Home Court News Compassionate Allowances List on Agenda at 8th National Disability Forum

Compassionate Allowances List on Agenda at 8th National Disability Forum

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The National Disability Forum will hold its Eighth National Disability Forum tomorrow, November 7, 2017.  The Forum will consider inclusion of HSAN1E and other conditions having a high incidence of disability and eventual death.

The National Disability Forum is sponsored by the Social Security Administration (SSA) to provide collaboration between the public and the SSA on a number of matters affecting individuals with disabilities.  The Compassionate Allowances List (CAL) is a fast-track program for individuals seeking approval of their disability application based upon previously approved CAL conditions which warrant automatic approval of disability.

HSAN1E typically affects adults between the age of 32 and 37 years, and is a progressive disease resulting in death approximately 10-15 years from onset.  The average lifespan of affected individuals is 50 years.

The SSA maintains an updated list of CAL conditions which can be reviewed at  https://secure.ssa.gov/poms.nsf/lnx/0423022080.

Recent studies have revealed, however, that many applicants fail to properly identify the CAL condition from which they suffer, resulting in failure of SSA software to properly flag the CAL.  In a report prepared by the United States Government Accountability Office (GAO) found that simple misspellings and inaccurate descriptions of CAL conditions remain problematic with applicants.

Below is a table maintained by the SSA containing a list of CAL conditions.  The table contains a hyperlink to the right of each conditions which provides a description of the particular condition as well as recommendations for use of MERs (Medical Evidence of Record) in the application.

