Social Security Adds 38 New Compassionate Allowance Conditions

Discussion in 'Fibromyalgia Main Forum' started by JLH, Feb 16, 2010.

  1. JLH

    JLH New Member

    News Release
    Social Security Adds 38 New
    Compassionate Allowance Conditions
    Expansion Will Speed Benefits to Thousands of Americans with Disabilities
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    Michael J. Astrue, Commissioner of Social Security, today announced that the agency is adding 38 more conditions to its list of Compassionate Allowances. This is the first expansion since the original list of 50 conditions - 25 rare diseases and 25 cancers - was announced in October 2008. The new conditions range from adult brain disorders to rare diseases that primarily affect children. The complete list of the new Compassionate Allowance conditions is attached.

    “The addition of these new conditions expands the scope of Compassionate Allowances to a broader subgroup of conditions like early-onset Alzheimer’s disease,” Commissioner Astrue said. “The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.”

    Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits. It allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals. In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health, the Alzheimer’s Association, the National Organization for Rare Disorders, and other groups.

    "The diagnosis of Alzheimer's indicates significant cognitive impairment that interferes with daily living activities, including the ability to work," said Harry Johns, President and CEO of the Alzheimer's Association. "Now, individuals who are dealing with the enormous challenges of Alzheimer's won't also have to endure the financial and emotional toll of a long disability decision process."

    “This truly innovative program will provide invaluable assistance and support to patients and families coping with severely disabling rare diseases,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD). “On behalf of those patients and families, I want to thank Commissioner Astrue and his enthusiastic team for creating and now expanding a program that will have a direct impact on the quality of life of thousands of individuals."

    “The initiative not only assists those whose applications are quickly processed, but also assists those whose applications need more time and attention from SSA adjudicators,” said Marty Ford, Co-Chair, Social Security Task Force, Consortium for Citizens with Disabilities. “We are pleased to see today's expansion and look forward to working with Commissioner Astrue on further expansion of this decision-making tool and other ways to expedite determinations and decisions for disability claims.”

    “We will continue to hold hearings and look for other diseases and conditions that can be added to our list of Compassionate Allowances," Commissioner Astrue said. “There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions.”

    Social Security will begin electronically identifying these 38 new conditions March 1.

    For more information about the agency’s Compassionate Allowances initiative, go to


    New Compassionate Allowance Conditions

    1. Alstrom Syndrome
    2. Amegakaryocytic Thrombocytopenia
    3. Ataxia Spinocerebellar
    4. Ataxia Telangiectasia
    5. Batten Disease
    6. Bilateral Retinoblastoma
    7. Cri du Chat Syndrome
    8. Degos Disease
    9. Early-Onset Alzheimer’s Disease
    10. Edwards Syndrome
    11. Fibrodysplasia Ossificans Progressiva
    12. Fukuyama Congenital Muscular Dystrophy
    13. Glutaric Acidemia Type II
    14. Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
    15. Hurler Syndrome, Type IH
    16. Hunter Syndrome, Type II
    17. Idiopathic Pulmonary Fibrosis
    18. Junctional Epidermolysis Bullosa, Lethal Type
    19. Late Infantile Neuronal Ceroid Lipofuscinoses
    20. Leigh’s Disease
    21. Maple Syrup Urine Disease
    22. Merosin Deficient Congenital Muscular Dystrophy
    23. Mixed Dementia
    24. Mucosal Malignant Melanoma
    25. Neonatal Adrenoleukodystrophy
    26. Neuronal Ceroid Lipofuscinoses, Infantile Type
    27. Niemann-Pick Type C
    28. Patau Syndrome
    29. Primary Progressive Aphasia
    30. Progressive Multifocal Leukoencephalopathy
    31. Sanfilippo Syndrome
    32. Subacute Sclerosis Panencephalitis
    33. Tay Sachs Disease
    34. Thanatophoric Dysplasia, Type 1
    35. Ullrich Congenital Muscular Dystrophy
    36. Walker Warburg Syndrome
    37. Wolman Disease
    38. Zellweger Syndrome


    SSA Press Office 440 Altmeyer Building 6401 Security Blvd. Baltimore, MD 21235
    410-965-8904 FAX 410-966-9973
  2. victoria

    victoria New Member

    That's nice, every penny helps, that's for sure.


    PS: but can't help adding, SSI is so small and MedicAid has so few 'good doctors'... the system is a travesty.