MINDS ON THE EDGE reveals problems with the delivery of mental health services in America, but there are encouraging reasons for optimism that these challenges can be met. Tremendous progress has been achieved on many fronts already, including the recent federal mental health parity legislation that requires health insurance plans to provide the same coverage for treatment of mental illness as for other diseases.
Millions of Americans are living with serious mental illnesses like schizophrenia and bipolar disorder, leading productive, satisfying and rich lives. Like cancer, heart disease, and diabetes, these mental illnesses have cycles of symptoms, remission, and relapse that make them chronic but often manageable conditions. Improving access to medication, a variety of therapeutic choices, and a network of support can enable people with mental illness to focus on sustaining their recovery.
For people who are most severely disabled with mental illness, there is also hope that more effective medications and therapies will be identified from research underway. Improved treatment practices as well as public policies that reduce social isolation, prevent homelessness, and avoid the incarceration of people with mental illness are essential to prevent the cruel burdens that currently compound the suffering of many people who are afflicted with mental illness.
More and more people with mental illness, who often use the term “consumer” to refer to themselves, are stepping forward to speak openly about their disability and confront the stigma that is rooted in ignorance about mental illness. Some are part of a vocal consumer movement that is working to ensure that their voices are heard regarding public policy decisions, medical treatment practices, and legal issues that affect their lives. An expression that they use to emphasize the critical importance of their involvement is “Nothing about us without us.”
Professionals in the mental health field, social services, legal system, and public policy are increasingly collaborating with each other, and with consumer advocates, to develop more coherent and integrated strategies to provide treatment and support. New programs and approaches are being implemented, evaluated, adjusted, and refined to develop models that can provide better care and support for people with mental illness in all parts of the country.
Peer Services offer the value of experience and embody the hope of recovery.
Many people with mental illnesses find invaluable support in connecting with others who have the same lived experience. From their peers, a person with schizophrenia, bipolar disorder or other mental illness can gain insight into their condition, guidance on how to seek treatment, strategies that can support their wellness, and a role model for recovery. For families who are coping with mental illness, the opportunity to gain support and information from experienced individuals can be both profoundly comforting and extremely helpful from a practical point of view.
Stigma is such a pervasive and significant factor that many individuals with mental illnesses and their families can become socially isolated as well as disconnected from mental health and support services. It is especially important for those facing the challenge of severe mental illness to become part of a community with members who have invested in learning about the illnesses along with sharing their experiences with symptoms, medication, alternative therapies, coping skills, and the significant impacts of mental illness on social relationships, education and employment.
"Peer services" is a general term that describes support services that are delivered by individuals who have mental illness and who have recovered to the point that they can use their personal experiences to help others with mental illness. Peer services take many forms. Peer counselors, can be paid employees in community mental health centers, drop-in centers, homeless shelters, jails and hospitals who provide information, support and role modeling. Peers can also offer services as volunteers through non-profit support and advocacy organizations like the National Alliance on Mental Health, Mental Health America, and the Depression and Bipolar Support Alliance. Individuals in recovery may also elect to receive formal training as family counselors, social workers, job coaches, case managers, and other healthcare professionals in order to serve their peers.
The goal of peer services is to empower and support people with mental illness to take charge of their own lives and approach their future with hope. A growing body of research suggests that peer services have benefits both for the recipient of the services and for the provider. Many individuals in recovery who provide services report that filling that role improves their self-esteem, adds meaning to their lives, and strengthens and sustains their own recovery.
The peer services approach has been used for many years in the field of addiction treatment - many addictions counselors are recovering from drug and alcohol addiction. Typically these are individuals who have successfully achieved long periods of sobriety. However, unlike peer addiction counselors who generally earn certifications (such as the CASAC certification - Certified Alcohol and Substance Abuse Counselor), no clear certification process has as of yet emerged within the mental health field to determine what qualifies a peer to become a peer counselor. While the role of peer counselors as well as training and certification processes will continue to develop in the years ahead, self-help services are now emerging as evidence-based practices. For example, the Substance Abuse & Mental Health Services Administration (SAMHSA) has already developed an "Illness Management and Recovery" model that incorporates recommended components for a peer counseling program.
The Center for Mental Health Services of SAMHSA has a Consumer Affairs Program that plays a lead role in developing and implementing consumer information activities, supporting consumer-operated networks and coordinating CMHS anti-stigma efforts.
National Alliance on Mental Illness (NAMI) can connect you to peer to peer programs across the country for people with mental illnesses and for families and caregivers. NAMI also offers training programs for consumers and family members who want to provide education and support to their peers.
