This is an impromptu post for the week, and my originally planned post with a few videos will still be running on Friday. I will do my very best to keep that one much shorter.
More than a month ago, someone forwarded to me the original media alert sent out by the Autism Society of Greater Phoenix, along with a complete copy of the joint demand letter sent to DES and the AHCCCS Administration by the ACDL and the Arizona Center for Law in the Public Interest. These documents were given to me more than two weeks after they were sent out. Because I hadn’t read anything about it on the website of my favorite local news station, I searched Google. I couldn’t find any reporting on it.
I know I am a wordy girl, sometimes a bit too much. But in that moment, every word I had was smashed by feelings complex, intermingled, and distinctly shaded with tones of grief. Hundreds of Arizona children in need of medically necessary assistive speech technology have been waiting and their families have been fighting for months. What I have been writing about for Tony isn’t just our struggle. The state agency many of us rely upon for services for our disabled or differently-abled loved one covertly adopted a policy that appears to break both state and federal law. And nobody was reporting on it.
And one thought crystallized for me: “Why isn’t there more reporting about this? Do our kiddos not matter to media audiences as much because they are non-verbal?” Today, I opened my latest e-mail from Raising Special Kids and saw that finally someone local had reported on this after the AHCCCS Administration Friday afternoon sent a notice to cure to DDD. The notice of cure directs DDD, among other things, to remove all AAC policy conditions that violate federal and state law, and in the meantime our families continue to wait for appropriate action to follow these directives.
I do know there are so many worries calling for our attention, a whirlwind of celebrity doings, deaths, political happenings, and corona virus. Maybe this story doesn’t impact you right now personally. But think for a moment what it would be like to be struck by a crippling medical surprise, such as a stroke or an accident causing traumatic brain injury. To have your ability to speak, to write, to communicate in any way you are familiar with taken away from you…but to retain your understanding. To still know what you want, what you need, what you like, and what you don’t like…and to be unable to tell anyone. How would you feel? How would you act? And, what kinds of supports would you want from health care, agencies, and loved ones? How would you feel to know that there are technologies available that could help you, but you might spend nearly a year fighting for them and end up needing to get an attorney to successfully make it through the process? Can you even afford an attorney for that kind of battle?
The ability to communicate seems to be taken for granted. And often people think individuals with certain conditions can’t really know what they want. When our little man was in a public developmental preschool, they used to take away his speech device because he kept asking for ice cream. The teacher of the class actually asked me once, “Does he even know what ice cream is?” I assured her he most certainly does, had in fact requested ice cream for breakfast just that morning, and when I told him no, climbed into the freezer, grabbed out the tub, and slammed it on the counter. Our little man, for all his lengthy list of conditions, is still a kiddo who definitely loves sweets. When it comes to things he wants, our son understands exactly what he’s asking for and will correct you on his current malfunctioning AAC device if you bring him the wrong thing.
Tony understands a lot more than most people realize. And maybe he doesn’t want to describe things or talk socially, but it definitely matters to him that he can tell us exactly what he wants and needs. And it matters to every one of these families also, many of who don’t even have as much as a currently malfunctioning AAC device to work with.
I spent the first part of last week filing grievances with the AHCCCS Administration, another grievance with DDD, and writing over six pages worth of an appeal that never should have had to be written. As I prepare for a potentially ongoing battle that may still require a lawsuit, I am asking each of you to close your eyes for a minute and imagine what it would be like to wake up a prisoner in your own body. Awake, alert, aware, understanding…and unable to ask for a single thing you need.
Some day, it could be any one of us who needs these services. These kids need each of us to care about what happens to them. If we don’t, who will care about us should their needs become ours?
The KJZZ story sounds so very similar to your own : (
Cookie cutter response, with no relation to the facts of the situation.
Exactly. It has been established as part of this ongoing situation that many families received “boilerplate” denials, denials that were identical or eerily similar to the one we received, and appeared to show a lack of review for any of the submitted documents. When you compare our denial to the documents that were submitted, it seems pretty clear the documents weren’t actually reviewed. My appeal consisted of a line by line commentary on where they could find the pieces of information on the documents that were submitted and that they already had on file. We also had members of our therapy team comment on how they felt Tony’s application would have been a very cut and dry approval process, as he clearly meets medical necessity, clearly has demonstrated that AAC has improved the functional limitations of his disability.