We are happy to share this short update on the After I’m Gone program. A longer version is available on the program’s landing page. This initiative focuses on a key challenge facing individuals with intellectual and developmental disabilities and autism and their families. What happens when a family member can no longer be the primary caregiver, coach, or supporter?
We are so grateful to the 500+ family members and staff who have connected to this project so far via webinars, focus groups, and other activities. Over the past 12 months, we have gained new insights to complement our knowledge developed over decades of engagement with families and being the leading family advocacy organization in Massachusetts.
Research and discovery work started in January 2025. It included a range of activities with the goal of launching some resources and activities in the coming weeks (late January 2026). A leadership committee of staff and volunteers continue to guide the project, including four members who generously seeded this work.
- A series of webinars which provided information and gathered feedback from families and others regarding this topic. These sessions occurred in the first quarter of 2025.
- Six sessions with smaller groups. Five of them were tailored to obtain input from small groups of families, self-advocates, and professionals in this topic area. Two additional sessions combined training with soliciting input. Our goal was to get deeper, update our knowledge base, and prioritize work for the initial launch of the project. These sessions took place over several months.
- We met or contracted with others working toward similar goals. These meetings included providers, chapters of The Arc, state officials, the Subcommittee on Adults of the State’s Autism Commission, and professionals in assistive technology and family support.
- In our exploration, we further appreciated the breath of our constituency, including differences in:
- the range of individual support needs.
- socio-economic characteristics.
- the level of family disability awareness and/or knowledge of services.
- those with and without a family or close network.
Consequently, more conversations and planning are needed to help families customize planning cost-effectively.
We look forward to rolling out After I’m Gone resources and activities on January 27. We hope to be responsive to family concerns and needs and look forward to your feedback online and in meetings.
