Families celebrate Arizona disability services funding, but caregiver program's future unclear

Gov. Katie Hobbs and state lawmakers joined families at the Arizona Capitol to celebrate a bipartisan bill passed last week that provided much-needed emergency funding to the state agency that provides services for Arizonans with developmental disabilities.

“The fight I saw in you to get this done and make sure that your families continue to be cared for, reminds me of why I entered public service in the first place, and Arizona saw firsthand that nothing is impossible in a room full of moms,” Hobbs said said before signing a ceremonial version of the bill that sent $122 million to the Department of Economic Security’s Division of Developmental Disabilities, which was on pace to run out of money by May.

The families and advocates who joined the governor praised the bill, saying it preserves the health care they rely on every day.

“I also receive direct support services from DDD, and they allow me to be a better father, a better husband, and also maintain a full time job so I can provide for my family,” said Arizona Developmental Disability Planning Council member Jason Snead, who has cerebral palsy.

The deal came together after months of partisan squabbling over what caused the division to run out of funding.

Republican lawmakers blamed Hobbs for “mismanagement,” arguing her decision to continue a program that pays parents who act as caregivers for their children without legislative approval – or additional funding – created the crisis.

Hobbs and Democratic lawmakers, meanwhile, said that was just politicking, pointing out that the legislature regularly approves what are called “supplemental” funding packages if an agency’s budget runs short before the end of the year. That includes supplemental funding approved by Republicans in recent years to fill education funding gaps connected to Arizona’s expanded school voucher program.

For months, lawmakers on both sides of the aisle agreed that they should send an emergency funding package to lawmakers but couldn’t agree on the details.

That ended last week, when Hobbs signed a bipartisan bill passed by lawmakers that included some of the spending guardrails sought by Republicans without eating into Democratic priorities or eliminating the parent caregivers program.

“This win belongs to every self advocate, caregiver and taxpayer who spoke up, every sibling who stepped in, every voice who kept showing up after hearing no a hundred times,” said Brandi Coon, a parent and advocate for the DDD community.

Hobbs and lawmakers credited that community – the families, caregivers and advocates impacted by the funding cliff – for pushing for the compromise. They have been a constant presence at the Capitol for months: marching, meeting with officials and sharing the ways a failure to act would impact their families.

“This community showed up every day, and they stood in the breach.” Hobbs said. “Their advocacy shouldn't have been necessary, but it turned out to be essential.”

All parties agreed that one particular community member helped push negotiations forward: 13-year-old Grace Haley.

Haley, whose twin brother Caleb relies on services funded by the Division of Developmental Disabilities, cold emailed her state representative, Rep. Julie Willoughby (R-Chandler), and secured a meeting where her family was able to share their experiences.

“I sat down and met her and her Nana and her brother Caleb and her mom, and I was able to see exactly what this community is about,” Willoughby said. “I've learned that they are great at two things: one is how to love and two is how to fight.”

Willoughby would go on to play an important role in negotiations, going as far as bucking leaders in her own party to advocate for a bipartisan solution.

Hobbs and the families credited Willoughby and Rep. Nancy Gutierrez (D-Tucson) for pushing a solution across the finish line.

“To Rep. Willoughby and Rep. Gutierrez, thank you for showing us what selfless and courageous legislating looks like,” Hobbs said.

Grace Haley added, “You both made me feel like my voice matters, and I will carry that with me for the rest of my life.”

Wayne Schutsky/KJZZ

The future of the parent caregiver program

The bill signed last week will ensure that the disability division is funded through the end of the state’s budget year, which runs through June.

But there are still questions about whether next year’s budget will include enough funding to keep the program going.

Legislative budget analysts said that higher-than-anticipated costs and enrollment in disability services led to the budget shortfall this year. And they said the parent caregiver program contributed significantly to those issues.

The program was started during the COVID pandemic in 2020 under former Republican Gov. Doug Ducey. At the time, the federal government covered 100% of costs.

However, that initial COVID-era program expired, so states like Arizona that have kept it active are now on the hook for about one-third of the program’s costs.

Parents and advocates say the parent program is indispensable, because of a years-long caregiver shortage that predates the pandemic.

“I have exactly the same level of training as those other people who come in to help my son, care for him, make sure that he is safe. I have all of that same certification and training,” Caleb and Grace’s mother Amy Haley told lawmakers earlier this month. “I am just as valuable as they are, and I don’t have any turnover. I’m not going to leave.”

And they argue it actually saves the state money in the long run, because it allows many children to be cared for at home rather than in a group home.

Brandy Petrone, a lobbyist who represents the Arizona Association of Providers for People with Disabilities, told lawmakers that, on average, the system spends $45,000 annually per individual for home services versus $200,000 annually for group home care.

Hobbs said she supports keeping the program around but stopped short of guaranteeing it will be included in the next state budget, which still must be negotiated between the governor’s office and the Republican-controlled legislature by July 1.

“Certainly we want to ensure, after this long fight that you all witnessed, that we continue this funding, and I am hopeful that we will be entering budget discussions very soon,” Hobbs said.

Those negotiations will be complicated after legislative budget analysts projected the state will bring in less revenue than expected next year.

EDITOR'S NOTE: A photo caption has been updated to correct the spelling of Grace Haley's name. The story has also been updated to correct the spelling of Brandy Petrone's name.