These days, information comes at us at an astonishing pace. It can be difficult to filter not only what is real and true, but what is also personal. Everyone everywhere wants your attention, your support, your protest, your money, your time, your interest, your effort, and your ear.
We all amplify things that are near and dear to our hearts. Today, with his permission, I would like to feature some important words from a friend of mine, who is also an actor in the Hulu series Ramy.
I met Steve Way last fall, when we were both invited to address a delegation at The United Nations in New York City about living with muscular dystrophy. Steve is an advocate for human life, and he recently wrote a column that I would like you to think about. It is my hope that it will shine a light on a subject that is happening in the adult rare disease community. I would also like to remind all of us that old age will come for all of us (if we are ‘lucky’) and what Steve writes about has far reaching implications for everyone.
I make a concerted effort to keep my blog free of the political drama that slaps all of us in the face these days…..Yeah, I usually stay quiet on here, but this time I can’t. I hope people will pump the brakes, think a little bit, and reflect on what Steve says. If you would like to find more of Steve Way’s writing, you will find him HERE.
Over to you Steve….He wrote this on May 18, 2026
“On May 1, Nebraska became the first state to require Medicaid recipients to prove they’re working. Forty-one more states are required to follow by January 2027. The Congressional Budget Office estimates 4.8 million people will lose health coverage over the next decade because of it, 28,000 to 41,000 of those in Nebraska.
I want you to understand what’s really happening here, because what’s on the surface is a lie.
The cover story is that work requirements get people back into the workforce. They don’t and we know they don’t because we have the receipts.
Arkansas tried this in 2018 and within seven months, more than 18,000 people lost their Medicaid coverage. A peer-reviewed study in the New England Journal of Medicine found that more than 95% of the people who lost coverage were already meeting the work requirement or qualified for an exemption.
The same study found no increase in employment. None. Eighteen months of follow-up with zero employment gains.
Why? Because 64% of adults on Medicaid already work. Another 28% are disabled, attending school, or caring for a family member. That leaves 8% who, in theory, could work but aren’t. Most of them have reasons you’d recognize as legitimate the second they explained them. The whole policy is built on a fiction that the Medicaid rolls are full of able-bodied people gaming the system, and the data has been screaming for years that this fiction isn’t real.
So if work requirements don’t get people working, what do they do?
They kick people off Medicaid.
The paperwork is the policy. Speaker of the House Mike Johnson said the quiet part out loud when he sold this bill, claiming it would protect Medicaid for “people who rightly deserve it” instead of young men “sitting on their couches playing video games.” He’s telling you who deserves healthcare and who doesn’t. The work requirement is the morality test that decides which group you’re in.”
The test is rigged.”
The $2,000 Trap
“Here’s the part that almost nobody talks about, and I’m tired of nobody talking about it.
If you’re a disabled person on SSI or SSI-related Medicaid, you are legally required to stay broke. You cannot have more than $2,000 in countable assets at any time. Not in savings, checking, stocks, bonds, or anywhere else they can find it. If you have $2,001 on the first of the month, you lose your benefits. Your spouse can’t have more than $1,000 on top of that, because the limit for a couple is $3,000.
These limits were set in 1989 and haven’t been updated since. In 1989, $2,000 was worth roughly five times what it’s worth today. The cap has been frozen for 36 years while the cost of everything has not.
Now stack the work requirement on top of that.
The government tells you that you have to work to keep your healthcare. So, you get a job and get paid. The second your savings account creeps over $2,000, you lose the healthcare they just told you to work for. If you save for an emergency, you lose Medicaid. If you save for a car you need to get to that job, you lose Medicaid. If somebody dies and leaves you a thousand bucks, you lose Medicaid.
The system is designed so that you cannot win. Work too little, you lose your healthcare for not working enough. Work too much, you lose your healthcare for having too much money. The only acceptable state is permanent, performing poverty. Productive enough to be considered worthy, poor enough to be considered deserving.
This is what people mean when they say the welfare system creates a poverty trap. It’s not that disabled people don’t want to work, but the math punishes us for trying.”
