Charlie Gargiulo used to work at the University of Massachusetts, Lowell in the Work Environment Department before it happened. He enjoyed his job, especially being able to look at the big picture to solve problems. Then one morning in 1993, he just couldn’t get out of bed.
“I had this black, heavy thing that literally made me paralyzed,” he says. “It just freaked me out.” His partner called in sick for him and took him to the doctor. “I’d just come down with this major depression.” After a six-month leave of absence, he quit his job at the university. Thus began his struggle to keep a job while suffering from a mental illness.
For millions of unemployed Americans suffering from a mental disorder, finding employment and maintaining their benefits is a continuous struggle. In 2012, 3.1 million adults with a mental illness were unemployed, according to data from the National Surveys on Drug Use and Health. In Massachusetts, 89.1% of people with a severe mental illness, or 52,461, were unemployed. Boston residents with mental health concerns have various organizations to turn to for help finding employment, most of them funded by the state government and taxpayers. These organizations, among others, provide direct services to help this community find employment and keep their benefits. Yet regardless of all these services, the problem persists, especially for people with a high-functioning mental illness.
The problem had roots in a well-intended policy gone bad. In 1955, psychiatric hospitals began treating their patients with Thorazine, the first antipsychotic medication. After Medicaid passed in 1965, psychiatric hospitals began moving patients with severe mental disorders out of state institutions and closing their doors – a process called deinstitutionalization. By the late 1970s, most of these institutions were closed, leaving people with mental illness to fend for themselves. Despite good intentions, the policy resulted in an increase of homelessness and an underserved population.
To make amends, organizations aimed at helping this community sprung up all over the country. Beginning in the early 1970s, Massachusetts state government began funding disability programs in organizations like the Massachusetts Rehabilitation Commission (MRC) and the Massachusetts Clubhouse Coalition (MCC) and the Boston Center for Independent Living (BCIL). These groups advocate on behalf of the people who were forced into the streets by deinstitutionalization. They provide key services like workshops to prepare people for job interviews, vocational counseling, mentoring, and other direct employment services. They exist to support people with all sorts of disabilities, including mental illnesses.
Professionals with a high-functioning mental illness may also need help finding employment. According to psychiatrist Dr. Deborah Quinton from New, Albany Indiana, a high-functioning person with mental illness is someone who performs at the highest possible level despite suffering from an often debilitating disease. High-functioning illnesses include severe depression, bipolar disorder, borderline personality disorder, post-traumatic stress disorder (PTSD), anxiety, and some cases of schizophrenia.
Charlie Gargiulo served in Special Forces in the Army before he started working at the University of Massachusetts. Once his depression hit and he became unemployed, he couldn’t find adequate resources to help him find a job. “There wasn’t a lot available for people who were professionals,” says Charlie. He tried finding employment through the MRC, but they didn’t have much support available for people with an education. Most organizations help people with little or no education find jobs in local business. Jewish Vocational Services, for example, offers a workshop that trains people to work at CVS. Yet Charlie doesn’t see himself bagging groceries at the local market. He would rather use his professional skills to help a company strategically approach problems.
Like other people with mental illnesses, Charlie worries about managing his health care. He has Medicare Part D, also known as the Medicare prescription drug benefit, that subsidizes the cost of his medication. Charlie’s health coverage keeps him going, but he doesn’t have access to dental or eye coverage because last year he made $50 above the cut-off annual income doing some odd-ends jobs. “It’s frustrating because I can’t afford new glasses,” says Charlie. “My vision’s changed a couple times and I’m still wearing the same glasses. Not to be a sob story, but that’s just the truth.”
Unfortunately, Charlie’s story is common. For people living with a mental disorder, the possibility that even a slight yearly income increase will cause them to lose their vital medical benefits is a real concern. As of January 2016, if an individual makes more than $733 a month, then he or she is no longer eligible for Medicare and Supplemental Security Income (SSI) benefits – a federal income supplement program funded by general tax revenues. People with mental illnesses depend on these sources of income to recover. Yet the severe salary cap makes it difficult to find a suitable balance between being employed and keeping benefits.
Finding a source of income while not losing benefits is only half of the equation. The other half requires getting treatment. Charlie gets psychotherapy for his depression. “When you’ve had this a long time and it’s not going away, the thing that’s most valuable to me is having… a therapist,” says Charlie. “Somebody that you can trust.”
Most people with depression turn to cognitive behavioral therapy in which a therapist works with the patient to uncover unhealthy patterns of thought and develop constructive to avoid them. For people with severe depression, benefits for cognitive behavioral therapy can last anywhere from 16 to 20 sessions over 6 to 9 months. Unfortunately, depression is a lifelong illness and six to nine months isn’t enough time to fully recover.
Charlie feels that long-term psychodynamic psychotherapy (LTPP) works better for him. That therapy also known as insight-oriented therapy, allows patients to become aware of how they unconsciously behave. LTPP requires a longer time commitment with more frequent sessions than most other therapies. With increasing budget cuts to both Medicare and SSI, patients like Charlie no longer have access to the full course of therapy they need.
Even if adequate resources were available – including options for professionals with mental illnesses, a suitable balance between income and benefits, and access to therapy – people with a mental disorders face an ongoing stigma. Sociology researcher Crosby Hipes at the University of Maryland compared hiring patterns for people with a mental illness to those with a physical injury. He fictitiously applied for 635 jobs in the computer industry across the country. In his applications, 324 had a six-month gap in recent work history due to mental illness while 311 had a six-month gap due to a physical injury. “We found that people with a history of mental illness have a lower chance to be hired for a job for which they’re well qualified,” says Hipes. He is currently doing more research to investigate why this discrimination exists. Some of his findings indicate that people with mental disorders are stereotyped as potentially dangerous, incompetent, and not assertive enough.
Despite the numerous programs that exist across the country intended to help people with mental illnesses, employment rates are still low in this community. The National Allegiance of Mental Illness (NAMI), a nationwide advocacy group, recommends a new way to help people with a mental illness find employment. Instead of training individuals prior to employment, NAMI suggests organizations find employment for individuals and then train them. This ensures a better match with the job market and a higher continuation rate. To address the issue of a work-benefit balance, the federal government began the Ticket to Work program. This program helps SSI beneficiaries go to work, get a job that may lead to a career, and become financially independent while they keep their Medicare. While it doesn’t eliminate the annual income cut-off, it allows people with mental illnesses to feel comfortable working without fear of losing their benefits.
For Charlie, the next steps are getting help managing his health care and finding a comfortable job where he can use his professional skills. In the meantime, Charlie is looking forward to next year when he turns 65 and will start receiving senior citizen benefits, which will help him not worry about making too much income and losing his health care. Charlie’s income issues may soon go away, but millions of unemployed Americans with mental illnesses will continue to struggle unless something is done to solve their unemployment problem.