The Compassionate Allowances Initiative (CAL)

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2 The Compassionate Allowances Initiative (CAL) CAL s objective is to quickly identify conditions that invariably meet Social Security disability standards CAL initiative began with a public outreach hearing in December conditions selected for initial rollout (October 27, 2008) 38 conditions added on March 1, conditions added on July 30, 2011 Reached 100 conditions as of July 30, 2011 Adding 13 more conditions on December 10, 2011 Planning to add new conditions in 2012

3 How Do We Add CAL Conditions CAL conditions are identified and 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)

4 Compassionate Allowances Public Outreach Hearings We have held seven hearings since 2007 The purpose of the hearings is to obtain medical expert and lay opinion on various possible candidate conditions Hearings are free and open to the public Hearing topics have included rare diseases, cancers, traumatic brain injury/stroke, early onset dementias, schizophrenia, cardiovascular diseases and multiple organ transplants, and autoimmune diseases National Institutes of Health has co-hosted each of the seven hearings Information and archived webcasts of the hearings are available at 4

5 CAL Hearings and Advocacy Groups As a result of the hearings, we ve built relationships with many advocacy groups including the: National Organization for Rare Disorders American Cancer Society Alzheimer s Association National Alliance for the Mentally Ill American Heart Association National Multiple Sclerosis Society Lupus Foundation 5

6 CAL Outreach: Moving Forward Budget restraints preclude us from planning CAL outreach hearings in the near future. We are continuing to reach out to advocacy organizations via meetings through teleconferencing, videoconferencing, etc. to learn more about potential conditions. We also plan to participate in webinars and conferences in the Baltimore/Washington area to share information about CAL. You may submit written comments about the Compassionate Allowances Initiative to:

7 National Institutes of Health Research In February of 2008, SSA signed a Memorandum of Understanding (MOU) with the National Institutes of Health (NIH) The MOU provides that NIH will help SSA to ensure that Compassionate Allowances are based on sound, up-to-date medical standards and science OCADO maintains a funded Interagency Agreement with NIH s Clinical Research Center This multi-year project leverages our data from the Disability Research File and combines it with the most current research regarding functioning and its relationship to rehabilitation outcomes

8 SSA-NIH Collaboration One of the activities under the SSA-NIH Collaboration is an effort to develop a data-driven method to quickly identify candidates for inclusion in the CAL program. To date, this collaboration has produced the following: A method to use SSA administrative data to construct survival profiles of current CAL conditions; A novel statistical test to determine whether any condition is a potential candidate for inclusion; A new list of proposed candidates

9 CAL Case Processing Matrix Claimant applies alleging a CAL condition Search and find software identifies CAL condition The impairment summaries are available to adjudicators at all levels (initial appeals) CALS may be manually added/removed at all adjudicative levels Case gets a CAL indicator alerting adjudicator that a case need to be fast-tracked Adjudicator has the option to click on hyperlink to an impairment summery Impairment summaries guide adjudicators in evaluation of evidence and policy application 9

10 Compassionate Allowances Impairment Summary ALTERNATE NAMES DESCRIPTION ULLRICH CONGENITAL MUSCULAR DYSTROPHY UCMD; Ullrich Disease; Ullrich Scleroatonic Muscular Dystrophy; Muscular Dystrophy Scleroatonic Ullrich Congenital Muscular Dystrophy (UCMD) is a rare form of congenital muscular dystrophy that is caused by mutations in the gene coding for the alpha chains of collagen VI (COL6A1, COL6A2, COL6A3), adversely affecting the production of collagen VI, which is needed for normal connective tissue and muscle function. UCMD is present at birth. Children born with UCMD generally have loss of muscle tone (hypotonia), loose joints (hyperextensibility), muscle weakness of the distal muscles (hands and feet), joint contractures, curvature of the spine (kyphosis), a wryneck (torticollis), hip dislocation, protruding heelbone (calcaneus), respiratory insufficiency, a round face with drooping of the lower lids, prominent ears (micrognathia) and skin changes (hyperkeratosis). Intelligence and brain activity are normal. Cardiac function is normal. DIAGNOSTIC TESTING, PHYSICAL FINDINGS, AND ICD-9-CM CODING The diagnosis is supported by abnormal immunoreactivity for collagen VI on muscle biopsies, genetic testing, serum creatine kinase (CK) concentration, and immunostaining of muscle tissue. EMG reveals myopathic changes while the nerve conduction velocity (NCV) is normal. ICD-9: Congenital hereditary muscular dystrophy 10

