Armed with prescriptions and diagnoses from pediatricians, speech therapists and other specialists, hundreds of families asked the state to provide a device that would give a voice to their developmentally disabled children.

After leaving those families in the dark for months, Arizona's welfare agency denied almost every request over a few weeks in February.

Now the Arizona Health Care Cost Containment System (AHCCCS), Arizona’s Medicaid agency, says the Division of Developmental Disabilities, a branch of the Arizona Department of Economic Security, violated state and federal guidelines when denying those requests.

Officials at DES acknowledged 314 outstanding requests for augmentative communication devices since July 1, 2019.

Katie Pierce

Three-year-old Greyson Pierce has good receptive communication skills. But he struggles with expressive communication, meaning his speech development lags far behind for his age.

Those devices, also known as speech-generating devices, provide individuals with poor expressive communication skills a way to speak.

A touch screen shows a grid with pictures of everyday items or activities. When an image is pressed, the device will sound out the word.

A speech-generating device is often a last resort for parents like Katie Pierce.

Her 3-year-old son, Greyson, was born with a rare genetic disorder — a brain malformation that’s left the left side of his body with low muscle tone. Greyson still undergoes speech therapy, has tried to learn sign language and explored other avenues to learn how to speak.

But at the time he was being evaluated for a speech-generating device on July 1, the only words Greyson could say were “mom,” “ball,” “bar,” “bird” and “more.”

Pierce said Greyson’s speech has regressed since then.

“He can say ‘Ma.’ That's as much of a word that he can do,” Pierce said. “He can do things that make that lip. So he can do that, but he can't follow through. He can't articulate. So usually he just screams a lot.”

Greyson has excellent receptive communication skills, meaning he understands what people say to him. When working with a speech therapist, he easily identifies objects and pictures in a specialized activity book.

But as he grows older, his speech isn’t developing. He resorts to violent outbursts – fits of screaming and rage – when he can’t talk with his family.

“He’s stronger,” Pierce said. “He’s becoming more aware. He wants to be like a typical 3-year-old who can talk, and he wants to be like his brother. And we're surrounded with everyone else who’s typical developing kids, and he’s just mad or seems frustrated because he can’t give his all.”

Katie Pierce

Kaiden Pierce, 5, kisses his younger brother, 3-year-old Greyson Pierce. Greyson has a developmental disability and can't talk to his brother.

But at the same time Pierce and medical providers submitted Greyson’s evaluation to the state, officials at the Division of Developmental Disabilities stopped processing those requests.

Pierce wouldn’t hear back from the agency for eight months.

On Feb. 18, she finally got a response. Greyson’s request was denied.

Anne Ronan, an attorney with the Arizona Center for Law in the Public Interest, said Greyson’s denial was one of at least 301 denials mailed to individuals in February.

The letters Ronan has personally reviewed are eerily similar.

“The reasons given in the official denial notice are all exactly the same,” Ronan said. “They're sort of a boilerplate: ‘you didn't provide us with sufficient,’ for instance, ‘you didn't provide us with sufficient medical documentation of a diagnosis of autism’ or ‘you didn't provide us with sufficient documentation of a diagnosis of a receptive and expressive speech delay.’”

That’s not what the division promised to do. 

An email from the division, obtained by Ronan, states that each individual awaiting the state’s decision would receive a “written letter that will include specific and individualized information relevant to the needs and specific services requested for each member.”

Cynthia Macluskie and Anne Ronan

Email excerpt from the Division of Developmental Disabilities.

Instead, the letters include “four or five standard, canned notices of the basis for the denial,” Ronan said. 

A sampling of anonymous denials reviewed by KJZZ shows entire paragraphs used identically in multiple letters.

Greyson’s denial included those cookie-cutter responses.

Katie Pierce

Excerpt from Greyson Pierce's denial letter.

Pierce said it was a heartbreaking response after nearly eight months of reaching out to the division, filing grievances and having her complaints brushed aside.

The wait came after Pierce was told her son was a shoo-in to receive a speech-generating device. 

Advanced Therapy Solutions, the medical provider contracted by the state to evaluate developmentally disabled kids like Greyson, told Pierce in July the division typically responds in 30 to 90 days.

At the time, and for months later, no one – not parents, medical providers, or doctors – knew the state had stopped processing requests.

Behind the scenes, Ronan said the Division of Developmental Disabilities was revamping the requirements it uses to evaluate requests for speech-generating devices. Ronan said it’s that new, flawed policy that is being used as rationale to deny the devices.

“Agencies have some discretion to implement processes, to implement their, you know, their eligibility criteria. But this is a change in the eligibility criteria. It specifically denies specific types of devices, and it creates requirements for authorization that are new and different and affect eligibility,” Ronan said.

