Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study

Abstract

Background

Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults.

Methods

We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach.

Results

There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance.

Conclusions

These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood.