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Families fight to save program helping Arizona kids with disabilities and their parents

The Arizona Parents as Paid Caregivers Program is set to end in March of 2024.

PHOENIX — Valley families are pleading with Arizona leaders to extend a program which empowers them to care for their children with disabilities. The Parents as Paid Caregivers Program is at risk of being shut down. It pays parents to take care of their children with disabilities. 

The program started at the beginning of the pandemic when paid providers were hard to find. Involved parents said those same providers are still hard to find now. 

Brandi Coon is a parent in the program. Her son Tyson, who loves to read and snuggle on the couch with his mom, has been cared for since he was diagnosed with bacterial meningitis at just 6 months old. That illness, led to multiple disabilities in Tyson, today. 

“So his main diagnoses are cerebral palsy and epilepsy," Coon said.

The diagnosis also requires extra care. And when the pandemic first hit, the at home care changed for Tyson and his family, for the better. 

“Having the flexibility to be paid to provide the level of care that is approved for by the state in times when caregivers aren’t available really supports us as a family," Coon said. 

She is part of the Arizona Parents as Paid Caregivers Program. It trains and pays parents to do therapies and other supports with their children, just like a provider. It's at risk of shut down in March of 2024. Coon said that will present a big hardship for her family. 

“We would probably be scrambling like most of the families in the state to find a care provider," Coon said. "Prior to the pandemic, care providers were very difficult to find and with the pandemic and the economic situation it’s just gotten harder.”

Jon Meyers is Executive Director of the Arizona Developmental Disabilities Planning Council. He's been involved in talks about whether or not this funding can be effective, long-term. 

“The overwhelming feeling of parents I’ve interacted with is that the program should be extended and it should be made permanent in Arizona," Meyers said. "That’s not a universal feeling. There are some parents who for various reasons would not be able to continue providing these services to their children.”

Coon is with a team behind a Change.Org petition to permanently approve the program. So far it has more than 4,600 signatures and she's working on a survey too. 

“In the next couple of weeks we plan on publishing a survey that will go out to agency owners as well as parent providers and it will give us a really good description of what the last couple years in this program has been like," Coon said. 

Coon is doing work for Arizona's disability community so she can be present at home, giving Tyson the daily care he needs. She added they plan on taking the survey results to the state legislature and proposing the program be in place permanently. If approved, it would be an extension of a similar program that's already in place in Arizona for parents who care for their adult children with disabilities.

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