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Advocacy Unlimited - Recovery and advocacy education for people with mental health and/or addiction issuesAdvocacy Unlimited, Inc. - Comprehensive education in recovery and advocacy skills for people in recovery from mental health and/or addiction issues

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Planning Your Own Agenda

By Yvette Sangster and Ed Kramer
Yale University School of Medicine, Breakthroughs, Winter 1998

Persons in Recovery Must Begin to Plan Their Own Agenda

As the 20th century nears an end, individuals and societies will undoubtedly reflect on past accomplishments and miracles, failures and tragedies. But the rapid approach of the new millennium also demands that people look to the future with clear objectives and sincere resolve. Participants in the community mental health system are also charged with the responsibility of preparing for the year 2000. Those of us with psychiatric disabilities, our family members, and health and social service providers must soon begin a period of reflection and goal-setting so that the 21st century can begin with renewed promise and hope. Even though the various constituencies driving the system sometimes embrace differing agenda or pursue separate paths, all persons, from consumers to providers, are bound by a single, basic vision. It is a vision in which persons challenged by disability are afforded the same opportunities to succeed and prosper as everyone else; the same opportunities to make mistakes and make adjustments. Clearly, these opportunities must be rooted in the consideration of "quality of life" issues.

We believe that the various players in the present system must actively engage in all discussions purporting to address "quality of life." To this end, Advocacy Unlimited (formerly known as the Community Advocacy Education Division of the Connecticut Legal Rights Project ,CAED) has been facilitating a number of formal and informal interviews with fellow consumers of psychiatric and rehabilitation services. In these talks, a number of issues were raised, but the following seemed to be the most important ones facing us in the next years. They are presented in a rank order as determined by the frequency of mention by consumers.


The most mentioned concern raised by consumers was directly related to housing. Many are living at or near poverty level and their available housing options are, in many cases, substandard. Crime, open drug trade, dilapidated conditions, unresponsive landlords, and an unavailability of public transportation are all-too-common impediments to consumer choice in housing. Even more repressive to our attempt to become fully integrated into the community is the existence of a parallel universe. It is a world wherein consumers live in mental health ghettos, and receive job training through separate programs, or even pursue GED's through "special tracks". A "separate but equal" mentality undermines any effort to accomplish successful integration. We must, therefore, demand housing solutions that directly address these issues. Safe, affordable, stable, and fully integrated housing shall be a primary goal of the new millennium. In support of our housing and other needs , we must demand subsidies that will allow us the flexibility to move to the neighborhoods of our choice, train for the jobs for which we are qualified, study in programs that challenge us to learn, and reach higher.


The second, most frequently raised issue points to the perception that the general public continues to hold on to antiquated and prejudicial notions about those of us with psychiatric disabilities. More disturbingly, agencies and systems that are charged with the responsibility of working with persons with disabilities are sometimes equally uninformed or negative. Every effort must be made to better educate communities, governments, public and private agencies about the capabilities and strengths of persons with psychiatric disabilities. Heightened community awareness through improved, more balanced media coverage, and aggressive community education programs is, therefore, a most important goal. It is a goal, however, that is only attainable if the various players in the community mental health system coordinate their efforts and illuminate a shared vision. But let us remember, we cannot wait for others to tell our stories. We must remain visible, vocal, and unified.

Managed Care

It should come as no surprise that the term "managed care" was bandied about during most of the discussions about the 21st century. The concerns expressed, however, centered on the consumers' abject confusion and fears relative to the new delivery system that is emerging. The words and principles espousing a managed care environment have been flying fast and furiously for some time. The impact on the individual consumer is never fully explained or adequately addressed, or so say the dozens of persons interviewed for the present article. Given this, a third goal emerges. Consumers demand a simple, straightforward and timely answer to the direct question, "What will managed care mean to me?" Will provisions be made to offer consumer-run services? Will treatments or therapies be flexible, affording optimal levels of consumer choice? Will consumers be included in case management decisions and utilization review? We must reject paternalistic attitudes that foster a belief that things must be done in our best interest. We must abandon a medical model that all-too-often traps us in roles that pre-determine our future and slow our recovery. We are competent to self-determine. Let this be the filter through which all flows.


A large number of consumers spoke to the issue of police responsiveness to our needs. While some praised their local departments, others complained of the harsh, rude, insensitive, and sometimes intimidating behaviors of some officers. Police officers sometimes seem afraid of us; sometimes seem angry at us; frequently seem uninformed about psychiatric disabilities. Thus, we call for standardized training for police officers across the state and thorough review or revision of policies and procedures at the local departmental levels. Consumers emphatically assert that they are not looking for special treatment or consideration. On the converse, they are demanding to be treated as everyone else. Arrest criminals. Support and protect law-abiding citizens. A sub-goal necessarily emerges: municipalities must establish consumer driven review processes to investigate complaints of inappropriate police responses to persons with psychiatric disability.


Finally, it is well understood that most of us who can work are eager to participate in meaningful work; many of us are deeply committed to working on behalf of ourselves and our peers. In our discussions for example, a number of people suggested that consumers could design, develop and run respite care programs that are therapeutic and cost effective. Peer support and partnership programs also demand the leadership of qualified consumers. Then, too, some propose for-profit ventures. In response to these and other suggestions, we call for an increase in consumer run programs and/or businesses. As a unified group, we must secure funding sources and seed capital for these enterprises. All administrative and legislative avenues must be pursued.

Although we have just barely begun to address all of the challenges and opportunities that lay ahead as 2000 looms, we must close the present article due to editorial space considerations. We challenge the reader, however, to continue these most important discussions among your peers and constituents. Together, let us all participate in the goal-setting and problem-solving that must precede the next millennium. In the years to come , let us do away with any notion that we are but an isolated village in a larger community; let us ensure that there exists a single community, of which we are a dynamic part.

© Copyright Advocacy Unlimited, Inc.

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