I received this email today from Richard Zyne of CurePSP about PSP, CBD, and MSA being added to the list of disorders approved for Compassionate Allowance by the Social Security Administration. In the attachment that accompanied the email (which I haven’t provided here), all four of the disorders in our support group — PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), MSA (multiple system atrophy), and LBD (Lewy body dementia) — are on the Compassionate Allowance list, effective 12/10/11. This means that those diagnosed with any of these four disorders will have an easier time to be approved for Social Security Disability.
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To All Board Members and Staff:
Good News—all of our Atypical Parkinsonisms have just been approved by the Social Security Administration for Compassionate Allowance. Commissioner Astrue made the announcement today and I just got off the phone with Art Spencer, Associate Commissioner, Office of Disability Programs.
The four disorders include PSP, CBD, MSA, and ALS/PDC [ALS/Parkinsonism Dementia Complex].
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, SSA considered which conditions are most likely to meet current definitions of disability.
Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer’s disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.
The decision to include our neurodegenerative disorders was based on the clinical information which we have provided over the past couple of years (Thank you Drs. Golbe and Steele) and it became clearly obvious to the Commissioner that they qualified for this program. I have attached the new list of disorders, which was sent to me by Art Spencer. See the last four on the list.
I am very pleased that CurePSP has been able to advocate on behalf of our patients for this important benefit.
Richard
Richard Gordon Zyne, DMin
President-CEO