TUCSON (KVOA) - It’s been more than a year-long wait for some families to receive crucial devices to help their children with disabilities, who are non-verbal, be able to communicate.
Imagine for a moment, feeling trapped inside your body and wanting to talk about life, your dreams and desires, or the weather but no matter how hard you try you just can’t. You’re without a voice.
That’s the life of Cooper, just three years old. When he was eight months old his mother Lexie Hernandez says he suffered an unknown medical condition that did damage to his spinal cord.
“This makes him a functional quadriplegic so he has movement he has a lot of limitations though and for some reason won’t speak,” Lexie said.
Without having an idea what his condition really is, no medical code to give him, Lexie says getting her son crucial things like something as simple as a wheelchair hasn’t been easy.
"It took us a year to get a wheelchair because of it,” Lexie explained.
But Lexie never imagined the drama of trying to get him what’s known as an Augmentative Communication Device to help him communicate non-verbally.
“All sorts of craziness right from the get go,” Lexie said.
In October 2019 Lexie sent an application for the device to the state’s Division of Developmental Disabilities, which is under the Department of Economic Security or DES, then time ticked on and on.
“I didn’t hear anything or get a notice of denial for months, I had to keep asking,” Lexie said.
Little did she know she was part of a much larger ordeal, for all that time the DDD was holding on to more than 300 applications for Aug Comm devices, never notifying families of approval or denial.
“At some point, they just stopped processing requests for Augmentative Communication Devices they just held them,” said Anne Ronan an attorney with the Arizona Center for Law in the Public Interest.
Ronan represents several families trying to get answers. In February she made a complaint to the Arizona Health Care Cost Containment System (AHCCCS), the state’s Medicaid agency, then things got worse.
“The DDD then issued upwards of 300 denials,” Ronan said.
Cooper included. The AHCCCS investigated and found the DDD violated state and federal laws. By May it pulled the oversight of Aug Comm applications from the DDD handing it to an independent organization but still, the DDD handles getting the devices to the families and all these months later parents like Lexie and Cate Gaylon wait for answers.
Cate Gaylon, who lives in Tucson, said her daughter is also non-verbal.
“My daughter has Rhett syndrome so she’s non-verbal and has no use of her hands,” Cate explained.
Cate’s daughter Dre previously had an Aug Comm Device but she said it broke at school, she applied for another one only to be left in limbo with all the others. Cate said she’s seeing her daughter’s progress deteriorate.
“You get behavior issues, you get depression. Can you imagine being locked inside your body and not being able to tell anyone what’s going on with you,” Cate said through tears.
The News 4 Tucson Investigators reached out to the DDD for comment and received a statement saying in part it “is regularly communicating with members and families to provide updates on the status of their requests.” And is developing “clear recommendations to guide clinical practice and coverage for Aug Comm services and equipment.”
Lexie says she hasn’t heard from them and has never received an apology from the DDD but says anything now is too little too late.
“It’s 100 percent not enough, and it never will be there are developmental milestones that kids need and a lot of them probably missed a lot of that already,” Lexie said.
The DDD said on January 1st it’s transitioning all management of the Aug Comm devices to its subcontracted Health Plans. That’s still part of the DDD but Ann Ronan says she’s hopeful that could help speed things up but Lexie isn’t very optimistic anything will get better.
View the DDD’s full statement to News 4 Tucson below:
The DES Division of Developmental Disabilities (DDD) has dedicated a considerable amount of resources and attention to resolving outstanding requests for the Augmentative & Alternative Communication (AAC) program. Our team is regularly communicating with members and families to provide updates on the status of their requests. There are many factors that play a role in decisions, and those decisions must meet the statutory criteria of being both "medically necessary" and "cost effective." For example, sometimes there might be agreement that an individual needs a device, but a request for a specific type of device might not be approved. In that case, we would work with the member to find a solution that meets their needs within the program's legal requirements. We have established a proactive outreach process to assist members and their families in understanding the current status of their requests for service or devices, and we are creating a streamlined approach to assist members in completing any necessary clinical steps. DDD is also in the process of ensuring the establishment of applicable and clear recommendations to guide clinical practice and coverage for AAC services and equipment.
On January 1, 2021, DDD will transition the management of the AAC benefit to the sub-contracted DDD Health Plans, which currently manage all other Durable Medical Equipment benefits for DDD members. This will leverage their experience as well as their ability to access a broader network of providers and resources for members. DDD will continue to be involved in oversight of the DDD Health Plans to ensure members are receiving high-quality services in a timely manner.”
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