Six Steps for Building a Life That Can Bend Without Breaking
Years ago, I wrote a blog called Five Steps to Secure Your Child’s Future.
President Obama was in office, sequestration was the word everyone was trying to understand, and deep federal spending cuts were beginning to move from Washington into the programs families like ours depended on. Colorado’s Division of Vocational Rehabilitation moved into an Order of Selection because it didn’t have enough resources to serve everyone.
Mikelle and I even ran into Congressman Ed Perlmutter at our neighborhood Starbucks. Coffee in hand, we asked him what he thought would happen to funding for people with disabilities. He was hopeful, but he couldn’t give us any guarantees.
I remember that conversation because here we are, all these years later, having a remarkably similar conversation.
Only Mikelle isn’t a young woman just beginning to build her adult life anymore. She is 42. She owns her home. She works. She has a podcast, a small bracelet business, an art practice, and a community of people who know her at coffee shops, galleries, meetings and events around Denver. Most importantly, she has built a life that belongs to her.
And once again, the ground beneath that life is shifting.
In 2025, Congress passed a major federal reconciliation law that changed Medicaid eligibility, enrollment and financing. Those changes will roll out over several years, but states are already preparing for their impact. Here in Colorado, we don’t have to wait for the future to know what budget pressure feels like. Medicaid providers received a 2% across-the-board rate reduction on July 1, 2026, affecting most services, while the state continues looking for additional ways to control Medicaid spending.
And, in one of those strange circles life sometimes makes, Colorado’s Division of Vocational Rehabilitation is once again operating under an Order of Selection because there are not enough resources to immediately serve everyone who is eligible.
I could almost pull out that old blog, dust it off, and hit publish.
Almost.
Something New.
Because I know something now that I didn’t fully understand then.
A contingency plan is not simply a plan for what we will do when government funding gets cut. It is a plan for how we build a life sturdy enough to weather change.
For Mikelle, Medicaid matters enormously. Vocational rehabilitation matters. Home and community-based services matter. Public policy matters. We will continue to speak up, show up and work with policymakers to protect those resources.
But after more than four decades of raising a daughter with significant disabilities, I also know that no government program was ever intended to create an entire life.
That part belongs to all of us.
So perhaps it is time to revisit those five steps.
1. Revisit the vision.
This was number one seventeen years ago, and I wouldn’t change it today.
Before we start cutting hours, rearranging budgets or panicking over the latest announcement from Washington or the State Capitol, we need to remember what all these services are supposed to support.
A life.
What does your son or daughter want that life to look like? Where do they want to live? What do they want to do during the day? Who do they want around them? Where do work, relationships, recreation, creativity, technology and community fit?
Mikelle’s vision has evolved over the years because Mikelle has evolved. So has mine. A vision isn’t something we write during an IEP meeting, put into a binder, and revisit every five years. It is a living thing.
When resources tighten, the vision becomes even more important because it helps us distinguish between what we have always done and what actually matters.
2. Know your mission in supporting that vision.
Years ago, I wrote that every team needs a leader, and usually that role falls to a parent.
I would write that differently today.
Every person needs people around them who understand the vision well enough to help carry it forward.
For many years I have been one of those people for Mikelle. But at 73, I am thinking differently about leadership. My job isn’t simply to keep managing everything myself. My job is to help build the relationships, systems, knowledge and community that can continue without me standing in the middle of all of it.
That means teaching others what I know, documenting what matters, inviting siblings and friends into the conversation, strengthening Mikelle’s team and making sure her voice remains at the center.
The question has shifted from: How do I keep this going? to How do we make sure this continues?
That is a very different mission.
3. Assess the current situation—and know the numbers.
This one hasn’t changed much.
What does the life you have envisioned actually cost?
Not simply in Medicaid dollars, but in people, time, transportation, technology, housing, training, relationships and unpaid family labor.
Then ask the harder question: What happens if one piece changes?
We no longer have to imagine that possibility. Mikelle’s budget has already been affected by reductions this year, including the July 1 provider rate cut, and Colorado continues to wrestle with significant Medicaid budget pressures.
A 2% reduction may sound small when it is printed in a state budget document. Around our kitchen table, it looks different. It can mean fewer dollars available to recruit and retain good people in a workforce that was already difficult to build.
So run the numbers. Know what Medicaid pays for. Know what it doesn’t pay for. Know which supports are essential, which can be reorganized, and where the gaps are.
You cannot build a contingency plan around numbers you don’t know.
4. Anticipate change without letting fear run the show.
I still love something I wrote in that original blog: successful families are like information-seeking missiles.
We smell change on the wind.
We talk with other families, providers, policymakers, and community members. We attend meetings. We ask questions. We read the notices that arrive in our inboxes. We call when something doesn’t make sense. We compare notes.
Today I would add one more thing.
We need to learn the difference between being informed and being consumed.
There is plenty to worry about right now. Federal Medicaid changes are beginning to roll out. Colorado is making difficult budget decisions. DVR has returned to an Order of Selection. More changes are likely.
We need good information so we can respond, not react.
That is still our parental response-ability.
5. Build a 90-day action plan—and widen the circle.
Mikelle and I have always liked short action plans. Ninety days is long enough to accomplish something and short enough to keep us from disappearing into planning forever.
Gather the people who matter.
Not only family members and paid providers.
Invite the neighbor. The person from church. The former coworker. The friend who understands technology. The business owner who knows everybody in town. The retired professional with time on their hands. The sibling who lives three states away but can manage paperwork online. The person who meets your daughter every Tuesday for coffee and may not even realize how important they have become.
Then ask a different question.
Instead of asking, How do we replace what government might cut? ask, What does each person, organization and system around us have to contribute to this life?
Government cannot—and should not—be replaced by volunteerism. Medicaid is health care. Home and community-based services allow people with significant disabilities to live outside institutions, work, participate in their communities and direct their own lives.
But Medicaid was never meant to buy friendship, belonging, purpose or an entire community.
Those things are built.
All those years ago, I ended this blog hoping Congress would find a way to balance fiscal responsibility with our country’s responsibility to people who need support.
I still hope for that.
But I have lived enough life since then to know I don’t want Mikelle’s future resting entirely on what happens in Washington or underneath the gold dome in Denver.
Her future is sitting around our kitchen table. It is in the coffee shop where someone asks about her bracelets. It is in the team member learning how she communicates. It is in the employer willing to see talent differently. It is in the friend who shows up, the neighbor who notices, the technology that expands possibilities and the community that has slowly grown around her over four decades.
Government funding is part of the structure and, of course, a very necessary part. And the days of it being a sole source of support may be limited.
So if I were writing those five steps for families today, I might add a sixth:
6. Build something that can bend without breaking.
We cannot predict what Congress will do next year, what Colorado’s budget will look like three years from now, or what programs will be called ten years from now.
But we can build relationships. We can transfer knowledge. We can develop leadership in the next generation. We can document what works. We can diversify resources. We can strengthen neighborhoods and communities. And we can keep the person with the disability—not the program, waiver, budget or bureaucracy—at the center of the plan.
Seventeen years ago, I called that a contingency plan.
Today, I think I would call it building a future.