Compassionate Allowances 101

1. Compassionate Allowances 101

2. SSA’s Two Disability Programs SSA administers two disability programs under the Social Security Act: • Social Security Disability Insurance (SSDI) (Title II) • Supplemental Security Income (SSI) (Title XVI)

3. Social Security’s Definition of Disability • The inability to engage in any substantial gainful activity • By reason of any medically determinable impairment(s) (physical or mental) • Which can be expected to result in death or • Which has lasted or can be expected to last for a continuous period of not less than 12 months SSA does not pay partial or short-term disability benefits

4. 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 2007 • 50 conditions selected for initial rollout (October 27, 2008) • 38 conditions added on March 1, 2010 • 12 conditions added on July 30, 2011 • Reached 100 conditions as of July 30, 2011 • Added 13 more conditions on December 10, 2011 • Planning to add new conditions in 2012

5. 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)

6. 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 www.ssa.gov/compassionateallowances

7. 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

8. 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: Compassionate.Allowances@ssa.gov

9. CAL Case Processing Matrix The impairment summaries are available to adjudicators at all levels (initial – appeals) CALS may be manually added/removed at all adjudicative levels

10. Compassionate Allowances Impairment Summary https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022520

11. Compassionate Allowances Conditions Esophageal Cancer Farber's Disease (FD), Infantile FibrodysplasiaOssificansProgressiva Friedreichs Ataxia (FRDA) Frontotemporal Dementia (FTD), Picks Disease, Type A, Adult Fukuyama Congenital Muscular Dystrophy Gallbladder Cancer Gaucher Disease (GD) Type II GlioblastomaMultiforme, Adult Brain Tumor GlutaricAcidemia Type II, Neonatal Head and Neck Cancers, with distant metastasis or inoperable or uresectable Heart Transplant Graft Failure Heart Transplant Wait List, 1A/1B HemophagocyticLymphohistiocytosis (HLH), Familial Type Hypoplastic Left Heart Syndrome Idiopathic Pulmonary Fibrosis Infantile Neuroaxonal Dystrophy (INAD) Infantile Neuronal CeroidLipofuscinoses Inflammatory Breast Cancer (IBC) JunctionalEpidermolysisBullosa, Lethal Type Kidney Cancer, inoperable or unresectable Krabbe Disease (KD), Infantile Large Intestine Cancer, Late Infantile Neuronal CeroidLipofuscinoses Left Ventricular Assist Device (LVAD) Recipient Leigh’s Disease Lesch-Nyhan Syndrome (LNS) Lewy Body Dementia Liver Cancer Lowe Syndrome • Acute Leukemia • Adrenal Cancer, • Alexander Disease (ALX), Neonatal and Infantile • Alstrom Syndrome • Amegakaryocytic Thrombocytopenia • Amyotrophic Lateral Sclerosis (ALS), Adult • Anaplastic Adrenal Cancer • Angelman Syndrome • Aortic Atresia • Astrocytoma, Grade III and IV • Ataxia Telangiectasia • Batten Disease • Bilateral Retinoblastoma • Bladder Cancer • Bone Cancer • Breast Cancer • Canavan Disease (CD) • Cerebro Oculo Facio Skeletal (COFS) Syndrome • Chronic Myelogenous Leukemia (CML), Blast Phase • Corticobasal Degeneration • Creutzfeldt-Jakob Disease (CJD), Adult • Cri du Chat Syndrome • Degos Disease, Systemic • Early-Onset Alzheimer’s Disease • Edwards Syndrome, Trisomy 18 • Eisenmenger Syndrome • Endomyocardial Fibrosis • Ependymoblastoma, Child Brain Tumor

12. Compassionate Allowances Conditions, con’t Primary Central Nervous System Lymphoma Primary Effusion Lymphoma Primary Progressive Aphasia Progressive Multifocal Leukoencephalopathy Progressive Supranuclear Palsy Pulmonary Atresia Pulmonary Kaposi Sarcoma Rett (RTT) Syndrome Salivary Tumors Sandhoff Disease Single Ventricle Small Cell Cancer, of the Large Intestine, Ovary, Prostate, or Uterus Small Cell Lung Cancer Small Intestine Cancer, with distant metastases or inoperable, unresectable or recurrent Spinal Muscular Atrophy (SMA), Types 0 and 1 Spinocerebellar Ataxia Stomach Cancer, with distant metastases or inoperable, unresectable or recurrent SubacuteSclerosingPanencephalitis Tay Sachs Disease, Infantile Type Thanatophoric Dysplasia, Type 1 The ALS/Parkinsonism Dementia Complex Thyroid Cancer Tricuspid Atresia Ullrich Congenital Muscular Dystrophy Ureter Cancer, with distant metastases or inoperable, unresectable or recurrent Walker Warburg Syndrome Wolman Disease Zellweger Syndrome • Malignant Multiple Sclerosis • Mantle Cell Lymphoma (MCL) • Maple Syrup Urine Disease • Merosin Deficient Congenital Muscular Dystrophy • MetachromaticLeukodystrophy (MLD), Late Infantile • Mitral Valve Atresia • Mixed Dementias • MPS I Hurler Syndrome • MPS II Hunter Syndrome • MPS III Sanfilippo Syndrome • Multicentric Castleman Disease • Multiple System Atrophy • Mucosal Malignant Melanoma • Neonatal Adrenoleukodystrophy • Niemann-Pick Disease (NPD), Type A • Niemann-Pick Disease, Type C • Non-Small Cell Lung Cancer • OrnithineTranscarbamylase (OTC) Deficiency • OsteogenesisImperfecta (OI), Type II • Ovarian Cancer, • Pancreatic Cancer • Paraneoplastic Pemphigus • Patau Syndrome, Trisomy 13 • Peritoneal Mesothelioma • Pleural Mesothelioma • Pompe Disease, Infantile • Primary Cardiac Amyloidosis

13. Additional Information The claimant can: • Apply online at www.socialsecurity.govOR • Schedule an appointment by calling SSA’s national 800 number (1-800-772-1213) or contacting the local Social Security Office For more information on Compassionate Allowances and to view the list of CAL conditions visit : www.socialsecurity.gov/compassionateallowances/