NEW FAST-TRACK DISABILITY – “COMPASSIONATE ALLOWANCES”

In October 2008 Social Security Commissioner Michael Astrue announced the launch of a new “Compassionate Allowances” initiative to fast-track applications for Social Security disability (Social Security Disability Insurance, SSDI, and Supplemental Security Income, SSI) for applicants with any of 25 rare diseases and 25 cancers whose medical conditions are very severe. Over time, more diseases and conditions will be added.  This initiative grew out of public hearings and information-gathering with the National Institutes of Health and the National Organization for Rare Disorders, Inc. (NORD), among other organizations.

“Getting benefits quickly to people with the most severe medical conditions is both the right and the compassionate thing to do,” Commissioner Astrue said.  “This initiative will allow us to make decisions on these cases in a matter of days, rather than months or years.”

It is the first step in efforts by the Social Security Administration (SSA) to reduce unnecessary, expensive and often devastating delays in awarding disability assistance to qualified people with rare diseases that occur because those making the decisions are not familiar with rare diseases. Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA. Often, people with rare diseases initially are 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.

NORD President Peter Alstonstall hailed the initiative as “an outstanding achievement”. “Disability backlogs cause a hardship for patients and their families. Social Security Commissioner Michael Astrue and his staff deserve our thanks for a job well done.” At the same time, he added “This program is just a start. There are 6,000 to 7,000 known rare diseases, many of which could qualify for compassionate allowance. NORD is committed to working with SSA to bring many more rare diseases under this program.”

Compassionate Allowances is the second piece of the agency’s two-track, fast-track system for certain disability claims.  When combined with the agency’s Quick Disability Determination process, and once fully implemented, this two-track system could result in six to nine percent of disability claims, the cases for as much as a quarter million people, being decided in an average of six to eight days.

-From: “NORD Works with Social Security Administration on New ‘Compassionate Allowances’”, NORD (National Organization for Rare Disorders, Inc.) Orphan Disease Update, vol 27, Edition 1, Winter 2008-2009, and SOCIAL SECURITY News Release “Social Security Announces Nationwide Launch of Compassionate Allowances; Process Will Fast Track Applications For People with Cancers and Rare Diseases”, October 27, 2008 at http://www.ssa.gov/pressoffice/pr/compassionate-allowances-1008-pr.htm, retrieved 1/29/08.

List of Conditions: (available at https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022080)  

  1. Acute Leukemia
  2. Adrenal Cancer -- with distant metastases or inoperable, unresectable or recurrent
  3. Alexander Disease -- Neonatal and Infantile
  4. Amyotrophic Lateral Sclerosis (ALS)
  5. Anaplastic Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
  6. Astrocytoma – Grade III and IV
  7. Bladder Cancer – with distant metastases or inoperable or unresectable
  8. Bone Cancer – with distant metastases or inoperable or unresectable
  9. Breast Cancer – with distant metastases or inoperable or unresectable
  10. Canavan Disease (CD)
  11. Cerebro Oculo Facio Skeletal (COFS) Syndrome
  12. Chronic Myelogenous Leukemia (CML) – Blast Phase
  13. Creutzfeldt-Jakob Disease (CJD) - Adult
  14. Ependymoblastoma (Child Brain Tumor)
  15. Esophageal Cancer
  16. Farber’s Disease (FD) – Infantile
  17. Friedreichs Ataxia (FRDA)
  18. Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult
  19. Gallbladder Cancer
  20. Gaucher Disease (GD) – Type 2
  21. Glioblastoma Multiforme (Brain Tumor)
  22. Head and Neck Cancers – with distant metastasis or inoperable or unresectable
  23. Infantile Neuroaxonal Dystrophy (INAD)
  24. Inflammatory Breast Cancer (IBC)
  25. Kidney Cancer – inoperable or unresectable
  26. Krabbe Disease (KD) – Infantile
  27. Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent
  28. Lesch-Nyhan Syndrome (LNS)
  29. Liver Cancer
  30. Mantle Cell Lymphoma (MCL)
  31. Metachromatic Leukodystrophy (MLD) - Late Infantile
  32. Niemann-Pick Disease (NPD) – Type A
  33. Non-Small Cell Lung Cancer -- with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
  34. Ornithine Transcarbamylase (OTC) Deficiency
  35. Osteogenesis Imperfecta (OI) - Type II
  36. Ovarian Cancer – with distant metastases or inoperable or unresectable
  37. Pancreatic Cancer
  38. Peritoneal Mesothelioma
  39. Pleural Mesothelioma
  40. Pompe Disease – Infantile
  41. Rett (RTT) Syndrome
  42. Salivary Tumors
  43. Sandhoff Disease
  44. Small Cell Cancer of the Large Intestine, Ovary, Prostate, or Uterus
  45. Small Cell Lung Cancer
  46. Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent
  47. Spinal Muscular Atrophy (SMA) – Types 0 and 1
  48. Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent
  49. Thyroid Cancer
  50. Ureter Cancer – with distant metastases or inoperable, unresectable or recurrent

 

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