Some victories don’t show up in the final vote tally. They show up in who stood with us.
This year’s legislative push for family choice in care models for people with intellectual disabilities was not successful in the House budget. The amendments supported service options and care for individuals with intellectual and developmental disabilities (IDD). These included access to intermediate care facilities, in line with federal Medicaid law. The House rejected the amendments, as COFAR reported in its recent post. But focusing only on the final vote misses the deeper story — a story of leadership, courage, and a community that proved it is no longer standing alone.
A coalition stepped forward and that matters
For decades, families supporting individuals with the most significant disabilities have struggled to be heard — especially in Massachusetts. Their concerns rarely fit neatly into prevailing narratives about disability services. Yet this year, something different happened: legislators from across the Commonwealth stepped out of their comfort zones to support a population that is too often overlooked.
This effort began with COFAR, which stepped forward early and forcefully to champion these amendments. Their leadership created the opening that made everything else possible. SWHA joined immediately, recognizing how rare it is for the needs of high‑acuity individuals to receive this level of legislative attention. What followed was a genuine partnership — families, advocates, and organizations working side by side to elevate a population too often left out of policy conversations.
Rep. Marcus Vaughn deserves particular recognition. Throughout the process, he demonstrated steady, thoughtful leadership — listening carefully, asking hard questions, and treating the issue with the seriousness it deserves. His willingness to champion these amendments sent a clear message: the needs of the most profoundly impaired individuals are worthy of attention, respect, and legislative action.
Eighteen additional bipartisan co‑sponsors joined him. They did not do this because it was politically advantageous. They did it because it was right. Their support showed that there are lawmakers who are willing to look beyond ideology and consider the lived realities of families who rely on high‑acuity care.
New voices made a difference
This effort also revealed the emergence of new advocates. Maura Drummey, in her first year with COFAR as Deputy Director of Advocacy and Development, played an extraordinary role. She visited lawmakers, engaged the public, and used social media to bring visibility to an issue that rarely receives it. Her work energized families and helped build momentum at a critical moment. For someone so new to the field, her impact was remarkable.
The movement continues
It is true that the amendments did not survive the internal budget process in the House, but focusing solely on that outcome obscures what was gained:
- A bipartisan group of legislators publicly affirmed that high‑acuity individuals deserve meaningful choice in care.
- Families saw that they are not isolated. There are lawmakers, advocates, and new leaders who are willing to stand with them.
- A public record was created that will strengthen future efforts.
- A new generation of advocates stepped forward with skill and determination.
These are not small things. They are the foundation of long‑term change.
A different kind of victory
If victory includes building alliances, elevating marginalized voices, and demonstrating that courage still exists in public life, then this year’s effort in the House budget was a success.
This effort showed that we are not alone. It showed that leadership can come from unexpected places. And it showed that when families speak clearly and consistently, people listen.
We didn’t win these House budget amendments. But we won something else — proof that there are leaders who see us, hear us, and are willing to stand with us. That is the beginning of change.
The work continues as the budget moves through the Senate and as we pursue progress in other arenas — but we move forward stronger, more connected, and more hopeful than before. Please consider joining COFAR and SWHA as we continue this advocacy: for meaningful choice, to uphold Medicaid-aligned options, and to ensure that individuals with the highest acuity needs can access appropriate care.
We are urging our members to email their state senators as soon as possible, and ask them to agree to file an amendment to establish a right to ICF care for those who are eligible for that level of care.