying roughly $82, because I am forced to shop at Walmart and Target at best due to the financial strain as a result of the out of pocket costs associated with parenting a child that is severely disabled.  I pointed out to the State that I had gained knowledge that other parents who were utilizing the same adaptive clothing category did not have a 50/50 percent assigned and in fact the State picked up the entire tab, and didn't assign any financial responsibility to families.  Obviously, me pointing out that Noah's case was being handled differently and unfairly hit a nerve and instantly our four month un-clarified approval became a denial overnight. 

"You are correct in your assessment that there is 'nothing in any literature that outlines this 50/50 percent guideline that you've just determined.' Because there are no guidelines in the rule the decision mst be to approve or deny.   After careful reconsideration of your request for clothing to be purchased through the Home Community Based Services-Waiver-Specialized Equipement Supplies, the request is denied."  An 803 will issue which "will give you your appeals rights."


I have a wide range of emotions.  Sometimes I'm boiling mad that I have to fight harder for Noah than most parents in my position do, other times I'm heavy with sadness, feeling like the weight of the world is on my shoulders, that feeling like you know people are counting on you to go the distance - not wanting to let Noah down - not wanting to let anyone down.   Even after just having finished the hearing just a few days ago, I feel heaviness for what I know I cannot change - especially on my own, with feeling like I invested so much time away from Noah and my family to make sure that he's provided with services that are due to him.    That feeling of being torn into a million piece and and pulled in a thousand different directions.   At the holiday season no less.  A time when people are signing Christmas carols and I'm trying as hard as I can to reverse denials for my little boy at Court hearings.   Someone needs to Spike My eggnog and sprinkle me with some holiday cheer.  I'm just doing my best to hold my head high and keep going. 

This appeals was a messy one - because I had an approval for so long and then a blatant denial which was an obvious abuse of power.  The State and Noah's CCB still annoyed from the last appeals hearing that I succeed at and they still haven't complied with an Order from October 26, 2015 in which they court reversed the denial and ordered his CCB to fund and purchase disposable pillowcases for his anti-suffocation pillow.  They also still haven't ordered two life jacket vests needed for warm water therapy that was approved October 20th.  Here we are almost at the end of the year.  And still not ordered, much less received.  What can I really do about it?  At this point in time someone with more power than I have would have to step in and fix it and I don't even know who that person would be.

**Update since this blog was initially written:

2 hours after the hearing on December 16, 2015 Noah's CCB notified me via email that they were finally complying with the Court order from October 26, 2015 and ordering Noah's disposable pillowcases.  Noah received his life jackets the second week in January.

I've requested to access Emergency funding; our primary hope is that they will fund Noah a T-Max shower chair that retails for over $3,500, a decision has not yet been made but all paperwork has been submitted for consideration.  They initially said they would approve the UV light filter for Noah (which would kill germs in our home and purify he air for him) they rejected it since the T-Max is costly.   So at some point I likely will have to put in a request for the UV light filter through his CES waiver and not Emergency Funding, which likely will face a denial and I'd have to appeal yet again.  This endless cycle of appeals.

I've submitted paperwork for a home modification request and a new Vitamix because Noah's current one is trying to bite the dust on us and is no longer blending his food well.  Both of those requests will be considered February 2, 2016.  Although the home modification then likely will be submitted to the State for further consideration because the estimates exceed what his CCB can approve on their own and will require additional approval.  The home modification is needed for safety concerns, health and well-being concerns with Noah in relation to being on the floor, and his equipment like his power wheelchair, gait trainers, standers etc being accessible and utilized on a hard flooring surface. 

There are other things Noah needs that they haven't responded to (i.e. PPod adaptive chair seating accessories, oral swabs, saline swabs etc.)  they haven't decided if they will allow me to ask for any of those things.  Which is truly frustrating.  It's this "mother may I" system.  Which makes it tremendously difficult to not only access help for your child that is supposed to be there, but obtain it within a reasonable amount of time - not 9-12 months later or even after they force your hand into an appeal. 

