Earlier this week I submitted comments to the Division of Developmental Disabilities as part of a legally mandated public comment period for proposed changes to the policy that governs prior authorization for assistive speech device technology, or AAC. For a while now my posting schedule has been every Friday, however I felt like for those of you who are local and who could be considered a potentially concerned party when it comes to these changes, I felt like a reminder may be beneficial that the deadline for closing comment submissions on these proposed changes is two days away. And you also have my commitment to not write anything else this Friday to compensate for this extra chunk of reading, but instead to return with my next post the Friday after.

I also believe it is important for me to share with each of you my impression that some of the changes proposed could potentially increase costs to tax payers as well as increasing the number of barriers in addition to the amount of time needed for developmentally disabled individuals to navigate the prior authorization process and obtain a speech device. I also personally have additional concerns that some of the language and proposed changes could be considered discriminatory.

The proposed policy changes can be found here under the “policies open for public comment” tab, and there is also a comments submission tab for those who are interested.

https://des.az.gov/services/disabilities/developmental-disabilities/policies-and-rules

Below I have shared the thoughts and comments I submitted. The Division has stated that they prefer comments be submitted directly to them, and while I have done so, I am also choosing to make them more public because I believe it is important for each of you to know about this process and what is going on with it. I encourage any concerned party to read the proposed policy and present your own thoughts to the Division, which of course may be entirely different from mine.

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My name is Ariana and I am the mom of a beautiful non-verbal boy that we adopted from foster care who presents with multiple developmental disabilities and has used AAC technology as his primary form of communication since he was 3. His current list of conditions includes FASD, Sotos Syndrome, Trisomy 5Q, Level 3 Autism, ADHD, Mixed Receptive-Expressive Language Disorder, Sensory Modulation Disorder, and Intellectual Disability. I am commenting on suggested changes to the AAC prior authorization process and proposed changes to who administers these benefits.

Before I make my comments I would like you to imagine for a moment that you are a prisoner to deficits in the ability to control your own muscles that prevent you from talking. You know what you want, you understand what you want, but you can’t write it. You can’t say it. You don’t have enough control over your muscles to use sign language. And because of this, everyone treats you like you don’t understand anything. But you do.

How would you feel? How would you act? I imagine you might act like our son, who spent most of every day prior to the introduction of the use of PECS screaming, throwing tantrums, and trying to self-harm. Just the ability to show us a picture of what he wanted changed our son’s behavior overnight, and the introduction of the AAC device expanded his ability to communicate with us and others has done so even more.

My primary concern- regardless of who is overseeing the authorization process- is the length of time it can take to navigate this process. When our son’s first AAC device began to malfunction after nearly four years of use, we submitted an application for prior authorization for a new AAC evaluation. This was done on May 16, 2019. We finally received the device on June 26, 2020 after an unnecessarily arduous process that included filing multiple appeals, grievances, and the ultimate involvement of both the Arizona Center for Disability Law and the Arizona Center for Law in the Public Interest. Please note, our family’s primary insurance actually paid for most of the cost of this new device (4/5’s of the cost), with DDD paying the remaining 1/5. All of that was capped off by receiving a letter from DDD after the device was ordered (but before it was shipped) stating that they were going to take an extra couple of weeks to review whether or not they were going to pay, and that this review was in our son’s best interest. Unfortunately I must emphatically disagree- very little of what we experienced in that process was in his best interest.

I am going to review my additional concerns line by line, but I am going to preface those remarks by stating that I feel certain pieces of the proposed policy will create additional delays in providing access to AAC technology to those who need it most, which delays would result in reduced abilities to communicate and decreased progress, and that some of the requirements may have a disproportionately negative impact on individuals with more severe forms of Autism or whose disabilities come with more severe sensory symptoms.

I note that starting in line 155 the policy begins discussing medical records and document submission requirements for AAC authorization packets. During our application process, I made multiple re-submissions of documents that the Division had already been provided previously at the request of the Division as part of the application process. I believe that years of progress notes and other documents already on file with the Division and ALTCS should not be required from the family as part of the application process.