Section Title Section Number
Acute Leukemia DI 23022.085
Adrenal Cancer — with distant metastases or inoperable, unresectable or recurrent DI 23022.090
Adult Non-Hodgkin Lymphoma DI 23022.921
Adult Onset Huntington Disease DI 23022.923
Aicardi-Goutieres Syndrome DI 23022.665
Alexander Disease (ALX) — Neonatal and Infantile DI 23022.095
Allan-Herndon-Dudley Syndrome DI 23022.925
Alobar Holoprosencephaly DI 23022.670
Alpers Disease DI 23022.675
Alpha Mannosidosis – Type II and III DI 23022.680
Alstrom Syndrome DI 23022.350
Alveolar Soft Part Sarcoma DI 23022.927
Amegakaryocytic Thrombocytopenia DI 23022.355
Amyotrophic Lateral Sclerosis (ALS) DI 23022.100
Anaplastic Adrenal Cancer — with distant metastases or inoperable, unresectable or recurrent DI 23022.105
Angelman Syndrome DI 23022.600
Aortic Atresia DI 23022.540
Angiosarcoma DI 23022.106
Aplastic Anemia DI 23022.929
Astrocytoma — GRADE III and IV DI 23022.110
Ataxia Telangiectasia DI 23022.360
Atypical Teratoid/Rhabdoid Tumor DI 23022.111
Batten Disease DI 23022.365
Beta Thalassemia Major DI 23022.931
Bilateral Optic Atrophy- Infantile DI 23022.933
Bilateral Retinoblastoma DI 23022.370
Bladder Cancer — with distant metastases or inoperable or unresectable DI 23022.115
Breast Cancer — with distant metastases or inoperable or unresectable DI 23022.125
CACH- Vanishing White Matter Disease- Infantile and Childhood Onset Forms DI 23022.127
Canavan Disease (CD) DI 23022.130
Carcinoma of Unknown Primary Site DI 23022.685
Cardiac Amyloidosis- AL Type DI 23022.580
Caudal Regression Syndrome- Types III and IV DI 23022.935
Cerebro Oculo Facio Skeletal (COFS) Syndrome DI 23022.135
Cerebrotendinous Xanthomatosis DI 23022.690
Child Neuroblastoma- – with distant metastasis or recurrent DI 23022.695
Child Non-Hodgkin Lymphoma- – recurrent DI 23022.700
Child T-Cell Lymphoblastic Lymphoma DI 23022.937
Chondrosarcoma- – with multimodal therapy DI 23022.705
Chronic Idiopathic Intestinal Pseudo Obstruction DI 23022.136
Chronic Myelogenous Leukemia — Blast Phase DI 23022.140
Coffin-Lowry Syndrome DI 23022.141
Congenital Lymphedema DI 23022.939
Congenital Myotonic Dystrophy DI 23022.143
Cornelia de Lange Syndrome- – Classic Form DI 23022.710
Corticobasal Degeneration DI 23022.605
Creutzfeldt-Jakob Disease (CJD) — Adult DI 23022.145
Cri du Chat Syndrome DI 23022.375
Degos Disease, Systemic DI 23022.380
DeSanctis Cacchione Syndrome DI 23022.941
Dravet Syndrome DI 23022.943
Early-Onset Alzheimer’s Disease DI 23022.385
Edwards Syndrome (Trisomy 18) DI 23022.390
Eisenmenger Syndrome DI 23022.545
Endometrial Stromal Sarcoma DI 23022.945
Endomyocardial Fibrosis DI 23022.550
Ependymoblastoma (Child Brain Tumor) DI 23022.150
Esophageal Cancer DI 23022.155
Esthesioneuroblastoma DI 23022.156
Ewing Sarcoma DI 23022.715
Farber’s Disease (FD) — Infantile DI 23022.160
Fatal Familial Insomnia DI 23022.949
Fibrodysplasia Ossificans Progressiva DI 23022.395
Follicular Dendritic Cell Sarcoma – – metastatic or recurrent DI 23022.720
Friedreichs Ataxia (FRDA) DI 23022.165
Frontotemporal Dementia (FTD) Picks Disease –Type A – Adult DI 23022.170
Fryns Syndrome DI 23022.951
Fucosidosis – Type I DI 23022.725
Fukuyama Congenital Muscular Dystrophy DI 23022.400
Fulminant Giant Cell Myocarditis DI 23022.953
Galactosialidosis – Early and Late Infantile Types DI 23022.730
Gallbladder Cancer DI 23022.175
Gaucher Disease (GD) –Type 2 DI 23022.180
Glioblastoma Multiforme (Brain Tumor) DI 23022.185
Glioma Grade III and IV DI 23022.735
Giant Axonal Neuropathy DI 23022.181
Gluteric Acidemia – Type II DI 23022.470
Head and Neck Cancers — with distant metastasis or inoperable or uresectable DI 23022.190
Heart Transplant Graft Failure DI 23022.555
