There’s one good thing I can say about the pandemic: It has made the obvious, well, obvious. I’m grateful for that.
The media have given a lot of coverage to how COVID-19 has rampaged through nursing homes. To take in the horror of it, check out the COVID Tracking Project at The Atlantic. It reports that, while less than 1 percent of the nation’s population resides in nursing homes and other long-term-care facilities, these accounted for 34 percent of all U.S. COVID-19 deaths during a ten-month period under review. For nursing homes, this amounted to nearly 10 percent of all residents.
This system needs to be defunded and abolished. Its food source is an abundant supply of disabled people who are too politically powerless to turn anywhere else for help.
On top of all that, the site says, “the most complete figures we can assemble are both an estimate and a severe undercount of the true impact on long-term-care residents. Because of the historical deaths missing from both state and federal data, nonstandard state reporting, and the absence of federal reporting requirements for long-term-care facilities, we believe that the true toll of the pandemic among these residents is higher than these figures can show.”
Seeing all of this devastation on full display has been heartening for me, in a sad sort of way. Disability activists have been hollering for decades about how disabled folks get trapped in the undertow that sucks them into nursing homes, where life becomes miserable. The pandemic’s path of destruction has finally made that reality clear. There now seems to be a fledgling consensus that people in nursing homes are extremely vulnerable and that something needs to be done about it.
But what? That’s the big question. And it’s what makes me fear that this golden opportunity to make monumental progress in long-term-care policy could be squandered.
As someone who has successfully managed, with the assistance of others, to avoid living in one of these facilities, I hope that whatever political momentum may be emerging won’t get derailed by the misguided notion that the inherently corrupt and oppressive system that dumps disabled people in nursing homes with no possibility of parole can be reformed. It cannot.
What makes people in nursing homes vulnerable? It’s not their perceived “frailty.” It is the ridiculous idea that nursing homes should be the means of first resort for delivering long-term care.
Suppose someone, because of a disability, needs someone else to assist them daily—and probably permanently—with routine things like getting in and out of bed, taking a shower, and so on. And suppose that person doesn’t have enough money to pay for that assistance out of pocket. Most people don’t.
In such a case, that person would turn to Medicaid to foot the bill for the cost of this needed assistance. But current Medicaid policy requires that people receive this assistance in a nursing home, unless the state has set up a program for keeping them out.
I’m one of those people who needs a lot of assistance and can’t afford to pay for it. But I’ve managed to stay out of a nursing home and it’s one of my top life goals to permanently continue to do so.
I have a crew of people who come to my home and help me every morning, afternoon, and evening. And they aren’t some anonymous nursing assistants dispatched by a for-profit home health agency.
I recruit, hire, train, and supervise my workers myself. And their wage of $15 an hour is paid through a state program funded mostly by Medicaid. Without this program, it would be immensely more difficult for me to fulfill my desired destiny of forever staying the hell out of a nursing home. It would probably be impossible.
State governments have the option of creating home and community assistance programs that use Medicaid money in a way that provides people like me with the support we need without going into a nursing home. But states are not required to do so. That means that my freedom and self-determination are based on legislative whim, not on a legally protected human right. And whims are fickle. They can be rescinded or altered abruptly and capriciously.
And so the amount of support available through these programs varies wildly from state to state. Thus, not everyone who needs this kind of help can get it, leaving many with no choice but to go into a nursing home. Others languish for years on waiting lists, relying on the kindness of family and friends for volunteer assistance.
This delivery system is rigged in favor of those who profit off the captivity of disabled people, such as the owners and operators of nursing home chains. This is the pipeline for their cash flow.
So reform is not the answer. The answer isn’t to pump even more money in that direction with the hope that nursing home operators will somehow choose to use it to pay their staff more money and treat their residents more humanely. The answer isn’t better self-policing by the nursing home industry or giving government or private watchdogs, like ombudsmen, more latitude and bite. That’s putting lipstick on a pig.
This system needs to be defunded and abolished. Its food source is an abundant supply of disabled people who are too politically powerless to turn anywhere else for help. The way to starve it is to give people like me a genuine choice in determining how, where, and from whom we will receive assistance.
What if you or someone you love needs the kind of help I need? What would be your preference? Would you want to hire whomever you want to come into your home to provide whatever help you need when you need it? Or would you rather check into a nursing home and have no control over any of these things? I don’t think I’m going too far out on a limb by surmising that the great majority of people would prefer the former.
This is how we can keep people from becoming vulnerable prey in nursing homes. We can give them the power to avoid entering nursing homes in the first place.
The best way to address that is to make a small but mighty wording change to federal Medicaid policy. And now there’s a glimmer of hope that this might actually happen.
In March, draft legislation called the Home and Community-Based Services Access Act was released by Representative Debbie Dingell, Democrat of Michigan, and Senators Sherrod Brown, Democrat of Ohio, Maggie Hassan, Democrat of New Hampshire, and Bob Casey, Democrat of Pennsylvania. The main point of the bill is to “require coverage of home and community-based services under the Medicaid program.”
This simple change would be an enormous improvement because states would be obligated to provide any Medicaid-eligible person with home and community assistance if that person chooses this over going into a nursing home.
These lawmakers put out an open memo to stakeholders asking for input on the bill that they said would be used to draft future legislation. The memo said: “The current system is an artifact of a law that is over fifty-five years old and never envisioned community-based supports for older adults and people with disabilities.”
Last summer, when Joe Biden was a candidate for President, he vowed that, if elected, he would strive to make home and community support programs like the one that serves me plentiful and accessible enough to eliminate the Medicaid waiting list.
“Right now, there are 800,000 people who are eligible for home and community care through Medicaid, who already signed up for it, but they’re waiting for a phone call,” he said. “For some, the wait is five years.”
Biden’s first attempt to make good on that promise is contained in the infrastructure proposal he unveiled in April. Known as the American Jobs Plan, the proposal calls for a $400 billion investment over eight years on home and community assistance programs.
“The President’s plan makes substantial investments in the infrastructure of our care economy, starting by creating new and better jobs for caregiving workers,” states a White House fact sheet on the American Jobs Plan. “These workers—the majority of whom are women of color—have been underpaid and undervalued for too long.”
All of this is good to hear. But advancing beyond the idea stage will of course be a struggle. You know how those obstructionist conservatives are. They’ll do their best to make home and community assistance sound like some sort of dastardly socialist plot that is destined to destroy all that Americans hold sacred.
Even if Biden’s plan makes progress, a lot of important details about how his investment would be spent are still to be determined. And even establishing home and community assistance as an entitlement under Medicaid doesn’t go far enough. No one should have to impoverish themselves to the point where they qualify financially for Medicaid before they can receive publicly funded housing and community assistance.
Radically altering the present screwed-up system means reaching beyond Medicaid for funding streams.
But at least there’s some potentially significant movement underway. Maybe the pandemic was a catalyst and maybe it wasn’t. As long as things keep moving in the right direction, it doesn’t really matter.