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Valley moms want paid parent care for children with disabilities to remain

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PHOENIX — Two Valley moms are petitioning to make a temporary coronavirus-era policy a permanent change for families with children who have disabilities.

Many parents over the past year took on new roles for their kids, like teacher.

Brandi Coon and Lauryn Van Rooy took on roles like applied behavior analyst, speech-language pathologist, occupational therapist and more.

Van Rooy and Coon are both mothers of children with disabilities.

“He had an infectious brain injury when he was six months old,” Coon said about her six-year-old son’s diagnosis. “That was bacterial meningitis which causes pretty significant brain damage.”

He has since been diagnosed with cerebral palsy and epilepsy with some physical and speech delays.

Van Rooy, meanwhile, said her 10-year-old son was diagnosed with autism just as he was going into kindergarten.

Both children prior to the pandemic worked with different specialists and aids regularly, with Coon saying roughly 15 different providers and caretakers had been involved in their week.

Each state is required to provide individuals with a disability an allotted number of state-provided care hours based on the individual’s needs. Those who provide the care are called Home and Community-Based Service Providers (HCBS).

In Arizona, these HCBS workers are provided and paid for by Arizona Health Care Cost Containment System Administration (AHCCCS) and the associated Developmental Disability Department (DDD).

But when the pandemic hit, families of children with disabilities were among the first to really shut down and isolate.

“We pretty much cut everything out and started doing virtual therapy and virtual school,” Coon said. “So essentially within a week to a week-and-a-half, I became the primary caregiver, fulfilling those 15 different people roles.”

Arizona parents before the pandemic were excluded from being paid providers for their children.

Acknowledging the high risk and difficult position families of children with disabilities were in, the state expanded the existing policies to now let parents become HCBS.

This means parents like Coon and Van Rooy were now being paid to pick up the slack when their families were isolated, which Van Rooy said provided some much-needed relief.

“Having there be an option where parents were able to become providers during a really uncertain time was, I think, such a huge blessing to a lot of the families that we have in our disability community,” Van Rooy said.

This silver-lining opportunity also proved to be more beneficial for the children in some cases.

“We’ve talked to several different parents who, for the first time, have been able to give their child consistent care,” Coon said. “The struggle that we often face is that we have a lot of provider turnover due to a few different reasons, but from our experience when we have high provider turnover, the parent is the one filling the gaps and providing that care for the child when no one else is able to come in.

“That kind of prevents the parent who is the primary caregiver from being able to usually hold down a traditional position or consistent income.”

In the 2021 Case for Inclusion report, as in the 2020 report, caretaker turnover rates exceed 50% largely in part to low pay, which averages about $12 an hour nationwide.

Coon and Van Rooy aren’t the only parents breathing a little easier since the recent change.

“[One parent of a teen with Spinal Muscle Atrophy told us] her daughter is a teenage girl and she has a lot of privacy concerns and things like that associated with how she’s bathed and how she’s fed,” Coon said. “And she wants someone who she really trusts to perform those daily living tasks for her.

“She expressed that we give our elder adults with disabilities the option for family to care for their personal needs and we give them the dignity of that choice, so why are we not giving that choice to our children?

“This program has allowed her daughter to… be with the person who gives her the most comfort and who she feels the most safe with,” Coon said.

However, the big concern now is when the extension runs out.

Right now there is no real knowledge around when this program may end because it was based on the pandemic and how long the state continues to acknowledge the need for it.

That’s why Coon and Van Rooy have decided to petition AHCCS and DDD to keep this as a permanent option for Arizona families of children with disabilities.

“We’re not advocating to not have any providers outside the family because we all need balance, we all need to figure out when us as parents need breaks, when we want to provide the care ourselves, so we can custom tailor what is best for our child,” Coon said.

The two have created an online petition and as of April 1, were more than halfway to their 5,000 signature goal.

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