Heart Transplant Wait List – 1A/1B DI 23022.560
Hemophagocytic Lymphohistiocytosis DI 23022.405
Hepatoblastoma DI 23022.745
Hepatopulmonary Syndrome DI 23022.955
Hepatorenal Syndrome DI 23022.957
Histiocytosis Syndromes DI 23022.750
Hoyeaal-Hreidarsson Syndrome DI 23022.191
Hutchinson-Gilford Progeria Syndrome DI 23022.755
Hydranencephaly DI 23022.760
Hypocomplementemic Urticarial Vasculitis Syndrome DI 23022.765
Hypophosphatasia- Perinatal (Lethal) and Infantile Onset Types DI 23022.770
Hypoplastic Left Heart Syndrome DI 23022.565
I Cell Disease DI 23022.775
Idiopathic Pulmonary Fibrosis DI 23022.420
Infantile Free Sialic Acid Storage Disease DI 23022.780
Infantile Neuroaxonal Dystrophy (INAD) DI 23022.195
Infantile Neuronal Ceroid-Lipofuscinoses DI 23022.425
Inflammatory Breast Cancer (IBC) DI 23022.200
Intracranial Hemangiopericytoma DI 23022.201
Jervell and Lange-Nielsen Syndrome DI 23022.959
Joubert Syndrome DI 23022.202
Junctional Epidermolysis Bullosa Lethal Type DI 23022.430
Juvenile Onset Huntington Disease DI 23022.785
Kidney Cancer — inoperable or unresectable DI 23022.205
Kleefstra Syndrome DI 23022.207
Krabbe Disease (KD) –Infantile DI 23022.210
Kufs Disease Type A and B DI 23022.790
Large Intestine Cancer — with distant metastasis or inoperable, unresectable or recurrent DI 23022.215
Late Infantile Neuronal Ceroid-Lipofuscinoses DI 23022.435
Leigh’s Disease DI 23022.440
Leiomyosarcoma DI 23022.961
Leptomeningeal Carcinomatosis DI 23022.216
Lesch-Nyhan Syndrome (LNS) DI 23022.220
Lewy Body Dementia DI 23022.610
Liposarcoma – metastatic or recurrent DI 23022.221
Lissencephaly DI 23022.795
Liver Cancer DI 23022.225
Lowe Syndrome DI 23022.615
Lymphomatoid Granulomatosis – Grade III DI 23022.800
Malignant Brain Stem Gliomas – Childhood DI 23022.805
Malignant Ectomesenchymoma DI 23022.226
Malignant Gastrointestinal Stromal Tumor DI 23022.963
Malignant Germ Cell Tumor DI 23022.965
Malignant Multiple Sclerosis DI 23022.620
Malignant Renal Rhabdoid Tumor DI 23022.227
Mantle Cell Lymphoma (MCL) DI 23022.230
Maple Syrup Urine Disease DI 23022.445
Marshall-Smith Syndrome DI 23022.231
Mastocytosis – Type IV DI 23022.815
MECP 2 Duplication Syndrome DI 23022.967
Medulloblastoma – with metastasis DI 23022.820
Menkes Disease – Classic or Infantile Onset Form DI 23022.969
Merkel Cell Carcinoma – with metastasis DI 23022.825
Merosin Deficient Congenital Muscular Dystrophy DI 23022.450
Metachromatic Leukodystrophy – Late Infantile DI 23022.235
Mitral Valve Atresia DI 23022.575
Mixed Dementia DI 23022.455
MPS I, formerly known as Hurler Syndrome DI 23022.415
MPS II, formerly known as Hunter Syndrome DI 23022.410
MPS III, formerly known as Sanfilippo Syndrome DI 23022.495
Mucosal Melanoma DI 23022.460
Multicentric Castleman Disease DI 23022.625
Multiple System Atrophy DI 23022.630
Myocolonic Epilepsy and Ragged Red Fibers Syndrome DI 23022.830
Neonatal Adrenoleukodystrophy DI 23022.465
(Neonatal) Glutaric Acidemia DI 23022.470
Nephrogenic Systemic Fibrosis DI 23022.835
NFU-1 Mitochondrial Disease DI 23022.971
Niemann-Pick Disease (NPD) — type A DI 23022.240
Niemann-Pick Disease Type C DI 23022.475
Nonketotic Hyperglycinemia DI 23022.973
Non-Small Cell Lung Cancer — with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent DI 23022.245
Obliterative Bronchiolitis DI 23022.840
Ohtahara Syndrome DI 23022.845
Oligodendroglioma Brain Tumor- Grade III DI 23022.246
Ornithine Transcarbamylase (OTC) Deficiency DI 23022.250
Orthochromatic Leukodystrophy with Pigmented Glia DI 23022.850
Osteogenesis Imperfecta (OI) — Type II DI 23022.255
Osteosarcoma, formerly known as Bone Cancer — with distant metastases or inoperable or unresectable DI 23022.120
