By Abigail Wilt | Cronkite News
PHOENIX – Nine-year-old Faith Todd has Wolf-Hirschhorn syndrome, epilepsy and autism, conditions that put her at constant risk of seizures, choking and falls without close supervision.
Her mother, Amber Todd, a former EMT who paused her career to care for Faith full time, has intervened and saved her daughter’s life more times than she can count.
The family lives in rural Greenlee County and is among thousands across Arizona that rely on state funding through the Division of Developmental Disabilities to care for loved ones.
That support is now uncertain as the division revises eligibility following a sharp increase in program spending. According to recent reports, DDD spent $77 million on attendant care and habilitation services in 2019. In just five years, the amount grew to $614 million.
During a town hall in late September, DDD Assistant Director Zane Garcia Ramadan told attendees that the spending was “unsustainable.”
DDD released a statement, explaining the agency “is currently supporting more people and providing more services than ever before. This kind of growth does not align with budgetary increases, which places strain on the delivery system.”
Faith sat next to Todd, intermittently resting her head on her mom’s arm as Todd told Cronkite News what it would mean for them to lose access to the funding they receive to keep Faith safe and comfortable in her own home.
“Families like mine are facing housing instability, food instability, mental health crisis over this. It is a very, very scary time,” Todd said.
DDD rolled out new assessments for attendant care and habilitation services on Oct. 1, intended to reduce a drastic increase in spending by placing stricter guidelines on how many billable hours of in-home care are approved for families.
Attendant care hours cover in-home supports, transferring, supervision and physical care for things like bathing and feeding. Habilitation is a goal-based service that focuses on teaching a child the skills they need to become as independent as possible, according to Brandi Coon, who has a child with developmental disabilities and is the president of Raising Voices Coalition, an organization that advocates for developmental disability policy.
“The attendant care and habilitation program allows parents to become full-time caregivers for their children with disabilities,” Coon said. “Billable hours are approved based on individual assessments set by DDD and carried out by a quarterly support coordinator.”
The new assessment tool failed to consider individual diagnoses and cases where children rely on extraordinary, around-the-clock care, requiring more hours. Instead, DDD rolled out rigid, age-based evaluation categories to assess billable hours.
“Particularly, I believe it will have a drastic impact on the early intervention for children with disabilities because we’re most limiting those who are younger,” Coon said. “If you go to any website, you can find disclaimers that say, we don’t discriminate based on age, sex or orientation, where this new assessment kind of laughs in the face of that discrimination.”
On Oct. 16, Gov. Katie Hobbs directed Arizona Health Care Cost Containment System to pursue an emergency revision to ensure the new evaluation “allows for exceptions for extraordinary care,” and creates new categories like “specialty meal preparation, specialty eating and specialty toileting.”
“I do not think we should be cutting the budget on the backs of families who have extremely fragile members that need help,” said Rep. Nancy Gutierrez, D-Tucson. “That’s what this (revision) is doing, it’s slowing it down and making sure that these extreme cases that need habilitation or other services will still be able to get that.”
Todd is able to care for Faith in their home with help from attendant care and habilitation services.
Faith is approved for 40 hours of attendant care services, which includes assistance with daily tasks like dressing, grooming and feeding. She is also approved for three and a half hours of habilitation services, which includes time spent teaching Faith life skills she can use on her own.
For parents like Todd, this program was necessary. When Faith got really sick, Todd quit her job as an EMT, took out retirement tax returns and worked odd jobs to be able to care for her daughter.
“If she’s going to die, she’s going to die with me. Not in the arms of a babysitter – and even if that’s in a cardboard box. So, we just made ends meet,” Todd said about her decision to care for Faith full-time.
While state officials work to finalize the new assessments, parents remain in limbo, uncertain about what services their children might lose funding for.
Advocates of attendant care and habilitation insist that these services will save the state money long-term.
“If we don’t want to take care of folks with disabilities, and we want to go back to having institutions, which are more expensive,” said Rep. Quantá Crews, D-Phoenix, who cares for her child and relies on DDD funding. “Or we’ll have more unhoused on the street with disabilities, with challenges, and we can’t afford that either.”
Todd agreed that reducing these services for families will cost the state more down the road.
“Since I’ve been taking care of her, she hasn’t had any ER visits, no more ambulance rides, she’s been seizure-free because I’ve been here monitoring her and any illnesses that pop up. I take her to the doctor for urgent care. This (funding cuts) is going to affect the state’s cost neutrality,” Todd said.
Looking ahead to the 2026 budget, legislators will decide whether DDD should receive more funding to accommodate for its growth — or whether to cut it.
“I want to make sure that DDD is funded, and I think we can look at the ESA (Education Savings Account) voucher program and easily put some limits on that,” Gutierrez said. “That would free up hundreds of millions of dollars for our state.”
Long-term implications of the funding cuts may be irreversible, Coon said: “It will impact the families supporting those children and cause dramatically increased stress levels for their caregivers, greater strain on marriages, greater financial strain.”
For Todd, the battle for Faith’s care is far from over, and she hopes for better outcomes.
“We understand we’re not going to get everything we want. We just want to support our most vulnerable individuals.”
This article first appeared on Cronkite News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.