Advocating Positive Change & in the Treatment of Dual Disorders

Sheryl McCormick, Advocacy Coordinator Dual Diagnosis Recovery Network

If the system that treats and supports persons with dual disorders is not providing what is necessary to achieve the best quality of life possible, we each bear a responsibility to do something to improve the situation. Can anyone honestly say that he or she is satisfied with the present treatment and support structures in place across the country for consumers and their families? Is everyone who wants or needs to be in recovery in recovery? If not, we have to advocate for positive change.

Advocacy is standing up for something or someone you believe in. With the issues of mental health and substance dependency, especially when combined as dual disorders, an ongoing struggle exists between supporters and the unenlightened who frequently dismiss affected persons as incurable, dangerous, and worthless or only marginally important. We must speak for those who are unable to advocate for themselves.

Our goal to educate ourselves and the public about the etiology of the disorders and the most effective treatment and support modalities is driven by the knowledge that, contrary to popular opinion, people with dual disorders can and do recover, are less likely to be dangerous than the average person, and make up a significant portion of our population whose positive contributions have been culturally significant. By being up-to-date on research and trends, we can lead the way to a better quality of life for persons with co-occurring disorders and their families and society as a whole which is impacted negatively by the lack of adequate, appropriate treatments and community supports. Our knowledge and experience, when shared with others, can be a powerful agent for change.

Stigma has its dirty fingers all over our issues and is an obstacle to understanding and effective care. Historically, both psychiatric illness and substance dependence have been regarded with shame and secrecy. Only recently, with the release of the U.S. Surgeon General’s Report on Mental Health, has the media reported to a wide audience the prevalence of psychiatric disorders and the fact that treatment works. Substance abuse is in itself a judgmental term, just as are terms such as “behavioral” health and “mental” illness. Persons with chemical dependency are discriminated against in obtaining treatment for many reasons. Dual diagnosis gets a double dose of stigma.

Unfortunately, although the public is better educated about the causes, they continues to fear persons with psychiatric diagnoses. A Columbia University study released in 2000 revealed that a majority do not want to work with or be friends with a person who has a psychiatric illness. Alcohol use has been disapproved of in many cultures, and dependence on any substance, whether legal or not, continues to be seen by some as an inevitable consequence of using behaviors.

Even mental health consumer groups pay little or no attention to the issue of co-occurrence. At several recent conferences attended by myself or my colleagues, less than 1% of the programming and exhibits related to dual disorders, even though at least half of all mental health consumers also have a diagnosis of substance use or dependence.

Dual disorders are barely on the radar screen. Few in the general public can define the terms dual disorders, co-occurrence, or dual diagnosis, or differentiate between substance use and dependence. Dual disorders have lacked a strong advocacy push’until now.

Awareness is critical to problem solving. Our job as advocates is to get beyond the first step of public denial and move progressively towards our goals. Only those problems that loom large on the horizon are given the attention and resources that can lead to positive changes. We must be part of the solution by increasing awareness of the issues surrounding dual disorders and recommending actions resulting in outcomes desired by persons with dual disorders, their families, health care providers, and policy makers.

Effective advocacy depends upon having a strategy, a requirement to win any battle. A systematic approach aids in gauging successes, both large and small, and helps to assess what is learned in the process. Strategies should be flexible, adapting as new information reveals the necessity to change course.

Inclusion of all stakeholders in the advocacy process- building coalitions- is an essential part of the strategy for systems change. Joe Rogers, Executive Director of the National Mental Health Consumers’ Self-Help Clearinghouse, has been quoted, “Sometimes revolutions happen; but when they do, they are the result of people ardently working on specific issues.”

The strategy must include agreement among stakeholders on certain principles and/or methods that will lead to the desired outcome. The outcome of increased quality of life is generally agreed upon across constituency groups. The manner in which it is achieved is open for debate. How can we persuade others to our cause if we are fighting from within our own ranks? Divide and conquer is an old tool used by enemies; we must not fight ourselves into ineffective advocacy on behalf of a population that is vulnerable and in need of our assistance.

Our job is to make the public and policymakers aware of the impact to society, persons with dual disorders and their families resulting from the lack of a comprehensive care system for co-occurrence. Generally the American public is caring and sympathetic to the pain and struggles of others, as revealed by our country’s magnanimous response to the recent tragedies in our land. What does it take to elicit a bighearted response?