As of today I have not heard back from the ALJ on the decision regarding Noah's adaptive clothing hearing.  I anticipate I will likely receive a written ruling within the next two weeks.

February 1, 2016 the Home Modification Cap gets approval to increase to $14,000 from $10,000 - Although from what I can tell families are not being informed about the increase.


"Strength grows in the moments when you think you can't go on but you keep going anyway." 


Love,




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

Electromagnetic Sensitivity with a Special Needs Child: The Verizon Cell Tower Fight

Always a mountain a climb in my life all because I'm now the parent to a severely disabled child.  These things are hard, no matter what the issue is, it's hard.  The most painful part is the feeling that your soul is literally screaming on the inside, but no one can hear it, no one can see it, no one can even sense it.  The entire world is blind to it.  It's so easy to turn the other cheek and to think, "better you than me," "or we feel bad for you, but it not our kid, so really it's no big deal."  we feel for you, but..."  or even the artificial concern.  And believe me it's so easy to sniff out the artificial caring.   

I don't ever get a break, or a time out, or the freedom to really tell people how they make often make me feel.  That darn ego that I wish people didn't have, that forces people to think I before we, and me before you. The world is filled with opinions, statements and thoughts - and people carelessly throw them around like it's really no big deal at your expense.  I wish I could gift everyone with one day in my shoes.  And I say gift because Noah is the ultimate gift, and because that would be the only way to give another human being, no matter what relationship they had with you, a profound understanding of your life's journey and the real and present struggle that exists with raising a child with special needs. 

Likewise, it's certainly hard to get those who are unfamiliar with a child who has special needs to understand the gravity of what you deal with, how truly "un-normal" our lives are.   I think I've tried to explain Noah's severe sensory processing disorder in a handful of ways in the last few weeks and no matter how hard I try, it doesn't work.  It's like trying to talk to someone who's never seen the sky and that person only being told what it looks like.  They'll never really know because they haven't experienced or seen the sky for themselves. 

And then cognitive dissonance comes into play. If you've never heard of the term before, it is the psychological theory that causes people to dig in their heels and hold on to their beliefs and opinions even when faced with overwhelming evidence to the contrary.  For example it's easy for someone to say for instance "Local government allows citizens to be closer to decisions and to have direct and timely input into decisions effecting their quality of life, their individual rights and their property values."  Yet even with evidence demonstrating facts for all those three basic human right and values, it's easier to double-down on an opinion in light of evidence to the contrary.  The end result means no one ever has to recant or reconsider their position.  And if they are in a position of power they can always be right, no matter what.  They don't need facts nor evidence. 

Cognitive dissonance also puts people on the defensive.  That is something that I think many special needs parents experience quite frequently.  As such, it really decreases the amount of real support that a special needs family really feels it has, and further contributes to the realization that we don't mean as much to others as we wish we did.  And in the end only confirms what we were already feeling... we are alone, so very alone in all this.

I've spent the last three weeks trying to advocate for my neighborhood and for Noah.  Pounding the pavement so to speak and keeping my heart, ears and mind open so that I could absorb other homeowner concerns and incorporate them with mine for Noah. 

Ironically when I moved to this house I thought it was a really wonderful thing that I had a church across the street and a church on the side of me.  Like we were nestled in God's space.  Two months after we moved in the church closest to the city's cemetery was torn down due to soil issues.  I'd still walk the cemetery with Noah and walk the path to the park, and I often would ask God personal questions that I only wanted to share with him and no one else, and being so ever still to see if the wind would whisper me the answers I am always seeking.

