Changes to developmental disabilities assessment mean AZ families will lose caregiving funds

Lauren Larsen’s 4-year-old likes numbers. He can multiply by six all the way up to 120, which he demonstrates with gusto.

But he also struggles to communicate. His parents say it’s like he has his own language. On a recent Friday evening Zoom call with two reporters, the tiny blonde boy waved hello and announced loud and clear that he wasn’t ready to go to bed — but he also babbled in bursts.

He was diagnosed with autism in 2023, at age 2.

(The Larsens asked that their son’s first name not be used in this story to protect his privacy.)

At 2, the boy started to self-injure.

“Headbanging, biting, pinching, kicking, throwing … very frustrated a lot of the time,” Lauren recalled. “He was so upset one morning just trying to get out the door to get into the car that he put his head through his bedroom door.”

The Larsens applied for services through the Arizona Long Term Care System, part of the state’s Medicaid program, the Arizona Health Care Cost Containment System, or AHCCCS.

After being denied three times, their son qualified for services earlier this year. He was then eligible for everything from health insurance to speech therapy to skilled caregiving, referred to as habilitation and attendant care. Services are provided by the state’s Division of Developmental Disabilities, housed within the Department of Economic Security.

“When the assessments were all said and done, he qualified for 56 habilitation hours, 12 attendant care hours, so a total of 68 hours there a week,” Lauren says.

That was in June. In mid-September, the Larsens received an email about changes to the state’s assessment tool and news that their son would need to be reassessed to determine his eligibility for services. But what that actually meant for their family was unclear. So Lauren did some digging.

“I'm part of a Facebook group that is a DDD and ALTCS support group. And one of the moderators in there was able to get the new assessment tool,” she says. “And then just looking through more recent emails that DDD has been sending with links to different policies — like, I've been reading the policies and looking at things like that.”

Although the state originally told Larsen that her son qualified for 68 hours of skilled care each week, she learned that number could be reduced dramatically — possibly to five hours a week. This is because the new assessment tool will make it harder in some cases to qualify.

The Larsens’ son is physically agile like many 4-year-olds. But he runs from his parents in public and engages with strangers. It’s increasingly difficult to manage his behavior. He’s also nowhere close to being potty trained.

The new assessment tool focuses on physical abilities, the boy’s strength — as opposed to expressive communication or controlling behavior. And under the new tool, DDD won’t assess potty training until the boy turns six.

“If he can't go to public kindergarten without being potty trained,” his mom asks, “then why is it he's not assessed? He's not even looked at until age 6 here.”

The Larsens are not alone. Families all over the state could be impacted by changes in the DDD assessment tool set to begin Oct. 1.

Each DDD member is required to have quarterly meetings with a DDD support coordinator who checks in on the member’s welfare and checks to see if the proper services are being provided. Starting this month, each member under 18 will be reassessed — and their services likely altered.

This is in large part due to an explosion in costs.

According to DDD, Arizona spent $77 million on attendant care and habilitation services for members under 18 in 2019. Now, it spends $614 million on those services. Spending more than doubled in the last fiscal year alone.

At a public forum in late September, Zane Garcia Ramadan, assistant director of the Division of Developmental Disabilities, told stakeholders that the cost is unsustainable.

“There is not endless money to fund DDD at these growth rates and especially with the changes coming to Medicaid in the years ahead, it raises further questions of funding availability in future years,” he said.

One reason for the increase in costs is a paid parent provider program first introduced by the federal government during the pandemic. For a long time, families have been allowed to provide care for adult DDD members. This was the first time parents of minors under 18 could also be paid.

The challenge of finding qualified caregivers had previously kept spending down — families simply weren’t able to use the hours allotted by the state. But once they had permission to provide care themselves, the number of hours used increased.

Initially, the program was supplemented by the federal government. But years after the pandemic, states had the choice to continue on their own — or drop the paid parent program. Arizona decided to continue, which meant the state had to pay.

And if anyone was watching the costs mount, they didn’t say anything to anyone who was listening.

The funding crisis gobbled much of the 2025 legislative session, as lawmakers fought over whether to close a funding gap to get DDD through to July. In the end they did pass a supplemental funding bill into law, with a bipartisan caveat that called for a new assessment tool.

That tool will be implemented starting Oct. 1.

Advocates are concerned that some families still don’t know what’s coming.

J.J. Rico is the CEO of Disability Rights Arizona, a federally funded legal advocacy firm. He says that there has been great confusion among DDD families.

“There are some families that may not have received that information yet, and the first time they might hear about it is in their meeting with their support coordinators. So we wanna make sure everybody knows about it, but there are probably some families that still have not heard about this or may not understand that it applies to their child,” Rico said.

“It is hard to believe this is in the best interest of children with disabilities, knowing that many of these children have significant disability related needs that do not fit into a box,” he added. “So we are really concerned. We don't feel it's an effective way to analyze and provide services to children with disabilities.”

