I Didn’t Choose This Work—I Lived It”

I Didn’t Enter This Work Because of Policy. I Entered It Because I’ve Lived the Gaps.

There’s a version of this work that gets talked about in frameworks, policies, strategic plans, and funding priorities.

And those things matter.

But that’s not what brought me here.

I entered this work because I know what it feels like to need support and still struggle to access it. I know what it feels like to spend hours trying to understand systems that were supposed to help. I know the exhaustion of following up, advocating, explaining situations over and over again, and trying to keep everything together while navigating services that often feel disconnected from the realities of everyday life.

My connection to this work is personal.

My experience with intellectual and developmental disabilities (IDD) began long before I ever held a professional title connected to this field. I’ve navigated services as a caregiver, and I’ve also worked as an employer of people with IDD. Those experiences gave me two very different views into the same issue: access.

Not theoretical access.
Not “services exist on paper” access.

Real access.

The kind that determines whether someone actually receives support, understands the process, follows through with appointments, gets connected to resources, or gives up halfway because navigating the system became too overwhelming.

Over time, I began noticing something that I couldn’t unsee.

A lot of people are not disconnected from services because they don’t qualify or because they don’t care. They become disconnected because the process of accessing support often assumes people already have the time, stability, knowledge, transportation, language access, confidence, and energy needed to navigate complicated systems on their own.

And many people don’t.

That reality became even more visible during the COVID-19 pandemic.

During that time, I worked closely with marginalized communities helping people connect to services while systems themselves were constantly changing. Offices were closed. Processes shifted overnight. Information changed weekly. Programs moved online even when many people lacked reliable internet access, technology, or digital literacy.

What was already difficult suddenly became nearly impossible for some families.

I remember seeing how quickly people became disconnected—not because services disappeared, but because access became harder to maintain. A missed phone call turned into a delayed appointment. Confusing paperwork became months without support. Long hold times, transportation barriers, language barriers, and changing requirements created layers of frustration that pushed people further away from the very systems designed to help them.

That experience changed how I think about access.

It reinforced something I had already started to understand: access is not automatic simply because a service exists.

People often need guidance. They need follow-through. They need someone who can help bridge the distance between a system and real life.

That understanding continues to shape my work today.

As an Access & Equity Strategist, I spend a lot of time thinking about how systems function at the point where people actually experience them. Not how they were intended to work. Not how policies describe them. But how they feel to navigate when someone is already overwhelmed, under pressure, or trying to meet basic needs.

I pay attention to the smaller things that are often treated as minor barriers but become major obstacles in practice: unclear instructions, complicated intake processes, missed follow-ups, inaccessible communication, limited office hours, transportation challenges, and the assumption that people can continuously advocate for themselves without support.

Because those things matter.

They shape whether someone successfully connects to care or quietly disappears from the process.

Over time, I’ve come to believe that improving access is not just about creating more services. In many cases, services already exist. The bigger challenge is making sure people can actually reach, understand, and use what is already there.

That requires more than information.

It requires systems that are built with real people in mind.

And for me, that work will always be personal.