PKD Life - Fall 2020 - 9

Ages & Stages

PKD DAY TO DAY

How to
Qualify
for Social
Security
Benefits

What you should know
if your PKD makes you
unable to work.
By Jessica Brown

you have PKD, you know there
W hen
may come a time when you're no

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longer able to do your job. But regardless
of what stage of the condition you're in or
how you feel at the moment, it's wise to
start familiarizing yourself with the process
of applying for Social Security Disability
Insurance (SSDI) now.
"The application requires you and your
doctor to provide evidence that you're
unable to work, and the experience can feel
overwhelming, which is why it is helpful to
have an advocate on your side," says Julia
Mettler, a disability advocate who works with
people who have end-stage kidney disease
at the University of Kansas Medical Center.
"And some people are denied benefits
the first time they apply, which can
be frustrating."
Here are the most common questions
people have about the process and some
helpful hints for getting your claim accepted.

tects
SSDI pro e
'r
you if you
r
no longe
o
able to d
.
your job

complete an Activities of Daily
Living (ADL) questionnaire,
which Social Security uses
to help evaluate the severity of your illness," Mettler
explains. You'll be asked
if you can perform basic
tasks, such as dressing and
grooming yourself and doing
household chores.
How can I improve
the odds that I'll
receive benefits?
Spare no detail, Mettler says.
"When you complete the ADL
questionnaire, be as specific
as possible," she explains. "If
the only way you can go to a
store is if someone drives you
there and the employees have
to help you shop, say that."
Shutt, who was denied several
times before being accepted,
agrees that details are key: "If
it hurts just to go to the bathroom, you need to say so."
Mettler also suggests
including documentation
of your disability from other
relevant healthcare providers.
For example, getting an evaluation from a physical therapist
or vocational specialist can
be helpful. "Depression and
anxiety caused by PKD can
also limit your ability to work,
so get documentation from
your mental health provider
if that's the case," she adds.
Finally, Mettler advises
working with a disability
advocate when you apply.
"We know the process and
can help make it less stressful, which is very important
when you feel so unwell,"
she says.

Q

At what point is PKD
considered a disability?
You can find the criteria at
ssa.gov/disability by searching
for "genitourinary disorders."
Some examples include the
need for chronic dialysis,
bone degeneration resulting
from kidney disease, and
complications such as
congestive heart failure.
Brande Shutt, of Springfield, Missouri, filed for benefits after her PKD-induced
hypertension started causing
brain aneurysms. "None of the
treatments the doctors tried
were working, so I wanted to
apply before I ended up having a stroke," she says.

Q

What kind of
information does
the government want?
You and your doctor will
have to submit your medical
history, reports from exams,
treatment records, test results
(scans, bloodwork, etc.), and
so on. "You'll also have to

Q

*

Information current as of September 2020.

P K D C U R E .O R G

PKD_FA20_09_PKDDayToDay.indd 9

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9/23/20 8:49 AM
http://www.ssa.gov/disability http://www.PKDCURE.ORG
PKD Life - Fall 2020

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