Julie – Finding Power in Community

Julie has always felt a keen awareness of the social injustices surrounding her. She recalls moments as far back as first grade where her actions to support others stemmed from those innate feelings. It fueled her desire to right an imbalanced system and propelled her into community organizing after college. 

But when she was diagnosed with multiple sclerosis in her early twenties, her journey shifted toward healthcare advocacy. Knowing she would need greater earning power, she pursued graduate school and a career in clinical social work.

That decision cost her: Because of her diagnosis — at a time when there were no protections for pre-existing conditions — Julie was uninsurable. 

“No one would insure me,” she says. “Even if I had the money, I couldn’t buy insurance.”

Julie was adamant about staying off public benefits so she could continue working. She paid for care out of pocket for as long as she could, but it simply wasn’t sustainable.

The year before she enrolled in Medicaid, Julie was hospitalized 14 times, primarily for infections and pressure sores that are largely preventable with proper medications, supplies, and equipment. Eventually, she was unable to receive care without coverage, forcing her hand.

Since enrolling in Medicaid, Julie has been hospitalized once.

“I can take the medications I’m prescribed. I can get medical supplies. I have a wheelchair that fits me,” she says. “Medicaid has made a huge difference.”

What stayed with Julie most was not only that the system failed her but that she had advantages many people in the disability community do not — including a graduate degree, employment history, and a disability that does not affect her ability to speak or think.

“If I couldn’t make it work to stay employed, that said something,” Julie says. “We still have huge inequities.”

That moment became a turning point. If the system required people to experience poverty to survive, then the system itself needed to change.

Julie moved to Colorado in the mid-1990s after meeting her future partner at a protest in Washington, D.C. Seeking disability healthcare advocacy work, she was directed to the Colorado Cross-Disability Coalition (CCDC), a young organization founded in the wake of the Americans with Disabilities Act.

Julie showed up and asked if she could help.

“They said, ‘Sure. You’re the director of policy,’” she recalls.

More than 30 years later, Julie remains with CCDC, helping guide an organization whose mission is to build the power and influence of the disability community to advocate for social justice.

CCDC’s vision centers on social, financial, and political equality for people with disabilities. That means accessible housing and transportation, meaningful employment, and people with disabilities serving in public office, working inside government agencies, and shaping the systems that affect their lives.

For Julie, advocacy has always been about creating the table — and making sure people feel welcome to pull up a chair.

Over time, CCDC’s work has expanded from a primary focus on physical accessibility and direct organizing to include policy change, implementation support, accountability, and individual advocacy.

One example Julie points to with particular pride is CCDC’s work on the state’s Medicaid Buy-In program for people with disabilities. The organization helped advocate for its passage, remains deeply involved in protecting it over time, and continues working to ensure it functions as intended.

When Colorado implemented the Medicaid Buy-In program, Julie was able to earn income without losing coverage.

For Julie, the program represents exactly what CCDC strives to achieve: policy change rooted in lived experience that creates real opportunity.

As physical access has improved, other gaps have become more visible. Communication access, such as the need for interpreters for Deaf community members and note takers or navigators for people with cognitive disabilities who need support in medical or legal settings, is one prominent area.

CCDC adapts because the community tells them where the needs are. Julie says the organization sets its priorities by listening closely to people who reach out and share what they are experiencing.

One of the places Julie sees meaningful change today is in CCDC’s long-standing collaboration with Rocky Mountain Health Plans (RMHP).

When Colorado first implemented Regional Care Coordination Organizations, RMHP leadership reached out to CCDC for honest community feedback. Together, they began listening tours across Western Colorado, asking people what was working, what was not, and how they wanted to engage.

Those conversations led to the creation of a member council facilitated by CCDC, where members meet regularly with leadership from the health plan.

The feedback isn’t always easy. Some issues take time to solve, while other attempts fail. What matters to Julie is that RMHP’s leaders come back, explain what they tried, and continue working toward solutions.

CCDC also uses its role as an advocacy organization to support issues beyond RMHP’s direct control, while RMHP brings questions to the council about new tools, programs, and communication approaches. Julie believes in-person meetings create a different, more collaborative environment than virtual-only engagement. The opportunity to meet face-to-face fosters the necessary trust, stronger relationships, and proper accountability required to enact change. She consistently sees strong engagement in rural communities, where people appreciate it when statewide organizations show up and take time to listen.

Julie finds energy in watching people gain confidence, take on leadership, and realize they can shape the systems around them. She also believes deeply in the possibility of change.

“We have seen a lot of positive change,” she says. “People can make a difference if they choose to.”

Inclusion starts with creating space for people who have historically been left out and inviting them into conversations about how systems work, not only about their individual care. For Julie, true inclusion means involving people with Medicaid not only in their own care but in shaping policy, advocacy, and how systems function.

Julie hears the same phrase again and again from people who contact CCDC: “I’m calling because I don’t want this to happen to someone else.”

That instinct to protect the next person is what sustains the work. It is also what continues to draw new people into advocacy — people who may not have seen themselves as advocates before.

“If you want to make things better for yourself and other people, there’s a space for you in the advocacy community,” Julie says. “There’s a space for you in these councils. Be part of the solution and help preserve what’s good and make better what isn’t.”

For Julie, that is where real change begins: when people find their voice and discover the possibilities of one collective sound.