Social Security Disability Insurance (SSDI) (Title II) Supplemental Security Income (SSI) (Title XVI)

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2 SSA administers two disability programs under the Social Security Act: Social Security Disability Insurance (SSDI) (Title II) Supplemental Security Income (SSI) (Title XVI) 2

3 We consider you disabled under Social Security rules if: You cannot do work that you did before We decide that you cannot adjust to other work because of your medical condition(s); and Your disability has lasted or is expected to last for at least one year or to result in death SSA does not pay partial or short-term disability benefits

4 Goal-- Quickly identify conditions that invariably meet Social Security disability standards CAL moves individuals to the head of the line for a disability decision It is not a separate program from the SSDI and SSI programs Initiative began with public outreach hearing in conditions selected for initial rollout (October 27, 2008) 113 conditions as of December 10, new conditions effective August 2012

5 SSA identifies and develops CAL conditions based on information and feedback from: Public outreach hearings Advocacy groups Social Security and Disability Determination Service communities Counsel of medical and scientific experts Research with the National Institutes of Health (NIH)

6 Seven hearings since 2007 Hearings on rare diseases, cancers, traumatic brain injury/stroke, early onset dementias, schizophrenia, cardiovascular diseases and multiple organ transplants, and autoimmune diseases Obtain medical expert and lay opinion on various possible conditions National Institutes of Health co-hosted each hearing Hearings are free and open to the public Information and archived webcasts of the hearings available on our website 6

7 Relationships with advocacy groups include: Alzheimer s Association American Cancer Society American Heart Association Lupus Foundation National Alliance for the Mentally Ill National Multiple Sclerosis Society National Organization for Rare Disorders 7

8 There are several ways to apply for benefits: Visit our website at to apply online Call or visit any Social Security office to schedule an appointment Contact us toll-free at (TTY )

9 We ask claimants to: tell us about your condition the treatment you ve received for your condition any medications that you are taking your educational background past work history provide us permission to request medical records from your doctors

10 Application forwarded to the State Disability Determination Services (DDS) agency DDS contacts the medical sources DDS reviews statement of your daily activities Applicants may need to attend a consultative examination DDS makes a disability decision on your claim

11 1. Is there substantial gainful activity? 2. Is the impairment severe? 3. Does the impairment meet or equal a medical listing? 4. Can the claimant perform any of their past relevant work? 5. Can the claimant perform any other type of work?

12 Claimant applies alleging a CAL condition Search and find software identifies CAL condition 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 summary The impairment summaries are available to adjudicators at all levels (initial appeals). CALS may be manually added/removed at all adjudicative levels. We apply the same standard of disability to all claims, including claims identified for the CAL process. Impairment summaries guide adjudicators in evaluation of evidence and policy application 12

13 ALTERNATE NAMES DESCRIPTION MALIGNANT MULTIPLE SCLEROSIS Malignant MS; Marburg Variant Multiple Sclerosis; Marburg Variant MS; Fulminant Multiple Sclerosis; Aggressive MS; Advanced MS Malignant Multiple Sclerosis (Malignant MS) is an aggressive and rare form of MS. It is characterized by rapidly progressive inflammation and destruction of myelin (protective covering surrounding the nerves) and increased formation of lesions and plaque in the brain and spine. The loss of myelin affects the brain s ability to transmit electrochemical impulses between the nerve cells of the brain, and the spinal cord, resulting in diminished or loss of neurological functioning. People with this form of MS experience weakness in their extremities, difficulties with coordination and balance, spasticity, and paresthesias (abnormal sensory feelings of numbness and prickling sensations). Speech impediments, tremors, dizziness, hearing loss, changes in vision, bowel and bladder difficulties, falls, and cognitive impairments are other frequent complaints. As the disease progresses lesions develop in the areas of the brain responsible for information processing, resulting in cognitive impairments such as difficulties with concentration, attention, memory, language, and judgment. People with malignant MS can have damage to regions of the brain responsible for behavior and emotions resulting in psychotic disorders such as manic depression and paranoia. DIAGNOSTIC TESTING, PHYSICAL FINDINGS, AND ICD-9-CM CODING There is no single test to detect malignant MS. It may be difficult to distinguish between a diagnosis of malignant MS and acute disseminated encephalomyelitis (ADEM) because of timing of the occurrence of plaques in the brain tissue. A neurological exam is performed to assess symptoms and to rule out other possible disorders. Analysis of the cerebrospinal fluid is also helpful for the diagnosis of malignant MS. Neuro-imaging technologies, such as magnetic resonance imaging (MRI), diffusion-tensor magnetic resonance imaging (DT-MRI), and computerized brain tomography are used to detect central nervous system lesions, myelin loss, white matter abnormalities, and other physical changes in the brain.. ICD-9: 340 AL, 340 AZ, and

