Social Security's Compassionate Allowances Outreach Hearing on Autoimmune Diseases
Posted 15 March 2011 - 04:43 PM
you can get a live webcast of the March 16th meeting (on the Social Security Administration's website).
(Although, I have to say, I've never attempted to view a webcast , hopefully it's just as easy as following the link!!)
Hope this hearing will help those of us struggling to get our disability through Social Security streamlined and approved. We'll see!
Posted 16 March 2011 - 11:30 AM
Posted 16 March 2011 - 09:55 PM
Posted 17 March 2011 - 06:51 AM
We can't replay the webcast yet, but since there are the 6 previous compassionate allowance hearings available to watch at our convenience on Social Security's website (from SSA's home page, just search for "compassionate allowances" and go to the Compassionate Allowance home page), I'm sure that at some point yesterday's hearing will be available.
The hearing consisted of presentations from various rheumatologists and autoimmune associations - they had lists of autoimmune diseases, outlined symptoms, progression, prognosis, current treatments available as well as clinical trials and other research being conducted. They had 4 patients (1 each with multiple sclerosis, lupus, diffuse scleroderma and Sjogren's) give their testimony about their disease, including delays in diagnosis, progression of disabling features, their difficulties in day-to-day living, as well as their frustrations navigating through Social Security's "hoops". The belief that since many people with autoimmune disease "look" good, some of their disabling symptoms, such as pain and fatigue, are minimized or ignored by SSA, was emphasized.
The goal of the hearing was to identify diseases, or specific aspects of those diseases, especially those with few effective medical regimens available to reverse or treat the condition, that are considered so severe that documentation of such would automatically quality a patient for permanent disability. Specifically for scleroderma, for example, it was suggested that a rheumatologist's diagnosis of diffuse scleroderma, or pulmonary hypertension, or limited scleroderma with severe GI features, should be alone sufficient to qualify for a compassionate allowance, as these manifestations of the disease are so debilitating.
Don't know how long Social Security's process of evaluating this data, and coming up with additions to the Compassionate Allowance list is, but at least there is hope that there will be some progress towards this goal.
Hope today finds you well, and Happy St. Patrick's Day to you all!
Posted 17 March 2011 - 11:53 AM