Thirty-Eight New Compassionate Allowance Conditions

The snowstorm is not preventing Social Security's Press Office from doing its job. Here is another press release from the agency this morning:

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 www.socialsecurity.gov/compassionateallowances.

###

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

The only definitive way of diagnosing Alzheimer's disease is with a brain biopsy and those are rarely done. I predict that putting early onset Alzheimer's on the list will mean nothing since Social Security will just claim that there is inadequate proof that the claimant is suffering from Alzheimer's until the claimant is institutionalized.