It is Oct 1, 2025—another government shutdown.
In the quiet hours before dawn, when the world still clings to hope, a mother sits on her porch, coffee growing cold, wondering: How will we manage tomorrow? For families like mine — families of disability, of high stakes, of fragile structures held together by resolve — the government shutdown isn’t a remote political drama. It is heartbreak by slow degrees.
The Weight of Silence
We have learned how to live in fragile systems. We trace the lifelines: Medicaid, Home and Community-Based Services (HCBS) waivers, special education funding, and service coordination. These are not luxuries for us; they are the scaffolding that keeps us from falling into despair.
When the government shutters its doors, many programs that support people with disabilities — discretionary ones — fall silent. (The Arc) Offices responsible for monitoring compliance, approving service plans, or funding innovation often experience delays. (AUCD) The Department of Education’s oversight of IDEA (Individuals with Disabilities Education Act) and enforcement of civil rights is threatened by staffing cuts. (Urban Institute) Some programs, such as those under the Administration for Community Living, may face a funding freeze or delays. (AUCD)
To the family relying on these programs — we feel the emptiness in the pauses. Children wait. Therapies halt. Supports waver. Our trust is strained.
A Story at the Heart
Let me tell you about Mikelle (my daughter, my hero). In her life, she walks a fine line between possibility and abandonment. She dreams of a podcast, a small jewelry business, and creative work that uplifts and speaks truth. But in the corridors of policy, she is often invisible.
When funding delays ripple through the system, her support network trembles. Her team waits for assessments to be approved, her assistive technology upgrades have stalled, and her providers are stretched thin. And yet — she continues. She writes, she records, she reaches into social media, and she builds community with every broadcast.
If ever her story is shouted from mountaintops, let it be known: even in uncertainty, she finds her voice.
Writing Through Pain
Since the day I read The Prince of Tides, I marveled at authors like Pat Conroy who wrote the raw truth of a world that should work better but doesn’t. He wrote in the salt-sweet air of the South, the heavy marsh, the ghosts of family wounds and untold love. He taught us that our pain is our map, that stories carry history and hope. (The Writer) So I choose to write through this shutdown not as complaining, but as a witness, as defiance.
I will name the broken, the deferred, the delayed. I will name the people who sit in their rooms, therapy appointments canceled, support staff furloughed, families scrambling. And I will name the hope: the ways we hold on, the wild grace of community, the faith that policy must bow to people.
Strategies for Surviving the Dark
When the system shuts down, we become our own first responders. Here are strategies some in our community are using now:
- Emergency Reserves & Micro-funds
Create a “shock fund” — even small savings or community loan pools to cover care gaps, respite, or temporary staffing. - Redundancy in Supports
Cultivate back-up providers, cross-training team members, building relationships with local nonprofits that can flex when state systems pause. - Community Mapping & Mutual Aid
Reach out to local groups, faith communities, disability advocates — map who still works, who still has resources, who can share. We are stronger not when we stand alone, but when we stand together. - Advocacy Amid Pause
Write letters. Call your representatives. Share stories (like Mikelle’s). Raise public pressure so that even during a shutdown, the voices of people with disabilities cannot be erased. - Creative Continuity
Move forward in what you can control. Mikelle writes blog posts, records segments offline, and maintains her social media narrative — even if funding delays stall services. Stay alive in your purpose. - Emotional Care as Policy Defense
Recognize burnout. Hold grief. Find your circles. We are in a crisis not only of policy, but of the heart.
A Call to the Invisible Hands
To the providers: you stretch your hands beyond your paychecks, and in many regions, cover gaps with your own funds. You carry the burden of unreimbursed overtime, of canceled claims, of morale faltering in your workforce. This shutdown is not just a policy failure — it’s a betrayal of your dedication. We see you. May we raise our voices too.
To the policymakers: may you remember that numbers on budgets correspond to real lives. May the corridors of Congress recall the faces of my daughter, your neighbor, the child in your district whose therapies lapse. Policy isn’t abstract: it changes lives for the better when promises are delivered, and it breaks hearts and interrupts dreams when it doesn’t.
To families in the trenches: hold your stories. Let them burn bright enough to cast light. And when the doors reopen — God willing they will — let us walk into them carrying the weight of everything we endured, so that our families are no longer seen as disposable.