2020 Evaluation of Experiences with Self Direction in New York State: A Focus on Sustainability


In 2020, people participating in New York State’s self-direction plan were surveyed about their experiences with self-direction. The primary goal of the survey was to examine the sustainability of self-directed services: how families plan to navigate a self-directed model when the primary caregiver (typically a parent) can no longer provide support for the self-directed process. The survey asked respondents to answer questions from the perspective of the natural support. Information was also gathered to better understand self-direction in New York State and to learn more about the benefits and challenges around self-direction. Individual experiences with self-direction are important and will help make policy decisions about services for individuals with intellectual and developmental disabilities, as well as to help inform planning tools to support the sustainability of self-direction. This report summarizes the findings of the survey, and explores both the current benefits and challenges of self-directed supports as well as the sustainability of self-directed supports when natural supports can no longer support the process.

Suggested Citation

Kulchinsky, A., Winkler, S., Hallas, L. J., Hall, S., Pettingell, S., Curtner, S., Donaghy, T. J., Tran, T., & Hall-Lande, J. (2021). 2020 evaluation of experiences with self direction in New York State: A focus on sustainability. Independent Support Services, Inc., and Institute on Community Integration, University of Minnesota. https://ici-s.umn.edu/files/QpgFykE-Rj/2020-ny-sds-self-direction-report


Independent Support Services, Inc. [NY]
Self-Directed Supports with Independent Support Services