Acquired Immune Deficiency Syndrome (AIDS) is an illustration of an illness that was stigmatized and given little money towards research, treatment, and supports until enough people galvanized into action to make policymakers and the public aware of what was needed and why.

In the AIDS movement, when the plight of a young boy, Ryan White, was brought to the public’s attention by musician Elton John, people who ascribed AIDS as the judgment on certain life-style choices realized that even innocent little children could be affected. Suddenly condemnation was not as important as helping others. But, it took many people in concerted effort to bring the change to bear.

Grass roots movements can birth a new societal mind-set. Only when attitudes change can progress occur. First we must examine our own ways of thinking. Are our own views affected by stigma? Do we harbor suspicions of other stakeholders? Is turfism an obstacle to effective treatment? Are we willing to listen to and learn from each other, building coalitions to achieve our common purpose together? Attitudes are the first place to make changes in ourselves and in others.

Coalitions do not agree on every point, but when brought together to focus on a common issue the result is typically a consensus on certain issues and solutions that the group may decide to pursue. The expression of different views within coalitions can increase understanding of obstacles that have prevented positive changes in the past and enlighten the path of progress. We can all learn from each other if we keep an open mind and seek truth in all our endeavors. Attitudes among branches of advocacy must reach towards the same goal, rooted in a common purpose.

Understanding the issues and concerns of all stakeholders and policymakers leads to a balanced perspective that can guide negotiating possible solutions. Learning to compromise is an essential skill for all advocates. Compromise may be necessary to pave the way for future gains and the first steps of improvement.

Negotiating territory and finding a shared turf is the first step towards creating an internal attitude change that can tear down the walls that separate chemical dependency and mental health providers and advocates. One of the obstacles that has prevented positive changes within the co-occurrence arena is the turfism of the mental health and substance abuse camps. Each would own the issue, but the truth is that the issue is shared. Realistic solutions cannot be reached without each camp allowing the other to cross into their territory. While assimilation is not the ideal, collaboration between the two camps would allow greater cooperation and overlap.

If attitude is the first place to make changes, then acquiring advocacy skills is the second stage of effective advocacy. Advocacy skills can be innate or learned. The ability to articulate what others are unable to express for themselves is a primary skill of advocates. The capacity to conceptualize problems in ways that others can understand and embrace is also necessary. Advocates should be realistic and practical about crafting strategies and formulating solutions. . Find a mentor, an advocate you admire, to help you build and hone your own skills. Persistence is another attribute or skill of successful advocates.

“Self-care first” is an important tenet for all advocates, whether they are consumers themselves or not. Knowing the level of involvement you are willing and able to commit is important for yourself and others invested in the same effort. Set boundaries for yourself that protect your emotional health. Do not allow intrusions into the essential components of your life if that would be problematic. Advocacy is a privilege and a duty but should never be detrimental to the person who advocates.

Protecting your credibility is another important skill. Being reasonable, prepared, assertive, inclusive, and reliable to do what you have agreed to do are components of credibility. Once an advocate has lost his or her credibility, their effectiveness is compromised. Credibility can be regained, but in the interim period, patience, humility, and taking time to learn from others is necessary. Credibility leads to confidence and trust among stakeholders.

Knowledge is the third stage of advocacy. The Internet has opened the world to advocates. Information is at our fingertips. Doing your research is important in order to be prepared for the battles ahead. Participating on boards, committees, and councils is an excellent way to build skills and increase knowledge. All states are required to have mental health planning councils (with at least 50% consumer/family/advocate membership) to advise their government about how federal block grants are spent for community based support services. The councils frequently advise their mental health authority on policies and help monitor the adequacy and effectiveness of the service system.

In Tennessee, the Mental Health Planning Council has 65 voting members at the state level and numerous committees that focus on specific issues, such as housing, criminal justice, and dual disorders and recovery, among others. In addition, each of the seven mental health planning regions in the state has its own regional council whose chairs serve on the Executive Committee of the state Council. The regional councils also have committees. Thousands of citizens are represented in the interconnected process of the Tennessee Mental Health Planning Council. Many advocacy issues have been addressed through the coalition that is the planning council.

