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.