When Tatum Connors leaves for her office job each weekday, her ID badge often reads “Assistant director.”
Around her neck, her gray lanyard reads “Everyone belongs.”
Tatum, 36, has Down Syndrome and spends her days participating in the Taglit Day Program for people with disabilities at Tucson’s Jewish Community Center. On a typical day, she may bowl, do archery, craft, move her body in the workout center or visit horses down the Rillito River path from the JCC.
“Tatum thinks she has an office job,” her mother Lisa Connors said. “She thinks she runs the place.”
But that could change soon. Tatum and her family along with roughly 60,000 Arizonans who rely on state and federally funded programs to provide vital services could lose them and be forced to turn to hospitals or long-term care facilities.
If the Arizona Legislature doesn’t intervene, families could lose this care starting in May. The Arizona Division of Developmental Disabilities faces a $122 million shortfall to sustain the program for May and June before a new fiscal year begins.
The division supports and provides services to Arizonans who are diagnosed with autism, cerebral palsy, epilepsy, Down Syndrome, other cognitive and intellectual disabilities and to children under 6 who are at risk for developmental disabilities. The services include therapy and medical care, in-home treatment, services and case management. Slashing the program would also affect caregivers, therapists and programs throughout the state.
Costs have ballooned as federal funding dropped. More people are eligible for services. Worker pay has increased. And the Parents as Paid Caregivers program — seen as a lifesaver during the pandemic — proved successful and expensive.
“(Tatum) would be devastated if it was gone,” said Lisa, 65. “I have seen her extremely sick but she still wants to go. I don’t know what we would do. If Tatum was at home, I don’t know where I’d put her.”
Shortfall becomes clear
Officials warned last fall that Division of Developmental Disabilities services were in financial danger. And when the Legislature opened its session in January, the state Department of Economic Security gave lawmakers the bleak financial picture: The money thousands of disabled Arizonans rely on, runs out in May.
Democrats sounded the alarm and mobilized families, nonprofits and others to reach out and tell their stories as they have now done for weeks without resolution.
State Rep. Nancy Gutierrez — a Tucson Democrat — sponsored a bill that would fund the program through the end of the fiscal year, but despite a rally at the Arizona Capitol last month and a legislative push last week on the floor of the Legislature, the Democrats’ efforts have failed.
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“People need to know this is not a budgeting issue,” Gutierrez said. “It is a life-or-death situation for these families.”
About 30 of those families were present in the gallery of the House chamber on March 18 as 27 Democratic lawmakers introduced parents and children who use Division of Developmental Disabilities services. After each family story, applause and a welcome filled the room.
“It’s never been done in the three years I’ve been there,” Gutierrez said of the dozens of introductions. “It made the Republicans uncomfortable and it uplifted how important the money is and what it would mean if we lose it.”
Gutierrez, a public school teacher, is motivated by students she teaches in yoga classes.
“I get to have special needs kids in my classes and oftentimes I am their only regular education class,” she said. “I am lucky enough to have kids with a variety of needs and it has completely enriched my life. That’s the place I come from. I just have so much empathy for these families and their children.”
‘Political tug-of-war’
House Appropriations Committee Chairman David Livingston, a Republican from Peoria, has called on Gov. Katie Hobbs to explain the shortfall and work with Republicans on a solution. The back-and-forth over the last two months has played out in a series of news releases and letters.
In a letter to the governor last month, Livingston said Hobbs’ administration “has made major financial commitments without consulting the Legislature and now families are staring down the consequences of an unsustainable program.”
Arizona Luminaria reached out to Livingston’s office by phone for comment about the funding gap but did not receive a response.
Hobbs refutes his claim. Instead, she said, the budget shortfall blame belongs to the Republicans who have diverted millions of taxpayer dollars to their favored Empowerment Scholarship Accounts Program, spending public money on private school and homeschooling.
“It is outrageous that the legislative majority continues to hold Arizonans with autism, cerebral palsy, and Down syndrome hostage to their political stunts,” Hobbs said in a news release Wednesday.
“While I take action to save taxpayer dollars and protect critical healthcare for Arizonans with disabilities, they continue to grandstand, play political games, and push up to 50% cuts to lifesaving services. Meanwhile, they refuse to even consider common sense accountability and transparency measures for the ESA entitlement program and its out of control spending.”
The budget needs to be done by June 30. At this point, both sides say neither is willing to negotiate on the funding gap nor the 2026 budget.
The families who rely on the public program are stuck in the middle.
“The Legislature has called upon the governor. The governor says they need to come back with something so we can negotiate. It’s a political tug-of-war,” said Jon Meyers, executive director of the Arizona Developmental Disabilities Planning Council.
“We have more people eligible, more people using services. It’s more expensive to run the system,” he said. “We have wages, inflation, supplies going up. It’s a range of factors involved.”
‘Care impacts people’
The reasons for the shortage are less important, families say, than vital services, paychecks for care workers and the relief and opportunity that some parents get as they work in the Parents as Paid Caregivers program.
Chelsea Blue is training — just as professional caregivers do — to be the caregiver for her 5-year-old son, Marcel, who is autistic, ADHD and gifted.
Blue, and her husband, Ben Elías, both work full time. The family lives paycheck to paycheck as Marcel attends Davidson Elementary, for four half-days a week. But the family qualifies for Division of Developmental Disabilities support and Blue aims to be Marcel’s caregiver after she completes her program training in April, just as funding is currently set to run out.
“Part of me felt this shame,” Blue, 33, said. “But this program exists for a reason and it’s being targeted and if it was cut right now we (as a community) could face a ton of consequences.”
The significance of the moment is not lost on Blue, who has a somewhat flexible job in administrative support for her family’s AC company, Blue Air Conditioning. And like many families, she supports mainstreaming her son into his school and building social ties, but she needs help.
“I am aware of my privilege. He has meltdowns and I have to drop everything and pick him up,” she said. “His disability takes energy and effort. He gets hyper-focused on things and ignores that he needs to pee and has an accident.”
The Parents as Paid Caregivers program started as a federally funded temporary program in Arizona in 2020 when providers did not have enough caregivers who wanted to go into people’s homes because of the COVID-19 pandemic. It became permanent in February of 2024 but needed about 30% of its budget covered by the state to survive.
The program pays parents to care for their children at home and program cuts could conflict with what some lawmakers intend, said Brandi Coon, co-founder of the Raising Voices Coalition, a disability advocacy group in Phoenix. The caregivers program has helped solve a workforce shortage and can reduce hospitalization and stays in long-term care facilities, said Coon, whose 10-year-old, Tyson, has special needs.
“If we want to continue with programs that are ethical, family centered, economical … we need to support the funding that allows people to stay within their environments,” Coon said.
In an effort to maintain that care and work with Republican lawmakers, Hobbs proposed changes to the program on Wednesday. They include parent billing accountability, stronger assessment guidelines and a 40-hour weekly cap per child for each caregiver.
Respite caregiver Samantha Belknap has worked in those home settings and in community centers. The Tucsonan works for local programs supplemented by the developmental disabilities funds and fears she will lose her job.
As a single mother of 8-month-old Felix, Belknap said she felt “instant panic” when she heard of the funding issue. “How am I going to drastically change my life? And, I am so sad for all the people I work with and care about.”
Some days Belknap, 31, does Zumba with her people, other days are focused on life skills like doing laundry.
“I know directly how this care impacts people,” she said. “I care so much for them. I consider them family. It’s a lot of work for a little money. Yes I am impacted, but for those that need care it’s so much more, it’s their whole life.”
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