Healthcare as a Morality Test
“Tying healthcare to employment is one of the most efficient ways a society can decide who lives and who dies without explicitly saying it. Every other developed country figured out a long time ago that healthcare is something you provide because people are alive, not because they’ve earned it. We’re the only country still arguing about whether existing in a body is enough to qualify for medicine.
When you require someone to prove they work to receive healthcare, you’re saying their value as a human being is conditional. Until they produce labor for an employer, the country doesn’t owe them the chance to stay alive. That’s a sorting mechanism that separates the deserving from the undeserving and uses access to insulin and chemotherapy as the consequence.
About one-third of the adults at risk of losing Medicaid under the new rules report having a physical or mental illness or disability, according to a study published last year in the Annals of Internal Medicine. The lead author put it plainly: this is not mostly healthy adults choosing not to work. It’s a vulnerable group, and there are no clear protections for them as the policy rolls out.
The protection gaps aren’t how the policy hits its target numbers. Every disabled person who can’t navigate the exemption paperwork is a person the system removed from the rolls without having to vote them off in public. The CBO’s 4.8 million projection is the Trump administration’s goal.”
The Pattern
“If you’ve been paying attention to this administration’s policy moves, you can already see the shape.
Work requirements that don’t increase work and instead remove people from coverage. Asset limits frozen since 1989 that force disabled people to live in poverty. Cuts to SSI for disabled adults living with family. Reductions in retroactive Medicaid eligibility from three months to one month, which means hospitals eat the cost or patients lose access. Paperwork traps engineered to disenroll people who are still eligible. A CMS administrator on record saying he doesn’t like self-attestation because “documentation is critical,” which translates to “we want more chances to disqualify you.”
The thread running through all of it is the same: make healthcare conditional, eligibility hard to prove, make the consequences for failure severe, and let attrition do the work that explicit policy cuts can’t get past the optics check.
This is a transfer of risk from the federal government to the states, the states to the hospitals, and the hospitals to the patients. By the time the cost reaches the patient, they’re the ones holding the bag for a system that decided their continued existence wasn’t worth the administrative burden of confirming they qualified.”
What Now
“The first thing to understand is that none of this is new, but it’s escalating. The Trump administration tried work requirements in his first term, but a federal judge struck them down. The current bill writes them into federal law so they’re harder to challenge. The asset limits have been broken for 36 years and Congress refuses to fix them. The strategy is to grind people down through procedure, knowing that exhausted, sick, disabled people are easier to remove from a benefits roll than to actually argue against in public.
The second thing to understand is that this is going to hurt people you know. Forty-eight states will eventually be running this system very soon. Most of you reading this have a family member, neighbor, friend, or coworker who will be affected. A lot of them won’t tell you what’s happening because shame is part of how the system enforces itself. People are taught to be embarrassed about needing Medicaid, losing it, and asking for help.
Stop letting them be embarrassed. The shame belongs to the people designing a system that decides healthcare based on whether someone can prove their worth on a form.
If you’ve lost Medicaid because of paperwork, comment with your story. If you know somebody who has, share theirs. If you’re a healthcare worker watching this destroy your patients, say so. The people who wrote this bill are counting on us being too tired and scattered to make the cost visible. Make it visible.
Work will set you free. Where have we heard that before?
Solidarity forever.”
-Steve
I am well aware that this post may generate strong feelings. I am well aware that people in power and folks who draft legislation read this blog. I can’t stay quiet on this one. The ironic part for me is that I have been fortunate to have private health insurance since the age of 22. I have written about how hard I have to fight to get things paid for that people who have never met me, nor understand my disease tell me that all kinds of stuff is ‘not medically necessary’. Why the hell should someone else be deciding my medical needs? If you are reading this and you are an elected official, you can no longer feign ignorance.
None of us should. When I say ‘us’, I mean the human race. We chose this system. It sucks. We can do better. But hey, let’s talk about a ballroom.
Stay safe, stay awesome, and DO NOT STAY QUIET.
Moeschen! 