In Tennessee, over the past few years numerous groups became aware of the critical needs of persons with co-occurring’ disorders. State government provided education about co-occurrence to providers and the public. This effort raised awareness of the issue. Associations of providers, consumer groups, family networks, and government agencies realized the absence of a cohesive policy regarding dual disorders is causing tremendous strain within our state system and hurting people who are not being given the care they require to recover.

The Tennessee Mental Health Planning Council recognized the weight of the issue when co-occurrence was ranked as a top issue at each of its meetings in 2001. The council’s membership, the seven regional councils, and the Dual Disorders and Recovery subcommittee kept voicing the enormity of their concern.

The commissioners of the Department of Health and the Department of Mental Health and Developmental Disabilities were asked to form the task force jointly in response to recommendations by the Tennessee Mental Health Planning Council and its Dual Disorders and Recovery Committee. While the commissioners agreed that co-occurring disorders deserve immediate attention, they were unable to convene a task force due to state budget constraints. The Dual Disorders and Recovery Committee and other stakeholders agreed the task force must proceed despite the state’s inability to financially support the endeavor. As a member of the Council, Michael Cartwright, the Executive Director of Foundations Associates, proposed his agency to spearhead the task force under its program, the Dual Diagnosis Recovery Network.

The Task Force on Co-Occurring Disorders has also been endorsed by the Tennessee Mental Health Planning Council, the Tennessee Association of Mental Health Organizations (TAMHO) and the Tennessee Association of Alcohol and Drug Abuse Services (TAADAS). These and other agencies are expected to write positions papers to be included into the final task force report. Groups that have not worked closely before have a common focus now in the task force.

Over 175 actual task force participants and the memberships of agencies supporting the effort will represent thousands of Tennessee citizens who want action now to create effective changes within the system that provides care to consumers with dual disorders. While one person can make a difference, the committed involvement of many creates a climate of change that policymakers cannot ignore.

Our ability to influence policy is limited only by our willingness to advocate for what is necessary to achieve the task force’s mission:

‘to determine the barriers to essential treatment and supports needed for persons with co-occurring disorders and their families in Tennessee, regionally and statewide, and recommend and advocate for practical solutions that create systemic changes promoting the greatest possible recovery and quality of life for persons with co-occurring disorders, resulting in a positive impact on families and our state.

The operational plan for the task force includes focused monthly meetings with common agendas from late November 2001 through January 2002 to examine the issues regionally, statewide, and nationally. The task force will be divided into seven regional work groups with up to 30 members each, evenly distributed among the constituency groups of persons with a dual disorder; family members of service recipients; substance abuse treatment/support providers; mental health treatment/support providers; and advocates and/or government employees or officials.

The strategy of the task force has been established. Before and during meetings research materials and background information will be distributed. Agendas for each monthly meeting of the work groups will be identical across regions. Presentations and handouts will be consistent with regional variations. While a reporter records the minutes and attendance at each meeting, co-moderators will direct the work. Monthly reports generated by the director will be shared with the other regions. Homework will be assigned at each meeting in order to accomplish the task force’s objectives and goals within the four months of its existence. The co-moderators of each work group will meet monthly in person or by phone to coordinate efforts and modify agendas, as needed. The Dual Disorders and Recovery Committee will be updated monthly on the progress of the task force. At the January meeting of the work groups, the draft task force report will be refined. After review and editing, the final report will go to print in early February 2002.

The task force will present its report in February while the Tennessee legislature is in session. Included in the report will be a summary, statewide overview, regional reports, background information, position papers from constituency groups, membership and sponsor lists, and the task force’s recommendations. Legislation or rule changes to assist effective treatment of co-occurring disorders to promote recovery may be proposed. Supporters will gather at a rally on Legislative Plaza before the presentation to the legislature.

The task force report is not the end of the process but the beginning of a new way of co-occurrence stakeholders advocating together. The coalition created from the task force will probably remain committed to the cause. Out of the regional work groups, leaders will be identified to form ongoing regional committees to advocate for the recommendations in the report and others as they are developed.

Keep in mind that advocacy for dual disorders is an ongoing struggle. The task force in Tennessee is just one skirmish in a battle we can expect to take some time to win. We must have the resolve to persuade those who would oppose us to do the right thing for persons with dual disorders and their families. In the long run no one will lose; we will all be winners.

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