VOICEOVER: Dani Marie Indovino Cawley on AAC, augmentative and alternative communication devices.
DANI INDOVINO CAWLEY: Hello. My name is Dani Indovino Cawley. And I’m a 41-year-old white woman with long, dark brown hair worn in a side ponytail, auburn-brown eyes, and bright red glasses. I’m wearing the V-neck dress with blue and white stripes. I’m a self-advocate and a disabled mom of two kids with disabilities, Mabel, who’s six, and Tony, who’s four. I’m here to talk about Augmentative and Alternative Communication devices, or AACs.
AACs are devices or tools that help someone to communicate. It can be as complex as a speech generator, or as simple as a laminated board with pictures. Many people with all different types of disabilities will need some form of AAC to communicate. In many ways, it’s to expressive language with a hearing aid is to receptive language. Both of my children had speech delays, but my son’s persisted a lot longer than my daughters, and eventually he was diagnosed with autism level 2.
The summer before preschool, he had less than 50 single words to communicate his needs. This led to meltdowns, tantrums, and an overall stressed out, frustrated kid. He couldn’t tell me what he needed, so I felt like I was failing at my most basic job as a mother, helping him feel safe and cared for. It was infuriating for both of us.
Over that summer, we used image flashcards to communicate with each other, but he had more to say than single images could offer him, so the frustration continued. His speech therapist suggested we try a computerized AAC device, often called a talker. It looks like a tablet and acts like an interactive picture board with more options and opportunities for complex language. My son could use a variety of noun, verb, and adjective options to create sentences that the device could then speak out loud. It could be his voice.
Finally, we could connect the way we both want it to. However, when the therapist put in the prescription, my insurance denied it outright. I appealed and they informed me that regardless of medical need, my policy precluded any coverage for AAC devices. It felt impossible. Why wouldn’t insurance cover a tool that could help my child talk, one of the most basic human needs. Why would they pay for years of speech therapy, but not the device that could help him actually progress?
I dug out my policy, and there it was under the list of exclusions, any augmentative and alternative communication devices. Through discussions with other families and providers, I’ve learned that AAC devices aren’t just for kids with autism, like my son, but are used by children and adults with cerebral palsy, with Parkinson’s disease, ALS, dementia, brain injury, stroke recovery, locked-in syndrome, apraxia, and more.
If a person has receptive language, or the ability to understand and use language, but not the physical ability to create it with their body, whether through speech or sign, an AAC could work for them. Yet they’re almost always excluded from private insurance policies. One family I spoke to said that even when they paid out of pocket for their children’s device, their insurance would not pay for the speech therapist to teach her child how to use it.
My speech therapist suggested we get our medical assistance, or a waiver, to fund the talker. And while we waited to get through the tougher process, Tony was finally able to tell me that he loved me, and has said it about 100 times a day since. We’re lucky that he’s been able to speak without a device, but every day someone in the state has a stroke, gets a TBI, receives an ALS diagnosis, or learns they’re autistic. They’re told there’s technology that can help them to communicate, but in order to access it, they either need to pay astronomical prices, or wait months to get disability benefits.
In Minnesota, we already recognize the importance of being able to communicate with those around you. Our legislature saw to it that if you have insurance, you have access to hearing aids. This should be no different. I ask you to support Bill SF 1101 and its upcoming House companion bill, to ensure that all Minnesotans health insurance plans, private or public, cover AAC devices and the therapy to use them, because everyone deserves the right to tell their mom, I love you. Thank you for your time.