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The current SSA definition of Parkinsonian syndrome, which includes Parkinson's, is very outdated and, most significantly, does not recognize non-motor symptoms, such as depression or fatigue, as being aspects of Parkinsonisms.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:

  • Go to the comment form.
  • 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.
  • After you add your comments in the form:
  • Un-click the box that reads "I am submitting on behalf of a third party"
  • Click the box that reads "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)

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 [email protected] or 202-638-4101 ext. 103.

Sample Comment Text:

  • 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
  • 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!


Date originally posted: April 22, 2014.