In some of the denial verbiage we received, we were told that sufficient documentation for medical necessity didn’t exist for our son. I am intimately aware of all of the documentation that exists for our son, and I assure you that it is painfully copious and sufficiently specific to stand up in court. Families of loved ones with disabilities should be able to expect that Division employees or other utilization review specialists who are reviewing these documents have sufficient understanding of what meets the legal standard for medical necessity when they are reviewing these documents, but I myself unfortunately am not sure based on my own experience that these documents are always being reviewed by an individual with the appropriate level of training and understanding.

When timeliness standards are discussed starting at line 169, I believe that an application and approval process that stretches more than a year should not be considered timely. I believe that three to four months from the application filing to the device being ordered for a new device application process is better suited to meeting the needs of individuals dependent on AAC technology for their communication needs.

In line 223 when discussing medical necessity, I feel that this definition needs to make clear that the medicaid standard for providing these services recognizes the benefit in doing so for improving the functional limitations of a disability. AAC may not be considered “necessary to treat” on a subjective level to some for anyone non-verbal as it is stated in this proposed policy revision. However, the improved quality of life, improved functional outcomes, improved ability to communicate, improved behavior, and improved independence definitely should be considered “reasonable,” beneficial, and efficacious in improving the outcomes for those with medically confirmed deficits of spoken or written communication that can be improved with the use of AAC.

For the equipment that can be covered as part of an AAC authorization starting at line 231, I note that protective cases are not listed. Protective cases are relatively cheap (compared to a repair or replacement) but can dramatically extend the life of a device by protecting them during unplanned falls or other such accidents. I believe it is imperative to add this as a benefit as it is cheaper to the Division and ALTCS than frequent repairs to an uncased and unprotected AAC device. I also note that many devices automatically update using Wi-Fi, and that approval of Wi-Fi enabled devices is necessary as it is the standard in that field currently because it is the standard for current technologies.

I believe that requiring an additional comprehensive speech evaluation is a waste of Division, ALTCS, and tax payer money as proposed starting in line 270. For our son, he had a comprehensive evaluation less than a year before his most recent AAC application was submitted. As part of the initial denial, the Division requested yet another comprehensive evaluation before considering approval. When an initial evaluation has been done, in combination with ongoing progress notes submitted by the acting speech therapist, additional evaluations simply add unnecessary costs and delays to this process.

In regards to demonstrating the viability of using AAC technology with a three month trial of over three devices, which is referenced starting at line 289 and then again at multiple points throughout the proposed policy change, I believe that this recommendation is redundant, costly, and imposes unnecessary delays in providing permanent access to communication for individuals that benefit from AAC technology. Part of the current AAC evaluation and recommendation process is that the AAC evaluator brings out multiple devices and software options to try with the individual at the time of evaluation. The observations and recommendations of that evaluator should be sufficient. I also note that when a data-driven AAC device system is stated as being required in this proposed policy, there is no corresponding explanation of who is supposed to be taking the data or what type of data is required or considered acceptable.

I must note that throughout our son’s life, and throughout the recent application process, I have been asked by many people outside of his therapy team based strictly on the list of conditions our son has if he actually functionally uses his device. In fact, I had started taking videos of him doing just that in preparation for meeting the Division in a court of law over the most recent AAC application process. I was almost disappointed I didn’t have the opportunity to play those in front of a judge by the time we actually received our son’s device, to be quite honest, because it is that gratifying to watch people react to what he can actually do in comparison to what their assumptions are. The determination of viability for AAC should be entrusted to the speech providers who have actually been working with the individuals and not utilization review specialists who may not be reading all of the necessary progress notes but may be making snap judgment about what they think is viable based on a diagnosis or a whole list of them.