Then last July I got a notice on my door that changed it all.  The closest church to me decided they were going to enter into a contract to allow Verizon Wireless to build a 52 foot bell tower on their property, giving the church $2,000 a month to lease their land to start, (and I say that because now any other cell company can add to the tower and give the Church even more money monthly). Homeowners fought it, I fought it and we had a 4-0 victory vote with Planning and Zoning.  We thought that our collective voices had prevailed, until City Council voted to override planning and zoning and approve it 5 to 4.  The last three weeks I've dedicated my time and efforts to presenting information to City Council that were all of homeowner's complaints and concerns, even submitting letters from Noah's treating providers to document the impact that a cell tower will have on his life.  Because of the frequencies that Noah's medical equipment runs on a tower that is 300 feet to the closest home very well cause static, and influence the ability to properly hear and see or determine what is going on with him.  And yes frequencies can interfere with each other.   Electric fences can have an impact on cell tower, pacemakers are influenced by EMF (which is referred to as EMI).  It's real and can be substantiated even though there are many who believe that isn't the case.  I suppose it's very much like that cliche saying:  "Ignorance is bliss."  And then I have Noah's sensory gag and vomit reflex that makes him at risk for aspiration.  Noah's triggers are to sounds, and even vibrations - among a host of lots of other things.  When you know your child well enough you know what is going to cause a problem.   I even reached out to the Church and their silence towards me has made my heart even heavier.  Promises they'd be in touch with me turned into literally the church offering me nothing but a cold shoulder.  Although being shunned by a Church over a child with a disability isn't at all uncommon, especially when you don't want to compromise a desire for money which rules all else in the world we live in - even in places of worship.  An article about this church's efforts couldn't have said it better.  It's a "Non-Demominational Cash Flowing Epiphany."

I wasn't the only homeowner in the subdivision to have a complaint, there were soil and water table concerns - because the church was torn down in 2013 because of a soil issue, now the church meets in a gym, and just in the last few days, because of his issue slapped a Church sign on the gym.  The community was starting to point fingers that we were putting a bell tower on property where a church doesn't even exist.   There were horned owl concerns that are a protected migratory bird, data of cell tower fire and collapse, the liability that the Church is assuming, no testing had been done, no neutral third party agency consulted and property values decreasing, and asthetics concerns of the tower.  City council tried to convince me and others we needed this for 911 safety, although after I pointed out that the Verizon representative herself admitted this was a preemptive request and that I being ironically a Verizon customer myself have experienced no difficulties in any of my calls even to 911, they changed their tune and then ironically it became about our community needing increased Wi-Fi service at this last hearing.  I'd offer the fact that we lack a problem with either.

And the kicker I suppose is a homeowner asked about existing conflicts of interest and inquired of City Council members who were either members of the church or a Verizon customer.  Some chose not to answer because they didn't have to, while some did indicating they did not have a conflict.  Yet the Mayor admitted he had been a member, but honestly I suspected as such when he mentioned it was his late wife's desire to see a steeple rebuilt there at the last hearing.  The Mayor isn't a part of the voting process unless there would be a tie.  But I would have felt better if there wasn't a church relationship of any kind at all with any of City Council so that all of us could have that reassurance without a shadow of a doubt that a conflict didn't exist.  He after all feels like the ring master in essence of these meetings.  And it's not uncommon for a body of peers to have an allegiance to vote alongside their friends.  There wasn't anything that we could have presented to City Council - none of it would have made a difference.  Their intent was always to approve this tower no matter what Planning and Zoning decided.  There was way too much they turned the other cheek to - Including ADA law that supports and recognizes electromagnetic sensitivity.  Having over a decade of courtroom experience it's easy to recognize when some is leading questions to pull out the responses you want to hear to justify your cause.

The end result - not a reversal of vote, not even a reversal to consider additional information or time - but a "study session."  What is a study session you might ask?  It's just a time when City Council members discuss the issues without the public being able to comment - although the public can attend.  What becomes of them?  Nothing they are non-decision bearing.   No formal action may be taken by the Council at a study session other than to direct staff to proceed in a certain manner and to bring items back to a regular session for action.   If I had to place bets I'd say that this issue will ever be brought back for a regular session or for any action.  Although the Mayor made a statement that Verizon could only be "asked" to delay but were not obligated to do so, which was likely leading Verizon to the suggestion that they should not only go ahead but to move quickly.  Although the ground is hard from the winter temperatures, I have no doubts that they'll probably be digging in the next few weeks.

