 |
 |
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 outdated disability criteria for evaluating PWP had to change 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