Living Life or Living on Life Support?: On Being A Direct Support Worker and What Goes on In This World

After being let go from my job as a direct support professional (henceforth, DSP), I have a chance to step back and critically think about what I’ve been doing for all the time that I didn’t blog. This is the culmination of three years of work so it may be a little long. Call it an exposé.

Introduction

Although anyone with a disability is eligible for these services, the work is mainly geared towards people who were in institutions like Willowbrook where disabled people were poorly treated and cut off from the rest of the world. The history of disability in the United States is dark and revolting, full of terrible housing conditions, inhumane treatment, and quackish ‘cures,’ and it wasn’t until the 1980s when anything resembling a civil rights movement for the disabled started. To learn more about this dark history, I urge you to read Robert Whitaker’s Mad in America (it’s more about mental illness but those who we call disabled today could’ve easily been lumped into the ‘mentally ill’ category back then). We as a society are becoming more accepting of disability but as I’ve seen on the job, some of the residue of our dark history remains.

For those who don’t know what a DSP is, they provide services directly to disabled people of all kinds. The nature of the services vary depending on the individual’s needs and their agency but broadly speaking, the DSP’s job is to provide a crutch for the participant/client/whatever-term-the-agency-uses and help them perform whatever daily living activities they need help in. For example, if they have difficulty navigating the subway system, you help them with that. DSPs may also help them become part of the community by doing fun things with them. I once went to a baseball game with a participant and I brought another to my place and jammed with him. DSPs also act as advocates, liaising with members of the community to meet their participant’s needs. The participant is the boss; it’s an empowering dynamic for them and it gives them a chance to experience independent living. It sounds counterintuitive but in some cases, their time with a DSP is ironically their most free. It’s important to know when to step in and when to step back and the best DSPs often times don’t look like they’re ‘working.’

I had been doing this for nearly three years and received a lot of recognition for it. I’ve won awards, been moved up to a lead role, making me one of the higher paid DSPs, and became considered one of the best in the organization. During the few times a month that I’m in the office, I commanded respect almost too easily. Sometimes I wondered if they just stroked my ego to encourage me to do all the work, which is likely because since my departure two weeks ago, no one that I thought I became friendly with has reached out to check in on me, not even families. It’s also possible that they’re used to DSPs leaving, including the good ones.

Rich in Our Hearts, Broke in Our Pockets

The direct support field is plagued with massive turnover rates, mostly because for what the job entails, the pay is abysmal. Remember when I said I was one of the higher paid DSPs? I was only paid $13/hr by the time I left. It’s better than the average $10.23/hr that most others make but even my wage was not livable – at least in NYC – unless I regularly worked overtime. And this isn’t a case of upper management being money-grubbers.

An agency of this sort, along with other non-profits, is funded mostly by the government. We have fundraising but 80% of our money comes from Medicaid and the salaries all across the company are sad. My supervisor only made $40K. And because we’re funded by Medicaid, we have to work within the system, which may result in us playing stupid bureaucratic games. Although we have room to experiment with novel programs, I sometimes wonder how we’d function if Medicaid didn’t have control over virtually everything we do. Either way, the organization constantly faces money problems, which leads to downsizing and cutting corners, which leads to reduction in quality of services, which will eventually lead to the agency’s demise.

Supervisors (we call them coordinators here) face a catch-22. They want the best and the smartest DSPs to stay but realistically, because coordinators cannot provide them with any incentive to stay for longer than a few years, the better DSPs either move up in the organization or get fed up and leave. It can be disconcerting for the participants who would then have to go through the process of getting comfortable with a new DSP every time their old one leaves the job.

Judging from the work culture at my agency, people who enter and do well in this kind of work have a very specific personality. A coworker once described everyone in the organization as “rich in our hearts but broke in our pockets.” Nearly everyone at my agency has an upbeat personality. They’re smart but don’t take themselves too seriously. Meetings were frequently peppered with laughter. My supervisor and I joked around a lot. And we still got shit done. It felt less like a faceless corporation and more like a closely-knit community of like-minded people striving towards the same thing. The work environment, however, is very delicate.

Play With Shit And You’ll Get Shit On You

If a DSP calls in sick, the coordinator has to either find a temporary replacement quickly or perform direct support work themselves, the latter of which may throw off their schedule. Being reliable and flexible when a DSP calls out is a huge, unspoken part of the job, no matter your job title, and will earn you respect very quickly. Do this too much, however, and you’ll become overworked; coordinators will figure out that they can rely on you and will consistently go to you if something happens. It’s hard having a good reputation.

Since the human factor is involved in this work and because the most valuable currency in this field is care, it can be emotionally difficult to turn down extra work, especially if you have a good reputation and are eager to live up to that. We all want to do good things for others but a good human services organization can exploit this fact to get their employees to take on more work than they should. It’s not like turning down a project. Unless you’re a psychopath or genuinely overworked, turning down an extra shift in this job can feel a bit like abandoning someone. Maybe I’m just sensitive.

