Hannah Soyer

October is National Disability Employment Awareness Month, so let’s talk numbers: In 2020, 17.9% of people with disabilities were employed in contrast to the employment rate of 61.8% for people without disabilities. Although there have been shifts in employment rates of both populations over time, this enormous discrepancy has stayed relatively consistent. While we often hear about access barriers such as a physically inaccessible workplace or work expectations that disabled or chronically ill individuals simply cannot meet, there’s a huge gap in this conversation that ignores an underlying, widespread threat to our wellbeing as people with disabilities: a system of in-home care that’s coming up short.

Equating one’s worth with employment (and thus production and money) is a pretty messed up thing for a culture to do. Not everyone can “work” in the manner we envision work, for a multitude of reasons. But here we are, in a state of reality where disability rights activism often relies on language such as “disabled people can contribute to society and the workforce if barriers to accessibility are removed!” And I get it, because trying to advocate for policy change with legislators and others whose top priority is economic growth means you have to speak their language, at least to a degree. But the truth remains, and it’s worth reminding ourselves of it: equating worth with employment harms those who aren’t employed due to forces beyond their control. And for people like me who rely on caregivers for daily living activities, a force beyond our control–a barrier to employment–can be the lack of coverage of the care needed to get out of bed, ready for the day, and physically to and from work, and personal cares (like using the bathroom and eating) during work.

For the past year and a half, my family and I have been trying to figure out how my care will be covered after I finish graduate school (which I’ve since done) and become employed (which I’m working on). I receive the maximum number of hours of the type of care I qualify for under the Iowa Medicaid waiver that I’m on, which is in fact not entirely true because the hours of care that I receive are maintained through Exceptions to Policy. This means (as you may have guessed from the phrase) that Iowa Medicaid does not even normally allow for the amount of care myself and others like me need, we have to continually circumvent it via prescribed policy exceptions, which take time and energy to draft and write and get approved. You know, instead of changing the actual policy.

I’ve been in college (undergrad and graduate school) for the past eight years. During this time, Iowa Vocational Rehabilitation Services (IVRS) provided a majority of my personal care attendant hours, as getting my degrees was a part of my “vocational goal.” The purpose of Vocational Rehabilitation Services—which every state has—is to help people with disabilities become employed and enter the workforce. But IVRS will not cover personal attendant hours related to work once I become full-time employed, because personal care assistance is not seen as a “job support” they can continue to provide, despite this being, for me, the most crucial job support of all.

My IVRS counselor and her supervisor continually told me that this is a policy written in the federal regulations of what services Vocational Rehabilitation agencies can and cannot provide, and that any service needed “in perpetuity” cannot be provided. I asked for the federal regulations in writing, they sent them to me, and I was presented with yet another example of a system that simply doesn’t make sense. The supposed reasoning behind Vocational Rehabilitation Services not providing this type of support is that hours of personal care assistance is meant to be covered by the Medicaid waiver you are on. Logically, I don’t disagree with them. But the specific waiver I am on, which is also the waiver that many physically disabled individuals with my level of care needs are on, does not allow hours of care related to employment. Which means, again, we’re talking about a huge gap in care, and in understanding among the services and programs which were put into place to maintain the health and wellbeing of people with disabilities. If agencies and organizations keep pointing fingers, who is accountable?

In response to being dropped by IVRS into a system with no real net to catch me, I have had to cobble together other sources of care. I am lucky to be able to receive this care as someone living in a larger metro area with more resources and agencies, and as someone with a strong support system that continues to advocate for me. But here’s the catch—the hours of care that pay my caregivers the highest at $15/hour are still tied to me working, which means that if I do not work a 40-hour week, I will need to hire caregivers with wages lower than they can make at any entry-level job, such as fast-food or retail. This program also operates on a sliding scale of client participation, which means the more money I earn, the more I’m expected to pick up the cost of this service. Once I make a salary of $38,000 a year, client participation is 100%. This means that I would be expected to pay roughly $30,000 out of my yearly wages to cover a service I need to stay alive.

I grew up hearing that if you’re a disabled individual in the US who relies on governmental services, it’s nearly impossible to live above the poverty line. I never fully believed this when I was younger, my disbelief surely acting as a defense mechanism. But the more I am faced with the impossible scenarios disabled people like myself are expected to navigate, the more I begin to understand just how insidious these systems are, and just how difficult it is to live above the poverty line when you need the level and amount of care that myself and others like me need.

And here’s an even more unbelievable tidbit: my case manager (who, for the record, is a miracle-worker) managed to find another service, In Home Health Related Care, to cover a large chunk of my hours of care lost from IVRS and not covered by Medicaid. Want to take a guess at this service’s standard rate of pay? $7 an hour! That’s below the federal minimum wage, and as such, I’m still trying to figure out how this is even legal.

Having life-sustaining hours of personal care dependent upon working fulltime is unsustainable and contributes to the harmful assumption that we are only worthy if we are “producing” something from which money can be made. I don’t know if I physically can work a 40-hour week, and I know many other disabled and chronically ill people who cannot. Again, who here is accountable?

I am not the only person facing this systemic barrier. I have spoken with other individuals across the country with the same level of care needs that I have, and they are in the same boat, if not a boat that’s sunk slightly lower (pardon the bad metaphor). If they are not living in a location that can provide care coverage related to work, they may not even be able to work because they do not have a personal care assistant to physically help them 1) get out of bed, 2) get to their place of work, 3) help them with personal cares at work. Even if we’re working remotely, we need to be able to get ready for the day, eat, and use the bathroom, and may need assistance getting ourselves and our computer, phone, or other work-related materials set up in just the right spot. And then we may need our computer or pen (or arms!) moved throughout our work. See how it can be difficult to work if you don’t have care?

Strategizing ways to employ people with disabilities and help us become employed (in ways that work for us) isn’t an inherently bad goal. But ignoring how inextricably tied this goal is to personal care assistance for so many of us is foolish at best. At its worst, this translates to the largest minority in the country having one of the highest unemployment rates, and being shut away in our homes or institutions because we don’t have the help we need to live. This isn’t just unethical, it’s dangerous. And it’s a giant, glaring problem in our country that needs to be talked about, and needs to be fixed.

11/1/2021: Updated to address sliding scale of client participation for care services payment

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