Latest Update

January 8, 2026 Update from Leo Sarkissian

We are pleased to post this update on the project After I’m Gone. This initiative focuses on a key challenge facing families of individuals with intellectual and developmental disabilities and autism.  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 being engaged with families and being the leading family advocacy organization in Massachusetts.

Here’s the progress we’ve made thus far:

1. Research and discovery work started in January 2025. We held three well-attended sessions online, receiving helpful feedback during each session. We then held a February session providing a future planning example with the Milorin family and attorney Fred Misilo. We followed up with a session facilitated by Jackie Doherty, Director of Education and Outreach at The Arc of Massachusetts.
2. We held four focus groups and two training sessions. Three sessions were held in person, and three sessions were virtual. Participants included parents, siblings, and self-advocates, while the training session included parents and siblings. We appreciated the assistance of Lifeworks, The Arc of Plymouth and Upper Cape Cod, Cooperative for Human Services, Merrimack Area Advisory Board, Gianfranco Zaccai, Gyasi Burks-Abbott, and other colleagues and chapters of The Arc. Participants freely gave their time and openly shared their feelings and thoughts. Our goal was to get deeper, update our knowledge base, and prioritize work for the initial launch of the project.
3. We met or contracted with others working toward similar goals, including:
   1. Colleagues across The Arc and elsewhere who are addressing issues on aging and future planning. A partial list includes Northeast Arc, Berkshire County Arc, and The Arc of Bristol County.
   2. Colleagues Christine Hubbard and Chris Peltier from the Subcommittee on Adults of the State’s Autism Commission.
   3. Ellen Kilicarslan, Statewide Family Support/DESE Program Director at the Department of Developmental Services.
   4. Jennifer Petersen, an assistive technology (AT) professional, to provide a state of the state related to our project goals with the use of technology and AI
   5. An additional focus group with financial planners, attorneys, and trust entities to help us identify useful existing resources and to update our list regarding these and other professionals.
4. The Arc Team: Stephanie Shore joined us as Project Manager to help us stay on course. CEO Maura Sullivan, Senior Director of Development and Communications Katrin Aback, Director of Education and Outreach Jackie Doherty, and Director of Communications Katerina Daley all participated in planning and are now pivoting to implementation activities. We have a deep volunteer leadership bench which continues to guide the project.
5. Preparations for Launch: We are in the final weeks of preparing to launch phase one of the project. We’ve asked Dotty Foley to join Stephanie, Jackie, and me in preparing the site content. The Arc’s internal team will be reviewers.  We have a list of 100 participants who we will ask to review some of our materials over the first two weeks of January to share their feedback. We will continue to request feedback over the next few months on all our offerings.
6. Speaking to a Wide Audience. We are very aware of the breadth and diversity of our constituents. We want to ensure some connection to the many diverse cultural or ethnic communities in our state. We know that all our constituents – regardless of color, race, or ethnic background – struggle with planning. But our advisors and focus groups remind us that there are other aspects to the breadth of our constituents:
   1. The range of assistance an individual needs.
   2. Socio-economic characteristics.
   3. Each family’s awareness of disability and knowledge of services.
   4. Those with and without a family or close network.
   5. Differences among individuals in their sense of belonging, self-esteem, and fulfillment.

Consequently, more conversations and planning are needed to help families customize planning cost-effectively. We plan to reach our constituency with a sustainable project in collaboration with other organizations, while realizing that our outreach will never be done.

Project Introduction

The Arc of Massachusetts is excited to announce that Leo Sarkissian, who recently retired as Executive Director after 33 years of transformative leadership, has taken on a new role as Innovation Development Director. In this position, Leo will oversee the newly established Leo Sarkissian New Initiatives Fund, which aims to identify and implement forward-thinking solutions to meet the evolving needs of individuals with intellectual and developmental disabilities (IDD) and autism and their families.

The New Initatives Fund’s first major initiative, “After I’m Gone,” will focus on providing families with critical tools, resources, and guidance to ensure their loved ones with IDD and autism are supported and secure in the future. This initiative will help families navigate complex planning processes related to housing, financial planning, and long-term care, offering peace of mind and practical solutions.

The Arc of Massachusetts received a Cummings Foundation grant to support our work on this project.

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