I also note that the cost of maintaining loner devices in a quantity sufficient to meet the needs for running trials for all individuals in a timely manner who may be applying for AAC within the state would be unnecessary and prohibitive for the Division. And, the process of getting them, using them, and documenting them could take several months, which adds a further unnecessary delay in the receipt of these services. I also note that for many individuals with communication disorders significant enough to require AAC, learning multiple systems in such a relatively short period of time, which would be required for this kind of thirty day multiple device trial, is contraindicated by my understanding of what best practice is currently for speech therapy for these individuals. I also believe it would be unnecessarily confusing for these developmentally disabled individuals, which could ultimately result in reduced communication or communication rejection for a period of time.

I also note that I think it is imperative to allow for the submission of an AAC evaluation based on the evaluators observing competence using PECS communication. When our son was first evaluated at age three, he was so scared of the evaluators that he screamed and hid any time they approached him. He also was afraid to touch new things. They ended up watching him use his PECS book that I had made for him while he and I were sitting in the kitchen and they were observing over the counter where he couldn’t see them. Based on this, they picked some TouchChat vocabularies to try with him and gave me the device to work with him in a like manner while they observed unseen by him.

When we got that first AAC device at age 3, my son learned how to ask for all of his favorite foods independently after one day instruction from me. One. But he never would have had the chance if he was required to interact directly with AAC evaluators he was terrified of because they were strangers to him and demonstrate proficiency on a new device he was scared of touching for nearly two hours.

I would also like to note that I object to the phrasing of “unaided forms (natural modes) of communication” as it appears in lines 268-269. For items that our son wants to communicate about on his AAC, such as his requests for items he wants, that isn’t “aided” in a manner that renders his communication less valid or spontaneous. Yes, our son uses a device to express those wants, but it’s kind of like me saying when I communicate using speech I’m aided by my mouth and vocal cords or I’m aided by my hands if I use ASL. Technically, all forms of communication are aided by something, many of us are just blessed to have a fully functioning body that does so. But if something happens to my vocal chords, I wouldn’t be able to speak but I could still produce spontaneous thought and therefore spontaneous communications via other means.

As relates to lines 368-371, often a family and their practitioners/providers may be unable to anticipate projected changes to a member’s communication abilities that are three years in advance. Nobody has found a crystal ball of that kind that works, and if they did, we wouldn’t have had to get two rounds of genetic testing for our son, who was diagnosed with five of his current diagnoses after his initial AAC evaluation. For many of the developmentally disabled, they and their families are on an ongoing journey of discovery and this requirement is not really possible for anyone to guarantee a projection on- especially if something unforeseen happens like a brain tumor or onset of seizures.

I find the verbiage in lines 435-440 to be concerning as regards to the statement that the AAC must “improve or maintain the member’s health in the best condition possible, compensate for a health problem, prevent it from worsening, or prevent the development of additional health problems…” Please be advised that my son currently is healthy in the sense that his physical body doesn’t have a condition we would associate with chronic or acute illness in the medical community, and AAC technology isn’t specifically designated as a treatment for that kind of health-related concern outside of allowing an individual to tell someone when they have an earache, etc. AAC improves the functional limits of many developmental disabilities and communication-related disorders by allowing them to communicate more and more accurately, and as such may provide mental health benefits (which are often hard to measure outside of observed behaviors) and may certainly result in an improved quality of life for disabled individuals and their family members. However, the inclusion of the proposed language is a red-flag to me as a parent that this policy could be used to create a standard for authorization that is not consistent with Federal Medicaid laws governing the approval and use of AAC technology.

In regards to prior-authorization for AAC repairs, with line 457, why is justification of medical necessity required here when it was already required to receive the original AAC device in the first place? This creates unnecessary steps for documentation and is an area of potential delays in care and receipt of services. And for lines 471-472, I am not sure why it is necessary to detail what measures are being taken to prevent recurrences of device damage. Accidents that damage a device are by nature unforeseen. Even the most cautious of parents and providers can not prevent all possible events that could damage an AAC device. I think such verbiage could be a requirement if more than one repair per year were needed, but otherwise this seems like an unnecessary step for everyone involved.

I note that starting in lines 480, the amount of hours being proposed for AAC device training is going to be reduced from 12 to 4. I feel like this reduction is not in the best interest of most families and the developmentally disabled end users of these devices, who may continue to benefit from the original (and current) policy provision of 12 hours of training and device customization assistance.

