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Compassionate Allowance List 2022 (And What To Do If Your Condition is On It)

Jackie Jakab, Attorney
By Jackie Jakab, Attorney

The compassionate allowance program is an important resource for disability applicants to know about. If your condition is on the compassionate allowance list, you automatically qualify for benefits, and will get those benefits more quickly.

It’s important to note: most people who receive disability benefits are not on the compassionate allowance list. Even if your condition isn’t on the list, there are still steps you can take to give yourself a better chance of getting approved. 

Find out what conditions are listed in 2022, how much compassionate allowance is, and what you should do if you don’t qualify for the program. 

What is compassionate allowance?

Compassionate allowance is a Social Security program encompassing certain diseases that are eligible for disability. By using a compassionate allowance list, the SSA can easily identify compassionate allowance cases and make quick decisions—which means people with serious medical issues can get disability more quickly.

Compassionate allowance conditions primarily include certain cancers; adult brain disorders; and rare disorders that affect children. The SSA creates the list of conditions by using:

  • Information from the public
  • Comments received from the Social Security and Disability Determination Service Communities
  • Counsel from medical and scientific experts
  • Research with the National Institutes of Health (NIH)
  • Information received from past public outreach hearings

The compassionate allowance program speeds up the process of applying for disability benefits. Essentially, if you have a condition on the compassionate allowance list, your case will be fast-tracked for approval to start receiving benefits (as long as you meet all other requirements). 

The compassionate allowance list in 2022

Here is the SSA’s list of compassionate allowance conditions in 2022:

Acute Leukemia

Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

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 - Type II and III

ALS/Parkinsonism Dementia Complex

Alstrom Syndrome

Alveolar Soft Part Sarcoma

Amegakaryocytic Thrombocytopenia

Amyotrophic Lateral Sclerosis (ALS)

Anaplastic Adrenal Cancer - Adult with distant metastases or inoperable, unresectable or recurrent

Angelman Syndrome

Angiosarcoma

Aortic Atresia

Aplastic Anemia

Astrocytoma - Grade III and IV

Ataxia Telangiectasia

Atypical Teratoid/Rhabdoid Tumor

Batten Disease

Beta Thalassemia Major

Bilateral Optic Atrophy- Infantile

Bilateral Retinoblastoma

Bladder Cancer - with distant metastases or inoperable or unresectable

Breast Cancer - with distant metastases or inoperable or unresectable

Canavan Disease (CD)

CACH--Vanishing White Matter Disease-Infantile and Childhood Onset Forms

Carcinoma of Unknown Primary Site

Cardiac Amyloidosis- AL Type

Caudal Regression Syndrome - Types III and IV

CDKL5 Deficiency Disorder

Cerebro Oculo Facio Skeletal (COFS) Syndrome

Cerebrotendinous Xanthomatosis

Charlevoix-Saguenay Spastic Ataxia (New)

Child Lymphoblastic Lymphoma

Child Lymphoma

Child Neuroblastoma - with distant metastases or recurrent

Chondrosarcoma - with multimodal therapy

Choroid Plexus Carcinoma (New)

Chronic Idiopathic Intestinal Pseudo Obstruction

Chronic Myelogenous Leukemia (CML) - Blast Phase

CIC-rearranged Sarcoma (New)

Coffin-Lowry Syndrome

Congenital Lymphedema

Congenital Myotonic Dystrophy

Congenital Zika Syndrome (New)

Cornelia de Lange Syndrome - Classic Form

Corticobasal Degeneration

Creutzfeldt-Jakob Disease (CJD) – Adult

Cri du Chat Syndrome

Degos Disease - Systemic

DeSanctis Cacchione Syndrome

Desmoplastic Mesothelioma (New)

Desmoplastic Small Round Cell Tumors

Dravet Syndrome

Duchenne Muscular Dystrophy- Adult (New)

Early-Onset Alzheimer’s Disease

Edwards Syndrome (Trisomy 18)

Eisenmenger Syndrome

Endometrial Stromal Sarcoma

Endomyocardial Fibrosis

Ependymoblastoma (Child Brain Cancer)

Erdheim Chester Disease

Esophageal Cancer

Esthesioneuroblastoma

Ewing Sarcoma

Farber Disease (FD) – Infantile

Fatal Familial Insomnia

Fibrodysplasia Ossificans Progressiva

Fibrolamellar Cancer

Follicular Dendritic Cell Sarcoma - metastatic or recurrent

Friedreichs Ataxia (FRDA)

Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult

Fryns Syndrome

Fucosidosis - Type 1

Fukuyama Congenital Muscular Dystrophy

Fulminant Giant Cell Myocarditis

Galactosialidosis - Early and Late Infantile Types

Gallbladder Cancer

Gaucher Disease (GD) - Type 2

Giant Axonal Neuropathy

Glioblastoma Multiforme (Brain Cancer)

