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Linda, Yes, the proposed rule changes, if enacted, represent a huge step forward in recognition of the many ways in which patients are affected by this rotten disease. Clearly, PAN worked very hard to get the archaic disability criteria for PD updated, and for this we can all be thankful. Kathleen On 29 April 2014 19:51, 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 outdated disability criteria for evaluating PWP had to change 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