This is a post that is- and yet isn’t- about me. As I contemplated how I wanted to approach writing a bit more about our holidays this year, I knew that what would feel most joyful for some to read would be focused on the superficial aspects. A diorama of Christmas trappings and traditions as they mechanically played out to hang on this blog is only one facet of the reality I have lived this past holiday season. That we all have lived. And yet, one has to look past the performing of the motions and the holiday pictures to find a truth with more dimensions.

So while I will indeed build a more external diorama for each of you early next month, I decided those scenes would ring with a bit more clarity, honesty, and substance if I first wrote about some of my internal state as I tried to put together one holiday celebration after another the past few months. Now, in all honesty, this would also be far more complicated than I could possibly tackle in one post, so I have decided to focus on one theme that has been playing out for many months now. You may have many questions at this point, and all I can say is me too. Me too.

May 15, 2019 I submitted an application packet to the Division of Developmental Disabilities (DDD) for an AAC (Augmentative and Alternative Communication) device Re-Evaluation. The day before our 16^th wedding anniversary. June 3^rd, the same morning Tony is getting a dental cleaning under sedation, we pick up a letter from the post office informing us the request was denied. That afternoon I write our support services coordinator informing her of our intent to appeal.

Weeks of discussion, research and writing culminates on July 15, 2019 when I filed an appeal that contained statements and supporting documentation from myself, Tony’s speech team, and Stephanie, the BCBA overseeing our son’s ABA programs. On August 9^th, 2019 a Notice of Appeal Resolution is written informing us that we have won this appeal.

Weeks go by, and I have begun asking questions. What is going on? Why isn’t anyone contacting me to schedule an AAC evaluation? Nobody had answers.

On September 27^th, I get a text from Tony’s speech team that they have been contacted by the AAC vendor who was assigned to provide the services. This provider group had made multiple attempts to reach a resolution with DDD representatives that would allow an AAC evaluation to move forward. I was advised that testing requested in the NOAR as specified to be performed during the AAC evaluation was not part of the AAC evaluation process. I was informed that the members of DDD management involved were maintaining that the NOAR would remain as written.

Would that block our son from receiving services then, if AAC evaluators could not carry out the terms of the NOAR? Nobody in the valley metro area would complete the services as specified, I was informed. So on September 27^th, I filed a grievance with DDD. Two other people connected with this case did likewise. On October 31^st, after a month of not getting any feedback as to what was happening with the grievance process when requesting follow-up, I received a communication from a DDD representative stating that she had been informed the matter had been resolved and asking if my son had received services. The situation had not been resolved, and we had not received services.

On November 7^th, I receive a decision from DDD that management had reviewed our concerns, that the NOAR was to stand as written and since the NOAR directed we could file for a court hearing if we disagreed with the decisions in it, I was told I could do that if I had any further concerns. Wouldn’t a court hearing increase the cost of providing care dramatically? Why would DDD advise that such an expensive process was the only way to fix a concern for a service everybody involved knows our son meets medical necessity for? If we had met in court, our family would have won…and I think we all know that? What exactly were DDD representatives hoping to accomplish with the initial refusals to fix this outside of a hearing?

I continued to communicate back and forth with DDD representatives, including J.T., the supervisor for the Support Services Coordinators. I also reached out to an advocacy group, Raising Special Kids, to see if there was anything else I should possibly be doing differently. Their representative told me I was already doing everything that they would recommend, and that our situation had risen to the level of needing an attorney. I was directed to call the Arizona Center for Disability Law. For family and loved ones who have been reading with us since the beginning, you may recall we’ve been in the position of needing to contact the ACDL once before. Why would the family of a child with disabilities so well documented possibly need the ACDL twice within an 18 month period?

J.T. is the hero of fiscal responsibility in this story, and she will be leading off my gratitude notes next week. After weeks more of continuing dialogue, on Friday, November 22, 2019 I sent a final e-mail advising J.T, Miss J our fabulous Support Services Coordinator, and our speech team that we were officially out of time for a resolution due to the time limits involved for filing a hearing request. I informed them I would be filing the request that following Monday morning.

An hour later I got both a phone call and an e-mail from J.T., who authorized a unit for Tony’s speech team to complete the testing separately that fell outside of the scope of an AAC evaluation. So I put a phone call to the ACDL on hold- for now. The two evaluations sandwiched Thanksgiving- one before, one after. And I wonder…how much money in payroll did DDD representatives and management spend fighting our team for something, again, that Tony met medical necessity for? Wouldn’t it have been cheaper and easier to fix the conditions of the NOAR which effectively blocked receipt of services without all of this?

In this day and age, if anybody were to duct tape the mouth of of a verbal child, they’d be charged with abuse. I find it astonishing every time I have encountered the attitude that any loss of access to an AAC device for even a brief period of time to non-verbal individuals is acceptable. When a device needs repair, a device with the same program should be available to loan. For those actively and demonstrably using their AAC devices for effective communication, malfunctioning devices should be replaced before they completely stop working and that person must face the short-term loss of the only voice they have. I believe any policy which makes access to AAC devices either more expensive or more difficult to obtain for non-verbal individuals also needs immediate re-evaluation.

So shouldn’t I be celebrating? Tony got his finally separated evaluations, but I don’t know. You see, now, we wait. We have been told that DDD can challenge the recommendations of the AAC evaluator, and they have 60-90 days to notify us of a decision. And I wonder…what will the New Year bring us when it comes to this situation? And, will I face retaliation that could make things harder for our family and Tony for publicly speaking about this?

I decided the truth is what matters most here, and I want other families to have that from me. I don’t have a lot of spare time, and certainly I would love to spend what I do have focusing on both of my children- not spending so much of a precious and limited resource fighting this kind of seemingly unnecessary battle. We have been involved in the process for obtaining AAC evaluation alone for seven months. I can put on the glitter and the glitz on the outside, and I certainly have, but instead of tasting cloves my emotions are coated in the grit of soot and smoke. I can look at one picture after another of my favorite holiday looks this season…and note that if you look deeper into my eyes, none of that sparkle emanates from within.

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Emotionally this holiday season, the truth is I feel more withered than celebratory. I pick and choose my battles…not everything is worth a fight. If engaging in a battle for a certain outcome doesn’t serve my son’s best interest, even if someone is breaking the law and I could win, I might walk away from that. But a fight for access to his main form of communication? I will engage in that every single time with a single-mined focus on success. And if you are the parent of a non-verbal loved one, you should too.