A report on the experiences of citizens in Massachusetts using Self-Direction.
Author: Kaitlin Stober
The Massachusetts Developmental Disabilities Council (MDDC) conducted a statewide survey to better understand the experiences of individuals and families using Self-Direction in Massachusetts. Survey design and administration were supported by members of the Massachusetts Alliance for 21st Century Policy (MA21) and the Massachusetts Department of Developmental Services (DDS). To aid recruitment, DDS Director Sarah Peterson and Statewide Director of Self-Direction Jaclyn Grant, directed all 23 DDS area offices to share the survey with self-direction users.
Survey responses were collected virtually between October 2025 and January 2026. 259 self-direction users and family members from every region in the state participated in the survey. 10% of respondents identified as individuals with intellectual and/or developmental disabilities (I/DD), 84% as family members, and the remaining 6% identified with a different relationship to self-direction. Participants shared reasons why they use self-direct services, challenges they face, and insights into budget, staffing, and other support needs.
About two-thirds of participants chose self-direction for increased choice and control and personalised supports. Most people were satisfied in these areas, with 93% of respondents reporting that their services and supports are, or are sometimes, personalised to their needs and goals, and 82% reporting that they feel they have employer authority to hire the staff they choose.
Budget adequacy emerged as the primary concern, as only 32% of respondents said their budget was sufficient for their needs, and across 2023–2025, only 16–28% of people whose needs increased also received an increase in their budget. Most individuals in the Participant Direct Program reported significant challenges with the fiscal intermediary platform. 78% of respondents said they could not understand information on the platform by themselves, and many highlighted that these administrative burdens impacted their services and supports.
Lastly, many participants shared stories that connected the direct care workforce crisis to their self-direction experience. Inadequate and stagnant budgets made it difficult for individuals and families to offer competitive wages, leaving many people unable to find or maintain direct support staff.
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