Arizona may pay parents who are caregivers of minor children with disabilities

Arizona parents who are caregivers for children with disabilities have been getting paid for their caregiving since the COVID-19 pandemic, and that temporary payment model may become permanent.

Paying parents as caregivers would be a substantial change to Arizona policy related to parents of minor children and will have a positive impact on the lives of children and families, said Jon Meyers, executive director of the Arizona Developmental Disabilities Planning Council. It would really just be transferring the responsibility of caring for the kids from one provider to another, he said.

"There are going to be parents who decide to take advantage of this over the long term, and they're going to be parents who don't," Meyers said. "But in particular, in light of the worker shortage that we have in this field right now, there's just no question that this is an important program."

"And if it were to be eliminated, if they were to just let it fall off," he added, "we'd have an even greater crisis of children not being able to get the important care they need."

Arizona's Medicaid program, which is called the Arizona Health Care Cost Containment System, hosted several forums about the proposal, called Parents as Paid Caregivers, this summer. It is accepting public comments about the plan through Monday.

Comments may be submitted via e-mail to waiverpublicinput@azahcccs.gov or mail to: AHCCCS, c/o Division of Community Advocacy and Intergovernmental Relations, 801 E. Jefferson Street, MD 4200, Phoenix, AZ 85034.

Under the AHCCCS Parents as Paid Caregivers proposal, parents would be eligible for getting paid as caregivers as long as they and their minor children meet certain requirements.

Among other things, parents would need to meet all direct care worker requirements required by the state, including going through training and competency tests. They'd also need to have quarterly in-person case management visits. Their kids must be minors, and eligible for the Arizona Long Term Care System, known as ALTCS, which is for people with disabilities significant enough to need institutional level care, even though they may not be living in an institution.

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Of the eligible kids receiving home and community-based services in Arizona, most are not getting care from a parent who is paid as a caregiver, the most recent AHCCCS data suggests. The most recent numbers show 16,880 minor children in Arizona living at home receiving home and community-based services and of those, 3,469 are being served by parents as the paid caregiver, AHCCCS officials say. The remaining 13,411 are being served by caregivers who are not their parents. The data pertains to the children enrolled in the ALTCS' Developmentally Disabled program, AHCCCS officials said.

Before COVID-19, Arizona parents of minor children with disabilities had never been paid for care they provided to their kids. But during the pandemic, a shortage of direct care workers, combined with stay-at-home and social distancing recommendations, led the state to ask the federal government for some flexibility in reimbursing parents for the “extraordinary care” that was required of them to provide throughout the course of the pandemic.

Brandi Coon, a Queen Creek mother of three, has an 8-year-old son with disabilities and said that even before the pandemic she was unable to work outside the home because her son needed consistent care that she wasn't always able to find outside the home.

"Even before I was being paid, I was the consistent caregiver for him. But this just allowed us to have the opportunity for me to be paid for that service versus providing it as unpaid labor, and that makes sense," Coon said. "Every parent's a little different. Some parents like doing it all themselves, other people want 100% outside providers. And I've kind of fluctuated between the two, just depending on the availability of outside help."

When she began getting paid as a parent caregiver as part of the temporary program during the spring of 2020, it relieved a lot of financial stress in her family, which had been relying solely on her husband's paycheck, said Coon, who has used the paid caregiver program off and on over the past three years.

"This allowed us to not live paycheck to paycheck," she said of the program. "We're not in this constant burnout caregiver crisis. We're able to really shape what our life looks like, find what's important and create that care team that our son needs."

Coon is part of a group called the Raising Voices Coalition wants the parameters of the permanent program to be the same as it is in the temporary program that's in place right now.

The group wants to amend the proposal to remove a 40-hour per week, per child cap on the number of hours that would be eligible for payment. The group also wants the state to expand the kinds of services parents would be eligible to get paid for to include "habilitation" when required. This includes training their child to do skills that would help them to live independently, such as cooking, washing clothes and learning how to take medications.

Under the proposal, parents would get paid for "attendant" care for doing things like helping their children with bathing, eating, grooming and using the bathroom, but not for "habilitation."

Aside from those technicalities, the proposal as a whole is "forward-thinking" and Coon said she and other parents are grateful that AHCCCS is taking the initiative to continue paying parents.

"Arizona is by far one of the leading family caregiving supporters in our country," Coon said. "Many other states are trying to do similar things and our state is one of the only ones where the Medicaid department is making the initiation. ... The fact that we disagree on some of the parameters is small details."

Most states do not have a permanent program for paying parents as caregivers, said Meyers of the Arizona Developmental Disabilities Planning Council.

"We literally would only be one of a handful of states doing it," Meyers said.

Reach health care reporter Stephanie Innes at Stephanie.Innes@gannett.com or at 602-444-8369. Follow her on X, formerly Twitter: @stephanieinnes.

This article originally appeared on Arizona Republic: AZ may permanently pay parent caregivers. Public comment ends Monday