Ovarian Cancer — with distant metastases or inoperable or unresectable DI 23022.260
Pallister-Killian Syndrome DI 23022.261
Pancreatic Cancer DI 23022.265
Paraneoplastic Pemphigus DI 23022.635
Patau Syndrome (Trisomy 13) DI 23022.480
Pearson Syndrome DI 23022.855
Pelizaeus-Merzbacher Disease- – Classic Form DI 23022.860
Pelizaeus-Merzbacher Disease- – Connatal Form DI 23022.865
Peripheral Nerve Cancer- – metastatic or recurrent DI 23022.870
Peritoneal Mesothelioma DI 23022.270
Peritoneal Mucinous Carcinomatosis DI 23022.975
Perry Syndrome DI 23022.875
Phelan-McDermid Syndrome DI 23022.977
Pleural Mesothelioma DI 23022.275
Pompe Disease — Infantile DI 23022.280
Primary Central Nervous System Lymphoma DI 23022.640
Primary Effusion Lymphoma DI 23022.645
Primary Progressive Aphasia DI 23022.485
Progressive Bulbar Palsy DI 23022.281
Progressive Multifocal Leukoencephalopathy DI 23022.490
Progressive Supranuclear Palsy DI 23022.650
Prostate Cancer- Hormone Refractory Disease— or with visceral metastases DI 23022.282
Pulmonary Atresia DI 23022.585
Pulmonary Kaposi Sarcoma DI 23022.655
Retinopathy of Prematurity- Stage V DI 23022.979
Rett (RTT) Syndrome DI 23022.285
Revesez Syndrome DI 23022.286
Rhabdomyosarcoma DI 23022.880
Rhizomelic Chondrodysplasia Punctata DI 23022.885
Roberts Syndrome DI 23022.981
Salivary Tumors DI 23022.290
Sandhoff Disease DI 23022.295
Schindler Disease – – Type I DI 23022.890
Seckel Syndrome DI 23022.296
Severe Combined Immunodeficiency- Childhood DI 23022.983
Single Ventricle DI 23022.590
Sinonasal Cancer DI 23022.985
Sjogren-Larsson Syndrome DI 23022.297
Skin Malignant Melanoma—with metastases DI 23022.810
Small -Cell Cancer of the Large Intestine DI 23022.300
Small- Cell Cancer of the Ovary DI 23022.305
Small- Cell Cancer of the Prostate DI 23022.310
Small- Cell Cancer of the Thymus DI 23022.311
Small- Cell Cancer of the Uterus DI 23022.315
Small- Cell Lung Cancer DI 23022.320
Small Intestine Cancer — with distant metastases or inoperable, unresectable or recurrent DI 23022.325
Smith Lemli Opitz Syndrome DI 23022.895
Soft Tissue Sarcoma – with distant metastases or recurrent DI 23022.326
Spinal Muscular Atrophy (SMA) — Types 0 and 1 DI 23022.330
Spinal Nerve Root Cancer- – metastatic or recurrent DI 23022.900
Spinocerebellar Ataxia DI 23022.500
Stiff Person Syndrome DI 23022.905
Stomach Cancer — with distant metastases or inoperable, unresectable or recurrent DI 23022.335
Subacute Sclerosing Panencephalitis DI 23022.505
Tabes Dorsalis DI 23022.910
Tay Sachs Disease DI 23022.510
Thanatophoric Dysplasia, Type 1 DI 23022.515
The ALS/Parkinsonism Dementia Complex DI 23022.660
Thyroid Cancer DI 23022.340
Transplant Coronary Artery Vasculopathy DI 23022.987
Tricuspid Atresia DI 23022.595
Ullrich Congenital Muscular Dystrophy DI 23022.520
Ureter Cancer — with distant metastases or inoperable, unresectable or recurrent DI 23022.345
Usher Syndrome- Type I DI 23022.989
Ventricular Assist Device Recipient DI 23022.570
Walker Warburg Syndrome DI 23022.525
Wolf-Hirschhorn Syndrome DI 23022.915
Wolman Disease DI 23022.530
Xeroderma Pigmentosum DI 23022.920
X-Linked Lymphoproliferative Disease DI 23022.346
X-Linked Myotubular Myopathy DI 23022.347
Zellweger Syndrome DI 23022.535

SLN SOURCES:  SSA CAL page; SSA Compassionate Allowances General Information; Aug. 2017 GAO Report on Improvements Needed to Make Expedited Processing of Disability Claims More Consistent and Accurate; National Disability Forum Home Page; 8th Annual National Disability Forum Agenda; Archive Page of National Disability Forum with topics and agenda for each forum; and Brief Overview of HSAN1E included in Forum’s Agenda.