The Parkinson's Action Network has provided leadership on advocating
for revision and updating the Social Security Administration rules on
disability claims. PAN has been working with SSA on this issue for a
number of years. Many PWP have noted how archaic the application forms
are (40+ years old) and that they don't reflect current knowledge of the
disease and its symptoms. PAN convinced the SSA officials that its
outdated disability criteria for evaluating PWP had to change
A PAN Action Alert for comments on the proposed rule changes was sent to
their mailing list of E-advocates last week.
Ray helped get the word out by posting this alert on the Parkiinsn list on
4/22 . (Thanks Ray --see her email below). I also had some problems at
first with the link. I think forwarded emails, the links don't always get
thru intact .
If you would like to receive PAN Action alerts and advocacy news
directly, you can sign up for them on the PAN home page at
http://www.parkinsonsaction.org/
Or call PAN at: 800-850-4726
linda
---------- Forwarded message ----------
From: Rayilyn Brown <[log in to unmask]>
Date: Tue, Apr 22, 2014 at 2:27 PM
Subject: Changes Proposed to Social Security Disability Rules for
Parkinson's
To: [log in to unmask]
From: Parkinson's Action Network (PAN)
Sent: Tuesday, April 22, 2014 10:10 AM
To: [log in to unmask]
Subject: Add Your Voice: Changes Proposed to Social Security Disability
Rules for Parkinson's
Once in 30 Years
The Social Security Administration (SSA) has issued a proposed rule
to revise current regulations used to evaluate whether people with
Parkinson's and other neurological disorders qualify for Social Security
disability insurance (SSDI), marking the first broad-scale overhaul of the
criteria since 1985. This is our opportunity as a community to
fundamentally change for the better how SSA recognizes Parkinsonian
syndrome and evaluates its effects for determining disability.
Why It Matters
The current SSA definition of Parkinsonian syndrome, which includes
Parkinson's, is very outdated and, most significantly, does not recognize
non-motor symptoms, such as depression or fatigue, as being aspects of
Parkinsonisms.
The proposed rule is a step in the right direction because non-motor
symptoms are acknowledged, but they are combined with motor symptoms in a
discussion of "physical functioning." We are concerned that, if the
proposed rule is adopted as written, SSA will still not view non-motor
aspects of Parkinsonism's as being independently disabling enough to
qualify one for SSDI. In addition, the proposed regulations do not appear
to acknowledge how variable Parkinsonian symptoms can be both from person
to person and from hour to hour for any one person.
How You Can Help
PAN is submitting comments on the revised rules that will address
these issues and others. But, we need your voice. Please amplify our
message and add your voice to the process by telling SSA about your
personal experience with a Parkinsonian syndrome by the filing deadline on
Monday, April 28.
Each comment will be recorded and counted! Sample comment text has
been provided below.
How to Submit Your Comments:
a.. Go to the comment form.
b.. Enter your comments. Personalize them to the extent you feel
comfortable or feel free to simply cut and paste the language below in the
comment box.
c.. Fill in any additional required information.
d.. Click continue and proceed to the next screen to Submit your
comments.
Note:
The comment form is embedded on the official public comment page for
the federal government at regulations.gov. If you have any trouble
accessing or using the form, please contact Jamie Tucker at
[log in to unmask] or 202-638-4101 ext. 103.
Sample Comment Text:
a.. We encourage you to replace the sample third paragraph with
your story and share with SSA how living with Parkinson's affects your
daily life and consider including as many examples of both your motor and
non-motor symptoms as you feel comfortable, or
b.. Please feel free to simply cut and paste the sample comment
text in its entirety.
As a member of the Parkinson's disease community, I appreciate the
opportunity to comment on RIN 0960-AF35, "Revised Medical Criteria for
Evaluating Neurological Disorders," proposed section 11.06B "Marked
Limitation in Physical Functioning." I applaud the Social Security
Administration for proposing much needed updates to the definitions and
standards used to evaluate neurological disorders like Parkinsonian
syndrome for disability.
I ask that you revise proposed section 11.06B to both clarify that
non-motor symptoms can be equally disabling in Parkinsonian syndromes and
to reflect that symptoms can fluctuate significantly from hour to hour and
minute to minute, often making job performance in a professional
environment very difficult.
People with Parkinsonian syndrome often present with fluctuations of
their motor capacity, including dyskinesia, asymmetrical limitations in the
extremities, and difficulties with speech and swallowing. At the same time,
the non-motor symptoms of Parkinsonian syndrome, including cognitive
impairments such as depression, anxiety, and fatigue may also severely
limit a person's ability to function in a professional environment. The
severity of any particular symptom or a combination of symptoms is
different for each person – and doctors struggle to predict how and when
they will manifest. It is critical that the final rule more explicitly
recognizes this reality.
Thank you for the opportunity to submit comments on this important
issue. I hope that final regulations will be issued in a timely manner.
Submit your Comments!
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