Compassionate Allowances List for Social Security

Ian C. Langtree - Writer/Editor for Disabled World (DW)
Published: 2009/02/24 - Updated: 2024/08/13
Publication Type: Informative
Peer-Reviewed: Yes
Topic: U.S. Social Security - Publications List

Page Content: Synopsis - Introduction - Main

Synopsis: Social Security Compassionate allowance benefits are fast-tracked for diseases and medical conditions that invariably qualify under the listing of impairments. The Social Security Compassionate Allowance initiative will fast-track applications for Social Security disability applicants whose medical conditions are very severe.

Introduction

Compassionate Allowance Facts

• Compassionate allowances quickly identify diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information.
• Compassionate Allowances (CAL) apply to SSDI, and SSI claims.
• Compassionate Allowances is not separate from the Social Security Disability Insurance or Supplemental Security Income programs.
• U.S. Department of Social Security has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease, multiple organ transplants, and autoimmune diseases.
• If you have medical documentation to prove that you have one of the qualifying conditions, your initial claim will automatically be flagged by the SSA and processed much quicker.
• If your disabling condition is on the Social Security disability compassionate allowances list, you will want to ensure that your application for Social Security disability benefits clearly states this.

Main Item

Alphabetical List of Compassionate Allowance Health Conditions

Numbers

• 1p36 Deletion Syndrome

A

• Acute Leukemia
• Adrenal Cancer - with distant metastases or inoperable, resectable or recurrent
• Adult Heart Transplant Wait List - Status Levels 1-4
• Adult Non-Hodgkin Lymphoma
• Adult Onset Huntington Disease
• Aicardi- Goutieres Syndrome
• Alexander Disease (ALX) - Neonatal and Infantile
• Allan-Herndon-Dudley Syndrome
• Alobar Holoprosencephaly
• Alpers Disease
• Alpha Mannosidosis
• ALS/Parkinsonism Dementia Complex
• Alstrom Syndrome
• Alveolar Soft Part Sarcoma
• Amegakaryocytic Thrombocytopenia
• Amyotrophic Lateral Sclerosis (ALS)
• Anaplastic Adrenal Cancer - with distant metastases or inoperable, resectable or recurrent
• Anaplastic Ependymoma
• Angelman Syndrome
• Angioimmunoblastic T-cell Lymphoma
• Angiosarcoma
• Aortic Atresia
• Aplastic Anemia
• Astrocytoma - Grade III and IV
• Ataxia Spinocerebellar
• Ataxia Telangiectasia
• Atypical Teratoid/Rhabdoid Tumor

B

• Bainbridge-Ropers Syndrome
• Batten Disease
• Beta Thalassemia Major
• Bilateral Optic Atrophy- Infantile
• Bilateral Retinoblastoma
• Bladder Cancer - with distant metastases or inoperable or resectable
• Blastic Plasmacytoid Dendritic Cell Neoplasm
• Bone Cancer - with distant metastases or inoperable or resectable
• Breast Cancer - with distant metastases or inoperable or resectable

C

• Canavan Disease (CD)
• Carcinoma of Unknown Primary Site
• Calciphylaxis
• Caudal Regression Syndrome - Types III and IV
• CDKL5 Deficiency Disorder
• Cerebro Oculo Facio Skeletal (COFS) Syndrome
• Cerebrotendinous Xanthomatosis
• Charlevoix Saguenay Spastic Ataxia (ARSACS)
• Child Heart Transplant Wait List - Status Levels 1A/1B (revised existing condition)
• Child Neuroblastoma
• Child Non-Hodgkin Lymphoma
• Child T-Cell Lymphoblastic Lymphoma
• Cholangiocarcinoma
• Chondrosarcoma with multimodal therapy
• Choroid Plexus Carcinoma
• Chronic Idiopathic Intestinal Pseudo Obstruction
• Chronic Myelogenous Leukemia (CML) - Blast Phase
• CIC-rearranged Sarcoma
• Coffin- Lowry Syndrome
• Congenital Lymphedema
• Congenital Myotonic Dystrophy
• Congenital Zika Syndrome
• Cornelia de Lange Syndrome-Classic Form
• Corticobasal Degeneration
• Costello Syndrome
• Creutzfeldt-Jakob Disease (CJD) - Adult
• Cri du Chat Syndrome

