QUEEN CREEK –Tyson Coon turns 9 this November. He enjoys studying and watching
Disney motion pictures, corresponding to “Frozen” or “Moana.” He’s the oldest of three
boys, whose names all start with the letter T.

When Tyson was 6 months previous, he had bacterial meningitis that precipitated
what his mom, Brandi Coon, described as “large strokes all through
his mind.” Consequently, Tyson has a extreme kind of epilepsy often known as
Lennox-Gastaut syndrome, cerebral palsy, right-sided blindness and oral
dysphagia, a situation that impacts his mouth, tongue and lips.

These diagnoses have completely different impacts on his life. Due to his
dysphagia, Tyson makes use of a gastrostomy tube that delivers foods and drinks
on to his abdomen. He additionally makes use of an alternate communication
gadget that permits him to press buttons to pick out phrases he desires to
say. Due to Lennox-Gastaut syndrome, he has two or extra seizures
every day.

In 2020, because of the COVID-19 pandemic, the Arizona Well being
Care Price Containment System (AHCCCS) requested and was granted
emergency flexibility to make use of funds to pay dad and mom for offering
specialised care to their kids underneath 18. Although the flexibleness was
beforehand prolonged, it’s presently set to run out in March 2024. A
proposal submitted by AHCCCS to the Heart for Medicare and Medicaid
Companies (CMS) this September, nonetheless, would completely prolong the
program, permitting mum or dad caregivers who meet direct care employee
necessities to be paid for as much as 40 hours per week.

Brandi Coon is a type of mum or dad caregivers and the co-founder of
the Elevating Voices Coalition, an Arizona group that advocates for
a everlasting paid mum or dad caregiver program. Coon began being paid as a
caregiver underneath the emergency flexibility provision after going by way of
coaching in 2020.

“In a single day, I changed into about 15 completely different individuals,” stated Coon about
caring for her son throughout the COVID-19 public well being emergency.

“I used to be not solely his (Tyson’s) mother, however I used to be his therapist. I used to be his
caregiver. I used to be his nurse. I used to be his instructor. And I needed to instantly
assume all these roles with the assistance of, you already know, professionals on
Zoom.”

At present, Coon continues to be being paid for offering care to her son,
although Ronda Barnes, Tyson’s different paid caregiver, continues to come back and
help with Tyson’s varied therapies, together with speech and bodily
remedy. Barnes has been Tyson’s paid caregiver since final December, and
is, Coon estimated, the non-familial caregiver who has spent the
second-longest period of time with Tyson. Tyson himself, Coon stated, has
had “in all probability about 10 completely different aides” over the course of his life at
this level.

Barnes is supportive of Coon’s advocacy for paid mum or dad caregivers.
She stated there isn’t numerous specialised care of this type out there.

“I believe it’s nice. I believe, you already know, if you happen to can’t go to work
as a result of … you’ll be able to’t depart the kid alone … I believe they need to receives a commission
to assist…similar to I receives a commission.”

Coon herself has needed to make selections about work so as to be out there to take care of Tyson.

“I’ve created it (my enterprise) in order that it’s extraordinarily versatile, so
that if I … have been to be within the hospital with him for 2 weeks, that my
enterprise that I run wouldn’t undergo.”

In 2020, in accordance with KFF, an estimated 5.8 million individuals used paid
long-term care companies, together with help with consuming, hygiene,
remedy administration and dressing. In response to PHI (previously the
Paraprofessional Healthcare Institute), a company that advocates
for and conducts analysis on direct care staff, together with these
offering at-home care, 15% of house care staff dwell in households
under the federal poverty line and 16% of house care staff work extra
than 40 hours per week.

“It’s a workforce with numerous turnover. It’s a workforce that
doesn’t pay notably effectively and it’s a workforce that has numerous
demanding necessities and emotional necessities of the employee,” stated
Alex Demyan, assistant director for the Division of Neighborhood Advocacy
and Intergovernmental Relations at AHCCCS.

“When there’s a niche between that assessed want and the fast
availability of suppliers, dad and mom need to sort of decide up the slack
there,” Demyan stated. “Traditionally, they haven’t been reimbursed for
that work, so … we sort of view this program as a step in the fitting
course to assist tackle that workforce want.”

Although Coon says she’s pleased with the care she and Barnes present for
Tyson, she has heard of different households having issue retaining
caregivers.

“One of many … struggles that households have is like, ‘OK, I get a
nice supplier, however then six months later, they’re not there,’” stated
Coon.

For Coon, figuring out her son’s wants as a mom enhances her capacity to take care of him.

“Oftentimes when an out of doors care supplier is available in, they’ve acquired
basic coaching, however they don’t have particular coaching on what my youngster
wants,” Coon stated.

“And so, usually I’ll present wherever from 40 to 60 further
hours of coaching on my youngster as soon as that individual begins, to get them
caught up to the mark and to maintain him safely.”

At present, paid mum or dad caregivers in Arizona can invoice a limiteless
variety of caregiving hours. The AHCCCS proposal, nonetheless, plans to part
down the allowed quantity of billable hours, beginning with a limitation
of 80 hours per week from Feb. 1 to Might 31, 2024, and taking place to 40
hours per week by the top of 2024.

“In a super circumstance, the kids would have outdoors suppliers
for that care that’s above and past 40 hours per week and hopefully a
lot of households do present that assist as a result of that’s actually wanted,”
Coon stated.

“However what we’re hoping is that the state will permit for a flexibility
or an exception clause to households who actually can’t discover that outdoors
assist above and past 40 (hours).”

Because the proposal awaits federal motion, Tyson’s household and caregiver Barnes proceed to take care of him and assist his wants.