Part III: How to Advocate for Improvements in Mental Health Care – A Call to Action
By John F. Baggett Ph.D.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead
In 1980 the thirteen-year-old daughter of Candace Lightner was killed in a hit-and-run car accident by a drunk driver with a history of similar offenses. Lightner soon transformed her grief and anger into a passion for change. She founded MADD (Mothers Against Drunk Driving), an organization made up mostly of individuals with similar stories of loss. MADD soon spread to every state. It is credited by researchers as having reduced drunk driving in the nation by more than fifty percent.
One person can make a difference, but, as Candace Lightner’s example, and the above quote from Margaret Mead, reminds us, a group of thoughtful, committed individuals can change the world. In other words, the best way to bring about change is for a group of individuals to join together to do so.
In Part I of this series I described the current sad state of affairs in mental health care. In Part II, I discussed the historical reasons for our national failure to provide quality effective care. These articles were intended to set the stage for this Part III, which is devoted to suggestions on how to advocate for improvements – in other words, how a group of thoughtful committed citizens can change the world with regard to mental health care.
Step 1: Articulate the Vision
Psalm 29:18 declares, “Where there is no vision, the people perish.” I take this to mean when people are in danger (as people with mental illnesses housed in prisons and living on the streets are today), things need to change. Meaningful change begins with a clear articulated vision. When Martin Luther King Jr. delivered his “I Have a Dream” speech, the vision he so poetically described was not new. It had been articulated many times by lesser known persons who had been working for years on the front lines of the civil rights movement.
The vision of Mental Health Care for the future should include, but not be limited to an end to the criminalization of mental illness and to mentally ill homelessness through:
- Reducing stigma
- More effective treatment of mental illnesses through research based medical advances
- Consumer friendly access to both inpatient and community based services
- Mental health parity in insurance coverage
- Quality treatment and care for mentally ill persons who are unable to pay
- Mental health courts that divert mentally ill persons to treatment instead of prisons
- Public accountability of service providers for quality care and effective outcomes
Step 2: Dare to Share
Effective mental health advocates are usually persons who have stories to tell about their personal struggles with psychiatric illnesses. They may also be family members, friends, or sympathetic care givers who have experienced the challenges of a flawed mental health system. The personal narratives that arise out of these struggles are the most powerful weapons mental health advocates have in their fight to improve care. Unfortunately, the stigma of mental illness is often internalized by those most affected. People may be reluctant to share because of shame and fear. Yet, when fear is overcome by a desire to help others, and by a boldness and willingness to narrate experiences, not only do the personal stories create much needed awareness, they also bring a new level of healing to those who dare to share.
Because personal sharing is critical to effective advocacy, it is important to know how to take advantage of the many opportunities available to do so, such as:
- Television interviews and feature stories in newspapers and television. These media are often happy to be contacted by persons with interesting stories to tell. Because public media influence public opinion, exposing inadequacies in care through interviews and articles has the advantage of putting immediate pressure on service agencies to improve.
- Social media. Telling one’s story on social media, even in bits and pieces, is a highly effective way to generate awareness while also building a network of support and a grass-roots movement for change (See Step 3 below)
- Speaking engagements. Local civic clubs are often looking for speakers. Their members are usually made up of influential local citizens who are in positions to influence public policy. Speaking to church groups can reduce stigma and misunderstandings of mental illness often perpetuated within faith communities. Advocates should also not forget to seek opportunities to present to professional and provider groups (such as the local chapters of the American Psychiatric Association, The American Psychological Association, or the National Association of Social Workers).
Step 3: Organize
As the success of MADD illustrates, the most effective way to bring about change is through a grass roots organization made up of individuals personally touched by an issue. They share a common vision and are willing to make sacrifices by devoting time, talents, energy, and resources to achieve it. Because public policy with regard to mental health care is established at all levels of government, effective organization should take into account the need to influence policy and practice at all levels – county, state, and federal. A tried and true way to begin is by creating or joining with an existing state organization with local county affiliates, and to work to extend the network of affiliates to all counties while encouraging similar efforts in neighboring states.
