I took my child’s voice away today.
I packed it up, and sent it off in the mail.
Why would I do that? Because it’s part of the long process of acquiring an AAC device.
Ten months ago, J’s doctor suggested that he be assessed for an augmentative and alternative communication (AAC) device. He had just turned four years old, and didn’t have any functional words.
We were really excited! J had been successful using PECS (a picture binder) in therapy for quite a while, but we knew a talking device would help him communicate even better.
In order to decide which device and program was right for him, J needed an assessment. So the doctor ordered one through our area’s children’s hospital.
Two months later, J had the assessment. I was worried how he would do during the tests. He has trouble with motor planning, which is why we weren’t successful with sign language.
But he rocked it!!! As it turns out, every time he took my phone to watch YouTube, or navigated Netflix to watch his favorite show (Law and Order), he was preparing himself to use an AAC Device.
I was pleased to hear the therapists recommend Proloquo2Go (P2G) for J. I didn’t know much about all the different programs and apps, but I remembered hearing a teacher say that the school system used that one often.
The therapists handed me some paperwork, and told me that we would receive Julian’s rental device in the mail in about a month.
He would then need to complete a 3 month trial which included mandatory training from a speech therapist. That sounded sensible to me. I didn’t know how to use the program, so training would certainly be helpful.
FOUR MONTHS LATER…
It took four months of paperwork, prior authorizations, and out-of-network approvals for J to receive his rental. Yes… Just to get the rental. That’s four months of waisted time, in addition to the two months we wasted for his assessment. (That’s half a year so far, but who’s counting?)
When we received the AAC device, the company who supplied it gave us another surprise… We would have to return J’s device after the trial was finished and wait for insurance to approve a permanent one.
I immediately put that on the back burner. We had already invested so much time into this process, I felt like I could cross that bridge when I came to it. So we started his training.
P2G was a game changer! Within two weeks, J could navigate the most advanced setting on Proloquo2Go. He could find his preferred foods and tell us what he wanted.
Within one month, he was arguing with me about where he wanted to go! And yes, he found the McDonald’s button very quickly. (Thanks for that, P2G.)
After two months, he was identifying colors and shapes. He was now able to complete academic tasks closer to his own age level.
Can you imagine? In only a few short months, J’s whole world opened up. And we learned so much about him. I’ve heard many people say, “Presume competence.” Now I know what they meant. Julian has opinions, reasoning skills, and knowledge that he could never express until now!
But our time with the device was coming to and end. His trial was over, and it was time to send it back. Of course I asked to keep it until his permanent talker came in. But I was denied by several different people at the company. (The words “unethical practices” came out of my mouth several times.)
We are now 10 months into the process of getting J his AAC device. And I don’t know how long it will take to get approval. Luckily his school is letting him bring their device home with him.
But what if they didn’t? What if we weren’t so fortunate? What about all those other children who are being denied because AAC devices aren’t “medically necessary?”
The bigger picture… What’s the rush?
Most doctors won’t even suggest an assessment for an AAC device until a child is four years old. By that age, the child’s hearing has been checked, speech therapy has been unsuccessful multiple times, and the child is beyond frustrated.
This child has likely already been written off by everyone who cares for or teaches him. He may be treated as infantile or unintelligent, simply because he doesn’t communicate like the rest of us. By that, I mean that his educational goals may already be altered, or he is given less responsibilities because he doesn’t have the tools to display competence or understanding.
By four years old, this child’s frustrations have probably manifested into “maladaptive behaviors.” And why wouldn’t he act out? He has something to say and nobody can understand him!
So, that’s the rush. When a child is four years old, with limited or no speech, we should treat that as an urgent need.
We are living in a time of great technological advancement. Nonverbal children can speak with the press of a button… But only if they can gain access to an appropriate device.
When elementary schools are passing out laptops like candy, our children should not have to spend 6 months or more waiting for equipment that is necessary for them to perform the basic function of communication.
For parents starting to think about AAC Devices:
If I could get a do-over, I would ask around at different service providers about their process for acquiring an AAC device. There are universities that run AAC clinics. There are also grants out there that help parents acquire the devices.
If your child has Medicaid, you may be able to shorten the approval process by using EPSDT. Each state has their own procedures. Your child will probably still have to complete an assessment, which is sensible. But through EPSDT, the the Medicaid insurance company may supply your device without you having to jump through so many hoops.
Our device (which is an IPad with a great case and a bluetooth speaker) is listed for $7000! I’m not sure if that’s the price insurance is actually paying, but that seems excessive (to say the least). And that price tag is probably one of the reasons insurance doesn’t want to approve it.
Info about P2G for those who are interested:
Proloquo2Go is an app for an IPad, or another Apple device. It normally costs $300, but it goes on sale a couple times per year. The company has training and videos on their website, as well as Facebook groups to help parents get started. Their support team is ridiculously helpful.
Next week, I will write about our experience with P2G, and how it’s changed our lives for the better. Stay tuned!