I posted PAN notice immediately when I got it on the 22nd.   and I delete 
things fast.

-----Original Message----- 
From: Bob Allison
Sent: Wednesday, April 30, 2014 10:41 AM
To: [log in to unmask]
Subject: Re: Fwd: Changes Proposed to Social Security Disability Rules for 
Parkinson's

Linda
Thank you for your input.  As a long time supporter of PAN, I rely on them 
to be the guard dog in DC for PD.  It seems that they are on top of the 
issue so why such short notice for comments.  In a previous life, I helped 
prepare responses to NPRM's and 90 days was the min response time.  I thank 
you, Ray, and everyone involved.
Bob
---- linda herman <[log in to unmask]> wrote:
> 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 outdated disability criteria for evaluating PWP  had to change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!
>
>
>
>
>
>       Unsubscribe
>
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