Compassionate Allowances—the “Fast Track” for Those with Certain Disabilities

By / March 3, 2016 / Applying for Social Security Disability & SSI Benefits, Social Security Disability Claims Process / 4 Comments

Learn how certain disabilities qualify under the SSA’s Compassionate Allowances program to fast track approval of your Social Security Disability claim.

This section can be extremely useful if you have a disability that qualifies for a “compassionate allowance.” It will help you cut the red tape and jump to the head of the line, in regard to the medical evidence requirements. (However, non-medical requirements must still be met, too.)

Ordinarily, if you (or those you’re helping apply for benefits) suffer from a severe disability, it may be very difficult or impossible to wait months for a decision, and then another five months to receive the first benefit payment.

That’s why, in 2008, the Social Security Administration (SSA) launched the Compassionate Allowances program. Initially it listed 50 diseases and other medical conditions—primarily neurological disorders, cancers and rare diseases—that qualify for “fast track” SSD benefit decisions in just days, not months. Later, the list was expanded to 88 conditions, then to 100, and then again to 113. Now this totals 225 conditions.

Also, in case it’s relevant to you, there have been several name changes: Hurler Syndrome is now MPS I, Hunter Syndrome is now MPS II, and Sanfilippo Syndrome is now MPS III.

Therefore, if your disability is on the list, be sure to let the SSA know about it when you apply for SSD benefits or when you contest a denial. Point out, on your document, that you have a medical condition that qualifies for a Compassionate Allowance. Here is the most recent list…

