A Street-Level Perspective of Supplemental Security Income: The Application Experiences of Family Members on Behalf of Individuals with Intellectual/Developmental Disabilities

Background and purpose

In 1974, Supplemental Security Income (SSI) began in the United States as a critical source of financial support for many individuals with intellectual/developmental disabilities (IDD), enabling them to live in the community while reducing the impact of poverty and providing access to necessary supports.  Despite the passing of 40 years and numerous anecdotal challenges, a dearth of research exists regarding the translation of SSI policy into practice.  An online survey was conducted to explore the experiences of service coordinators and family members who applied for SSI on behalf of individuals with IDD.  The present research focuses on the experiences of family members, particularly: the parts of the application process that facilitated success, barriers that hindered the procurement of benefits, and suggestions for improvement. 

Methods

An online survey, comprised of a single measure constructed from focus groups/interviews and piloted by the primary research, was disseminated through email and social media to national organizations serving families and individuals with IDD.  Data collection lasted for six months.  Survey responses to 5-point Likert scaled items were dichotomized to contrast scores 4 and 5 (e.g. agree/strongly agree) with all other response options.  Where appropriate, chi-squares were used to analyze differences by U.S. Census region and time of filing SSI application.    

Results

Selected results of 483 family member respondents are presented.  Between 25% and 50% of family members identified various challenges with the application process (e.g. understanding paperwork, procuring necessary paperwork and redundancy in paperwork), with 25% having more than one person in the household with a disability.  Emergent trends were noted for changes in primary sources of SSI information over the past five years with a two-fold increase in medical providers, family, service coordinators and online resources as initial sources.  Family member attendance at benefit trainings was associated with an increased likelihood of being awarded SSI as well as increased awareness of online SSI resources and knowledge of what to do following application denial. However, there appears to be a downward trend in training attendance.  A majority of families (i.e. >80%) recommended simplifying the application process for individuals with severe/lifelong disabilities, increasing transparency of the process and clarity of correspondences, having SSA fieldworkers specialize in IDD, and improving online services.  Regional differences were noted for various aspects of the application process (e.g. initial sources of information about SSI, challenges, and time spent in SSA offices).

Conclusions and implications

Although SSI is statutorily mandated by the US Congress, understanding the experiences of family members illuminates the implementation of policy at the street level.  This study provides a preliminary effort to elucidate the application process while highlighting challenges at various points of the process and areas for potential improvement.  Although the SSI application process relies upon standardized questions and procedures, regardless of the type of disability, such may be irrelevant or inappropriate for particular diagnoses, such as severe and profound intellectual disability.  There is need for greater sensitivity toward intellectual/developmental disabilities as well as more in-depth analysis of potential regional differences.