Disability Policy Consortium

05/28/2026

🤩 30th Anniversary Gala Award Announcement and Tickets 🤩

In honor of our 30th anniversary in 2026, we are hosting the DPC 30th Anniversary Gala on November 19th at Artists for Humanity in Boston. This is a milestone celebration, so the event will look a little different from our typical annual events.

The biggest change for this year is that, instead of presenting three awards to outstanding leaders in the disability community, we have decided to present just one award in 2026 - the Visionary Changemaker Award.

And we are thrilled to announce that the recipient of the 2026 Visionary Changemaker Award is...Charlie Carr!

Charlie is a legend in the disability advocacy space. Long before DPC existed, his leadership was already helping shape the disability rights movement in Massachusetts and across the country. As one of DPC’s founders, he brought that vision to an organization that has had a meaningful impact on the lives of so many people. His influence extends far beyond DPC itself, and his work over the years has built the foundation of the disability rights movement we see today. In his current role as DPC's Legislative Liaison, Charlie's leadership and example continue to guide our community-based advocacy.

There is truly no one more deserving of this award - congratulations, Charlie! 👏

We hope you'll join us in November to celebrate Charlie and 30 years of the DPC. To learn more about the event and secure your ticket today, please visit dpcma.org/dpc-30-gala

Stay tuned for more exciting Gala updates! 👀

Please reach out to [email protected] with any questions about the 30th Anniversary Gala.

05/26/2026

Why It Matters Monday: (On Tuesday)
When urgency isn’t treated like urgency

There are certain problems most people expect to be handled right away. If your heat goes out in the middle of winter, you don’t wait weeks for someone to come take a look. If your bathroom floods, you’re not told the next available appointment is next month. Those situations are treated as urgent because they interrupt daily life in ways that are immediate and easy to understand.

But not everything that disrupts daily life is treated the same way.

For many wheelchair users, when a chair breaks or a part stops working, the timeline looks very different. Days turn into weeks, and weeks can turn into months. Appointments get pushed back, parts arrive but aren’t installed, and in the meantime, life is expected to keep moving forward. Except it doesn’t move the same way. When your mobility is limited, everything around you starts to shift. Getting out of bed becomes more complicated. Leaving the house may not be possible. Work, appointments, and routines start to fall apart around something that hasn’t been fixed.

The urgency is there. It just isn’t understood that way. Because urgency isn’t only about how quickly something is addressed. It’s about how clearly the impact is understood.

When you don’t rely on a piece of equipment to move through your day, it’s harder to fully grasp what it means when it stops working. From a distance, it can look like a delay. From the inside, it can feel like everything coming to a halt. And that difference shapes the response. When the impact isn’t fully understood, the urgency doesn’t carry the same weight. Decisions get made, timelines get set, and the response reflects what looks manageable, not what is actually being experienced.

That’s why it matters who is in the room when these systems are shaped. Because when the people living that urgency are part of the conversation, it stops being abstract. It becomes something that has to be responded to in real terms, not just managed from a distance. That’s what “About Us, By Us” is grounded in. Not just moving faster, but understanding better.

Reflection: What’s something in your life that felt urgent, but wasn’t treated that way?

05/19/2026

What it means to be trusted in this work

This week, we’ve been talking about what it looks like to move from being asked, to being listened to, to actually shaping what happens next.

But there’s another layer to that. Trust.

You can create space for people to show up. You can invite participation. You can ask for input. But trust shows up in what you’re willing to let people lead. The Paul Spooner Summit is a good example of that shift.

This year will mark its fourth year, and over time, it’s changed. In the beginning, like many events, it relied more on set presenters and structured programming. But as the community grew, so did the approach. In the last few years, that structure has shifted.

Instead of relying on outside presenters, alumni from past cohorts have taken the lead in shaping the sessions, creating presentations, and deciding what conversations matter most. And it shows. Not in how polished it is, but in how grounded it feels. The topics reflect real experiences. The discussions go deeper. People engage differently when they know the space is being shaped by others who have been in it with them.

It also changes how people see themselves in the work. For new leaders coming in, there’s something to look toward. They’re not just attending, they’re stepping into something they can eventually help shape themselves. That shift doesn’t come from simply inviting people in. It comes from trusting them enough to lead, and allowing the work to evolve because of it.

05/18/2026

Why It Matters Monday:
What changes when input actually shapes decisions

Earlier this month, we talked about the difference between being asked and being listened to. Today, it’s worth looking at what happens when that input actually changes something.

For a long time, public hearing notices at the State House could come with as little as three days’ notice. On paper, that might seem manageable. Three days is still time, enough to prepare, enough to show up. But in practice, it created a barrier.

