Mikelle and I love living in Colorado. The weather changes quickly here. From our vantage point just east of the mountains, we can watch a thunderstorm take shape—clouds gathering in the early afternoon, rising and building until they tower 50,000 feet into the sky within just a few hours. Sometimes they come straight at us. Sometimes they curve away, hammering the eastern plains instead.
We sit beneath the awning with our coffee in hand, watching it all unfold—marveling at the power of the elements gathering over those rocky peaks.
You can feel it before it arrives.
The air stills.
The light shifts.
The sky darkens.
The light shifts.
The sky darkens.
There’s a scent to it—something metallic, something waiting.
And almost without thinking, we rise to steady the outdoor furniture, preparing for the winds of change before they begin to whip around us.
That’s what this moment feels like.
Storm Alert
A recent article from Disability Scoop warns that our nation’s disability services system is facing unprecedented threats—a convergence of Medicaid cuts, rising demand, and policy shifts that may look like efficiency on paper, but feel like loss on the ground.
And here in Colorado, we are beginning to feel those winds shift closer to home.
At the time of writing, we don’t know exactly where everything will land. But on a call with HCPF just yesterday, we heard enough to understand the direction things may be heading.
- Projected cuts to programs we have come to rely on.
A growing emphasis on “natural supports.”
A shift toward more medically focused care.
And an unspoken—but very real—expectation that more responsibility will fall back on families and caregivers… no matter their age. - And layered into that uncertainty are more changes already underway.
- We have learned that the head of HCPF is stepping down.
Our governor’s term ends on January 12, 2027—bringing leadership transition at a critical time.
We will lose a strong and steady disability advocate in Lt. Governor Diane Primavera.
And federal actions, including HR 1, signal additional cuts that will ripple through states like Colorado.
None of these changes happens in isolation.
Together, they create a kind of pressure system—one that those of us closest to this work can already feel building just like those storms coming over the mountains.
And for those of us who live inside this system—not as an abstraction, but as a daily rhythm of care, work, relationships, and community—it doesn’t feel theoretical.
It feels personal to both our Governor and Lt. Governor, to the professionals and bureaucrats, and, most of all, to individuals and their families. But it is not personal. It is a result of HR 1, passed by Congress last summer.
Before There Was a System
Mikelle and I remember a time before there was much of a system at all.
Before HCBS waivers. Before long-term supports had any real structure. Before there was even the language to describe the lives we were trying to build.
For eleven years, we lived in the space between what was needed… and what existed.
Support was meager. Options were scarce. And if something was going to happen for Mikelle—we had to find a way to make it happen ourselves. We fundraised. We asked. We pieced together what we could.
And sometimes, something extraordinary would happen.
A Man, a Mountain, and a Backpack
There was a man we met once in the lobby of the apartment building we lived in when my children were young—a painting contractor, just passing through his day like anyone else, doing some work for the apartment managers, who saw us. I think my son, riding on the back of Mikelle’s wheelchair, doing wheelies and laughing, caught his attention.
He stopped. and asked about Mikelle. And then he asked a simple question: “Is there anything I can do to help?”
What came next still feels like a Colorado story.
He carried a young Mikelle up a 14’er—strapped into a special backpack—raising money for every foot he climbed.
Step by step.
Breath by breath.
Lifting her higher than the system ever could at that time.
Breath by breath.
Lifting her higher than the system ever could at that time.
It wasn’t policy.
It wasn’t funding.
It wasn’t funding.
It was a community, and that mountain climb that paid the therapy bills—a blessing, without question.
But it didn’t cover everyday care. That’s what the system, years later, has made possible. Our fundraising could stretch to equipment and therapy, but not the daily support that sustains a life.
The cost was my retirement. I worked part-time when I could—single parent, part-time worker, full-time caregiver.
We Built Something Better—And Now It’s at Risk
Over time, we and other dedicated advocates, self-advocates, legislators, and policymakers built something more reliable than chance encounters and extraordinary acts of kindness.
We built systems, HCBS waivers, and Medicaid-funded supports. We built a workforce—however fragile—dedicated to helping people live in their communities. We moved from scraping by to building lives. We actually made progress. We went from medical care to inclusive education, employment, and even homeownership.
Parents didn’t need to take a vow of poverty to gain access to Medicaid for their family member with a disability. Our fundraising was effective for durable medical equipment and therapy, but not for everyday support. Thank goodness she had school. The cost was my retirement. I had to work part-time most of the time. Single parent, part-time work, and full-time caregiver. It was tough. But now, those systems are under pressure—nationally and here at home.
And when we hear language like “natural supports,” we understand what that can mean when translated into real life:
Families stepping in to fill gaps. Aging caregivers are carrying more than they should.
Supports quietly thinning—not all at once, but enough to change the texture of daily life. We have lived that version of the system before. And we know the cost.
At the Kitchen Table, It Still Comes Down to This
Every morning, we sit together again—sharing coffee, checking in with Mikelle’s team, tending to the small but essential details that make a life feel steady.
We talk about schedules. About who is coming and going. About how to keep things strong, even when the edges feel uncertain.
Many younger families have never had to fundraise like we did when we were younger and have no idea what it was like when there was no system to lean on for support.
From experience, we know how quickly the burden shifts back to families when that support begins to fray, and the funding runs short.
What We Learned Before There Was Support
Here’s what those eleven years taught us:
- Community will rise—but it can’t replace a system.
- Families will carry more than they should—because they must
- Creativity and grit can build a life—but not without cost.
That man on the mountain was a gift.
But society should never depend on gifts like that to sustain people’s lives. Back then, there were a few families who experienced disability. The number of families who need support is much greater now.
This Is What We Are Protecting
This is not a moment for easy answers.
We understand the reality—there isn’t new money waiting to be found. But that does not mean we are without influence.
In fact, state leaders are asking for our partnership.
If changes are coming—and they are—we have an opportunity to help shape how those changes take hold, and to reduce the harm where we can.
- Lean into the rulemaking process.
Regulations matter. The details matter. This is where we can influence how policies are applied in real life—where we can help ensure flexibility, preserve dignity, and protect continuity. - Bring lived experience into the room.
Not as stories alone, but as guidance. What works. What breaks. What cannot be lost. This is the expertise that systems need right now. - We can help define “natural supports” with clarity and honesty
Community matters—but it cannot replace a system. We must help shape this language so it reflects real capacity, not assumptions. - Advocate for essential supports
Even in times of reduction, some supports are foundational. We must be clear about what sustains health, safety, relationships, and meaningful lives. - Work alongside, not against
This is a moment for collaboration. State officials are navigating difficult constraints, and many are listening. We can help them make better decisions. - Stay connected and organized.
Through EFAP, Coffee Talks with Our Back Office and other community groups, and trusted networks—alignment matters. Our collective voice carries further than any one of us alone.📣 A Call to Action: Hold the Line
Pay attention, but protect your energy. You need steadiness to lead.
Remember what you already know.
You are experts—granted, often tired experts. And, you have done hard things before.
You are experts—granted, often tired experts. And, you have done hard things before.
Keep imagining forward.
Even now, continue building, creating, and planning. The future is still being shaped.
Even now, continue building, creating, and planning. The future is still being shaped.
We have climbed this mountain before—one step at a time, sometimes carried by the kindness of strangers. But this time, we see the storm coming. And we will not go back quietly.