4 JANUARY 21, 2021 RIDGEWOOD TIMES WWW.QNS.COM
Glendale family advocates for bill to allow
disabled COVID-19 patients a support person
BY ANGÉLICA ACEVEDO
AACEVEDO@SCHNEPSMEDIA.COM
@QNS
Fred D’Amico, a 30-year-old man
diagnosed with Asperger’s,
died of COVID-19 in March of
last year. His family, who lives in
Glendale, pleaded with the hospital
to let at least one of them stay with
him — but were denied access due to
pandemic restrictions.
Now, the family is advocating so
that no other family has to experience
the same heartache.
“I wake up every hour with this
pain in my chest,” Maria D’Amico,
Fred’s mother, told QNS in Spanish.
“I’m opening my heart so that people
do not have to go through what I am.
Nobody is going to bring my son
back.”
On March 27, Maria took Fred to
Good Samaritan Hospital in Long
Island with a fever. Maria, who held
Fred by his arm, said she was immediately
told to leave by hospital staff
and were given a business card to
call for updates.
Although the family left a cellphone
with Fred, they were devastated,
knowing their son wouldn’t be able
to discuss healthcare options with
his providers. In the following days,
they would stay in the hospital’s
parking lot, praying for their son’s
recovery.
“I needed to be there because I am
his voice,” Maria said, adding that
although they called the hospital
repeatedly, they rarely got through
to someone.
The following day, they were able
to speak with someone about Fred,
and were told he had been intubated.
The family, panicking, called the
hospital more oft en for updates, but
were told by hospital staff that they
needed to call less oft en.
On March 31, Maria received a call
from the hospital at 3 a.m. informing
her that there was nothing else they
could do for Fred, and that he would
be disconnected from the machines
keeping him alive. They were then
asked to make arrangements to pick
up his body from the hospital.
When they asked what caused his
death, Maria said they were given
little detail but were told it was ultimately
kidney failure. His offi cial
documentation, though, noted he
died of COVID-19.
Maria said she wasn’t given the
option to see him and say goodbye
in person nor through a video call.
They were only able to speak with
Fred through the cellphone he had
with him that fi rst day he was admitted
to the hospital, but didn’t hear
back from him again as he “didn’t
know how to use it.”
The family, who have lived in
Glendale for 16 years, believe they
could’ve at least given Fred some
comfort had they been allowed to stay
with him during his hospitalization.
It was the fi rst time he’d been without
Maria or his sister, his primary
caregivers.
“Many people think that people with
autism don’t have emotions, but they
are very aff ected by their surroundings
and by sudden changes,” Maria
said. “My son never went anywhere
without me or my daughter. I know
that being left alone, and surrounded
by machines was terrifying for him.
I know he would have wanted me
there to say goodbye. I believe that
is part of why he died.”
A spokesperson of Good Samaritan
Hospital said they followed guidelines
set forth by the New York State
Department of Health and the Center
for Disease Control for the safety of
patients, families and staff .
At the time Fred was hospitalized,
COVID-19 guidelines prevented visitation
to all hospitals.
“The COVID pandemic created
worldwide issues, but we rose to
the challenge and developed new
ways to enhance our service,” the
spokesperson said. “There were exceptions
to allow visitation in certain
circumstances, including end-of-life
situations, which precluded visitors
who were COVID positive.”
The spokesperson also indicated
that their records show they had
numerous conversation with Fred’s
mother, and attempts were made to
contact his father, but his voicemail
was full. They added that his sister
was permitted to visit the hospital
through the end-of-life exception.
The D’Amico family said his sister
was allowed a visitation when Fred
was already pronounced dead.
In line with the most recent CDC
guidelines, the Good Samaritan
Hospital, a nonprofi t hospital and a
member of Catholic Health Services
of Long Island, has suspended all visitations
as of December. Exceptions
for a support person to accompany
a patient are made on a case-by-case
basis, including for individuals with
special needs.
Last summer, the federal government
was investigating hospital visitation
rights for disabled COVID-19
patients in states like Connecticut,
Pennsylvania and Alabama, aft er
disability advocate groups made
complaints about support people
being banned from the facilities, according
to an NPR report.
In New York, Gov. Andrew Cuomo
passed the Emergency Disaster
Treatment Protection Act that protects
hospitals and other care facilities
from potential liability that
would arise from alleged decisions
related to the care of individuals
with COVID-19, from the initial emergency
declaration on March 7, 2020,
through its expiration.
But the D’Amico family is not looking
to pursue any legal action against
the hospital.
“This is not about getting justice
for me, but honoring my son, and
making sure that this does not happen
again to anyone else,” said Maria.
“We just had to go through Christmas
without our son, and I do not want
that experience for anyone else.”
Connie Altamirano, a community
activist who helped pass the Child
Victims Act in the state Legislature,
is representing the family aft er hearing
their story.
“Denying access to families like
the D’Amicos has nothing to do with
keeping people safe, because you are
actually sacrifi cing the right of people
with disabilities to receive the care
that they need,” Altamirano said.
Altamirano noted that pregnant
women were allowed an emotional
support person aft er advocating for
the rule change several months ago.
“People with disabilities also need
a support person as a medical necessity,”
Altamirano said. “We need to
change the law to accommodate them
as well.”
Queens Senator Joseph Addabbo
Jr. has introduced a law that would
do just that.
“While we understand the need to
limit the number of people inside of
the hospital during a pandemic, like
the one we are currently facing, it
is vitally important to ensure that
patients with communication defi -
ciencies are able to have someone
they trust with them to report to
medical staff the patient’s medical
history and needs,” said Addabbo.
“What happened to Fred, and others,
should never happen again.”
The new bill (S1035), would prohibit
hospitals from not allowing individuals
with disabilities, who are unable
to describe for themselves their
medical condition, from having an
essential support person accompany
them for the duration of their hospitalization
in response to a pandemic
or state disaster emergency.
The term “disability” is defi ned as
an individual having any condition
or disorder that makes it diffi cult
for an individual to communicate a
medical condition or everyday needs,
including but not limited to autism or
cerebral palsy. An “essential support
person” is defi ned as an individual
who frequently accompanies and
assists the individual with the
disability.
Assemblywoman Stacey Pheff er
Amato will be co-sponsoring the bill
in the State Assembly.
Altamirano is encouraging
families with similar experiences
to contact her via email at conniealtamiranopressinquires@
gmail.com
or via phone at 347-777-0841.
“No mother should have to go
through what Maria D’Amico has,
and I am grateful to advocate on her
family’s behalf. I appreciate Senator
Addabbo’s leadership in moving
quickly to introduce the bill,” said
Altamirano. “I see no reason why it
shouldn’t receive bipartisan support.
It should be passed immediately, before
the session ends. If anyone has
reservations, they need to ask themselves:
would you want happened to
Fred D’Amico to happen to your child
or loved one?”
Maria and Fred D’Amico. Courtesy of Addabbo’s offi ce
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