When you’re living with a disability, showing up isn’t always simple. Transportation has to be arranged. PCA services need to be coordinated. Work schedules, medical appointments, and daily routines often have to be shifted just to make it possible to be there. Three days didn’t leave enough room for any of that, which meant that many of the people most impacted by these decisions weren’t in the room when they were happening.

That reality was raised again and again through the work of DPC organizers and community members. Not as a one-time comment, but as a consistent pattern that made it clear something wasn’t working. And this time, it didn’t just get acknowledged. It led to change.

Now, there is a standard of ten days’ notice before a public hearing. It’s a small adjustment on paper, but in real life, it makes participation possible in a way it wasn’t before. It gives people the time they need to plan, to prepare, and to actually be part of the conversation.

That’s what it looks like when input shapes the outcome. Not just being asked for perspective, but having that perspective carry enough weight to change how something works.

That’s what “About Us, By Us” is grounded in. Because when the people most affected are part of shaping decisions, the result doesn’t just look reasonable. It works in real life.

What’s something in your life that works better because people spoke up and were actually heard?

05/15/2026

05/15/2026

We’re thrilled to share that we've been named a 2026 Nonprofit Excellence Award finalist in the Advocacy category! 🥳 Check out this post from Massachusetts Council of Nonprofits to see all the other finalists doing amazing work in our community.

Join us in supporting all of the finalists and celebrating the Massachusetts nonprofit sector at the reception on June 17: https://www.tfaforms.com/5219921

05/14/2026

Take Action Thursday

This week’s call to action reaches beyond Massachusetts. We’re asking our community across the country to speak out against the use of electric shock devices (ESDs) on disabled people.

The Judge Rotenberg Center (JRC) in Massachusetts is currently the only facility in the United States using electric shock devices as a form of behavioral control. These devices have been widely condemned by disability advocates, psychology experts, the United Nations, and many others due to the severe physical and psychological harm they can cause.

The FDA has proposed a ban on these devices, and a final ruling is expected soon. Now is the time to make sure elected officials hear clearly from the disability community and our allies.

If you live in Massachusetts:
Contact Sen. Ed Markey and urge him to support the FDA ban on pain-inflicting electric shock devices (RIN: 0910-AI84).

If you live outside Massachusetts:
Contact members of the Senate Committee on Health, Education, Labor, and Pensions (HELP) and ask them to support the FDA ban.

This is not just a Massachusetts issue. This is about how disabled people are treated in this country, and whether pain and fear are ever accepted as “care.”

Learn more and take action here:
https://stoptheshock.info/

05/13/2026

Are you a person living with an intellectual and/or developmental disability (I/DD) living in Massachusetts? A family member? A provider or community member?

Our friends at the Massachusetts Developmental Disabilities Council (MDDC) want to hear directly from you.

MDDC is currently gathering community input to help shape their new Five-Year State Plan, which will guide their future work and how they support people with developmental disabilities and their families across Massachusetts. Your experiences, priorities, and needs matter, and this survey is a chance to help make sure the plan reflects the real wants and needs of the community.

Take the survey here: surveymonkey.com/r/CGSXQKF
Spanish version: es.surveymonkey.com/r/LS88X7X

Please share widely with people in the I/DD community across Massachusetts! Please note if you would like support filling out the survey you can reach out to Kaitlin or Liz and they will schedule a call with you! Survey takes around 15 minutes!

05/12/2026

What gets missed when we’re not in the room

Yesterday, we talked about the difference between being asked and being listened to. Because the reality is, people are often asked to share their input. But that doesn’t always mean that input is shaping what happens next.

Sometimes it becomes something to point to, a step in the process that shows engagement happened, without actually changing the direction. And when that happens, it raises a bigger question. Who is actually being listened to? Because when input becomes something to check off rather than something to act on, the impact doesn’t stop at that moment. It carries forward into the decisions themselves.

That’s where things start to get missed.

A timeline gets set without understanding how long something actually takes in real life. A requirement is added that works on paper but creates extra barriers in practice. A limit is put in place without seeing how it plays out across a full day, not just one moment.

Individually, those decisions can seem small. Reasonable, even. But they’re built on an incomplete picture. And when those missing pieces aren’t caught early, they don’t stay contained. They show up later, when people are trying to navigate systems that don’t quite fit their lives.

That’s what happens when the people most affected aren’t truly part of shaping the decisions. Not just asked. Not just acknowledged. But actually listened to in a way that influences the outcome.

“About Us, By Us” is about closing that gap.

Because when people are part of the conversation in a meaningful way, those blind spots don’t get carried forward. The questions get sharper. The trade-offs get clearer. And the solutions have a better chance of working in real life.