REMINDER: Tell the Social Security Administration Your Parkinson's Story

Our Chance to Impact Disability Rules for Parkinson's

Today, Monday April 28 at 11:59PM ET, is your last opportunity to submit comments to the Social Security Administration (SSA) about its proposed revisions to rules used to evaluate whether people with Parkinson’s and other neurological disorders qualify for Social Security disability insurance (SSDI).
This is our best chance in the last 30 years as a community to fundamentally change for the better how SSA recognizes Parkinsonian syndrome and evaluates its effects for determining disability. Please take a few minutes to share your story.

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The current SSA definition of Parkinsonian syndrome, which includes Parkinson’s, is very outdated and, most significantly, does not recognize non-motor symptoms, such as depression or fatigue, as being aspects of Parkinsonisms.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, but we are still 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 to Submit Your Comments:

  • Go to the comment form.
  • Enter your comments.
    • We encourage you to replace the sample third paragraph in the language provided below with your story, and share with SSA how living with Parkinson's affects your daily life. Consider including as many examples of both your motor and non-motor symptoms as you feel comfortable, or
    • Feel free to simply cut and paste the language below in the comment box.
  • After you add your comments in the form:
    • Unclick the box that says "I am submitting on behalf of a third party"
    • Click the box that says "I want to provide my contact information" and fill out the boxes provided
    • Under the category box, select NA (this should allow you to proceed to the Review and Submission page after you push continue)

The comment form is embedded on the official public comment page for the federal government at If you have any trouble accessing or using the form, please contact Jamie Tucker at [email protected] or 202-638-4101 ext. 103.

Sample Comment Text:
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!

Date originally posted: April 28, 2014.