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 regulations.gov. If you have any trouble accessing or using the form, please contact Jamie Tucker at [email protected].
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.
The Social Security Administration (SSA) is revising the 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.
These revisions include a substantially updated section for Parkinsonian syndrome, adding a broader definition and new ways to determine disability.
For nearly a decade, PAN has been working with the SSA to update the regulations used to determine SSDI eligibility. Our primary concern has been that the current definition of Parkinsonian syndrome, which includes Parkinson’s, used by SSA does not currently reflect a clear understanding of the disease – especially since it does not recognize the non-motor symptoms, such as depression or fatigue, associated with the disorders.
The proposed rule is a step in the right direction because non-motor symptoms are acknowledged and incorporated into the disability evaluation criteria for Parkinsonian syndrome. However, there are still aspects of the revised language that need modification and clarification from SSA. PAN is submitting formal comments that highlight a number of specific provisions in the proposed rule. Our comments may be grouped into three broader themes. Specifically, we want to ensure:
- The final rule takes into account the full spectrum of clinical evidence used to diagnose Parkinsonian syndrome and not limit disability eligibility to results from a rigid set of diagnostic tests that may not be useful in evaluating people with Parkinson’s;
- There is flexibility within the rule to recognize that Parkinsonian syndrome will present differently in each person from day to day – and the rule should reflect both motor symptoms that may be unilateral and unpredictable and non-motor symptoms like cognitive impairment, fatigue, anxiety, and depression – when evaluating disability; and
- Any requirement for patients to adhere to prescribed treatments for a set amount of time before applying for disability is more broadly defined as treatment that is optimized by both the physician and patient, which provides added health and safety protections.