Most people with psychiatric disabilities in the United States are not employed in paid work. They rely instead on meager disability benefits from the Social Security Administration (SSA), which leave most living below or just above the Federal Poverty Level (FPL) which is itself extremely low. In many states, people who live at 200 per cent of the FPL can barely afford to pay rent. As a result, this group is more likely than others to have no money at the end of the month, to fall behind on rent and bills and to experience high levels of debt and financial stress. These experiences of financial hardship hinder mental health recovery and negatively impact quality of life.
Why do so few people with psychiatric disabilities work? Studies show that 65–70 per cent of people with psychiatric disabilities would like a job, though fewer than 15 per cent have one. The reasons are varied. At the individual level, it is certainly true that the nature of some people’s disability is such that they simply cannot do any type of job. Those who could do some type of job are limited by significant structural constraints, including stigma and lack of accommodations that make it hard to find and hold a job, and/or by the low wages, low job security and unpredictable hours that characterise the types of jobs that people with psychiatric disabilities tend to get.
There are also barriers to work built into the disability benefits system in the United States, including strict limits on earning income and saving money. If a person goes over those limits they lose all or part of their disability income for the month that they were over the limit. The limits vary depending on the type of benefit received – people who have a work history and have paid into the Social Security system get Social Security Disability Income (SSDI) whereas those with no or little work history get Supplemental Security Income (SSI) – but in all cases, the limits are low, such that a person does not have to earn or save much to go over. Also, the specific rules are complex and hard to follow, which means it is easy for people to go over the limits inadvertently; in some cases the SSA itself makes errors. There is almost always a time lag between the time a person exceeds the limit and the determination of ineligibility. Thus, in most cases, if a person goes over the limits, they face what is called an ‘overpayment’. Typically, a person receives a notice from the SSA after the event – sometimes months or even years later – telling them that due to being over the income or asset limits during a prior month or months, they were not in fact eligible for their full benefits payment that/those month(s) and must now repay the SSA what they owe.
While accurate data is hard to come by, evidence suggests that of the small number – only 4 per cent – of people receiving SSDI who earn over the income-earning limits at some point, a huge 82 per cent end up owing an overpayment, with the median amount owed being more than $9,000; people who are Black, Hispanic and who receive lower disability benefit amounts are more likely to owe. Close to 100,000 people with disabilities may be in debt at any one time, not due to overspending, but perversely due to earning or saving ‘too much’, and perhaps even more perversely, in debt to the very agency responsible for their financial wellbeing. Research has found that significant numbers of people who face an overpayment due to employment stop working after that experience or reduce their work hours.
Yolanda, co-author of this piece, has been dealing with a protracted overpayment situation due to going over-income (allegedly). After receiving SSDI for many years, she returned to work, then after a few years of working, became ill again, left her job and reapplied for benefits. However, she then started to receive communications from the SSA saying that she owed as much as $30,000. The confusing and often contradictory content of those letters (the putative amount owed varied wildly from letter to letter, and the letters sometimes even said that the SSA owed her money) led Yolanda to ask co-author Annie to become her representative payee (a person who takes over control of the benefits income of someone who is deemed ‘incapable’ of managing their funds) to be able to help her make sense of it. After years of confusing and contradictory letters, phone calls and in-person meetings (with Annie being just as confused as Yolanda), Yolanda has eventually settled on repaying the SSA $200 each month for an extended period until the money she ‘owes’ is repaid. Yolanda is one among many. Both of us know many people who are bewildered by communications from the SSA suggesting that they owe an overpayment, or who are struggling to manage an existing overpayment.
While the number of people who are at risk from overpayment due to employment income is low, the effects of these policies go far beyond those directly impacted. Both Annie and Yolanda know numerous people on disability benefits who would like to work but worry that if they get a job, or work more hours than they currently do, they may face an overpayment. After having experienced this, or hearing about it from others, many people decide that it is safer not to work at all, and not to save any money. One study found that 68 per cent of people on disability support reported that fear of losing benefits prevented them from looking for a job, or a better job if they were already working. This behaviour is not irrational or unusual; choosing not to work to maintain receipt of benefits is entirely consistent with established patterns of decision making under risk observed in Prospect Theory, in which individuals are motivated more by anticipated loss than by anticipated equivalent gains. We also know that living with debt that is hard to repay – as it inevitably is for people on such low incomes – is extremely stressful and can harm mental health recovery.
The strict SSA income earning and asset limits may suggest that the agency’s main role is to ensure that only those who are ‘genuinely’ unable to work receive disability benefits. However, while this is indeed one of its key roles, the agency is also, together with numerous organisations across the country, tasked with getting as many benefit recipients as possible ‘back to work’, and has various programmes in place to support that effort. People receiving disability benefits are thus subject to contradictory logics. On the one hand, they are required to prove their deservingness for disability benefits, by demonstrating that they are entirely disabled, completely unable to work – along with the stigma associated with that – and once approved, are subject to regular ‘disability redeterminations’ to make sure that nobody ‘cheats the system’. On the other hand, they are both shamed and ‘encouraged’ to go back to work, trammelled by a neoliberal logic, subscribed to by many disability rights advocates, according to which full citizenship and social inclusion rests on a person being ‘productively’ employed. But, as soon as they take steps towards being the ideal productive citizen, by finding a few hours’ work here and there, or saving any money they are lucky enough to get, they risk becoming indebted to the SSA due to overpayment. Notions of the ideal neoliberal self have combined with older narratives of deservedness (‘worthy versus unworthy poor’) to create a system in which it is almost impossible to survive.
While many people continue to try to make the system work for them, working in ad hoc positions, under the table, if possible, to try to hide their income from the SSA, applying for waivers if they receive an overpayment notice or, like Yolanda, capitulating and paying the SSA, others simply give up. One of Annie’s clients, who had spent years trying to work here and there to supplement his meager disability payment, and who had faced repeated overpayments, told Annie that he simply didn’t bother trying anymore. “Fuck it”, he said. “I’m not playing this game anymore”.
Annie Harper has a PhD in Social Anthropology and is Assistant Professor in the Yale School of Medicine’s Program for Recovery and Community Health where she studies the intersections between finances, poverty and mental health.
Yolanda Herring is a Research Assistant and Recovery Support Specialist working at Yale School of Medicine who has dedicated her life to working with special populations including but not limited to individuals who struggle with addiction, homelessness, and mental health issues.
Image credit: Stewart Munro via Unsplash