As with any other human services type of job, getting too close with your participants can be dangerous, as their problems will feel like your own. I worked with someone who was going through some serious family issues throughout October and because I had a closer relationship with this participant than any other DSP, I was given the hard job of keeping his already-broken family together (I’ll write about this later). I started trying to detach myself from the situation two weeks in because not only was I working more than I should but also the situation was starting to affect my mental state, which then affected my work performance.

Do the Participants Really Benefit?

As I said, we get most of our funding from Medicaid so our work is largely bound to a faceless bureaucratic system. We have to display our progress to justify the flow of funds and in order to do that, we need to quantify our work, never mind the fact that quantifying this kind of work is preposterous. For example, my organization has what’s considered an exceptional employment program and they may brag about job placement and retention rates among our participants. It’s great and all; it’s more than can be said for the huge swaths of the disabled population that either are unemployed or have difficulty holding down a job. But what really goes on behind the numbers?

Our employment program is divided into two departments: The Employment department finds and sometimes customizes jobs for the participants and the SEMP (short for Supported Employment) department works to help the employed participants keep their jobs. My girlfriend works in SEMP as a SEMP Counselor. Her job is to manage a caseload of participants of varying ages who are employed. She visits them while they work once every two weeks to check in on them and to speak with their supervisors to resolve any issues that may arise on the job concerning her participants. In addition, if one of her participants expresses frustration with the job or a desire to quit, she has to counsel them and get them to stay in their job. I should add that her participants usually perform menial jobs such as pushing shopping carts, shredding paper, wiping tables, delivery, and other small, repetitive jobs that anyone would find depressing. Only one person on her caseload actually likes their job. While counseling may be necessary at times, she doesn’t get to challenge whether or not this is the kind of work they really wanted in the first place; her job is to placate them into staying, which keeps our agency’s job retention rates high. If our job is to empower them, then why are we cajoling them into staying in a dead-end job? Is it all for show?

It may have more to do with the fact that we are living in a time when disability is starting to lose its stigma. The older participants accept the work because they believe that there’s nothing else out there for them due to the years of oppression that they have faced. They are thankful to have any kind of work at all, no matter how menial it is. Maybe my girlfriend and I are both just high on youth and have our heads in the clouds but we believe that all of our participants are capable of more than dead-end work.

We do have younger participants in their twenties in our agency who are very smart and feel more capable of success in their chosen fields. They have come of age in a time when disability wasn’t as stigmatized as it was for participants who are in their fifties, who grew up when ideas like the refrigerator mother theory were popular. Thankfully, I got to work mostly with younger participants. I preferred working with them to working with the older ones; they were more impressionable and I felt like I still had a chance to help them become something great, rather than just placating them and helping them get by.

Conclusion and Comments to All in the Field

Direct support work is a flawed system but it’s the least flawed. It’s a better approach to aiding disabled people than, say, putting them in institutions or group homes, shielding them from the world, and not giving them a chance to simply exist on their own terms. DSPs, along with special educators, social workers and other such people, are working to foster acceptance of disabled people. A good DSP, rather than shielding them from failure, gives their participants room to fail and learn from it. A good DSP gives life, not just life support.

If you want to pursue this work, the best advice I can offer is to maintain your personal sanity and to advocate for yourself as a worker. Don’t take on more work than you need to. Even if they say it’s an emergency, they can find someone else. Yes, the participants are important but if you feel like you can’t advocate for yourself, how could you possibly feel empowered to advocate for someone else? After working overtime for a few months straight, I became frustrated with the job and slipped as a worker. If you are of sound mind, you can do this job well but if you feel like you need a vacation, I highly urge you to take one. While this is true of all jobs, the importance of time off increases here, since you are working with people and they will pick up on and become affected by your mood. I don’t care if your supervisors give you a hard time about it. If they do, let them fire you and go find a different agency.

You may need training depending on what state you live in (I know California requires it) but in New York State, it’s possible to get started with just a high school diploma and a good heart.

If you hold a high position in an organization that employs DSPs, I challenge you to institute a sabbatical for them, in which they take at least three weeks of paid time off per year. Due to our low wage, most of us cannot afford to take time off, even though we need it. The participants will benefit too; it’s best to spare them a DSP who needs a vacation and find a temporary replacement. It can be difficult finding a replacement but your DSP will come back rejuvenated and will most likely perform their job better. If a sabbatical is outside your agency’s means, try giving your best DSPs a salary instead of an hourly wage. That way, it will feel more like a real job and provide more incentive for them to stay for the long term. There’s no getting around it. If you don’t treat your DSPs well, your agency is for shit.

If you are the parent or caretaker of someone who receives services, give their DSP the benefit of the doubt, especially if they’re overworked. This may be a thankless job but it doesn’t have to be.

If you want to work with disability in the future, becoming a DSP is a great and easy way to get started. You’ll get a lot of hands-on experience and you’ll be more privy to what goes on in this population. It’s an especially good experience if you’re interested in social work or special education. I’ve seen and learned a lot and my experience in the direct support field will be part of the base that I build my career on.

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