Latest News: Updating Rules for Parkinson's

On February 25, 2014, SSA announced proposed revisions to the regulations used to evaluate whether people with Parkinson’s and other neurological disorders qualify for SSDI or SSI, marking the first broad-scale overhaul of the criteria since 1985. These proposed changes 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 or SSI 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.

PAN, with the help of an ad hoc committee of clinicians and advocates, submitted comments on April 28, 2014, urging SSA to ensure that the final rule takes into account the full spectrum of clinical evidence used to diagnose Parkinson’s, recognizes that Parkinson’s will present differently in each person from day to day, and reflects both motor and non-motor symptoms. In total, over 540 Parkinson’s-specific comments were submitted to SSA, just under 20 percent of the total number of comments on the proposed changes to the neurological conditions section.

SSA has given no timetable for issuing a final rule, but PAN will continue to monitor the ongoing revision process and engage with SSA officials as appropriate.