Glioma Grade III and IV

Glutaric Acidemia - Type II

GM1 Gangliosidosis - Infantile and Juvenile Forms

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

Histiocytosis Syndromes

Hoyeraal-Hreidarsson Syndrome

Hutchinson-Gilford Progeria Syndrome

Hydranencephaly

Hypocomplementemic Urticarial Vasculitis Syndrome

Hypophosphatasia Perinatal (Lethal) and Infantile Onset Types

Hypoplastic Left Heart Syndrome

I Cell Disease

Idiopathic Pulmonary Fibrosis

Infantile Free Sialic Acid Storage Disease

Infantile Neuroaxonal Dystrophy (INAD)

Infantile Neuronal Ceroid Lipofuscinoses

Inflammatory Breast Cancer (IBC)

Intracranial Hemangiopericytoma

Jervell and Lange-Nielsen Syndrome

Joubert Syndrome

Junctional Epidermolysis Bullosa - Lethal Type

Juvenile Onset Huntington Disease

Kidney Cancer - inoperable or unresectable

Kleefstra Syndrome

Krabbe Disease (KD) – Infantile

Kufs Disease - Type A and B

Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent>

Late Infantile Neuronal Ceroid Lipofuscinoses

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

Malignant Brain Stem Gliomas – Childhood

Malignant Ectomesenchymoma

Malignant Gastrointestinal Stromal Tumor

Malignant Germ Cell Tumor

Malignant Multiple Sclerosis

Malignant Renal Rhabdoid Tumor

Mantle Cell Lymphoma (MCL)

Maple Syrup Urine Disease

Marshall-Smith Syndrome

Mastocytosis - Type IV

MECP2 Duplication Syndrome

Medulloblastoma - with metastases

Megacystis Microcolon Intestinal Hypoperistalsis Syndrome

Megalencephaly Capillary Malformation Syndrome

Menkes Disease - Classic or Infantile Onset Form

Merkel Cell Carcinoma - with metastases

Merosin Deficient Congenital Muscular Dystrophy

Metachromatic Leukodystrophy (MLD) - Late Infantile

Mitral Valve Atresia

Mixed Dementias

MPS I, formerly known as Hurler Syndrome

MPS II, formerly known as Hunter Syndrome

MPS III, formerly known as Sanfilippo Syndrome

Mucosal Malignant Melanoma

Multicentric Castleman Disease

Multiple System Atrophy

Myoclonic Epilepsy with Ragged Red Fibers Syndrome

Neonatal Adrenoleukodystrophy

Nephrogenic Systemic Fibrosis

Neurodegeneration with Brain Iron Accumulation - Types 1 and 2

NFU-1 Mitochondrial Disease

Nicolaides-Baraister Syndrome

Niemann-Pick Disease (NPD) - Type A

Niemann-Pick Disease-Type C

Nonketotic Hyperglycinemia

Non-Small Cell Lung Cancer

Obliterative Bronchiolitis

Ohtahara Syndrome

Oligodendroglioma Brain Cancer- Grade III

Ornithine Transcarbamylase (OTC) Deficiency

Orthochromatic Leukodystrophy with Pigmented Glia

Osteogenesis Imperfecta (OI) - Type II

Osteosarcoma, formerly known as Bone Cancer - with distant metastases or inoperable or unresectable

Ovarian Cancer – with distant metastases or inoperable or unresectable

Pallister-Killian Syndrome

Pancreatic Cancer

Paraneoplastic Pemphigus

Patau Syndrome (Trisomy 13)

Pearson Syndrome

Pelizaeus-Merzbacher Disease-Classic Form

Pelizaeus-Merzbacher Disease-Connatal Form

Pericardial Mesothelioma (New)

Peripheral Nerve Cancer - metastatic or recurrent

Peritoneal Mesothelioma

Peritoneal Mucinous Carcinomatosis

Perry Syndrome

Phelan-McDermid Syndrome

Pitt Hopkins Syndrome

Pleural Mesothelioma

Pompe Disease – Infantile

Primary Central Nervous System Lymphoma

Primary Effusion Lymphoma

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

Refractory Hodgkin Lymphoma (New)

Renpenning Syndrome (New)

Retinopathy of Prematurity - Stage V

Rett (RTT) Syndrome

Revesz Syndrome

Rhabdomyosarcoma

Rhizomelic Chondrodysplasia Punctata

Richter Syndrome

Roberts Syndrome

Rubinstein-Taybi Syndrome

Salivary Cancers

Sandhoff Disease

Schindler Disease - Type 1

SCN8A Related Epilepsy with Encephalopathy (New)

Seckel Syndrome

Secondary Adenocarcinoma of the Brain

Severe Combined Immunodeficiency - Childhood

Single Ventricle

Sinonasal Cancer

Sjogren-Larsson Syndrome

Skin Malignant Melanoma with Metastases

Small Cell Cancer (Large Intestine, Prostate or Thymus)

