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Sounds like America has carefully imported some of the worst features of the UK system.
> Date: Thu, 1 May 2014 11:10:19 -0700
> From: [log in to unmask]
> Subject: Re: Changes Proposed to Social Security Disability Rules for Parkinson's
> To: [log in to unmask]
>
> 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 outdated disability criteria for evaluating PWP had to change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
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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2 February 2001, Week 1 January 2001, Week 5 January 2001, Week 4 January 2001, Week 3 January 2001, Week 2 January 2001, Week 1 December 2000, Week 5 December 2000, Week 4 December 2000, Week 3 December 2000, Week 2 December 2000, Week 1 November 2000, Week 5 November 2000, Week 4 November 2000, Week 3 November 2000, Week 2 November 2000, Week 1 October 2000, Week 5 October 2000, Week 4 October 2000, Week 3 October 2000, Week 2 October 2000, Week 1 September 2000, Week 5 September 2000, Week 4 September 2000, Week 3 September 2000, Week 2 September 2000, Week 1 August 2000, Week 5 August 2000, Week 4 August 2000, Week 3 August 2000, Week 2 August 2000, Week 1 July 2000, Week 5 July 2000, Week 4 July 2000, Week 3 July 2000, Week 2 July 2000, Week 1 June 2000, Week 5 June 2000, Week 4 June 2000, Week 3 June 2000, Week 2 June 2000, Week 1 May 2000, Week 5 May 2000, Week 4 May 2000, Week 3 May 2000, Week 2 May 2000, Week 1 April 2000, Week 5 April 2000, Week 4 April 2000, Week 3 April 2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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