Lauren Antosh

Hannah and Garrett Novinski live in Tucson. Both are elementary school teachers. They have two daughters: Lennon, who is 2 1/2 and Elliott, 17 months. Both have Batten disease, a rare and terminal genetic neurodegenerative disorder that presents during early childhood. The Novinskis had no idea Lennon had any health issues until she began having seizures at about a year and a half. They were tested and learned that Elliott also has the disease.

“My daughter literally cannot do anything for herself,” Hannah said of Lennon. “She cannot walk from one room to another. She cannot feed herself by mouth. She has to be tube fed. She's on a slew of seizure medication. She has to be monitored constantly for seizures.... And then just knowing what's coming with our second daughter, there's no way for me to go back to work. I would love to just have a normal life and put them in school and daycare and go back to teaching, but it's not an option.”

Lennon qualified for services, and for the last few months, she has received 40 hours of attendant care each week. Hannah quit her job to stay home with her and has been paid by the state to provide that care. Now the family is not sure they’ll be eligible for anything under the new rules because of the age restrictions included in the new assessment tool.

“About two weeks ago we got a call from our service coordinator from DDD saying that by October 1st you would lose everything 'cause Lennon's two and a half and you don't qualify for anything anymore,” Hannah says through tears. “I just started bawling on the phone. I was like, what am I supposed to do?”

Finding help can be even more difficult in rural parts of the state, as Jessica Gonzalez has learned. She and her two daughters live in Show Low. Her youngest, Torei, just turned four.

“She loves weighted animals,” Jessica said. “She loves anything soft and fuzzy, absolutely loves cuddles. She loves to be read to. She likes to dance. She also really likes avocado!”

Torei has a congenital brain condition called agenesis of the corpus callosum, which, for her, causes seizures and developmental delays.

“We will never be seizure free,” Jessica said. “She has cerebral palsy, she's got cortical vision impairments, she's got multiple vision complications because of her brain development… She's G-tube fed. She has scoliosis as well and … she's nonverbal, total dependent. I lift her, I move her, I change her — everything.”

Jessica, who happens to be a certified nursing assistant, is paid to provide care for Torei.

“Because of where we are, our resources are very limited. And because she is medically complex and she gets skilled nursing hours also, nowhere here in Show Low, in our area, does respite or any paid parent caregiver style of care. So I am her licensed health aide, plus I am her attendant care provider.”

She gets emotional remembering when she heard her daughter will likely lose services.

“That was an emotional day. Torei's four and will lose all of that attendant care. She won't even have the opportunity to have rehabilitation care because she's four, not because of her medical needs but her age. She will lose the option for providers. She'll lose the option for extra care and support. She doesn't get to be evaluated until she's 10. I don't even know if she'll be here by the age of 10. She doesn't have a timeline on her because she's so medically complex. And if she doesn't get the proper care and support, it only makes her deteriorate.

“I don't really know what we're gonna do.”

Tiffany Moon

Families are not the only ones concerned about the new assessment tool.

On Tuesday, Arizona Republican state Rep. Julie Willoughby (Chandler) and Sen. Janae Shamp (Wickenburg) released a statement urging the state to pause the changes and create a “more reasonable, evidence-based assessment.”

Willoughby spoke with KJZZ.

“The age ratings don't follow standard health care age ratings. What I've always seen through, you know, nursing school and in my nursing career, you have very specific age ranges within pediatrics, and this assessment tool completely misses those and they feel very arbitrary. So I would love to be able to find out exactly how this tool was designed to get a better understanding of what goal they're trying to achieve with it .… My ultimate goal would be to get everybody back at the table to reassess this tool and what it looks like, so that way we can move forward with something that's sustainable for not just the families, but also for the state.”

In a lengthy statement, the Department of Economic Security said that members will not automatically lose services, but will be re-evaluated to determine needs.

DES said that while these changes are not a result of funding cuts, the reforms will save $133.2 million.

The statement also said that age limits were developed “based on clinical recommendations from AHCCCS clinicians and evidence-based standards for age-based milestones.”

Willoughby, a nurse by training, is still concerned.

“I have heard that they've said that they did have it clinicians-reviewed, but yet I have not seen the actual research on where they got this information from,” she said. “There's tons of scholarly research out there, and I haven't seen any actual documents that shows where they've got this information from, other than just word of ‘Yes, we've used clinician insight.’”

Gov. Katie Hobbs’ office declined to answer any questions for this story. But DDD’s Garcia Ramadan made the administration’s position on the paid parent caregiver program known at last month’s public forum.

“Nobody wants these numbers to decrease, because we see the positive impact it’s had on members and families since we implemented these flexibilities during the public health emergency. But this kind of growth is simply not possible to sustain,” he said.

EDITOR'S NOTE: Amy Silverman’s adult daughter receives services from the Division of Developmental Disabilities. This story has been updated to correct the year Lauren Larsen’s son was diagnosed with autism.

Full DES statement