By Sethany Griffin

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

I am a
member of The Arc and both a provider for adults and children with disabilities
and a mother of an adult with autism and an intellectual delay. My son Karl is
19, and he typically attends an adult transition program five days a week where
he learns vocational skills in the hopes of someday finding him a paying job.
He also focuses on social interactions, self-advocacy, problem solving,
self-care skills and strength building through physical therapy. 

My son’s
transition program, like so many others, closed temporarily and without notice
in the early months of the coronavirus pandemic. Like many families, we were
left scrambling to ensure his needs were being met and that he wasn’t left
alone, grappling with the unknown timetable of when things would be back to

I work as
the Director of Family supports for a large non-profit agency for families like
myself, with children and adult family members with disabilities. My husband,
Dana, had just started a new job and was not yet eligible for leave time. Our
older son DJ, who is also Karl’s co-guardian, works as a direct service
professional at a day program for the same non-profit as I do. All three of
us are considered “essential workers.” We are also the only people who can
effectively support Karl at home.

It has
been—and continues to be—a huge struggle trying to juggle the work schedules of
three “essential” adults while ensuring someone is staying with my son who can
both understand and meet his needs. Karl is a wonderful young man. He loves all
things Marvel and can tell you anything you ever wanted to know about Marvel
heroes and the TV show “Supernatural.” He likes to ride his adult tricycle
around the neighborhood and swim, and he wants to make money to buy all the
Marvel Legends action figures in existence. When he is anxious, which is almost
always, he knits his brows and rocks in place. For the unfamiliar onlooker, he
can appear terrifying. He is also 6’6 and 330 pounds and can become aggressive
when he is frustrated or scared. This isn’t something that just anyone could
Ultimately, we decided that DJ would take an unpaid leave of absence to care
for his brother. DJ is still living with us, so we covered his rent and paid
for his food. But, going without a paycheck meant that he was no longer able to
purchase non-essentials or save any money. By covering his bills, we have made our
family financial situation even more precarious.

It is
unfair to all of us that he had to make this sacrifice, but we weren’t left
with any other choices.

Now that
our state has started to re-open, we find the struggle even harder. All four of
us are in one form or another back to work. When Karl returned to his program,
he did it in a hybrid fashion, He doesn’t do well with “remote teaching” so
those times were essentially useless and required a full-time caregiver. I am
lucky enough to be able to work some hours from home, and my husband has
started earning his paid time off. We are making it work, but this isn’t
what “vacation time” was supposed to be used for
. Right now, if Karl were
to spike a fever for any reason, he would be required to stay home for two
weeks. I don’t know what we are going to do when that happens, but we are a
strong and resilient family, so we will continue to brainstorm and try to find
viable solutions.

people with disabilities and their families, it is so important that paid leave
policies include all caregivers—not just parents. Siblings, cousins,
Godparents, aunts, uncles, and grandparents have all stepped in and tried to
help us. Paid leave for all caregivers would remove so much pressure from
families who are already struggling with the expenses of caring for an
individual with additional emotional and healthcare needs. A paid leave option
for all caregivers is long overdue.

The post Care During COVID-19: An “Essential” Working Family’s Story appeared first on The Arc.