Small Cell Cancer of the Female Genital Tract

Small Cell Lung Cancer

Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent

Smith Lemli Opitz Syndrome

Soft Tissue Sarcoma - with distant metastases or recurrent

Spinal Muscular Atrophy (SMA) - Types 0 and 1

Spinal Nerve Root Cancer-metastatic or recurrent

Spinocerebellar Ataxia

Stiff Person Syndrome

Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent

Subacute Sclerosing Panencephalitis

Superficial Siderosis of the Central Nervous System

SYNGAP1-related NSID (New)

Tabes Dorsalis

Tay Sachs Disease - Infantile Type

Taybi-Linder Syndrome (New)

Tetrasomy 18p

Thanatophoric Dysplasia - Type 1

Thyroid Cancer

Transplant Coronary Artery Vasculopathy

Tricuspid Atresia

Ullrich Congenital Muscular Dystrophy

Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent

Usher Syndrome - Type I

Ventricular Assist Device Recipient - Left, Right, or Biventricular

Walker Warburg Syndrome

Wolf-Hirschhorn Syndrome

Wolman Disease

X-Linked Lymphoproliferative Disease

X-Linked Myotubular Myopathy

Xeroderma Pigmentosum

Zellweger Syndrome

How much is compassionate allowance?

Compassionate allowance benefits for Social Security disability are the same amount as other benefits. The only difference is you should be able to get them faster.

For individuals on Social Security Disability Insurance (SSDI), the maximum payment available is around $3,300 per month. If you end up on Supplemental Security Income (SSI), you should receive a maximum of $841 per month. 

Your specific benefits will vary based on factors such as your work history and assets. You can estimate your SSDI monthly benefit by creating a mySocialSecurity account on SSA.gov and using the site’s benefits calculator.

What should I do if my condition is on the list?

If your condition is on the compassionate allowance list, here’s where you need to start.

Apply for Social Security benefits

First, apply for Social Security benefits. Be clear about the extent of your condition. Since your case is considered compassionate allowance, you shouldn’t need a lawyer—most likely, you’ll be approved the first time you apply.

While the application is certainly a lot of paperwork to wade through on your own, finding a lawyer for compassionate allowance cases can be difficult and time-consuming because the lawyer will essentially be taking your case for free. And chances are, you’ll be quickly approved anyway, so there’s no need to spend the time searching for an attorney.

Call your local Social Security office

Once you’ve applied, call your local Social Security office. You can find their number by searching online for “Social Security + [your ZIP code]” or entering your ZIP code here.

When you speak with somebody, explain that you’ve applied for disability benefits and your case is compassionate allowance. Verify that your application was received. Then inform the office your case should be flagged as urgent because of your condition.

It can also be helpful to include any photos of yourself that can serve as medical evidence to demonstrate or “prove” your condition.

What should I do if I’m not on the list?

If your condition isn’t on the compassionate allowance list, don’t panic! Most disability applicants are not on the list. While your process might take longer, you could still have a great case. There are a couple of things you’ll want to keep in mind.

Work with a lawyer

Disability applicants who do not qualify for the compassionate allowance program will likely need to work with a lawyer. While this isn’t mandatory, your chances of winning disability with a lawyer are three times better than if you try to apply on your own.

A lawyer will help you:

  • Review your case
  • Submit your application
  • Obtain medical records
  • Navigate the appeals process
  • Prepare for your hearing
  • Handle post-hearing filings and appeals

Consider filing for Dire Need

Filing for Dire Need is a way to expedite your application even if your case isn’t considered compassionate allowance. The SSA lists the following situations that qualify as Dire Need:

  • You don’t have food and can’t get any.
  • You don’t have medicine or medical care and can’t get any, or access to the medical care you need is restricted due to lack of resources.
  • You don’t have shelter (for instance, you’re homeless, you’re about to be evicted, or your house doesn’t have necessary utilities).

If any of these apply to you, your case may be able to be flagged as Dire Need, which can help the process move more quickly. 

Moving forward with compassionate allowance

If you don’t fall under the compassionate allowance program, you’ll most likely need a lawyer to help with your case—and even if your condition is on the compassionate allowance list, you may still want a pro-bono lawyer who can help streamline your application even more. 

That’s what we offer here at Atticus. We can provide legal advice at no cost, matching you up with a lawyer from our network of vetted attorneys. Click here to take a short quiz on your situation and learn how we can help.

Ready to get benefits today?
Jackie Jakab, Attorney
Jackie Jakab, AttorneyJackie Jakab is Atticus’s Legal Director. She’s a licensed attorney, a graduate of the University of Chicago Law School, and has counseled thousands of people seeking disability benefits.
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