TUCSON, Ariz. (KGUN) — As Alexandra Patterson pushed her son Aries Valenzuela in his chair with wheels, she was thinking about the money she got to pay for his chair.
Every month she gets money from the Division of Developmental Disabilities for Aries who has a rare genetic condition called 5Q31.3 Full Deletion Syndrome.
However, funding could run out for the DDD if the Arizona legislature doesn’t pass an additional $121 million. That means they would not be able to pay claims in May and June.
“Aries is fun, loving, caring,” Patterson said. “If we lost DDD, it would mean my child’s ability to thrive.”
The Department of Economic Security said there are more than 59 thousand people and their families that rely on the DDD’s services. KGUN9 News reporter Andrew Christiansen asked them which services could be affected but they did not answer that specific question.
Without the DDD’s funding, Patterson said she would have to pay an extra ten thousand dollars a month out of her own pocket.
“If we lost DDD it would mean my child’s ability to thrive,” Patterson said. “I rely on the nursing in order to pursue my career.”
DES said the DDD needs more funding because the amount of people using their services is growing. They said by 2026 they are expecting to serve about 70 thousand people.
The DDD said they support an increase of over $342 million for their services for next fiscal year, which starts on July 1.
“Either Aries would have to be placed into a nursing home or we would have to leave the state and for me, the only option would be to leave the state,” Patterson said.
The costs for physical and behavioral services are higher, according to DES, as well as the cost to deliver them.
“If we change any part of that, even if it’s for a few months, we’re talking about his well being,” Patterson said.
Governor Katie Hobbs said she supports capping caregiving parents’ hours and pay, accountability in billing, and assessing caregivers.
Hobbs is hoping to make sure that caregiving that is funded by taxpayers meets a consistent standard of “extraordinary care”. Her office defines “extraordinary care” as “Care that exceeds what a legally responsible parent would perform on behalf of a minor child if the child did not have a disability or chronic illness, and care which is necessary to assist the member's health and welfare to avoid institutionalization.’
Her office also said their new system will now be able to distinguish between when a parent is a caregiver for their own child or a non parental professional caregiver.
“I’ve presented my budget to the legislature and they’ve chosen to politicize this issue,” Hobbs said about lawmakers last month.
Meanwhile, Republicans said Hobbs isn’t saying why she’s letting costs go up.
“The only way for us to pass a supplemental is with the House and Senate agreeing on reforms that the governor would sign,” State Representative of District 28 David Livingston said last week.
Meanwhile, Patterson is hoping legislators are held accountable and hoping they understand how detrimental it could be if supplemental funding is not passed for people with disabilities.
“A lot of us don’t know how long we have with our kids and we’re constantly in this battle to prove our kid’s worth. We are tired. Our kids are worth everything," she said.
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Andrew Christiansen is a reporter for KGUN 9. Before joining the team, Andrew reported in Corpus Christi, Texas for KRIS6 News, Action 10 News and guest reported in Spanish for Telemundo Corpus Christi. Share your story ideas with Andrew by emailing andrew.christiansen@kgun9.com or by connecting on Facebook, or Twitter.
