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Tucson 11-year-old finally got her communication device — but still can't use it

Tucson 11-year-old finally got her communication device — but still can't use it

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Adiba Nelson watches as her daughter, Emory Webster, 11, uses her language device to communicate at their home. It took the Arizona Division of Developmental Disabilities more than a year to provide the device to Emory and now Adiba is waiting on parts to mount the device onto Emory’s wheelchair so she can use it without assistance.

Read the plain language version of this story here

Emory Webster cried tears of joy when her new communication device arrived last November. After waiting for 18 months, she was eager to use the “talker” with her friends at middle school.

But another six months later, she’s still waiting to use it.

At 11, Emory has newly purple hair, an equally colorful attitude — and cerebral palsy. Her mom, Adiba Nelson, can understand most everything Emory’s saying. It’s harder for others who have not spent as much time with her, like classmates and teachers.

Emory can’t use her new device much because it didn’t arrive with equipment to mount it to her wheelchair. Adiba has a paper trail of email and text exchanges with state bureaucrats and care providers documenting her frustration and their inaction over the last several months.

“Augmentative and Alternative Communication” equipment, as it’s called, is nothing you can pick up at the hardware store or even order online yourself. Her particular device has been customized for Emory, and the materials necessary to allow her to use it independently are also supposed to be ordered by the state’s Division of Developmental Disabilities (DDD).

According to interviews as well as emails Adiba provided to the Star, the insurance company and the state have been tossing the responsibility back and forth.

United HealthCare did not respond to a request for comment. DDD would not comment on a specific case.

"I'm beyond annoyed that they're trying to play chicken with my child,” Adiba said in late April. "I'm done. I'm done. I'm done.”

Adiba and Emory were already frustrated when they spoke with the Star last summer. Along with hundreds of other people served by DDD, Emory had waited more than a year for a new device. The old one was so outdated it sparked and smoked when Adiba turned it on.

The day after the Star and the ProPublica Local Reporting Network reported in November that Emory had not received her device, a DDD employee called to say it was ready, Adiba said. They had it in hand by the end of the week.

For the most part, advocates report, the challenges of getting devices to the people who need them have been resolved. The state’s Medicaid agency, the Arizona Health Care Cost Containment System, slapped DDD on the wrist last year and shifted responsibility for evaluations, equipment and training from DDD to insurance providers. But there are still outstanding issues, advocates said.

“The backlog and all of the folks that were in the middle of this mess, those seem to have been resolved best we can tell. There are still families with these complicated issues struggling with getting the right equipment,” said Anne Ronan, an attorney with the Arizona Center for Law in the Public Interest. Ronan estimates that thousands of people were impacted by blanket denials and long waiting times.

In a general statement, DDD spokesman Brett Bezios acknowledged that while insurance providers are now handling talkers, DDD is still responsible for referrals that pre-date January 2021. And DDD employees, like support coordinators, are still responsible for assisting members and guardians with making sure they get the right materials.

“Upon delivery of the device the member’s support coordinator, together with the member/member representative, reviews the accuracy of the equipment received. If an item is missing from the shipment, a notification is sent to the AAC device system manufacturer/supplier to fulfill any missing equipment,” Bezios wrote.

“I put all of the blame on this on DDD,” said Anthon McLaws, an occupational therapist and owner of Therapy One, an agency that offers therapies and other services, adding, “with necessary medical equipment, you don’t wait 18 months.”

The parts for the wheelchair mount were not ordered, McLaws said, because the state had already paid for a mount for her previous talker, which fit onto an old wheelchair. That wheelchair is long gone, and those materials likely would not have been compatible with Emory’s new chair, McLaws said.

In any case, Emory needs a new wheelchair mount, and McLaws said he has been trying to get it for her. The equipment needs to be installed and adjusted by an occupational therapist like him, to make sure Emory can access it and it doesn’t get in the way of other activities. The device has already been programmed by a speech therapist who provides training on how to use it.

Nothing about the process is simple — even when everything goes smoothly.

There’s skepticism among DDD employees as to whether “talkers” are necessary, McLaws said.

This spring, he said, a DDD support coordinator told McLaws, “You and I both know most of these kids just use their devices to play games and watch YouTube.”

Emory demonstrated how she uses the talker last year at a virtual event co-sponsored by the Arizona Daily Star and ProPublica. You can see her use it in the video.

On a recent weeknight evening, Emory was finishing a fast food dinner during an interview. It had been a “chicken nuggets, ketchup, fries, juice kinda day,” Adiba said. Everyone in the house was tired and Emory wasn’t feeling very chatty.

“We use it when she’s mad at me. Fair enough,” Adiba said of the talker, laughing. In so many ways, Emory is a typical tween.

And Adiba insists she is a typical parent. She wants her kid to be able to learn, thrive — and chat with her friends.

"You as a parent would never not let your child have access to communication for two years."

On April 23, McLaws emailed Adiba to say that DDD had agreed to pay for the equipment and he was initiating the order.

Even if the order does go through, Adiba said, it’s unlikely the talker will be mounted on Emory’s wheelchair before the end of the school year.

Contact reporter Amy Silverman at amy_silverman@yahoo.com


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