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Many of the workers I’ve employed to assist me at home say they are afraid someone is going to ask them what kind of work they do.

When they tell people their job is helping a disabled man get dressed, get in and out of his wheelchair, take a shower, et cetera, they are often told they must be some kind of selfless saints to do that kind of work—even before the advent of COVID-19.

That’s funny, because I don’t have any selfless saints working for me. I like people who have selves. My best workers are simply people who enjoy helping others and getting paid for it. They do their shifts, even in these trying times, because that’s their job.

We have to invest heavily and enthusiastically in these workers. But that won’t happen until the lives of those of us on the receiving end of what they do, like me, are also genuinely valued.

The canonization of direct care workers is supposed to be high praise, but it’s really a reflection of how profoundly their work is misunderstood and devalued. It’s a deep disrespect cleverly disguising itself as an equally deep respect. And it begins with the notion that helping disabled people execute our daily bodily, domestic, and community functions is some of the dirtiest of dirty work. It’s like ministering to the untouchables—literally.

And that’s where the vicious cycle of devaluation begins. Those who provide care for people with disabilities are diminished by association. Because if we’re untouchables, then only saints would want to come close to us, right? And being a saint is a dead-end job with no room for advancement. Saints must always be humble and self-sacrificing. They must live the most austere of lives, like Mother Teresa. That’s what makes them saints. A well-paid saint is an oxymoron.

I think that’s why their line of work continues to be so poorly compensated, despite it becoming more difficult and more dangerous these days. COVID-19 will only exacerbate the “direct care crisis.”

The terms “direct care worker” or “direct support worker” are increasingly being used to describe those who assist disabled people in their communities and homes. Those are kind of dry job classifications, but I like either better than calling them caregivers. I never call my workers caregivers. It sounds too much like a nurse or a babysitter.

But whatever you call them, these are dedicated workers with life-saving jobs, now more than ever.

A report called “The Case for Inclusion 2020” was recently put out by United Cerebral Palsy and the ANCOR Foundation. This periodic report assesses all fifty states and the District of Columbia on how well they are supporting their residents with intellectual and developmental disabilities through programs such as Medicaid.

The new version of this report contains for the first time a section called “Addressing a Workforce in Crisis.” It says that in 2017 nationwide, 43.8 percent of direct care workers left their jobs within the previous year. Nebraska had the highest turnover rate at 68.8 percent, but even where the rate was lowest, in Washington, D.C., it was still 24.4 percent.

And, of course, the fact that these workers are paid an exceedingly crappy wage stokes up the high turnover rate. “The Case for Inclusion 2020” says their median hourly wage nationwide is $12.09. In Alabama, it’s just $9.40. The District of Columbia is near the top again at $14.03, but that’s still not much, considering how expensive it is to live there.

I’m having a workforce crisis of my own right now. My workers are paid by a Medicaid-funded state program in Illinois. Their hourly wage went up from $13.48 to $14 on January 1. When Illinois had a Republican governor from 2014 to 2018, these workers’ wages remained stagnant at $13 an hour. My workers are gig economy workers. They receive no benefits nor any paid sick or vacation days.

When my crew is at full strength, I employ six people. Since this time last year, I’ve hired nine people, fired three, and five have moved on. Only two members of my current crew were with me at this time last year. All of them, thankfully, have stayed with me through the coronavirus pandemic so far.

I like to think that my home is a decent workplace. I hope it at least beats working in a corporate soul-crushing environment like a KFC. I also like to think that I’m a fair and easy guy to work for. None of the people who have recently moved on from me said they were doing so because I’m a jerk. One of them signed up for a photography project in the mountains of Bolivia or something like that. But others left to pursue higher-paying jobs. At $14 an hour with no benefits, it’s hard to compete, even with KFC.

But all this stuff that’s been happening regarding the coronavirus vividly illustrates how consequential this work is. My workers don’t have the luxury of being able to hole up and hide. If they don’t show up, well, you can see the impact that has on people like me. And if they spend a week or two at home recovering, that’s a week or two without pay.

Last November, the Arc of the United States and the National Domestic Workers Alliance hosted a Congressional briefing entitled “The Hidden Crisis of Care in the U.S.—Addressing the Home Care Workforce Shortage.”

Nicole Jorwic, the Arc’s senior director of public policy, testified: “Nearly everywhere I go, the number-one issue that I hear about most is the workforce crisis.” She added, “The word ‘crisis’ doesn’t really do it justice—having a skilled, properly trained, and fairly paid workforce is the linchpin for success for so many people with disabilities to live the independent life that they choose.”

But because of low pay and lack of benefits, good workers are extremely hard to find and retain, Jorwic said. She offered up as an example her brother, Chris, who has autism.

Chris lives in the suburbs of Chicago and has a crew of three or four workers who help him go out in the community, Jorwic explained. Those workers earn an average of $10 an hour. Recently, she said, the worker who spent the most time with Chris reluctantly quit so she could take a job with higher pay. More than two months later, that worker still had not been replaced.

The “most direct way to make a significant impact on the workforce crisis,” Jorwic said, would be for the state and federal governments to invest more money in funding home and community support programs so pay can be brought up to and sustained at competitive levels.

In March, two U.S. Senators—Maggie Hassan, Democrat of New Hampshire, and Susan Collins, Republican of Maine—introduced legislation called the Recognizing the Role of Direct Support Professionals Act. The bill directs the Office of Management and Budget to revise the Standard Occupational Classification system to include a new category for direct support workers. The goal is to provide more precise data to determine how to best deploy resources by tracking where shortages of these workers are most severe.

I suppose this approach is all well and good and full of the best intentions, but it doesn’t get me too excited. Even if the government collects reams and reams of the most precise data, a few years up the road it will reveal what we’ve already known for a long time—workers who help people like me stay active, productive, and in good mental and physical health are dismissed and disregarded and deserve a much better shake.

“The lack of investment from the top creates the crisis,” Jorwic said in her testimony. “There has been a lack of federal investment for decades and states have not picked up the slack.”

And as long as what direct care workers do is still regarded as the toil of saints, I’ll know we’re not getting very far. This provides a comfortable rationale for their continued devaluation, which allows those at the top who can change things to conveniently avoid facing the hard fact that the real answer is money. There’s no way around it, especially now.

We have to invest heavily and enthusiastically in these workers. But that won’t happen until the lives of those of us on the receiving end of what they do, like me, are also genuinely valued. Helping us isn’t relentless drudgery. It’s a vital service. What they do for us is important to everyone because what we do is also important. And we can’t do it without them.

These workers won’t be paid or treated appropriately until what they contribute is truly respected. So don’t canonize my workers. That doesn’t buy them any groceries. Show them the money. υ


[1] State Workgroups Confront the Direct Care Workforce Crisis - PHI ➤[2] Home :: Case for Inclusion ➤[3] SEIU Healthcare Home Care Workers and Child Care Providers Join Governor J.B. Pritzker in Approving Historic Collective Bargaining Agreements - SEIU Healthcare ➤[4][5] Congressional Testimony: The Direct Care Crisis ➤[6] Recognizing the Role of Direct Support Professionals Act (2020; 116th Congress S. 3369) - ➤