14 No CAL Hearings planned in the near future due to budget restraints Reach out to advocacy organizations via a variety of meeting formats You may submit written comments or provide the names of potential conditions to: Compassionate.Allowances@ssa.gov

15 1. Acute Leukemia 2. Adrenal Cancer, with distant metastases or inoperable, unresectable or recurrent 3. Aicardi-Goutieres Syndrome 4. Alexander Disease (ALX), Neonatal and Infantile 5. Alobar Holoprosencephaly 6. Alpers Disease 7. Alpha Mannosidosis Type II/III 8. ALS/Parkinsonism Dementia Complex 9. Alstrom Syndrome 10. Amegakaryocytic Thrombocytopenia 11. Amyotrophic Lateral Sclerosis (ALS) 12. Anaplastic Adrenal Cancer, with distant metastases or inoperable, unresectable or recurrent 13. Angelman Syndrome 14. Aortic Atresia 15. Astrocytoma, Grade III and IV 16. Ataxia Telangiectasia 17. Batten Disease 18. Bilateral Retinoblastoma 19. Bladder Cancer, with distant metastases or inoperable or unresectable 20. Breast Cancer, with distant metastases or inoperable or unresectable 21. Canavan Disease (CD) 22. Carcinoma of Unknown Primary Site 23. Cerebro Oculo Facio Skeletal (COFS) Syndrome 24. Cerebrotendinous Xanthomatosis 25. Child Neuroblastoma 26. Child Non-Hodgkin Lymphoma 27. Chondrosarcoma with Multimodal therapy 28. Chronic Myelogenous Leukemia (CML), Blast Phase 29. Cornelia de Lange Syndrome-Classic Form 30. Corticobasal Degeneration 31. Creutzfeldt-Jakob Disease (CJD), Adult 32. Cri du Chat Syndrome 33. Degos Disease, Systemic 34. Early-Onset Alzheimer s Disease 35. Edwards Syndrome, Trisomy Eisenmenger Syndrome 37. Endomyocardial Fibrosis 38. Ependymoblastoma, Child Brain Tumor 39. Esophageal Cancer 40. Ewings Sarcoma 41. Farber's Disease (FD), Infantile 42. Fibrodysplasia Ossificans Progressiva 43. Follicular Dendritic Cell Sarcoma, with metastases 44. Friedreichs Ataxia (FRDA) 45. Frontotemporal Dementia (FTD), Picks Disease, Type A, Adult 46. Fucosidosis Type Fukuyama Congenital Muscular Dystrophy 48. Galactosialidosis Early Infantile Type 49. Gallbladder Cancer 50. Gaucher Disease (GD) Type II 51. Glioblastoma Multiforme, Adult Brain Tumor 52. Glioma Grade III and IV 53. Glutaric Acidemia Type II, Neonatal 54. Hallervorden-Spatz Disease 55. Head and Neck Cancers, with distant metastasis or inoperable or uresectable

