I often write about my pit crew, which is what I call the people I hire to come to my home every day and help me do the essential things that everybody does every day, such as getting in and out of bed and getting dressed. Because I was born with a disability and ride around all day in a motorized wheelchair, I need help doing all of those things.
The hourly wages that my pit crew receives for helping me are paid by the State of Illinois through a program largely funded by Medicaid. This is why the political issue I’m most passionate about is home and community-based services (HCBS). Policymakers have a lot to say about the prevalence, direction, and pace of HCBS programs. They’re the ones who created the program through which I pay my pit crew, and they determine its funding every fiscal year.
Thus, the trajectory of my life is a political struggle, as is the case for a lot of disabled folks who rely on HCBS. Because what legislatures giveth, legislatures can also taketh away.
So you’d think I’d be ecstatic about the higher political profile that HCBS has been getting lately. Organizations like Caring Across Generations (CAG) have done a lot in recent years to draw attention to the importance of HCBS. As its website notes, “Caring Across Generations is working to build real, helpful, thoughtful care systems. We transform cultural norms and narratives about aging, disability, and care; win policy change at every level; and unite a powerful coalition across the millions of us who are touched by care.”
Testifying at a Senate subcommittee hearing last year, CAG Executive Director Ai-jen Poo said, “Just as we need federal dollars for physical infrastructure, such as roads and bridges and clean drinking water, we [also] need care infrastructure.”
I’m grateful for all the time and energy that Poo and others have put into speaking up for HCBS, but a part of me fears their efforts may attract the wrong kind of attention. I’m talking about private entities that think they can make a lot of money providing disability services by sticking their fingers into the public treasury that pays for those services.
A 2024 report by the Disability Rights Education and Defense Fund (DREDF) says that about 7.5 million Medicaid beneficiaries use state HCBS programs like the one I use. It adds that the “high demand for long-term home and community-based services makes the industry highly attractive to investors.”
A good case in point is Electronic Visit Verification (EVV). Whenever one of my pit crew members shows up for work, the first thing they must do is pick up my landline telephone and call a toll-free number. A recording instructs them to enter a nine-digit identification number assigned to them by the state agency that administers the program. The time that they called is logged as their official starting time. When the worker calls the number again at the end of a shift, it’s registered as their official ending time. The state agency uses this data to calculate how much the worker is owed.
The for-profit company that contracts with the state to provide this service here in Illinois is called Sandata. The company’s website says that it attained its position as a technology leader in home care solutions when it “pioneered” EVV. It adds that the company develops “new solutions that make it easier and more efficient . . . to ensure vulnerable populations receive the care they need.”
But the system can be glitchy as hell. Workers often encounter busy signals or other issues when they call. We still submit paper time sheets to the state agency every two weeks to use in calculating how much the worker is owed, because Sandata can’t be completely trusted to accurately record the actual hours worked.
But it doesn’t really matter what those of us who use EVV think about it. Our state legislature can’t just decide to stop using it, even if it were inclined to do so. When President Barack Obama signed into law the 21st Century Cures Act in 2016, it contained a provision requiring every state to use EVV when administering HCBS programs like the one I use to pay my pit crew. According to DREDF, Sandata is the leading vendor of EVV software for Medicaid HCBS providers.
Sandata’s website says the company helps make state Medicaid programs more “efficient, accountable, and compliant.” Even if that’s true, is EVV that important? The federal EVV mandate means that millions of HCBS dollars must go to private companies like Sandata, which doesn’t help anybody get in and out of bed. And if money gets tight, EVV is one line item in the budget that can’t be eliminated.
This is what most makes me feel like I’m part of a “vulnerable population,” as the Sandata website refers to those of us who heavily rely on HCBS. I feel politically vulnerable.
I think the best way to combat exploitation of HCBS funding is to transform our collective view of the dynamics of HCBS. And the way to do that is by transforming our collective view of those of us on the receiving end.
Just enter the word “caregiver” into a search engine and look at the images that appear. The caregivers in the stock photos are almost all women dressed in nursing scrubs. The care recipients are almost all over the age of seventy. And none of the recipients of these services is doing much of anything, except maybe looking at their caregivers with beaming smiles of gratitude.
These clichés are on full display in the television commercials I see for a home health agency called Visiting Angels. Those commercials make me nauseous. First of all, what’s with that name, Visiting Angels? When I place an ad in search of new members of my pit crew, I don’t list being an angel as a job qualification. I don’t think it takes an angel to do this kind of work well.
Secondly, the narrator in those commercials is always the caregiver. The people they serve are voiceless and passive. They have no say in what goes on. It seems like all they do is stay home and wait for their caregiver to arrive, the highlight of their day.
Don’t get me wrong: I’m deeply grateful for all of my pit crew members, past and present, who are reliable and dedicated. But I don’t think this clichéd view of caregiving serves them well, either. After all, they (and those who advocate for them, such as CAG) say that what they want most are a livable wage, benefits, and all of the other things that make a job good and one that they want to keep. But if the job of helping disabled people like me get in and out of bed is seen as the work of angels and saints, it creates a good excuse not to pay them much. Angels and saints are the epitome of self-sacrifice. If your work is a labor of love, you can’t expect to make money doing it. You receive the priceless currency of love. But the landlord only accepts cash.
The truth is that we all rely on public infrastructure to successfully get through each day. Someone has to build and maintain the roads, bridges, and walkways we travel on. These things didn’t just falleth from the sky. They exist because our fellow citizens decided to put them in place for anyone to use, free of charge, in their pursuit of happiness.
Some people need help getting in and out of bed. We deserve to have the public infrastructure in place to make that happen. That’s what HCBS programs like the one I use are all about. We deserve to get whatever assistance we need, whenever we need it, from anyone we determine is willing and able to help us. They don’t have to be angels, saints, or even medical professionals.
Everyone deserves and desires to run their own lives. For me, that means having the type of public infrastructure that gives me the ability to hire, fire, schedule, and supervise the people who assist me.
The people who are trying to make a living by assisting me are trying to help me pursue happiness, whatever that means to me. That needs to be recognized as important work by compensating it accordingly.
HCBS can be a beautiful example of human cooperation that benefits everyone involved. The more it can be celebrated for that, the less it will be seen as a profit center to be exploited.