1. Acute Leukemia
2. Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
3. Adult Non-Hodgkin Lymphoma
4. Adult Onset Huntington Disease
5. Aicardi-Goutieres Syndrome
6. Alexander Disease (ALX) – Neonatal and Infantile
7. Allan-Herndon-Dudley Syndrome
8. Alobar Holoprosencephaly
9. Alpers Disease
10. Alpha Mannosidosis – Type II and III
11. Alstrom Syndrome
12. Alveolar Soft Part Sarcoma
13. Amegakaryocytic Thrombocytopenia
14. Amyotrophic Lateral Sclerosis (ALS)
15. Anaplastic Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
16. Angelman Syndrome
17. Angiosarcoma
18. Aortic Atresia
19. Aplastic Anemia
20. Astrocytoma – Grade III and IV
21. Ataxia Telangiectasia
22. Atypical Teratoid/Rhabdoid Tumor
23. Batten Disease
24. Beta Thalassemia Major
25. Bilateral Optic Atrophy- Infantile
26. Bilateral Retinoblastoma
27. Bladder Cancer – with distant metastases or inoperable or unresectable
28. Breast Cancer – with distant metastases or inoperable or unresectable
29. Canavan Disease (CD)
30. Carcinoma of Unknown Primary Site
31. Cardiac Amyloidosis- AL Type
32. Caudal Regression Syndrome – Types III and IV
33. Cerebro Oculo Facio Skeletal (COFS) Syndrome
34. Cerebrotendinous Xanthomatosis
35. Child Lymphoblastic Lymphoma
36. Child Lymphoma
37. Child Neuroblastoma – with distant metastases or recurrent
38. Chondrosarcoma – with multimodal therapy
39. Chronic Idiopathic Intestinal Pseudo Obstruction
40. Chronic Myelogenous Leukemia (CML) – Blast Phase
41. Coffin-Lowry Syndrome
42. Congenital Lymphedema
43. Cornelia de Lange Syndrome
44. Corticobasal Degeneration
45. Creutzfeldt-Jakob Disease (CJD) – Adult
46. Cri du Chat Syndrome
47. Degos Disease – Systemic
48. DeSanctis Cacchione Syndrome
49. Dravet Syndrome
50. Early-Onset Alzheimer’s Disease
51. Edwards Syndrome (Trisomy 18)
52. Eisenmenger Syndrome
53. Endometrial Stromal Sarcoma
54. Endomyocardial Fibrosis
55. Ependymoblastoma (Child Brain Cancer)
56. Erdheim Chester Disease
57. Esophageal Cancer
58. Esthesioneuroblastoma
59. Ewing Sarcoma
60. Farber’s Disease (FD) – Infantile
61. Fatal Familial Insomnia
62. Fibrodysplasia Ossificans Progressiva
63. Follicular Dendritic Cell Sarcoma – metastatic or recurrent
64. Friedreichs Ataxia (FRDA)
65. Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult
66. Fryns Syndrome
67. Fucosidosis – Type 1
68. Fukuyama Congenital Muscular Dystrophy
69. Fulminant Giant Cell Myocarditis
70. Galactosialidosis – Early and Late Infantile Types
71. Gallbladder Cancer
72. Gaucher Disease (GD) – Type 2
73. Giant Axonal Neuropathy
74. Glioblastoma Multiforme (Brain Cancer)
75. Glioma Grade III and IV
76. Glutaric Acidemia – Type II
77. Head and Neck Cancers – with distant metastasis or inoperable or unresectable
78. Heart Transplant Graft Failure
79. Heart Transplant Wait List – 1A/1B
80. Hemophagocytic Lymphohistiocytosis (HLH) – Familial Type
81. Hepatoblastoma
82. Hepatopulmonary Syndrome
83. Hepatorenal Syndrome
84. Histiocytosis Syndromes
85. Hoyeaal-Hreidarsson Syndrome
86. Hutchinson-Gilford Progeria Syndrome
87. Hydranencephaly
88. Hypocomplementemic Urticarial Vasculitis Syndrome
89. Hypophosphatasia Perinatal (Lethal) and Infantile Onset Types
90. Hypoplastic Left Heart Syndrome
91. I Cell Disease
92. Idiopathic Pulmonary Fibrosis
93. Infantile Free Sialic Acid Storage Disease
94. Infantile Neuroaxonal Dystrophy (INAD)
95. Infantile Neuronal Ceroid Lipofuscinoses
96. Inflammatory Breast Cancer (IBC)
97. Intracranial Hemangiopericytoma
98. Jervell and Lange-Nielsen Syndrome
99. Joubert Syndrome
100. Junctional Epidermolysis Bullosa – Lethal Type
101. Juvenile Onset Huntington Disease
102. Kidney Cancer – inoperable or unresectable
103. Krabbe Disease (KD) – Infantile
104. Kufs Disease – Type A and B
105. Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent
106. Late Infantile Neuronal Ceroid Lipofuscinoses
107. Leigh’s Disease
108. Leiomyosarcoma
109. Leptomeningeal Carcinomatosis
110. Lesch-Nyhan Syndrome (LNS)
111. Lewy Body Dementia
112. Liposarcoma – metastatic or recurrent
113. Lissencephaly
114. Liver Cancer
115. Lowe Syndrome
116. Lymphomatoid Granulomatosis – Grade III
117. Malignant Brain Stem Gliomas – Childhood
118. Malignant Ectomesenchymoma
119. Malignant Gastrointestinal Stromal Tumor
120. Malignant Germ Cell Tumor
121. Malignant Melanoma – with metastases
122. Malignant Multiple Sclerosis
123. Malignant Renal Rhabdoid Tumor
124. Mantle Cell Lymphoma (MCL)
125. Maple Syrup Urine Disease
126. Marshall-Smith Syndrome
127. Mastocytosis – Type IV
128. MECP2 Duplication Syndrome
129. Medulloblastoma
130. Menkes Disease – Classic or Infantile Onset Form
131. Merkel Cell Carcinoma – with metastases
132. Merosin Deficient Congenital Muscular Dystrophy
133. Metachromatic Leukodystrophy (MLD) – Late Infantile
134. Mitral Valve Atresia
135. Mixed Dementias
136. MPS I, formerly known as Hurler Syndrome
137. MPS II, formerly known as Hunter Syndrome
138. MPS III, formerly known as Sanfilippo Syndrome
139. Mucosal Malignant Melanoma
140. Multicentric Castleman Disease
141. Multiple System Atrophy
142. Myoclonic Epilepsy with Ragged Red Fibers Syndrome
143. Neonatal Adrenoleukodystrophy
144. Nephrogenic Systemic Fibrosis
145. Neurodegeneration with Brain Iron Accumulation – Types 1 and 2
146. NFU-1 Mitochondrial Disease
147. Niemann-Pick Disease (NPD) – Type A
148. Niemann-Pick Disease-Type C
149. Nonketotic Hyperglycinemia
150. Non-Small Cell Lung Cancer – with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
151. Obliterative Bronchiolitis
152. Ohtahara Syndrome
153. Oligodendroglioma Brain Cancer- Grade III
154. Ornithine Transcarbamylase (OTC) Deficiency
155. Orthochromatic Leukodystrophy with Pigmented Glia
156. Osteogenesis Imperfecta (OI) – Type II
157. Osteosarcoma, formerly known as Bone Cancer – with distant metastases or inoperable or unresectable
158. Ovarian Cancer – with distant metastases or inoperable or unresectable
159. Pallister-Killian Syndrome
160. Pancreatic Cancer
161. Paraneoplastic Pemphigus
162. Patau Syndrome (Trisomy 13)
163. Pearson Syndrome
164. Pelizaeus-Merzbacher Disease-Classic Form
165. Pelizaeus-Merzbacher Disease-Connatal Form
166. Peripheral Nerve Cancer – metastatic or recurrent
167. Peritoneal Mesothelioma
168. Peritoneal Mucinous Carcinomatosis
169. Perry Syndrome
170. Phelan-McDermid Syndrome
171. Pleural Mesothelioma
172. Pompe Disease – Infantile
173. Primary Central Nervous System Lymphoma
174. Primary Effusion Lymphoma
175. Primary Progressive Aphasia
176. Progressive Bulbar Palsy
177. Progressive Multifocal Leukoencephalopathy
178. Progressive Supranuclear Palsy
179. Prostate Cancer – Hormone Refractory Disease – or with visceral metastases
180. Pulmonary Atresia
181. Pulmonary Kaposi Sarcoma
182. Retinopathy of Prematurity – Stage V
183. Rett (RTT) Syndrome
184. Revesz Syndrome
185. Rhabdomyosarcoma
186. Rhizomelic Chondrodysplasia Punctata
187. Roberts Syndrome
188. Salivary Cancers
189. Sandhoff Disease
190. Schindler Disease – Type 1
191. Seckel Syndrome
192. Severe Combined Immunodeficiency – Childhood
193. Single Ventricle
194. Sinonasal Cancer
195. Sjogren-Larsson Syndrome
196. Small Cell Cancer (of the Large Intestine, Prostate, Thymus, or Uterus)
197. Small Cell Cancer of the Female Genital Tract
198. Small Cell Lung Cancer
199. Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent
200. Smith Lemli Opitz Syndrome
201. Soft Tissue Sarcoma – with distant metastases or recurrent
202. Spinal Muscular Atrophy (SMA) – Types 0 and 1
203. Spinal Nerve Root Cancer-metastatic or recurrent
204. Spinocerebellar Ataxia
205. Stiff Person Syndrome
206. Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent
207. Subacute Sclerosing Panencephalitis
208. Tabes Dorsalis
209. Tay Sachs Disease – Infantile Type
210. Thanatophoric Dysplasia – Type 1
211. The ALS/Parkinsonism Dementia Complex
212. Thyroid Cancer
213. Transplant Coronary Artery Vasculopathy
214. Tricuspid Atresia
215. Ullrich Congenital Muscular Dystrophy
216. Ureter Cancer – with distant metastases or inoperable, unresectable or recurrent
217. Usher Syndrome – Type I
218. Ventricular Assist Device Recipient – Left, Right, or Biventricular
219. Walker Warburg Syndrome
220. Wolf-Hirschhorn Syndrome
221. Wolman Disease
222. Xeroderma Pigmentosum
223. X-Linked Lymphoproliferative Disease
224. X-Linked Myotubular Myopathy
225. Zellweger Syndrome

