On Wednesday, March 9, over 550 advocates gathered via Zoom and Facebook Live for the virtual 44th Annual Legislative Reception. Held by The Arc of Massachusetts (The Arc) and the Massachusetts Developmental Disabilities Council (MDDC), this year’s theme was “United by Crisis, Uniting for Change: Our Services and Supports Can’t Wait.”
This theme focused on how individuals with intellectual and developmental disabilities (IDD) and autism and their families have been affected by the continuing pandemic in the Commonwealth, and how the time is now to ensure that all services and supports are provided for our community as soon as possible.
As part of the program, The Arc and MDDC named their Legislators of the Year. The Arc’s Legislator of the Year award was given to Representative Michael J. Finn, House Chair of the Joint Committee on Children, Families, and Persons with Disabilities. MDDC’s Legislator of the Year award was given to Senator Cindy Friedman, Chairperson of the Joint Committee on Health Care Financing and Vice-Chair of the Joint Committee on COVID-19 Emergency Preparedness.
Speaker of the House Ronald Mariano presented Representative Finn with his award, and Senate President Karen Spilka presented Senator Friedman with her award. Both Representative Finn and Senator Friedman were presented with artworks created by self-advocates from Northeast Arc’s ArcWorks.
The event was co-emceed by WROR Radio host Lauren Beckham Falcone, who has a daughter with Down syndrome, and Amir Harper, a 15-year-old from Revere with autism who has been an active participant in The Arc’s Operation House Call program.
Our keynote address was given by Elizabeth Bostic, an incredible mother and advocate, who shared the story of how her son, King James, transformed her life. Beth relayed all the many different “hats” that caregivers learn to wear in caring for their loved one, such as insurance navigators, special education experts, mechanics, healthcare professionals, and much more. She described how, in caring for James during the pandemic, she became “a team of one” and ran her own “mini-ICU” at home, in order to ensure James had everything he needed to thrive. Beth also strongly rejected any ideas that people have of this work as a burden: “This was a labor of love. James was a real person. He was important to me and he had so much to bring to the world. … He had the right to live, to love, to work, and to pursue his dreams.”
Speaking about the issues was self-advocate Jonathan Gardner, a young man with autism who has navigated a cancer journey during the pandemic. Jonathan spoke of his difficult experiences in the healthcare industry, facing the trouble of diagnostic overshadowing: “Someone with a disability should have their voice heard. If my voice was heard the very first time then I would have been diagnosed with cancer much earlier than I was. There was just too much focus on the fact that I was autistic over me being a person in pain.” Jonathan’s words strongly reflect the need for The Arc’s priority legislation, Operation House Call, to be passed.
The Arc’s Maura Sullivan provided a resounding call to action for our community, urging us to use the last two years as fuel to come together. She noted that, the last time we were all able to come together to celebrate this event in person 24 months ago, “little did we know that Direct Support Professionals would become the frontline heroes of the pandemic — and that the Workforce Shortage Crisis would become worse than ever before.” While presenting on priorities from The Arc’s bill platform and State Budget request, Maura stressed the importance of taking this moment to advocate for those who cannot, and to advocate together as a community who has been through the last 24 months together.
Closing the event, Executive Office of Health and Human Services Secretary Marylou Sudders acknowledged how the last two years have truly been a “twindemic” for our community, as so many have grappled with Coronavirus and social isolation. But she also looked at this moment and the road ahead as an opportunity to embrace what Maura described as “unity, hope, and opportunity.” She shared Governor Charlie Baker’s proclamation of March 2022 as the 2022 Developmental Disabilities Awareness Month, and for the first time ever, this proclamation was written in plain language.
This event truly showed exactly why our services and supports cannot wait any longer. Watch the replay below and take action by connecting with your legislators.