This is the eighth and last in a series (seven blogs, one article) that addresses how persons caught up in the mental health system can be helped to live as effective citizens in the larger community. This particular blog will focus on jobs, the failure of the mental health system to connect its consumers to mainstream jobs, and the political strategy that mental health consumers, past and present, will have to pursue in order to obtain jobs in the mainstream or larger community.
If you ask individuals receiving treatment services from a behavioral health program if they want to work, to a person they'll answer "Yes." Yet, most have never worked and, if they have, will never get another job. They'll be blocked by terrible apprehension at what they might encounter, much of it rooted in unhappy interpersonal experiences in the workplace and in the larger community, both of which serve to engender as well as reinforce their sense of personal inadequacy. Those that are able to return to work in mainstream jobs are often those who have previous work experience and are determined to re-create the lives they once lived.
The few that succeed have good skill sets and a reasonably solid support system at work, at home and in the treatment system. In my own experience, the relatively few case management clients in my programs who worked did so in sub rosa jobs—off the books, low paying, no benefits—mostly in their home neighborhoods. Catalano, et al, refer to these jobs as comprising the "secondary job market." Generally, our clients knew their employers, co-workers and customers. In short, regardless of their apparent exploitation, they chose to work in venues where they were accepted, wouldn't have to explain themselves, and where their entitlements weren't jeopardized. They enjoyed earning extra money, which they used to purchase the small luxuries their SSI benefits wouldn't allow them—a cell phone; cable TV; cigarettes; etc. They could also leave and return to these jobs as they needed to.
This sector of the job market, by definition, does not figure in U.S. Bureau of Labor Statistics tabulations. Accordingly, most of our clients, whether working or not, are never included in the federal government's published monthly unemployment rates. In fact, despite the Americans with Disabilities Act (ADA), passed by the Congress 20 years ago, persons with a range of disabilities, whether physical, developmental, or psychiatric, are grossly underrepresented in the mainstream or "primary" labor market. At any one time, approximately five million persons with disabilities are employed full-time in the primary job market. In a recent speech before the U.S. Chamber of Commerce, Senator Tom Harkin, Chairman of the U.S. Senate Committee on Health, Education, Labor and Pensions and one of the original proponents of the ADA, noted that 400,000 disabled workers lost their jobs during the two-year period (March 2009 to March 2011). This represented a rate of job loss ten times greater than that for workers with no reported disabilities. In short, at this time of unremitting high unemployment, disabled workers' job status is tenuous. The plans of Harkin and his committee to redress this problem is to cajole private industry to add 1.5 million disabled persons to their payrolls by 2015.
It is not clear how many of these employed and newly unemployed workers have psychiatric disabilities. As per the 2009 U.S. Census and the N.Y. State Department of Labor, 3.5 percent of all employed workers in New York that year had cognitive disabilities, defined as "difficulty concentrating, remembering or making decisions." I suspect that the number of such persons is substantially greater. Courtenay Harding's Vermont Longitudinal Research Project showed that well over half of the 250-plus persons followed for over 30 years post-discharge from Vermont's state hospital were assessed to have "good functioning," i.e., had long-term partners and families, were employed and showed no signs of mental illness. To extrapolate from Harding's study and several other longitudinal studies, I would speculate that many folks who are working have chosen not to reveal their psychiatric histories. Our case management clients were always torn about how much to reveal about themselves to prospective employers. The risks that wholesale honesty would expose them to are too great.
The approaches of Harkin and the federal government to this problem are simply paternalistic. The issue at hand, when candor jeopardizes your job and individuals are obliged to keep their identity and personal history hidden in order to earn a living, is one of civil rights. The solution is political. New York State's approach is, ultimately, not dissimilar from Harkin's. The NY State Office of Mental Health began in the early 1990s to train consumers, termed "peers," to work in tandem with mental health professionals and assist persons being discharged from state hospitals to re-settle in the community. I was involved in one of the first such programs, training peers to work with intensive case managers in the Bronx.