D

• Degos Disease
• DeSanctis Cacchione Syndrome
• Desmoplastic Mesothelioma
• Desmoplastic Small Round Cell Tumors
• Dravet Syndrome
• Duchenne Muscular Dystrophy - Adult

E

• Early-Onset Alzheimer's Disease
• Edwards Syndrome
• Eisenmenger Syndrome
• Endometrial Stromal Sarcoma
• Endomyocardial Fibrosis
• Ependymoblastoma (Child Brain Tumor)
• Erdheim Chester Disease
• Esophageal Cancer
• Esthesioneuroblastoma
• Ewings Sarcoma

F

• Farber's Disease (FD) - Infantile
• Fatal Familial Insomnia
• Fibrodysplasia Ossificans Progressiva
• Fibrolamellar Cancer
• Follicular Dendritic Cell Sarcoma with metastases
• FOXG1 Syndrome
• Friedreichs Ataxia (FRDA)
• Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult
• Fryns Syndrome
• Fucosidosis - Type 1
• Fukuyama Congenital Muscular Dystrophy
• Fulminant Giant Cell Myocrditis

G

• Galactosialidosis - Early Infantile Type
• Gallbladder Cancer
• Gaucher Disease (GD) - Type 2
• Gerstmann-Straussler-Scheinker Disease
• Giant Axonal Neuropathy
• Glioblastoma Multiforme (Brain Tumor)
• Glioma Grade III and IV
• Glutaric Acidemia Type II
• GM1 Gangliosidosis - Infantile and Juvenile Forms

H

• Hallervorden-Spatz Disease
• Head and Neck Cancers - with distant metastasis or inoperable or unresectable
• Heart Transplant Graft Failure
• Heart Transplant Wait List - 1A/1B
• Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
• Hepatoblastoma
• Hepatopulmonary Syndrome
• Hepatorenal Syndrome
• Histiocytic Malignancies
• Histiocytosis Syndromes (revised existing condition)
• Hoyeaal-Hreidarsson Syndrome
• Hunter Syndrome, Type II
• Hurler Syndrome, Type IH
• Hutchinson-Gilford Progeria Syndrome
• Hydranencephaly
• Hypocomplementemic Urticarial Vasculitis
• Hypophosphatasia Perinatal lethal Form
• Hypoplastic Left Heart Syndrome

I

• I Cell disease
• Idiopathic Pulmonary Fibrosis
• Infantile Free Sialic Acid Storage Disease
• Infantile Neuroaxonal Dystrophy (INAD)
• Inflammatory Breast Cancer (IBC)
• Intracranial Hemangiopericytoma

J

• Jervell and Lange-Nielsen Syndrome
• Joubert Syndrome
• Junctional Epidermolysis Bullosa, Lethal Type
• Juvenile Onset Huntington Disease

K

• Kidney Cancer - inoperable or unresectable
• Kleefstra Syndrome
• Krabbe Disease (KD) - Infantile
• Kufs Disease Type A and B

L

• Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent
• Late Infantile Neuronal Ceroid Lipofuscinoses
• Leber Congenital Amaurosis
• Left Ventricular Assist Device (LVAD) Recipient
• Leigh's Disease
• Leiomyosarcoma
• Leptomeningeal Carcinomatosis
• Lesch-Nyhan Syndrome (LNS)
• Lewy Body Dementia
• Liposarcoma- metastatic or recurrent
• Lissencephaly
• Liver Cancer
• Lowe Syndrome
• Lymphomatoid Granulomatosis Grade III