As noted above, from time to time other medical conditions are added to the list.

Compassionate Allowances—the “Fast Track” for Those with Certain Disabilities
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  • Dear Suzanne,

    Your husband’s new medical conditions may not be considered by the Appeals Council because the documentation of the illnesses began after the hearing decision and after he was last insured for Social Security Disability (SSDI). On the other hand, if he also has an appeal pending for Supplemental Security Income (SSI) and he doesn’t win the appeal as related to the earlier date of disability, the Appeals Council might approve him for ongoing SSI benefits.

    Sincerely,
    Kay

  • Dear Sharon,

    I suggest that you file an application if you have stopped work or are earning less than $1,170. If you have stopped work and your return was for less than six months, claim a disability date back to when you first stopped work for cancer treatment and list the later work as an unsuccessful work attempt. Tips for filing a claim can be found under the Social Security Disability tab at the top of the page. Just click on “Apply SSD” in the drop down menu.

    Sincerely,
    Kay

  • JJ

    Hi there! Thank you for this extremely helpful website. I don’t know if you answer SSI questions or just SSDI, so if I’m off-base with asking about SSI, I apologize! But, if you do answer SSI questions, here’s mine:

    Our daughter, who is 25, has an extremely rare medical condition – one which is included on the Compassionate Allowance list. It is progressive, life-threatening, and life-limiting. We have taken care of all of her needs her whole life and never wanted to seek assistance, but since we are nearing retirement, we decided it was time to apply for SSI for her. Originally, everything looked very positive. Her case had been sent for expedited review, and the SSI case manager assured us that in his opinion, it was a “slam dunk.” However, a doctor doing medical review decided she wasn’t actually disabled. He had never heard of the disease before, and although the NIH (National Institutes of Health, which diagnosed her – it’s that rare!) can send their test results, they cannot advise (some weird federal law), so there was little opportunity to educate the doctor. We appealed. We almost immediately got a letter of denial of the appeal. Now we are applying for the hearing.

    My question is this – is her case still expedited based on the Compassionate Allowance diagnosis? Or are we stuck in a holding pattern? The last reported numbers for our state said it takes up to 19 months to get a review. Also, if she is approved, would the payments then be retroactive to our application date?

    Thank you for any insight you have!

    • Kay Derochie

      Dear JJ,

      You can submit a dire need request to the hearing office based on your daughter’s condition being listed under the compassionate allowance criteria, which is related to limited life span. The request might speed things up a little. I recommend that you hire an experienced Social Security attorney to present your daughter’s case, given that she has been denied twice. When you hire a Social Security attorney, you do not have to pay any legal fees up front, and you will pay attorney fees only if you are approved for benefits. Social Security law sets the amount your attorney can charge and the Social Security Administration pays the attorney directly from the retroactive award before they send your back pay to you.

      Also, when you and/or your spouse retire, you can apply for Childhood Disability Benefits (CDB) for your daughter on your earnings record(s). CDB are paid to unmarried, disabled adult children who become disabled before age twenty-two.

      Sincerely,
      Kay

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