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It’s a warm afternoon at the Arizona Capitol. Brandi Coon, who’s from Queen Creek, is here along with her 8-year-old son, Tyson.
"He has cerebral palsy and epilepsy," she said. "And I became his primary caregiver when he was 6 months old when he had a traumatic brain injury."
Tyson had contracted bacterial meningitis.
"He was healthy and about 24 hours later he was in an ICU on a ventilator … And all of his subsequent diagnoses are from that initial brain injury," she said.
For caregivers like Coon, navigating the often messy world of caregiving is a full-time job. It was also unpaid until recently.
In 2020, AHCCCS, Arizona’s Medicaid system, created the Parents as Paid Caregivers program. It was meant to be a temporary fix for the caregiving staffing shortage during the pandemic, but it allowed parents of minor children who qualify for disability assistance to become paid caregivers.
"And that took our family from really struggling financially, paycheck to paycheck, to being able to thrive and to plan for our future and to really meet the needs of our family," she explained.
The program expires in 2024. Coon’s work is making sure lawmakers know about Tyson in hopes they’ll make this program permanent.
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