Arizona parents of disabled children ask for changes in proposed caregiver program

PHOENIX (3TV/CBS 5) — In 2020, Arizona allowed parents of children enrolled Department of Developmental Disability (DDD) and Arizona Long Term Care System (ALTCS) to be certified and trained direct care workers (DCW) for their children.

The program, Caregiver Benefits for Parents, reimburses parents for providing care to help with the current shortage of providers. Currently, it’s set to end in September. However, the Arizona Health Care Cost Containment System (AHCCCS) has proposed to keep the program permanent but with some changes. “The proposal over the course of the pandemic was reimbursing for habilitation services and there were no limits. This prosal moving forward, again proposes attendant care services and a 40-hour limit for services provided by parents of minor children,” said Alex Demyan, the assistant director of the Division of Community Advocacy and Intergovernmental Relations at AHCCCS.

While this proposed program allows parents of kids to continue to perform attendant care services, some parents feel as though there are some limitations. “While the hours would still be available and assigned to that child, these limitations would require an outside provider to come in to fill those gaps, and the workforce available is not really there to backfill what the parents are currently providing,” said Brandi Coon, a parent caregiver.

Coon’s son has lived with his disability since he was 6 months old. “He has intractable epilepsy and cerebral palsy from a traumatic brain injury,” Coon said.

Coon said she’s learned a lot about what her son’s needs are. So when AHCCCS introduced this program, she knew her son would always be in good hands. “We’re really able to customize what that child needs and know that child the best to facilitate their care and their daily needs and daily activities of living,” Coon said.

Right now, there are 16,880 total children living at home and receiving home and community-based services. Of those, 3,469 are being served by parents as paid caregivers.

Coon hopes the current program will stay as is without any changes. “We had a hard time finding provides in consistency prior to 2020. Being able to have the option of being the paid provider is just an increased availability to the family versus having to constantly rely on outside providers that you may or may not get along with,” she said.

AHCCCS has opened a public comment period through Aug. 21 on the new proposal. You can submit your input here.

Public comments may also be submitted by email to waiverpublicinput@azahcccs.gov or by mail to the address on the Parents as Paid Caregivers web page.

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