That effort proved so successful that the State began to train "peer bridgers" to work as members of discharge planning teams that would ensure that newly discharged hospital patients are linked to needed community-based services. As I write this, there are probably several hundred peer bridgers working in State and non-profit agencies throughout New York City and State as integral members of ACT teams and community outreach teams. The operating supposition is that peers add measures of empathy and life experience that enhance efforts by professionals to promote the community re-integration of persons with serious mental illnesses. I fully agree.
Another operating supposition is that peers will happily take any job in a welcoming environment. Call me old-fashioned, but I believe any person who works for the State or in a position funded by the State should be eligible for the same rights and benefits that all other State and local government employees enjoy: to be paid a living wage—no peer earns as much as $30,000 a year, the minimum amount estimated to live independently in New York City; to join the State's employee union, the Civil Service Employees Association, or other unions; to retire with a pension and health benefits. Still other operating suppositions are that peers don't need health benefits, they have the Medicaid buy-in option; that if they're paid too much, that working will jeopardize their SSI. Are the peer jobs best understood, then, as apprenticeships leading to full-time, permanent status in the mental health system?
Well, we did hire two of the peers assigned to us as full-time case managers in the early days of the peer program. And, while I've always believed in career ladder-type jobs, that concept is not built into this program. Are the skills the peers will learn transferrable to other sectors of the primary job market? Probably not. Peers who are effective will, of course, incorporate a good work ethic and values, including a commitment to mission and a sense of accountability to those they are helping, but the actual helping skills they will employ and develop will be most compatible with those needed in the mental health system. Ultimately, will they get trapped in the mental health system—not as patients but as the new trustees?
Perhaps with this concern in mind, the State Office of Mental Health (SOMH), in partnership with the Department of Labor, has developed a "multi-phase" jobs strategy. As per the introduction published by the New York Association for Psychiatric Rehabilitation Services (NYAPRS) on its listserve (link), the SOMH is proposing a new cross disability initiative that will build on the Department of Labor's One-Stop Operating System (OSOS) as a platform. The initiative would create a redesigned employment support system which will assist with making job matches and facilitating service coordination among all NYS agencies that come into contact with individuals with disabilities seeking employment. (The hip bone's connected to the thigh bone, connected to the knee bone, etc.!!) My initial reaction was, "Where are the jobs?" followed by "What a complicated waste of taxpayers' money—and the expectations of consumers and providers!!"
I've been involved with programs like this before, which require such a high degree of inter-agency coordination and cooperation as to defy belief. They never work because they require consumers to traverse too many steps but offer only an ill-defined payoff at the end. This particular program is too reminiscent of another recent SOMH initiative, its PROS progam (Personalized Recovery Oriented Services) which is underfunded and overwhelmed with bureaucratic requirements that demoralize consumers and staff alike. I predict a similar outcome for this new State initiative, which will raise expectations but which lacks the key commodity which it needs to ensure success. It has no jobs! It can only do, at best, what Senator Harkins is proposing, viz., importune large corporations to hire its clients. To even launch such a program at this point in time is an illustration of what I term careerism, viz., an elaborate, ostensibly logical effort by high level government program managers to demonstrate their programmatic virtuosity and distract us from the fact that the program they're proposing has no substance. All smoke and mirrors.
New York finds itself in the position of putting forward programs that barely remain afloat (in my favorite river, Denial) because it's stuck in a $5 billion Medicaid hole to the Federal Government, stemming from its 1990s decision to fund its community-based programs via Medicaid. None of those programs—the day treatment programs, the consumer clubhouses—exist today. They've been largely replaced by the unpopular PROS programs and overwhelmed clinics, where patients can get their 15 minutes a month with the psychiatrists who prescribe their toxic medications. It simply doesn't have the resources to fund a job creation program, which is clearly something the Federal government appears unable to do either.
