Parent backlash leads to changes to Arizona's new developmental disability assessment

Arizona’s Medicaid agency is making changes to the state program that pays for care provided to children with disabilities after families expressed concern about a new assessment tool that went into effect earlier this month.

Lawmakers and Gov. Katie Hobbs spent much of the last legislative session negotiating a deal to provide emergency funding for the program after it nearly went bankrupt as its costs far exceeded the amount of money allotted in last year’s budget.

The budget crisis was largely the result of enrollment increases and the end of pandemic-era federal funding that paid for an expansion of services, including a program that paid parents who acted as caregivers for their children.

The emergency funding deal also required the Arizona Health Care Cost Containment System, the state’s Medicaid agency, to create the new tool to assess children’s eligibility as the state sought to control the program’s increasing price tag.

In the weeks before that tool went live on Oct. 1, parents told KJZZ they worried the stricter assessment would result in a reduction in services and care hours covered by the state.

In a statement on Thursday, Hobbs said she directed AHCCCS to make changes to the program to address those concerns. That includes developing an "extraordinary review process” that will allow eligible families to seek exceptions.

“Arizonans with disabilities and their families deserve to have a say in decisions that affect their lives,” Hobbs said in a statement. “By working together, increasing transparency and community input we will continue delivering best in the nation care to Arizonans with disabilities, including intellectual and developmental disabilities, while ensuring these services remain fiscally sound for years to come.”

The agency will also delay the implementation of any reduction in care hours resulting from the new assessment.

Parent and advocate Brandi Coon said the changes address concerns that the tool overlooked the individual needs of certain children and could have resulted in the loss of needed care.

“This is a major win for the community, and we are excited to continue engaging and that there's currently a pause on that implementation,” she said.

Coon, who leads the Raising Voices Coalition, said she believes the changes will lead to better outcomes for children and families, because children won’t immediately lose services due to new age-based rules in the assessment tool.

“But then let's have a one-on-one individual assessment of this member so that we can analyze if this assessment covers all their extraordinary care or if we need additional review in place to ensure that those needs are captured correctly,” she said.

Coon said the changes are a good emergency stopgap measure but acknowledged that more work is needed to address the growing costs that led the state to implement the assessment tool in the first place.

“And so we're still going to continue showing up, being part of the solution, and continuing to be mindful of the budgetary concerns within our state and with health care,” she said.

According to an agency FAQ, any families that have already seen their hours reduced since the new tool went into effect on Oct. 1 “will be prioritized for reassessment.”

Typically, new rules like the ones Hobbs announced must go through a lengthy review process under Arizona law before they can go into effect.

However, the governor indicated AHCCCS used emergency rulemaking powers that allow agencies to bypass that process with approval from the attorney general.

Attorney General Kris Mayes signed off on the new rules, and AHCCCS will submit the new rules through the regular rulemaking process in the future, according to the Governor’s Office.