I try not to engage too much in political speculation, primarily as a means of caring for my mental health. I find that worrying about all the things that could go terribly wrong is a good way to stress yourself out, big time. Something can always go terribly wrong, so you’ll always be worrying about something. And if you’re not worrying about something, then you’re worried that you’re not worrying about anything. And besides, maybe everything won’t go terribly wrong. Maybe some things will actually go right. Hey, it’s happened before.
Plus, if the worst-case scenario doesn’t come true, it’s easier for the opposition to discredit you as a fearmonger always screaming that the sky is falling. And that allows them to proceed with their dirty business.
I like to save my worries for stuff that’s really worth worrying about. Denial has its benefits; it’s the only way to truly be worry-free.
I know the biggest problem with this approach is that there is nothing proactive about it. If you wait until something becomes a big, snarling monster before you decide to do something to stop it from eating you alive, you run the risk of being blindsided. You have to figure out the best time and place for taking preventive action.
So maybe I should allow myself to be more concerned about all the money Republicans are planning to take from the Medicaid program. I definitely took preventive action against the plan by joining protests held earlier this year at the district offices of U.S. Representative Darin LaHood, Republican of Illinois, the nearest member of Congress in my area to support that nonsense. I can’t say for sure how cutting Medicaid would hurt me personally, but I do know that since so many disabled folks depend on Medicaid for survival, somebody is bound to get hurt. That was good enough justification for me to act.
Some warn that cutting Medicaid funding could force state governments to curtail or even eliminate home and community based services (HCBS). That would hurt me badly if it happened in my state, because I use a motorized wheelchair all day, every day, and I can’t survive without the daily assistance I receive from my “pit crew.” That’s the term I use for the people I’ve hired to come to my home every day and assist me with the essential things we all must do but which I can’t do without someone else’s help. This includes getting into and out of bed, getting dressed, grooming, and bathing.
The hourly wages my pit crew receives come from a state program largely funded by Medicaid. I’d be really screwed if this vital support were to be curtailed or disappear entirely. I can’t afford to pay all of my pit crew members on my own for the hours they assist me. Few people can. So I’d probably have no choice but to move into a stinkin’ nursing home in order to receive anything that resembles the help I receive at home.
This is my worst nightmare, because nursing homes tend to deny residents their right to make simple choices about their lives, such as when to get up, go to bed, and bathe, and what and when they can eat. When you’re in a nursing home, someone else decides all of that and more, whether you want them to or not. You live under someone else’s roof, so you must live by their rules, and those rules are usually designed to maximize the profits of nursing home owners. Even nursing homes run by so-called nonprofit organizations, including churches, face austerity pressures.
Being unable to make these simple decisions may not seem like a big deal, but I think that’s because we take them for granted. Imagine being an adult and suddenly needing another person’s permission before you do anything. To me, that takes away much of the appeal of being an adult. If I became one of those disabled people trapped in a nursing home, I know I’d bitterly resent being treated as though being disabled meant I had to pay some sort of debt to society.
HCBS programs make it possible for disabled folks like me to have a lot more control over our lives and destinies. So it’s not surprising that the demand for HCBS in Medicaid has risen considerably over the past few decades.
According to the nonprofit health policy organization KFF, “This development has been spurred by beneficiary preferences for HCBS, the typically lower cost of HCBS relative to institutional care, and the Supreme Court’s 1999 Olmstead decision, which found that the unjustified institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act.”
The problem is that federal Medicaid rules don’t require states to provide HCBS to recipients, but they do require states to pay Medicaid recipients’ nursing home bills. This is referred to as the institutional bias of Medicaid law. As KFF describes it, “State Medicaid programs are required to cover nursing facility services, while most HCBS are provided at state option. This effectively establishes an institutional bias within the Medicaid program.”
It should be the other way around. The law needs to be changed so that it is mandatory for state Medicaid programs to cover HCBS. But it hasn’t been. As a result, the Leonard Davis Institute of Health Economics (LDI) at the University of Pennsylvania warns that HCBS programs “are particularly vulnerable to becoming defunded by states because of cuts in Medicaid proposed in the 2025 Budget Bill, which the Senate passed on July 1.”
Yet, just because federal law allows states to cut HCBS services when Medicaid money gets tight, does it mean this will actually be one of the consequences of federal cuts? After all, that doesn’t seem to make any sense. As LDI points out, paying for HCBS has been shown to be less expensive for states than paying for institutional warehousing.
But that kind of mindless HCBS cutting has happened before. The Geiger Gibson Program in Community Health at George Washington University reports that when Congress passed the American Recovery and Reinvestment Act in 2009, in response to a recession, it substantially increased federal Medicaid funding to “help states balance budgets.” But when that funding dried up in 2011, every state reduced its HCBS spending “either by spending less per person or by reducing the number of beneficiaries receiving HCBS. In many states, waiting lists for HCBS grew substantially.”
As of 2024, KFF notes, more than 710,000 people in forty states were languishing on HCBS waiting lists for an average of forty months, which shows how drastically the demand for Medicaid-funded HCBS exceeds the legislative will to increase the supply.
When a state puts someone seeking HCBS on a waiting list, they might as well be turning them away. Who applies for assistance from a public support program—especially one as restrictive as Medicaid—unless they need help right now? No one ever says to themselves, “It’s such a beautiful day; I think I’ll apply for HCBS just in case I might need it forty months from now.”
No matter what ultimately becomes of all this, it’s a good bet that Medicaid money is bound to be a lot tighter for states. And considering how much the system is rigged in favor of forcing disabled people like me into nursing homes, legislators may have no choice but to make the stupid decision to cut HCBS programs just because they can.
I do not derive a fleeting second of reassurance from those who have argued that this action will make Medicaid more sustainable by preserving it for those who truly need it. It’s nonsensical to claim you’re making someone’s life better by stealing their money. That’s like robbing someone and telling them, “I’m doing this for your own good.”
Medicaid-funded HCBS programs are extremely vulnerable to political whims. Because of the current fund-cutting rampage, that’s true now more than ever. We’re taking a giant step in the wrong direction.