This piece is part of Our Lives On Hold. A companion analysis runs in Care Futures, going deeper on the legislative architecture this week’s moment points toward.
I can write this sentence without my hands shaking, and that alone tells you something has changed: Rose is okay.
Not okay the way she was before the fall. Okay the way a household is okay when the worst thing that could have happened did not happen, and the people responsible for her are finally talking to us instead of past us. Wednesday was our first assessment meeting - the case manager and Rose’s physical therapist, in the same room, walking us through what they’re seeing and what comes next. Since my initial email, the correspondence has been steady and transparent. They sent a packet of documents without us having to chase it down.
After the ER, after the hip fracture, after the four days where every call felt like extracting information from a building that didn’t want to give it up, this is what relief looks like in a caregiving household. Not good news. Responsiveness. A facility that answers when you reach out instead of making you fight for every piece of information.
I want to sit in that for one more sentence, because we don’t get to sit in it often: she is stable, she is out of the immediate danger, and for the first time in two weeks, nobody in this story is the FAMLI office.
The Question Nobody Asked Out Loud
Here is the conversation that actually worries me now.
Rose is in skilled rehab for a hip fracture. She is also seventy-nine months into a diagnosis that does not reverse. At some point in the next several weeks, a therapist or a case manager is going to look at her chart, weigh her progress against a benchmark built for a different kind of patient, and ask some version of a question that should never get asked out loud in a room with a dementia patient in it: is she improving?
It’s the wrong question. It has been the wrong question, as a matter of federal law, since 2013.
Most families never hear it phrased that bluntly. They hear it as a clipped note in a chart, a shortened authorization, a “we’ve maximized her benefit,” a discharge date that arrives faster than the recovery did. The improvement standard doesn’t show up as a denial letter with a name on it. It shows up as a closing door, and you’re supposed to just notice the room got smaller.
Track One: The National Systemic Barrier
In 2013, a federal court approved the settlement in Jimmo v. Sebelius - a class action brought by the Center for Medicare Advocacy and Vermont Legal Aid against the very practice I just described. The settlement was unambiguous: Medicare coverage for skilled nursing and skilled therapy does not depend on whether a patient is expected to improve. It depends on whether the patient needs the skilled judgment of a nurse or therapist to maintain their current condition or to slow decline. Full stop. No improvement required. It applies in skilled nursing facilities, home health, outpatient therapy, and - to a real but more limited degree - inpatient rehab. It applies to any diagnosis. It has no time limit.
This is, on paper, exactly the protection a dementia patient recovering from a hip fracture needs. Rose is never going to “improve” out of advanced dementia. That was never going to be the metric. The metric the law actually sets is whether she needs skilled care to keep what function she has, or to keep that decline as slow as it can be. That’s a real, defensible, fundable standard.
Here’s the part the settlement didn’t fix: there was no mechanism built to make providers, contractors, and frontline staff actually apply it. CMS was ordered to update its manuals and run an education campaign. It has done some of that. The Center for Medicare Advocacy has had to go back to federal court more than once to push CMS toward actual compliance, because the practice on the ground - the informal, unwritten, nobody-signs-their-name-to-it use of “she’s not progressing” as a soft reason to cut therapy - never fully went away. It just stopped being something anyone has to defend in writing.
That’s the national systemic barrier. The law is right. The enforcement infrastructure underneath it was never built to hold.
Track Two: The State-Level Regulatory Pathway
Colorado actually has a real tool here, and almost nobody in a moment like ours knows it exists.
Under Colorado law (C.R.S. § 10-16-113.5), a patient who’s been denied a covered service has the right to an independent external review - a process where the state’s Division of Insurance assigns the case to a reviewer with no relationship to the carrier that denied it, and that reviewer can overturn the denial. It exists. It’s been on the books for years. It is, structurally, exactly the kind of check the Jimmo settlement assumed would exist somewhere in the system.
But the pathway was built for a person with the bandwidth to use it: someone who can read a denial letter, recognize it for what it is, file the request, gather the physician certification, and wait out the timeline - all while the clock on the actual therapy authorization keeps running. It assumes an advocate who isn’t also providing twenty-four-hour care to the person being denied.
Rose cannot do any of that. Janet cannot do it without me. And I can do it only because I happen to know it exists - because I have spent the last two years inside the legal architecture of caregiver protection, not because anyone in the system told me where to look.
I hope they don’t have to, because the facility has been good to us this week in a way I want to name and be grateful for rather than spend this piece anticipating a fight that hasn’t happened yet.
But I know the standard now. I know it’s federal law, not a courtesy. And I know that if the conversation turns toward “limited progress,” the answer isn’t to argue with the chart - it’s to know that “is she improving” was never the legal question to begin with.
Up is not the same as better. Rose got up off that floor. She is not going to get better. Both of those things are true, and only one of them was ever supposed to determine whether she keeps her care.
The systems-level companion to this piece runs in Care Futures, going deeper on the legislative architecture this week's moment points toward. Read it here: [Care Futures Crossover]
Mark Fukae is Director of Advocacy for Professionals Who Care and Founder of CASI. He is a registered Colorado volunteer lobbyist and lead architect of the Colorado CARE Act, targeting the 2027 legislative session. He has been a family caregiver since 2001.
📧 mark_fukae@casiadvocacy.org | casiadvocacy.org
therevenueneutralcaregiver.substack.com | casiadvocacy.org | professionalswhocare.org
Sign the Colorado CARE Act petition: [https://c.org/WjGpN6TYnB]
#OurLivesOnHold #ColoradoCAREAct #SkilledMaintenanceTherapy #Jimmo #CaregiversAreInfrastructure #COleg #Dementia #ElderCare