M

• Malignant Brain Stem Gliomas - Childhood
• Malignant Ectomesenchymoma
• Malignant Gastrointestinal Stromal Tumor
• Malignant Germ Cell Tumor
• Malignant Melanoma with metastases
• Malignant Multiple Sclerosis
• Malignant Renal Rhabdoid Tumor
• Mantle Cell Lymphoma (MCL)
• Maple Syrup Urine Disease
• Marshall-Smith Syndrome
• Mastocytosis Type IV
• MECP 2 Duplication Syndrome
• Medulloblastoma with metastasis
• Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS)
• Megalencephaly Capillary Malformation Syndrome (MCAP)
• Menkes Disease - Classic or Infantile Onset Form
• Merkel Cell Carcinoma with metastases
• Merosin Deficient Congenital Muscular Dystrophy
• Metachromatic Leukodystrophy (MLD) - Late Infantile
• Metastatic Endometrial Adenocarcinoma
• Microvillus Inclusion Disease - Child
• Mitral Valve Atresia
• Mixed Dementia
• Mowat-Wilson Syndrome
• Mucosal Malignant Melanoma
• Multicentric Castleman Disease
• Multiple System Atrophy
• Myelodysplastic Syndrome with Excess Blasts
• Myocolonic Epilepsy and Ragged Red Fibers Syndrome

N

• Neonatal Adrenoleukodystrophy
• Neonatal Marfan Syndrome
• Nephrogenic Systemic Fibrosis
• Neuronal Ceroid Lipofuscinoses, Infantile Type
• NFU-1 Mitochondrial Disease
• Nicolaides- Baraister Syndrome
• Niemann-Pick Disease (NPD) - Type A
• Niemann-Pick Type C
• Non- Ketotic Hyperglcinemia
• Non-Small Cell Lung Cancer - with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
• NUT Carcinoma

O

• Obliterative Bronchiolitis
• Ohtahara Syndrome
• Oligodendroglioma Brain Tumor- Grade III
• Ornithine Transcarbamylase (OTC) Deficiency
• Orthochromatic Leukodystrophy with Pigmented Glia
• Osteogenesis Imperfecta (OI) - Type II
• Ovarian Cancer - with distant metastases or inoperable or unresectable

P

• PACS1 Syndrome
• Pallister-Killian Syndrome
• Pancreatic Cancer
• Paraneoplastic Cerebellar Degeneration
• Paraneoplastic Pemphigus
• Patau Syndrome
• Pearson Syndrome
• Pelizaeus -Merzbacher Disease-Classic Form
• Pelizaeus -Merzbacher Disease- Connatal Form
• Pericardial Mesothelioma
• Peripheral Nerve Cancer - metastatic or recurrent
• Peritoneal Mesothelioma
• Peritoneal Mucinous Carcinomatosis
• Perry Syndrome
• Pfeiffer Syndrome - Types II and III
• Phelan- McDermid Syndrome
• Pineoblastoma - Childhood
• Pitt Hopkins Syndrome
• Plasmablastic Lymphoma
• Pleural Mesothelioma
• Pompe Disease - Infantile
• Pontocerebellar Hypoplasia
• Posterior Cortical Atrophy
• Primary Cardiac Amyloidosis
• Primary Central Nervous System Lymphoma
• Primary Effusion Lymphoma
• Primary Omental Cancer
• Primary Peritoneal Cancer
• Primary Progressive Aphasia
• Progressive Bulbar Palsy
• Progressive Multifocal Leukoencephalopathy
• Progressive Supranuclear Palsy
• Prostate Cancer - Hormone Refractory Disease - or with visceral metastases
• Pulmonary Atresia
• Pulmonary Kaposi Sarcoma

R

• Refractory Hodgkin Lymphoma
• Renal Amyloidosis - AL Type
• Renal Medullary Carcinoma
• Renpenning Syndrome
• Retinopathy of Prematurity - Stage V
• Rett Syndrome
• Revesz Syndrome
• Rhabdomyosarcoma
• Rhizomelic Chondrodysplasia Punctata
• Richter Syndrome
• Roberts Syndrome
• Rubinstein- Tybai Syndrome

