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Here is a link. I hope the form works! Kathleen http://www.regulations.gov/#!submitComment;D=SSA-2006-0140-0059 On 24 April 2014 22:12, Bob Allison <[log in to unmask]> wrote: > I seoond Tony's comment. > ---- Rayilyn Brown <[log in to unmask]> wrote: > > 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 includes Parkinson's, is very outdated and, most significantly, does not 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