When "Home" Becomes a Memory - And Caregivers Ask the Same Question
- Mark Fukae
- 4 days ago
- 3 min read
By Mark Fukae - Director of Advocacy - Professionals Who Care
My mother has lived with my wife and me for more than nine years. This is her home. Her room. Her routines. Her familiar chair. Her birthday cards still sitting on the kitchen table.
But this week, she began asking again: "Can you take me home?"
She means the place she lived more than twenty years ago - a place she can no longer picture, but still feels somewhere deep inside.
It's a question that breaks your heart not because of what it asks, but because of what it reveals: the past is vivid, the present is slippery, and the sense of safety is something she must rediscover every day.
And as I sat with her this week, I couldn't shake the parallel: caregivers are asking the same question of our country.
Where is home? Where is stability? Where is the system we can rely on?
Because this week, the ground moved under our feet again.
The SAMHSA Whiplash
On January 13th, the administration initiated the termination of approximately $2 billion in federal mental health and addiction treatment grants - affecting roughly 2,000 organizations nationwide.
Crisis teams. Suicide prevention programs. Overdose response networks. Community mental health clinics. Youth behavioral health services. Rural treatment providers.
Gone. With no warning.
Families panicked. Providers froze hiring. Clinics prepared to shut down.
And then - after intense bipartisan pressure and national outcry - the cuts were rescinded the next evening. Organizations received confirmation on January 15th that their awards remained active.
A victory? Not exactly.
Because the message was unmistakable: these lifelines can disappear at any moment.
Even when reversals come quickly, the damage is real. Trust erodes. Staff leave. Families lose confidence. Programs lose momentum.
This is what instability looks like.
The ACA Premium Shock
Enhanced ACA tax credits expired on January 1st, causing an average premium increase of 114%.
Total enrollment stands at approximately 24 million, but analysts warn that 4.8 million people may drop coverage this year.
Some families saw premiums jump from $85 to nearly $750.
Congress has explored extensions, but as of January 17th, nothing has passed.
Middle-class families - especially caregivers working part-time, gig jobs, or self-employment - are being priced out.
The Great Healthcare Plan - A Framework Without a Foundation
On January 17th, the White House released "The Great Healthcare Plan" - a policy outline, not legislation.
The plan includes nine ideas across four themes: lowering drug prices, lowering premiums, insurer accountability, and price transparency.
But the framework does not change ACA rules, does not create new coverage options, does not include cost estimates, and does not include implementation timelines.
For caregivers, we cannot plan our lives around press releases. We need actual legislation.
The System Is Collapsing Onto Families
This week also brought:
Medicaid work requirements: 80 hours per month required by 2027. Caregivers are exempt - but must prove it every six months. CBO projects 4.8 million people will lose coverage over 10 years.
Kaiser Permanente fraud settlement: $556 million to resolve Medicare Advantage upcoding allegations. More scrutiny, more denials, more administrative burden for families.
Colorado's healthcare crisis: 10 of 43 rural hospitals at risk of closing. Medicaid pays for 62% of older Coloradans in nursing homes. Average annual nursing home cost: $108,000.
The system isn't just failing. It's collapsing onto families. And we're expected to absorb it while working, caregiving, managing crises, and staying silent at work to avoid retaliation.
The Great Stay - And the Caregivers Left Out
The "Great Stay" describes workers remaining in jobs despite falling morale. But millions of caregivers aren't "staying" - because they were pushed out.
Caregivers forced out by return-to-office mandates. Caregivers who couldn't meet inflexible schedules. Caregivers who had to quit because the system made it impossible to work and care.
They're part of the Great Disappearance.
And they feel the subsidy cliff even more sharply: no employer insurance, no ACA subsidies, no predictable premiums, no safety net.
When healthcare becomes unpredictable, employment becomes a cage - and unemployment becomes a cliff.
Why the CARE Act Matters
When federal systems destabilize, state protections become essential.
The Colorado CARE Act makes caregiver status a protected class. It requires reasonable accommodations. It prohibits constructive discharge. It mandates documentation for denials. It strengthens ADA enforcement. It costs the state nothing.
And critically, it's TABOR-neutral. In a 2026 legislative session dominated by fiscal debates and a $1.1 billion deficit, the CARE Act works in every scenario.
Caregivers cannot wait for Washington. We need enforceable state-level rights now.
Your Story Matters
Read the full reflection: https://open.substack.com/pub/therevenueneutralcaregiver/p/our-lives-on-hold-when-home-becomes?r=6a52ih&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
Sign the CARE Act petition: https://chng.it/DLWncS9wtT
Share your story: info@professionalswhocare.org
Home is stability. And stability is something our systems no longer provide. That's why we fight.
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