11 Compassionate Allowances Conditions 1. Acute Leukemia 2. Adrenal Cancer, 3. Alexander Disease (ALX), Neonatal and Infantile 4. Alstrom Syndrome 5. Amegakaryocytic Thrombocytopenia 6. Amyotrophic Lateral Sclerosis (ALS), Adult 7. Anaplastic Adrenal Cancer 8. Angelman Syndrome 9. Aortic Atresia 10. Astrocytoma, Grade III and IV 11. Ataxia Telangiectasia 12. Batten Disease 13. Bilateral Retinoblastoma 14. Bladder Cancer 15. Bone Cancer 16. Breast Cancer 17. Canavan Disease (CD) 18. Cerebro Oculo Facio Skeletal (COFS) Syndrome 19. Chronic Myelogenous Leukemia (CML), Blast Phase 20. Corticobasal Degeneration 21. Creutzfeldt-Jakob Disease (CJD), Adult 22. Cri du Chat Syndrome 23. Degos Disease, Systemic 24. Early-Onset Alzheimer s Disease 25. Edwards Syndrome, Trisomy Eisenmenger Syndrome 27. Endomyocardial Fibrosis 28. Ependymoblastoma, Child Brain Tumor 29. Esophageal Cancer 30. Farber's Disease (FD), Infantile 31. Fibrodysplasia Ossificans Progressiva 32. Friedreichs Ataxia (FRDA) 33. Frontotemporal Dementia (FTD), Picks Disease, Type A, Adult 34. Fukuyama Congenital Muscular Dystrophy 35. Gallbladder Cancer 36. Gaucher Disease (GD) Type II 37. Glioblastoma Multiforme, Adult Brain Tumor 38. Glutaric Acidemia Type II, Neonatal 39. Head and Neck Cancers, with distant metastasis or inoperable or uresectable 40. Heart Transplant Graft Failure 41. Heart Transplant Wait List, 1A/1B 42. Hemophagocytic Lymphohistiocytosis (HLH), Familial Type 43. Hypoplastic Left Heart Syndrome 44. Idiopathic Pulmonary Fibrosis 45. Infantile Neuroaxonal Dystrophy (INAD) 46. Infantile Neuronal Ceroid Lipofuscinoses 47. Inflammatory Breast Cancer (IBC) 48. Junctional Epidermolysis Bullosa, Lethal Type 49. Kidney Cancer, inoperable or unresectable 50. Krabbe Disease (KD), Infantile 51. Large Intestine Cancer, 52. Late Infantile Neuronal Ceroid Lipofuscinoses 53. Left Ventricular Assist Device (LVAD) Recipient 54. Leigh s Disease 55. Lesch-Nyhan Syndrome (LNS) 56. Lewy Body Dementia 57. Liver Cancer 58. Lowe Syndrome 11

12 Compassionate Allowances Conditions, con t 59. Malignant Multiple Sclerosis 60. Mantle Cell Lymphoma (MCL) 61. Maple Syrup Urine Disease 62. Merosin Deficient Congenital Muscular Dystrophy 63. Metachromatic Leukodystrophy (MLD), Late Infantile 64. Mitral Valve Atresia 65. Mixed Dementias 66. MPS I Hurler Syndrome 67. MPS II Hunter Syndrome 68. MPS III Sanfilippo Syndrome 69. Multicentric Castleman Disease 70. Multiple System Atrophy 71. Mucosal Malignant Melanoma 72. Neonatal Adrenoleukodystrophy 73. Niemann-Pick Disease (NPD), Type A 74. Niemann-Pick Disease, Type C 75. Non-Small Cell Lung Cancer 76. Ornithine Transcarbamylase (OTC) Deficiency 77. Osteogenesis Imperfecta (OI), Type II 78. Ovarian Cancer, 79. Pancreatic Cancer 80. Paraneoplastic Pemphigus 81. Patau Syndrome, Trisomy Peritoneal Mesothelioma 83. Pleural Mesothelioma 84. Pompe Disease, Infantile 85. Primary Cardiac Amyloidosis 86. Primary Central Nervous System Lymphoma 87. Primary Effusion Lymphoma 88. Primary Progressive Aphasia 89. Progressive Multifocal Leukoencephalopathy 90. Progressive Supranuclear Palsy 91. Pulmonary Atresia 92. Pulmonary Kaposi Sarcoma 93. Rett (RTT) Syndrome 94. Salivary Tumors 95. Sandhoff Disease 96. Single Ventricle 97. Small Cell Cancer, of the Large Intestine, Ovary, Prostate, or Uterus 98. Small Cell Lung Cancer 99. Small Intestine Cancer, with distant metastases or inoperable, unresectable or recurrent 100. Spinal Muscular Atrophy (SMA), Types 0 and Spinocerebellar Ataxia 102. Stomach Cancer, with distant metastases or inoperable, unresectable or recurrent 103. Subacute Sclerosing Panencephalitis 104. Tay Sachs Disease, Infantile Type 105. Thanatophoric Dysplasia, Type The ALS/Parkinsonism Dementia Complex 107. Thyroid Cancer 108. Tricuspid Atresia 109. Ullrich Congenital Muscular Dystrophy 110. Ureter Cancer, with distant metastases or inoperable, unresectable or recurrent 111. Walker Warburg Syndrome 112. Wolman Disease 113. Zellweger Syndrome 12

13 Additional Information Individuals may apply for benefits via our website: or The disability Starter Kit will assist the applicant in getting ready for the disability interview of online application. For more information, visit: For more information on Compassionate Allowances and to view the list of CAL conditions visit : 13