I still had hope and faith all homeowners would have an impact - even after one city council member said he didn't want to play whack-a-mole, and was firm on his standing.  Realistically if we assume that attitude then not only are we wasting tax dollars on Planning and Zoning application reviews but we're wasting City Council's time too.  If the standard is let's approve all tower requests that come our way, then why have a process?  There is such a thing as the Federal Cell Tower roll out which is happening in Northern California; Houston, Texas; Parts of Colorado; New Jersey; and New Mexico ... just think this could be happening to you too super soon!  Because we all should desire to live 500 feet or less from a tower - camouflaged as a tree, a church bell tower, or even a cactus. 

I did everything I could, so did other homeowners.  We worked hard to have our voices heard.  We really did.  Super hard.  I have some great neighbors.  But now soon I'll have a cell phone tower as a neighbor too.  Along the way I met some incredible people I wouldn't have met otherwise and connected with those I felt that really genuinely wanted to help me, and I owe them the world of thanks for their kindness and sincerity.  Katie Singer, who wrote an informative book that I think everyone should read called Electronic Silent Spring and his been gracious and kind in her correspondence, Deb Carney, an environmental attorney that was warm and easy to talk to, who I'm so blessed accepted my call when I learned of the cell tower approval. William Collinge, Ph.D, who provided me with amazing expert reports, and words of wisdom, to all the reporters and press who took the time to cover the story,  my neighbors many of whom I may have never been able to meet otherwise. The investment of all of their time to not only try to help me, but themselves as well, means more than I could ever express.  And I am so appreciative of their efforts and support. 

Katie Singer reminded me when one door closes... another opens.   I have no idea what that door would be.  That new door not only feels locked but locked with hundreds of locks with missing keys.  Where do any of us go from here? I can't move although that feels like the first thing I want to do - how far can I run away from all of it?  But I can't my hands are tied more than I could ever tell anyone.  I am stuck.  In fact I am stranded.  One of City Council members suggested the neighborhood find a neighbor with money to buy out the church if we didn't like it, perhaps I should have countered the suggestion that City Council find a way to relocate our home, but it's not in my personality to be snide.  The fact that the Church was here before the homeowner subdivision and that the Church trumps us was also a hard pill to swallow.  I was here before the cell tower, but that doesn't mean anything.   

Of course this has caused an me to develop a tremendous distrust that was already growing as time went along, and now the suggestion is I allow Verizon into my home to attempt to minimize interference that this will cause to Noah.  Ironic isn't it that a business who can get up and give testimony that this is all okay and safe would even engage in a conversation to suggest otherwise? Even if I were to entertain this idea, it would do absolutely nothing for his sensory issues.  My government elected officials have successfully made me and Noah even stronger prisoners of our own home.

And yet I'm left with how I am truly feeling which was included in my speech to City Council:

"A church bell tower with a cross on top is an aesthetic symbol in our civilization of good will, compassion, caring about humanity, caring about the most vulnerable among us, and spiritual values. Instead this church, which already gets special tax and zoning considerations from the city, is proposing to change the meaning of this revered symbol into an obscene symbol of greed and disregard of human and spiritual values—the opposite of what it is supposed to symbolize. Aesthetics, as you know, is a valid criterion for denial according to the FCC regulations.

This will become a SYMBOL of corporate greed and rejection of spiritual values in our neighborhood every day, and all homeowners and residents of Broomfield County will be constantly reminded of the failure of our City government to put our human values first."

Introducing my new daily reminder of just how much our voices mean: 

These are the links to some of the news media stories and publications:

http://www.broomfieldenterprise.com/broomfield-news/ci_29360892/broomfield-mom-seeking-new-thinking-cell-tower-at

http://kdvr.com/2016/01/12/woman-fights-cell-phone-tower-construction-in-broomfield/

http://www.dailycamera.com/news/boulder/ci_29377652/opposition-broomfield-cell-tower-fails-sway-city-council

http://denver.cbslocal.com/2016/01/12/woman-worried-new-cellphone-tower-will-affect-sons-lifesaving-medical-equipment/

City County Hearing: Here

Love,



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