In regards to lines 499-501, why is it necessary here for the device trainer or SLP to document that the member can use the device safely, etc when that is already required to be established during an AAC evaluation itself as part of the application process? Further, if the proposed device trial is implemented as proposed (and I again state that we feel this proposed multiple device trial is problematic on multiple levels) this step is again unnecessary and redundant.

I am also concerned about the use of the phrase “might justify the need for an AAC system” in lines 543-546. If a member has demonstrated the existence of medical conditions and diagnoses that present with limited verbal communication, please note that federal law currently asserts and supports that AAC technology is beneficial and therefore justified for these individuals as it increases their ability to communicate with others.

In regards to lines 595-597, I would like to note that for most individuals, sticking to a PECS only book limits their access to communication by limiting the amount of words they can effectively use. The size of a book that could contain the amount of vocab equivalent to AAC software would be prohibitive to use and maintain, and extremely cumbersome to use. Imagine that you had to hunt for a picture for every word in the dictionary, and that you had to have a book that could contain a picture for all of those words. That’s not very practical for most people, even non-verbal individuals. I know some people look at my son and think his communication needs are simple because he only wants to talk right now about what he wants. But let me assure you, he wants a whole lot of things and he’s quite specific about them. I am also concerned about the vagueness in regards to what kind of documentation is acceptable. At the time of our recent application, we were told that there wasn’t sufficient documentation that other methods of communication had been tried for Tony, and yet years of progress notes existed, many of which detailed that he doesn’t have the motor planning for sign language and that PECS had already been tried and his communication needs had surpassed that system.

I wonder what is exactly meant by “a description of the member’s cognitive readiness” in line 603? Many people think our son shouldn’t be ready to do anything cognitively, and yet he can do a whole lot more than people assume based on looking at his list of diagnoses. I feel like his is a requirement that is based on a subjective set of opinions and could be used to arbitrarily discriminate.

I strongly object to the proposed provisions in lines 611-612 regarding behaviors and aggression. Plenty of verbal adults and children are aggressive, and nobody denies them access to communication because of that. I feel like this is discriminatory language, and as a parent of a kiddo who actually isn’t aggressive I’m outraged that this was even included. Our son has plenty of behaviors such as self-harming and throwing things away from others when he’s angry, but please note I watch him carefully with his devices because of that and his first AAC device lasted nearly five years before it died. Our typically functioning daughter at a similar age fried her kindle by dropping it into a bathtub after having it only a few months. Behaviors and disabilities don’t mean that device destruction is eminent, and I don’t think they should be used to exclude certain groups within the developmentally disabled community. Our son actually has fewer behaviors because he has an AAC device to communicate with because it allows him to communicate quicker and easier than PECS.

I fail to see why the communication partners is a relevant matter as listed in lines 633-636. Our son has always communicated more when strangers or people he was less familiar with weren’t around. Which is why I started taking videos for a possible lawsuit. For many Autistic individuals this is always going to be the case. Once he has known a therapist for several months, he will talk more with them and around them, but that relationship takes longer to establish than an AAC evaluation can provide.

And, again, in regards to lines 637-640, most families start with PECS before their speech therapist recommends AAC. If an individual can intentionally communicate using PECS, they can intentionally communicate using AAC, though it may take a bit of a learning curve to master use of the new device. I feel like this step is unnecessary in light of the fact that current AAC evaluations are supposed to assess for the ability to use the device intentionally and an individual who has demonstrated the ability to functionally use PECS can also learn to functionally use AAC. I feel like this requirement may impose an unnecessary barrier to children who struggle to learn new systems effectively in either a two hour AAC evaluation or the proposed 30 day trial period (and again I do not support that trial period), but who may still none-the-less be able to learn them over a slightly longer period of time and then use AAC successfully over the course of a lifetime.

And I think that’s actually everything. I know my thoughts on this policy were nearly as long as the proposed policy and I thank you for taking the time to sift through them. I wish you health, safety, and a fabulous day!

Sincerely, Ariana