Two Moms’ Vision Now a Reality: Parents as Paid Caregivers in Arizona

by Jason Snead, Research and Communication Specialist

When the Arizona Division of Developmental Disabilities (DDD) asked Arizonans for ideas on how to use American Rescue Plan Act (ARPA) funds, two mothers of children with disabilities, Brandi Coon and Lauryn Van Rooy, had a perfect idea: allow parents to continue being paid caregivers of their minor age children, as they had been since the beginning of the COVID-19 pandemic.

With a special Medicaid flexibility allowed by the federal government, the Arizona Health Care Cost Containment System (AHCCCS) was able to put that program in place temporarily. It proved overwhelmingly successful, easing the caregiver shortage caused by the pandemic and protecting medically vulnerable children from possible infection.

Advocacy for paid family caregivers pays off

Then, in early 2021, Brandi and Lauryn started advocating for the Parents as Paid Caregivers program to become permanent, starting a Facebook group and meeting with AHCCCS leaders, as well as advocacy groups such as ADDPC and The Arc of Arizona, to make sure their vision became a reality.

AHCCCS told them “No” several times, saying that it was too expensive or that they needed to get legislation passed, but Brandi and Lauryn did not give up. The advocacy paid off: In June 2023, AHCCCS published a proposal to insert paid caregivers into Arizona’s Medicaid program; a public comment period followed, and, due to the volume of comments received, AHCCCS announced its intention to extend the scope of the paid caregiver program.

“We are so grateful to AHCCCS and our local leaders for listening to the lived experience of Arizona’s disability families,” said Van Rooy. “This program is a testament to the incredible things that can happen when people’s voices are heard.”

On February 16, 2024, the Centers for Medicare and Medicaid Services (CMS) approved the state’s request to make the Parents as Paid Caregivers of Minor Children program permanent.

Brandi and Lauryn credit the Council’s former executive director Erica McFadden for getting them started and appreciate current executive director Jon Meyer's continued support.

“The stories that I hear from caregivers consistently talk about the inability to have a stable income, particularly single moms who are raising one or two kids with disabilities," Brandi says. "They were the real driving force for me and hopefully, we provided some relief.”

Caregivers struggle to find help amid worker shortage

According to Michele Thorne of Arizona nonprofit Care 4 the Caregivers, “When we ask caregivers what the most difficult thing is for them, the answer is consistently finding respite for their kids or finding help for their kids... Let’s be honest, these two super moms also helped the state with their direct care worker shortage, and they did all of that in one policy change. It's amazing.”

These two super moms proved that through perseverance and creative thinking, anything can be accomplished. Brandi and Lauryn presented the state with a problem but also worked with the state to create a solution. They followed the process all the way through.

Contact Brandi Coon and Lauryn Van Rooy at https://www.raisingvoicescoalition.com/

Contact Michele Thorne at https://care4thecaregivers.org/