The Power of Participation

by Jeffrey Lewis

This paper is written on the assumption that mental health consumers are

underrepresented on boards of mental health agencies that make decisions that affect their lives.

Much as in the civil rights and women’s movements, consumers of

mental health services are exercising a new found consciousness, a new

sense of personal dignity arising from recognition of their basic rights

and the opportunity to participate in decisions that affect them.

Ministry of Health, (1995).

My proposed remedy is to have the federal government reemerge as an influence for the social well being of our country and the mental health community, in particular, by reverting to the Quie amendment (1967) to the Economic Opportunity Act of 1964 (Garson, 2004). This would insist that every board of governance of the mental health agencies with which they deal have a minimum of 30 percent consumer representation.

The origins of the problem lie in the enactment of the Community Mental Health Centers Act of 1963 (Friedman, 2004). Conversely, the enactment of the Economic Opportunity Act of 1964 laid part of the groundwork for the solution of the problem. The origins of the Community Mental Health Centers Act of 1963 lay in the enactment of the Mental Health Study Act of 1955 (Friedman, 2004).

The point of this legislation was the study of the status of mental health consumers in the United States. This came at a time when legislators and policy makers were considering a paradigm shift from institutionalization of the mentally ill to treatment of the mentally ill on an outpatient basis in the community.

The results of this study, which called for the paradigm shift, were published in 1960. This would lead to the passage of the 1963 Community Mental Health Centers Act, which was signed into law by President John F. Kennedy. It was considered far reaching, because it called for the complete de-institutionalization of all people with mental illnesses to facilities in the community where they could be near their loved ones and live close to normal lives.

The fatal flaw of this legislation was the fact that during the period of 1960 through 1963, no planning was done for their discharge. Community outpatient clinics were totally unprepared to handle the new influx of clients. This resulted in the first instances of homelessness. At the same time, the civil rights movement, which began with the actions of Ms. Rosa Parks and the Montgomery Alabama bus boycott in 1956, was emerging as a powerful social movement.

Subsequent to that were the Civil Rights bills of 1957, and 1960. In 1963, there was the March on Washington, where Dr. Martin Luther King Jr. delivered his famous “I Have a Dream Speech.” This is a point of intersection for both the civil rights movement and the mental health movement. Activists in both groups were demanding more independence. Then President Kennedy was assassinated on November 22nd, 1963. Lyndon B. Johnson succeeded him in the presidency. Johnson, who was a former Senate Majority Leader, had great legislative skill, and that, combined with the outpouring of grief over the death of the president, facilitated the enactment of the Economic Opportunity Act of 1964, the Civil Rights Act of 1964, and the Voting Rights Act of 1965.

The Economic Opportunity Act of 1964 (Garson, 2004), was historic because for the first time it insisted on the transfer of federal taxpayer dollars directly to local projects, thus bypassing local governments. These projects were called Community Action Agencies, which in turn designated Community Action programs to receive many of the funds for specific projects that impoverished consumers identified as important to their health and their communities. This could be the reconstruction of a new school, or the construction of a badly needed dental dispensary.

In 1967, after three years of the so-called “Long, Hot Summers” of racial disturbances in many cities, mayors and other elected officials began demanding a much bigger role in the development and subsequent make-up of the Community Action Agencies. Therefore, under the Green Amendment of 1967 (Garson, 2004), many of the agencies either came under the direct control of the mayors, or became, in the instance of big cities, outright public agencies. During 1967, the Quie Amendment to the Economic Opportunity Act of 1964 required that every anti-poverty agency have on board one third consumers, one third agency staff, and one third elected officials. This minimized, but did not discourage, the participation of poor people on the boards of the decision making agencies that regularly make decisions that impact their lives.

The arguments on behalf of my idea I believe are quite strong. For example, Senator Edward Kennedy was a very strong believer in the mental health planning legislation that was enacted by Congress during the 1980s. He also supported the Health Insurance Portability and Accounting Act of 1996. Mental health parity legislation was part of that.

There are a couple of concepts that come out of my work on consumer participation on the boards of mental health agencies. The first is the concept of mental health planning. The second is consumer representation on the boards of mental health agencies themselves.

Inherent in all of that is the idea of the federal government playing a facilitating role in getting ordinary citizens to come into dialogue about issues that concern them. Alexis de Tocqueville discussed the habit Americans had in the 1830s of forming associations, which in his opinion, were the backbone of democracy. Recently, Robert Putnam lamented the breakdown of this kind of “civic engagement,” calling it one reason why our democracy is in serious trouble (Putnam, 1995). I really believe that it will take federal action in this area of healthcare to ensure consumer participation on the boards of the mental health agencies that make decisions that impact their daily lives.

The reason I believe this is because there have been hundreds of years of discrimination against the mentally ill in this country. People with mental illness have been consistently told by members of the professional community, in what is called the traditional client-professional relationship, that they are incapable of making decisions on their own for themselves.

It is important to note arguments against federal involvement in this matter. First of all, the insurance companies would oppose it because they would view it as a challenge to the primacy of managed care companies. Conservatives would oppose it because they believe it would impinge on states rights. For the past thirty to thirty five years, there has been a rollback in federal involvement in domestic social programs, which began with Richard Nixon’s Southern Strategy in 1968, and his opposition to school de-segregation. A benchmark in this consistent decline of federal involvement in the economic and social lives of millions of Americans would be the Mental Health Planning Act of 1986. [[This act]] was a continuation of President Reagan’s New Federalism, in the sense that most of the responsibility for mental health planning was devolved (sent down) to the states. What actually happened was that this legislation emulated the federal Health Planning and Development Act of 1974 by mandating that planning councils be set up at the state levels that parallel the Statewide Health Coordinating Councils.

In conclusion, there are several themes that are present here. The first theme is the concept of mental health planning and the consumer participation that is involved with that. The second is actual representation on the boards of mental health agencies themselves. The last is the implied belief that those who promote democracy along the lines envisaged by de Tocqueville and Putnam in the mental health system may well be helping to promote the revival of democracy, i.e. civic engagement in the larger community.

References:

Friedman, M.. “Think About the Next Twenty Five Years,” Mental Health News, Fall 2002. http://www.namiscc.org/Editorial/2002/FederalMentalHealthCarePolicy.htm

Garson, G. David. Economic Opportunity Act of 1964. http://cwx.prenhall.com/bookbind/ pubbooks/burns4/medialib/docs/eoa1964.htm.

Putnam, Robert D. “Bowling Alone: America’s Declining Social Capital, ” The Journal of Democracy,1995. http://xroads.virginia.edu/-HYPER/DETOC/assoc/bowling.html

Whittaker, Robert. (2002) Mad in America, 2002. Perseus Publishing Group, Cambridge, Massachusetts.