Disability Policy Consortium

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.

05/11/2026

Why It Matters Monday:
Who gets asked vs who gets listened to

There are more opportunities than ever for people to have a voice. Surveys get sent out, listening sessions are scheduled, and community members are invited to share their experiences on decisions that affect them. From the outside, it can look like progress. It can feel like people are finally being brought into the conversation.

But being asked and being listened to are not the same thing.

Because often, that input is gathered after the direction has already been set. The questions are framed a certain way, the options are already defined, and the space to respond exists within those limits. People show up, they share openly, and they offer insight that comes from real experience. And then… not much changes. The input is acknowledged. It’s written down. It becomes part of the record. But it doesn’t always shape the outcome.

Over time, that creates a different kind of distance. Not between decisions and their impact, but between people’s voices and what actually happens next. It starts to feel like participation without power, like being included in the process without being able to influence where it leads.

That’s where the distinction matters. Because when people speak from lived experience, they’re not just adding perspective. They’re pointing to gaps, to consequences, to solutions that might not be visible otherwise. And when that input is taken seriously, it has the potential to shift direction in meaningful ways.

That’s what “About Us, By Us” is grounded in. Not just being asked for input, but having that input shape the decisions being made. Not just being part of the conversation, but part of what comes from it. Because being heard means more than being acknowledged. It means something changes because you spoke.

Have you ever been asked for input, but felt like the outcome was already decided? Share with us in the comments!

And as always, a huge thank you to this weeks and for helping keep disability advocacy visible, human, and impossible to ignore.

05/05/2026

This weekend, the Boston Globe published an op-ed on wheelchair repair delays and why this issue cannot be ignored any longer.

Written by two physicians, Katherine Gergen Bernett & Anthony Mell, in collaboration with our community organizer Destiny, this piece brings together clinical insight and lived experience to show what these delays actually mean in real life.

Wheelchair users across Massachusetts are waiting months for repairs. Not because the need isn’t urgent. But because the system isn’t built to respond like it is. And while we wait, everything else keeps going. Work. School. Medical care. Daily life.

Take a moment to read and share. Awareness matters, and so does making sure the right people see it.

Link to article: tinyurl.com/Wheelchair-OPED

*Note, it is behind a paywall. If you would like to access but cannot due to financial constraints please Email Destiny at dmaxam@dpcma.org to get a copy!*

05/05/2026

From our friends at SCIboston, applications are now open for the Travis Roy Legacy Grant Program.

Grants of up to $5,000 are available to individuals living with spinal cord injuries to help cover things like durable medical equipment, home modifications, and vehicle adaptations that support greater independence.

These supports can make a real difference in day-to-day life. If you or someone you know could benefit, now is a great time to apply.

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