S

• Salivary Tumors
• Sandhoff Disease
• Sanfilippo Syndrome
• Sarcomatoid Carcinoma of the Lung - Stages II-IV
• Sarcomatoid Mesothelioma
• Schindler Disease Type 1
• SCN8A Related Epilepsy with Encephalopathy
• Seckel Syndrome
• Secondary Adenocarcinoma of the Brain
• Severe Combined Immunodeficiency - Childhood
• Single Ventricle
• Sinonasal Cancer
• Sjogren-Larsson Syndrome
• Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)
• Small Cell Cancer of the Thymus
• Small Cell Lung Cancer
• Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent
• Smith Lemli Opitz Syndrome
• Snijders Blok-Campeau Syndrome
• Soft Tissue Sarcoma- with distant metastases or recurrent
• Spinal Muscular Atrophy (SMA) - Types 0 And 1
• Spinal Nerve Root Cancer- metastatic or recurrent
• Stiff Person Syndrome
• Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent
• Subacute Sclerosis Panencephalitis
• SYNGAP1-related NSID

T

• Tabes Dorsalis
• Tay Sachs Disease
• Taybi -Linder Syndrome
• Tetrasomy 18p
• Thanatophoric Dysplasia, Type 1
• Thyroid Cancer
• Transplant Coronary Artery Vasculopathy
• Tricuspid Atresia
• Trisomy 9

U

• Ullrich Congenital Muscular Dystrophy
• Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent
• Usher Syndrome - Type I

V

• Vanishing White Matter Disease (CACH) - Infantile and Childhood Onset Forms

W

• Walker Warburg Syndrome
• Wolf-Hirschhorn Syndrome
• Wolman Disease

X

• Xeroderma Pigmentosum
• X-Linked Lymphoproliferative Disease
• X-Linked Myotubular Myopathy

Z

• Zellweger Syndrome

Rare Diseases

Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA. Compassionate allowances will allow Social Security to quickly target the most disabled individuals for allowances based on objective medical information that we can obtain quickly.

Often, people with rare diseases are initially denied assistance but later reapply, often with the help of an attorney, and ultimately are approved. The delay and expense of attorney fees can be overwhelming to people who are already coping with serious illness, major medical expenses, and loss of ability to perform normal activities, including work.

Obligation

U.S. Social Security must quickly provide benefits to applicants whose medical conditions are so serious that they meet disability standards. The Compassionate Allowance initiative will fast-track applications for Social Security disability applicants whose medical conditions are very severe. Many people with rare diseases experience devastating delays when they apply for Social Security assistance because those making the decisions are unfamiliar with their diseases.

The initial list of Compassionate Allowance conditions was developed as a result of information received at public outreach hearings, public comment on an Advance Notice of Proposed Rule-making, comments received from the Social Security and Disability Determination Service communities, and the counsel of medical and scientific experts. Also, we considered which conditions are most likely to meet our current definition of disability.

The Program is Just a Start

There are 6,000 to 7,000 known rare diseases, many of which could qualify for a compassionate allowance. NORD is committed to working with SSA to bring many rare diseases under this program. The list below will be expanded over time as more fast-track medical conditions are approved. For more information about the program, including a current up to date list of all compassionate allowance conditions, please visit www.socialsecurity.gov/compassionateallowances

Author Credentials: Ian was born and grew up in Australia. Since then, he has traveled and lived in numerous locations and currently resides in Montreal, Canada. Ian is the founder, a writer, and editor in chief for Disabled World. Ian believes in the Social Model of Disability, a belief developed by disabled people in the 1970s. The social model changes the focus away from people's impairments and towards removing barriers that disabled people face daily. To learn more about Ian's background, expertise, and achievements, check out his bio.