16 56. Heart Transplant Graft Failure 57. Heart Transplant Wait List, 1A/1B 58. Hemophagocytic Lymphohistiocytosis (HLH), Familial Type 59. Hepatoblastoma 60. Histiocytosis 61. Hutchinson-Gilford Progeria Syndrome 62. Hydranencephaly 63. Hypocomplementemic Urticarial Vasculitis 64. Hypophosphatasia Perinatal lethal form 65. Hypoplastic Left Heart Syndrome 66. I Cell Disease 67. Idiopathic Pulmonary Fibrosis 68. Infantile Free Sialic Acid Storage Disease 69. Infantile Neuroaxonal Dystrophy (INAD) 70. Infantile Neuronal Ceroid Lipofuscinoses 71. Inflammatory Breast Cancer (IBC) 72. Junctional Epidermolysis Bullosa, Lethal Type 73. Juvenile Onset Huntington Disease 74. Kidney Cancer, inoperable or unresectable 75. Krabbe Disease (KD), Infantile 76. Kufs Disease Type A and B 77. Large Intestine Cancer, with distant metastasis or inoperable, unresectable or recurrent 78. Late Infantile Neuronal Ceroid Lipofuscinoses 79. Left Ventricular Assist Device (LVAD) Recipient 80. Leigh s Disease 81. Lesch-Nyhan Syndrome (LNS) 82. Lewy Body Dementia 83. Lissencephaly 84. Liver Cancer 85. Lowe Syndrome 86. Lymphomatoid Granulomatosis Grade III 87. Malignant Brain Stem Glioma Childhood 88. Malignant Melanoma with metastases 89. Malignant Multiple Sclerosis 90. Mantle Cell Lymphoma (MCL) 91. Maple Syrup Urine Disease 92. Mastocytosis Type IV 93. Medulloblastoma with metastasis 94. Merkel Cell Carcinoma with metastases 95. Merosin Deficient Congenital Muscular Dystrophy 96. Metachromatic Leukodystrophy (MLD), Late Infantile 97. Mitral Valve Atresia 98. Mixed Dementias 99. MPS I Hurler Syndrome 100. MPS II Hunter Syndrome 101. MPS III Sanfilippo Syndrome 102. Mucosal Malignant Melanoma 103. Multicentric Castleman Disease 104. Multiple System Atrophy 105. Myocolonic Epilepsy and Ragged Red Fibers Syndrome 106. Neonatal Adrenoleukodystrophy 107. Nephrogenic Systemic Fibrosis 108. Niemann-Pick Disease (NPD), Type A 109. Niemann-Pick Disease, Type C 110. Non-Small Cell Lung Cancer, with metastases to or beyond the hilar nodes or inoperable or recurrent

17 111. Obliterative Bronchiolitis 112. Ohtahara Syndrome 113. Ornithine Transcarbamylase (OTC) Deficiency 114. Orthochromatic Leukodystrophy with Pigmented Glia 115. Osteogenesis Imperfecta (OI), Type II 116. Osteosarcoma, formerly known as Bone Cancer - with distant metastases or inoperable or unresectable 117. Ovarian Cancer, 118. Pancreatic Cancer 119. Paraneoplastic Pemphigus 120. Patau Syndrome, Trisomy Pearson Syndrome 122. Pelizaeus-Merzbacher Disease Classic Form 123. Pelizaeus-Merzbacher Disease Connatal Form 124. Peripheral Nerve Cancer metastatic or recurrent 125. Peritoneal Mesothelioma 126. Perry Syndrome 127. Pleural Mesothelioma 128. Pompe Disease, Infantile 129. Primary Cardiac Amyloidosis 130. Primary Central Nervous System Lymphoma 131. Primary Effusion Lymphoma 132. Primary Progressive Aphasia 133. Progressive Multifocal Leukoencephalopathy 134. Progressive Supranuclear Palsy 135. Pulmonary Atresia 136. Pulmonary Kaposi Sarcoma 137. Rett (RTT) Syndrome 138. Rhabdomyosarcoma 139. Rhizomelic Chondrodysplasia Punctata 140. Salivary Tumors 141. Sandhoff Disease 142. Schindler Disease Type Single Ventricle 144. Small Cell Cancer, of the Large Intestine, Ovary, Prostate, or Uterus 145. Small Cell Lung Cancer 146. Small Intestine Cancer, with distant metastases or inoperable, unresectable or recurrent 147. Smith Lemli Optiz Syndrome 148. Spinal Muscular Atrophy (SMA), Types 0 and Spinal Nerve Root Cancer metastatic or recurrent 150. Spinocerebellar Ataxia 151. Stiff Person Syndrome 152. Stomach Cancer, with distant metastases or inoperable, unresectable or recurrent 153. Subacute Sclerosing Panencephalitis 154. Tabes Dorsalis 155. Tay Sachs Disease, Infantile Type 156. Thanatophoric Dysplasia, Type Thyroid Cancer 158. Tricuspid Atresia 159. Ullrich Congenital Muscular Dystrophy 160. Ureter Cancer, with distant metastases or inoperable, unresectable or recurrent 161. Walker Warburg Syndrome 162. Wolf-Hirschhorn Syndrome 163. Wolman Disease 164. Xeroderma Pigmentosum 165. Zellweger Syndrome

18 For more information on Compassionate Allowances and to view the list of CAL conditions visit : 18

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