To echo the libertarians, government has become the problem. While purporting to assist the persons that it is constitutionally obligated to help, SOMH only succeeds in trampling their rights and maintaining them in an oppressed, dependent state. I was happily encouraged to read, again in the NYAPRS list-serve, that 89 folks, many in wheel chairs, staged a sit-in in the U.S. Capitol rotunda in early May to protest Representative Ryan's block-grant Medicaid proposal and got themselves arrested. Good old civil disobedience by a group that recognizes that its members are being treated like second class citizens! So why aren't those with psychiatric disabilities allying themselves with other disability groups? Where were the consumers and peers when the attacks on civil service unions spawned nationwide rallies of support, many of them here in New York City? Why didn't they join the demonstrations protesting the loss of jobs that accompanied the Wisconsin rallies?
The June 27 New York Times editorial, published in the wake of the historic gay marriage bill signed into law the day prior by Governor Cuomo, cited the new law as the ultimate triumph of the last significant civil rights struggle here in the United States. To which I would respond, as I wrote above, that if a group of individuals has to hide who they are and what they've lived through, then their civil rights, individually and collectively, are being denied them. Which aptly describes the status of persons caught up as patients or consumers in publicly funded mental health systems. Historically, such persons have viewed government largely as a protector, as the one entity that could be depended on, in most situations, to safeguard their interests.
Perhaps, however, we're moving into a new historical period, when the interests of persons who are poor and politically powerless will be disregarded by government. This will require a re-thinking by consumers, peers, and the organizations that claim to represent them of their relationships with government and with other disability-related groups. Could their customary deference to government, for example, be replaced by strategic and periodic confrontations? Could their relationships with other disability groups cross sytems and class boundaries to form action coalitions that end their isolation in the mental health system? Could they ultimately organize with new-found allies a broader civil rights movement with clear, empowering, political aims? Only time will tell. This ends this series of blogs for the summer months.
My thanks for your interest.
References
Bauerlein, M., Jeffrey, C., The Speedup, Mother Jones, July/August, 2011, pp. 18-23
Catalano, R., et al, Labor Market Conditions and Employment of the Mentally Ill, The Journal of Mental Health Policy and Economics, Vol. 2, pp. 51-54, 1999
Goldberg, R.W., et al, Correlates of Long-Term Unemployment Among Inner City Adults with Serious and Persistent Mental Illness, Psychiatric Services, Vol. 52, pp. 101-103, January, 2001
Harding, C., Strauss, J., The Course of Schizophrenia: An Evolving Concept, in Alpert, M., ed., Controversies in Schizophrenia, Guilford, New York, 1985
Harkin, T., Americans with Disabilities Leaving Labor Force at Alarming Rate, April 12, 2011
ISPS: The International Society for the Psychological Treatments of the Schizophrenias and Other Psychoses, Long-term Follow-up Studies of Schizophrenia, May, 2006
Nather, D., Arrested in Medicaid Plan Protest, Politico, May 2, 2011, courtesy NYAPRS list-serve, May 4, 2011
The New York State Office of Mental Health, Multi-Phase Strategy Through Partnership with the Department of Labor, webinar, May, 2011, NYAPRS list-serve, May 9, 2011
The New York Times, The Rest of the Nation Waits for Mr. Obama to Evolve, Editorial, June 27, 2011
U.S. Bureau of Labor Statistics, Local Area Unemployment Statistics, June, 2011 (c.f., http://www.bls.gov/lau/)
Von Schrader, S., et al, 2010 New York State Disability & Employment Status Report, Cornell University, Employment and Disability Institute, 2011
More on "Helping consumers add years to their lives"
- Helping consumers add years to their lives (Part VII): More implications for treatment and training
- Helping consumers add years to their lives (Part VI): The Implications of ACEs and a Trauma-based Treatment Model
- Helping consumers add years to their lives (Part V): Replacing the Disease/Biological Model with ACEs
- Helping consumers add years to their lives (Part IV): The Beginning of the End of Institutionalized Housing in New York City
- Helping consumers add years to their lives (Part III): Psychoactive Drug Dependence & Harm Reduction
- Helping consumers add years to their lives (Part II): The metabolic syndrome monitoring protocol and other tools
- Helping consumers add years to their lives (Part I): Training case managers and clients to be partners in primary healthcare advocacy