Ronan said the division violated state laws by drafting those requirements in secret.

“The policies and procedures that they are now using have not been published. They have not been set out in the public for the public to view and comment on. And they are being used to actually deny a service,” she said.

Cynthia Macluskie, vice president of the Autism Society of Greater Phoenix, said it appeared some of the new requirements cite Medicare policy and guidelines, and in doing so, violate a standard in Medicaid law called EPSDT – early periodic screening, diagnosis and treatment. 

The policy is designed broadly to ensure that children have access to services that are deemed medically necessary, Macluskie said.

Instead, the state created blanket exclusions used to deny speech-generating devices.

“Given what EPSDT requires, they should be providing that to families who have that need. And I know that they know that,” Macluskie said. “So to use language in Medicare to deny what they should be giving according to Medicaid and according to EPSDT is, to me, it looks malicious.”

It’d be difficult to parse any of that in the denial letters sent to parents like Pierce, who was floored when Greyson’s denial stated there were “no medical and clinical documents” to support his diagnosis of severe expressive language disorder.

Parents like Pierce have an opportunity to appeal the denials, but she doesn’t know where to start.

“What are we missing?” she said. “You know, it doesn’t really tell us exactly, besides ‘we don’t have a clinical assessment.’ Well, I gave them that. I gave them every single thing, and we made sure of that, because our support coordinator at the time made sure we had everything.”

"You know, it doesn’t really tell us exactly, besides ‘we don’t have a clinical assessment.’ Well, I gave them that. I gave them every single thing, and we made sure of that.”
— Katie Pierce

At the end of 2019, Ronan said  the scope of the problem gradually came into focus for parents, doctors and the medical providers that conduct evaluations to determine if a speech generating device is medically necessary.

After she was contacted by families in similar situations, Ronan sent a demand letter to the Department of Economic Security and AHCCCS on Jan. 16. It outlined her concerns that families were left in the dark for months, and that the state had begun to deny devices in violation of federal Medicaid law, Arizona laws and regulations, and the Arizona Administrative Procedures Act.

She sent another letter just to AHCCCS on Feb. 26 after a joint response from DES Interim Director Cara Christ and AHCCCS Director Jami Synder failed to address her concerns.

The demand letter threatened to sue the state Medicaid agency unless they stopped “denying devices based on policies or practices that violate Medicaid requirements.”

Bret Jaspers/KJZZ

Dr. Cara Christ

Christ declined a request for an interview. The agency provided KJZZ with a written response that repeatedly denied that any policy was rewritten.

DES officials described the 8-month wait for kids like Greyson as a “temporary pause” in processing requests.

“We want to make sure that everyone has access to these devices when they are medically necessary, but we need to ensure our policy is followed and that decisions are consistent for all our members,” officials wrote. “... We are only ensuring existing policy is followed.”

In its regulatory role to ensure the division is following the law, AHCCCS disagrees.

In response to Ronan, AHCCCS sent a letter to the Division of Developmental Disabilities stating the division failed to comply with federal and state requirements for authorizing speech-generating devices.

The “notice to cure,” sent by AHCCCS Chief Procurement Officer Meggan LaPorte, sets deadlines for the division to revise policies that violate Medicaid regulations, including criteria that “are not consistent with the EPSDT standards.”

It includes orders to delete blanket exclusions used to deny devices.

And it orders the agency to “immediately cease using Medicare coverage standards” to determine if speech-generating devices should be approved or denied.

Anne Ronan

Demand letter sent by the Arizona Center for Law in the Public Interest.

LaPorte chastised the division for failing to issue “timely and accurate” responses and for “providing members with no reasonable or reliable mechanism” to appeal their denials.

“In general, notices should contain information that is specific to the unique circumstances of each request,” LaPorte wrote.

AHCCCS ordered the agency to re-evaluate all requests since Aug. 1 that were denied. Going forward, the division must submit weekly reports to AHCCCS so the Medicaid agency can track their progress.

Ronan is cautiously optimistic about AHCCCS’s response. For now, she’s holding off filing a lawsuit.

“We need to get a better feeling of what’s going to happen,” Ronan said.

Meanwhile, kids like Greyson still can’t talk. 

Pierce vowed to appeal his denial, but she has no faith the state will provide Greyson the help he needs.

“If you obviously see Greyson or hear Greyson and interact with him, you would know he could benefit so much from that and it can change people's lives,” Pierce said of the device. “And that's what I thought that (the Division of Developmental Disabilities) is supposed to be about; it’s supposed to change and help empower families. But it's not. It's actually taking that power from us and holding us captive in a sense. We can't flourish. I feel like we are in jail because Greyson can't talk.”