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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 outdated disability criteria for evaluating PWP had to change 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