The Social Security Administration's Compassionate Allowances Initiative: Condition Spotlight on Rubinstein-Taybi Syndrome

Health Soc Work. 2017 Feb 1;42(1):e32-e43. doi: 10.1093/hsw/hlw062.


The Social Security Administration (SSA) Compassionate Allowances List (CAL) was created in 2008, generating a mechanism within SSA for identifying diseases and other medical conditions that by definition meet social security's standards for disability benefits. Currently, over 200 conditions are included in this expedited review program, though few of them are neurodevelopmental in nature. Exploration of a novel method for inclusion of additional conditions on CAL was undertaken using one condition as an exemplar. Peer-reviewed literature available in academic databases was reviewed and used as empirical evidence to demonstrate whether Rubinstein-Taybi syndrome (RTS) invariably met the three disability criteria set forth by SSA. After in-depth exploration of the empirical literature, RTS was found to meet SSA's definition, suggesting this condition should receive consideration as an addition to the Compassionate Allowances Initiative.

Keywords: CREB binding protein EP300; Compassionate Allowances List; Rubinstein–Taybi syndrome; Social Security Administration.

MeSH terms

  • Disability Evaluation*
  • Disabled Persons
  • Humans
  • Rubinstein-Taybi Syndrome / economics*
  • Social Security / standards*
  • United States
  • United States Social Security Administration*