Step 4: Build Coalitions
Once organized, building coalitions with other organizations around shared goals can greatly extend the sphere of influence. When a goal, or strategic objective, is adopted, it is important to identify other organizations and groups who share the same goal or would benefit from its achievement. Of course, coalitions can be risky, as self-interests of the various groups do not always coincide .That is why coalition agendas must be carefully negotiated through a thoughtful process of consensus to insure all groups can support them. Reaching such consensus is not always easy, but when advocacy goals are shared by a broad coalition the likelihood of success in achieving them is greatly improved. When county commissioners, legislators, and congressmen are faced with a broad coalition of mental health consumer advocates, professionals, and providers, they are much more motivated to support policy changes than when approached by only one of the participating organizations.
Step 5: Act
As important as organization and preparation are, they are meaningless without action. The kind of action that will be effective usually depends on the nature of the strategic objectives, and on who it is that has the power to bring about change.
- Lobby public officials and legislators – Changes in public policy usually happen when they are in the self-interest of elected officials to achieve them. Effective lobbying of constituents through letters, emails, and office visits make a difference to those who wish to continue in office. But it is important to remember that when an advocate is talking, elected officials are anxious to know how many constituents the advocate represents.
- Hold rallies – The intent of a rally is to show mass support for a specific change. If it is to be effective it needs to be planned in such a way as to assure a large turnout and media coverage. Having a well-known public charismatic speaker, such as a celebrity whose life has been touched by mental illness, improves the likelihood of success.
- Call press conferences – Press Conferences are most useful when exposing some flagrant example of injustice in the care of mentally ill persons, or in announcing some new and possibly controversial plan for change.
- Conduct peaceful demonstrations—Marches with picket signs seldom fail to get media attention and consequently the attention of policy makers. Experienced advocates are careful not to overuse this strategy. They know the purpose must be clear and specific and the event must ensure the safety of everyone participating.
- Serve on governing boards. Effective advocacy is not just about the protests of a group of outsiders. It is also about finding ways to influence policies from within service organizations. Many state and county mental health agencies are governed by citizen boards. Effective advocates find out how these positions are filled, and work to fill the vacancies with people who share their vision and mission.
When we survey the extent of the crisis in mental health today, and when we examine the historical forces that led us to this tragic condition, it is easy to be overwhelmed. It is tempting to despair, or to choose to live in the fantasy that some superhero will one day bring about change. But mentally ill people are dying in the streets and suffering brutalities in the prisons of our nation every day. Waiting is not an option. Now is the time to speak out, to organize, to join with others, and to act.
ADDENDUM: ACTION NEEDED NOW
In December of 2016, the Congress of the United States passed a bill titled: Helping Families in Mental Health Crisis Act. This bill was primarily aimed at funding successful criminal justice programs, such as Crisis Intervention Team training for law enforcement, mental health courts, and jail re-entry programs. Its passage is the result of strong advocacy by the National Alliance on Mental Illness (NAMI) and a broad coalition of other advocates and mental health professionals and providers. If it does not become a victim of the new administration’s health care budget cuts, this congressional action should begin to help alleviate the problems in the mental healthcare discussed in this three part series.
Other legislation still being considered by the congress titled: The Excellence in Mental Health Care Act ((S. 2525/H.R. 4567 in the 2016 session) would address the current crisis by increasing access to community mental health and substance use treatment services through improving Medicaid reimbursement for these services. While it is initially a bill providing demonstration grants to a limited number of states, when fully implemented, the Excellence Act would infuse over $1 billion into the current mental health service system, making available much needed community based services to persons with mental illnesses. This legislation is strongly supported by community providers of mental health services, along with a variety of advocacy organizations, because it ensures reimbursement for, and, therefore, availability of, the types of services needed to divert mentally ill persons from homelessness and from the criminal justice system. For example, this bill will expand vitally-needed access to mental health training to every police department in a given state, and foster partnerships between criminal justice and health provider agencies.
Mental Health funding and service expansion, however, could become victim to the new congress and administration because health care funding is likely to be on the chopping block. The winter of 2017 would be a good time for advocates to email, write, call, or visit with their respective congressional representatives and senators in order to emphasize the fact that cuts in funding for mental health services will have disastrous and life threatening results, and that more funding is needed for mental health services, not less. The current leadership in Washington, and in the State Legislatures, also needs advocates to help them understand the high financial and human costs of the current lack of services and the current pattern of incarceration of mentally ill persons.
John F. Baggett Ph.D. is a retired pastor and mental health advocate, and a former State Mental Health Director in North Carolina, and author of Finding the Good in Grief: Rediscover Joy After a Life-Changing Loss (Kregel 2013).