Inside Our Playbook: 6 Strategic Choices Behind Our Minnesota Pilot

As a community-centered and disability-led organization, MEAction’s strength lies in the choices we make behind the scenes — the ones that shape programs long before launch. With the Minnesota Home Help Navigation Program now underway, here’s an inside look at the strategic choices in our patient-led playbook.

These six strategic choices are not the last word—we’ll keep learning, listening, and adapting as the program grows—but sharing them now offers a window into how we think and why we build the way we do.

At the core of all of our work is a simple belief: the serious problems our community faces point directly to the solutions we need. Our lived experience, as challenging as it may be, can be the wellspring for real innovation if we let it.

1. Open eligibility beyond diagnosis

We chose not to replicate the medical system’s barriers by requiring a diagnosis. Instead, participants qualify based on core symptoms — fatigue, brain fog, and post-exertional malaise (PEM). We use a validated ME/CFS tool to assess the functional impact of PEM on daily life.

2. Design intake for equity

With limited space in this pilot, we didn’t want access to depend on who hears about it first, leaving others locked out. Our intake protocol balances simplicity with fairness, reserving room for under-represented groups and giving us a framework we can keep improving as we learn to reach those most often left behind. You can help by sharing our program materials to spread the word across Minnesota.

3. Shift the burden and provide end-to-end support 

We saw this pilot as a chance to set the bar high in support for people with Long COVID and ME/CFS. That’s why our navigator does more than inform—they take on the administrative burden of applying for the state’s Medicaid Home and Community-Based Services, from paperwork to follow-up calls, and continue providing support until home care services start.

4. Hire for lived experience

This program was designed by an all-disabled team, and we knew the navigator needed lived experience, too—someone who understands the daily realities of energy-limiting illness. One of our smartest choices was hiring Linda Pozen. Read more about the personal and professional experience they bring to helping people navigate new and emerging disabilities.

5. Personalize and pace communications

With an energy-limiting illness, even communicating can be physically and cognitively hard. Participants choose what works best—video, phone, email, or text—and we keep interactions to whatever length is manageable, even just a few minutes. The navigator matches their pace, from short, bite-sized check-ins to a deeper dialogue when extra support is needed.

6. Use tech to turn experience into evidence

We built a custom case-management system to streamline navigation, flag barriers, and reveal patterns. Using established frameworks such as administrative burden and episodic disability, we aim to convert lived experience into evidence—and use it to make the case for more resources to meet the needs of people with Long COVID and ME/CFS.

What’s next

This pilot is just the beginning. These choices reflect how we aim to design programs: thoughtful, participant-centered, and built for lasting impact.

If you’re in Minnesota, help spread the word about the program. Wherever you live, you can support our work so we can keep building solutions for our community.

Ben HsuBorger

U.S. Advocacy Director Minnesota Home Help Navigation Program Director #MEAction