Noah's Miracle : January 2016

Wednesday, January 27, 2016

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.

Wednesday, January 13, 2016

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: