Hundreds of advocates, family members and people living with disabilities marched at the Arizona Capitol in late February, imploring the governor and lawmakers to solve an impending financial crisis that threatens to disrupt services for tens of thousands of Arizonans.
According to the Arizona Department of Economic Security, the Division of Development Disabilities will run out of money by May if it doesn’t receive a $122 million cash infusion. The division operates the state Medicaid program that provides services for the 44,000 Arizonans with developmental disabilities who require long-term care.
“These programs are not just numbers on a budget, they are the foundation of health, dignity and independence for individuals with disabilities,” said Dr. Kathleen Muldoon, whose son Gideon has 42 medical diagnoses, including cerebral palsy.
She said supports paid for by Medicaid have helped him drive his own wheelchair, communicate and meet state standards in his fourth grade math class.
Democratic Gov. Katie Hobbs joined those advocates, telling them Republicans who control the Legislature should send the department the money immediately.
“Funding for DDD is under threat because the legislative majority has decided that they want to use the people in this room as political pawns rather than serve you and do their jobs,” Hobbs said.
Republican legislative leaders have not ruled out sending emergency funding to DES but have so far blocked Democratic efforts to pass legislation approving those dollars.
Instead, they argue that funding should be part of larger state budget negotiations between the Legislature and the governor, and should include plans to cut costs and improve efficiencies in the department.
“If the DD community wants this fixed, please reach out to Gov. Hobbs and tell her to negotiate with the House and Senate and pass a budget to fix this,” said Rep. David Livingston (R-Peoria), Muldoon’s state representative and the chair the the House committee that oversees budget bills.
“It's really that simple, guys,” he added. “It cannot be fixed without her. She has to be included, and she has to bring reforms to it.”
Sen. John Kavanagh (R-Fountain Hills), Livingston’s counterpart in the Senate, said there is time to make a deal.
“The state budget is like a giant iceberg, or glacier rather. It’ll keep running for a few months,” he said.
“If the DD community wants this fixed, please reach out to Gov. Hobbs and tell her to negotiate with the House and Senate and pass a budget to fix this."Rep. David Livingston (R-Peoria)
That’s making affected families nervous. Last year, budget negotiations stretched into June, well beyond the date when the disability division could run out of cash this year.
DES officials said if they don’t get the money before May, they will have to stop payments to providers.
“Excellent incentive to get the governor to engage in budget negotiations,” Kavanagh said.
Republicans blame Hobbs for the impending crisis, pointing to her decision to continue a COVID 19-era program that pays parents who act as caregivers for their children.
Livingston said Hobbs continued the program even though the Legislature did not allocate additional money to pay for its costs as federal COVID dollars ran out. The program was started in 2020 under former Republican Gov. Doug Ducey and was initially fully funded by the federal government. But now the state is responsible for 35% of costs.
Hobbs said those Republicans are just playing politics, claiming they’re the ones who won’t negotiate.
“They won't send me anything to negotiate on,” she said. “They know where my position is. They have my budget, and they're just saying no, no, no, no.”
Hobbs said caseload growth is driving the cost increases and adjusting the budget to reflect that should be routine.
“Eliminating this program would not save money. It would shift costs to hospitals, crisis services and public welfare, ultimately increasing Arizona's financial burden."Brandi Coon, a parent who led the effort to start the parents as paid caregivers program
According to legislative budget analysts, both sides are partially correct. They told lawmakers case load growth and higher-than-projected costs led to the budget crisis. But, they noted that the continuation of the parent caregivers program likely contributed significantly to those higher costs.
The families affected by the stalemate said the parents as paid caregivers program was a lifeline, not simply a line item to be left on the cutting room floor.
Without the program, many children would have to be put back into more costly congregate care settings, said Brandi Coon, a parent who led the effort to start the parents as paid caregivers program.
“Eliminating this program would not save money. It would shift costs to hospitals, crisis services and public welfare, ultimately increasing Arizona's financial burden,” she said.
Several parents, citing their own experience, also said their children were sick less often and, as a result, needed fewer treatments when their parents were able to stay home full time.
That includes Sarah Wyckoff, a single mother who said it was difficult to find caregivers to meet all of her child’s complex needs as Arizona, like many other states, faces a caregiver shortage.
“We had multiple hospitalizations and things that just made it very challenging to have a consistent schedule and the caregiver, and to know when we were going to need those services,” she said.
Wyckoff said she couldn’t afford to be her son’s full-time caregiver before parents were compensated through the program. But, once she joined, her son’s health improved dramatically, because she was able to take him to every appointment and avoid congregate care settings that were risky for his compromised immune system.
That, in turn, led to developmental improvements, because he was able to attend therapy more often.
“We’re looking for a unicorn. And I’m glad I’m his unicorn,” Wyckoff said.
Advocates said the increased costs reflect the fact that the program is finally paying for the care that children with developmental disabilities were entitled to the entire time, care that just wasn’t available – or went uncompensated – before parents were getting paid.