Mental Health America can help you to find support groups and peer to peer programs offered through many organizations, including organizations with a particular focus on particular illness, issue, or age group.
Depression and Bipolar Support Alliance offers many ways for consumers to get involved to help others
The National Mental Health Consumer’s Self-Help Clearinghouse has an online Directory of Consumer Driven Services
ASSERTIVE COMMUNITY TREATMENT TEAMS (ACT)
ACT teams reach out to provide help with problems no matter how big or how small to help people with serious mental illness live successfully in the community.
ACT is an intensive, community-based mental health program model founded in the 1970s. According to the Assertive Community Treatment Association, the ACT model is designed to provide comprehensive, psychiatric treatment, case management, employment and housing assistance, family support and education, substance abuse services, and other services and supports that are critical to an individual’s ability to live successfully in the community. ACT is intended for people who have frequent episodes of very severe symptoms that are difficult to manage of never go away. For these individuals, taking care of the basic needs of daily life can be a challenge.
An ACT team includes professionals with training in social work, rehabilitation, counseling, nursing and psychiatry. They work in an integrated way to provide services where their clients live, help them to achieve the goals they set, and meet a continuum of needs. Sam Tsemberis, founder of Pathways to Housing, uses the ACT approach in conjunction with his Housing First strategy to help people with mental illnesses who are homeless.
What does ACT look like in action? At Pathways to Housing, each ACT team is assigned approximately 70 clients. Every client has at least six contacts with the team in each month, and these contacts are closely tracked to ensure that no client is falling through the cracks. The team gathers each weekday morning to efficiently run through the status of each of their clients. They caucus to discuss the client’s state of mind. Are there any housing conflicts with other tenants or their landlord? Does the apartment need repairs or utilities? Is the client managing his or her finances effectively to get through the month? How is the client doing with medication? Is a prescription refill needed? Does the client need transportation to a doctor’s appointment? Are they socializing? Have they applied for a job? Do they need assistance with a resume or clothes for an interview? Once the team has assessed the situation, they assign appropriate tasks to team members for follow up with each client. The next step might be seeking the client out for a cup of coffee as an opportunity for an informal assessment, providing an intervention with a landlord, helping to secure public assistance benefits, or supporting a client trying to reconnect with a family member.
Research has proven that ACT support substantially reduces psychiatric hospital use and increases housing stability. It has been demonstrated to improve symptoms and the subjective assessment of quality of life. Although the ACT model has been widely replicated, it is not available in many communities.
ResourcesAssertive Community Treatment Association promotes, develops, and supports high quality Assertive Community Treatment (ACT) services that improve the lives of people diagnosed with serious and persistent mental illness.
The National Association of State Mental Health Program Directors has links to all state mental health agencies. Contact them to inquire if your community has Assertive Community Treatment services.
The SAMHSA Center for Mental Health Services has developed an Assertive Community Treatment Evidence-Based Practice Toolkit.
Supported Housing provides the security of a home and a web of support.
The symptoms of mental illness can derail a person’s life on many levels – interrupting their education, affecting their ability to maintain employment, and disrupting their social and family relationships. These factors can have a significant impact on the ability of people with serious mental illnesses to find and maintain housing. Substance abuse and alcoholism, which can be co-occurring disorders with mental illnesses, also lead to housing loss. Finally, stigma and discrimination often restrict consumer access to housing since landlords and public housing management can be reluctant to accept people with serious mental illnesses as tenants.
The consequence of all these issues has been a widespread problem of homelessness for people with mental illness, particularly since rapid deinstitutionalization in the 70s and 80s required the availability of alternative housing and that need was not effectively met. Today an estimated 16% of all homeless people in America suffer from mental illness. Chronically homeless, many of these people cycle through living on the streets, staying in an emergency shelter, being committed to a hospital, or being housed in prison if they are arrested for any kind of crime like public urination, theft, or drug possession.
A new concept called supported housing focuses on consumers having a permanent home that is integrated socially, is self-chosen, and encourages empowerment and skills development. The services and supports offered are individualized, flexible, and responsive to changing consumer needs. Thus, instead of fitting a person into a housing program “slot,” consumers choose their housing, where they receive support services. The level of support is expected to fluctuate over time. With residents living in conventional housing, some of the stigma attached to group homes and residential treatment programs is avoided.
Psychologist Sam Tsemberis, the founder of Pathways to Housing, has been a leading proponent of this approach. Fifteen years ago he said, "Housing is the cure for homelessness. It's that simple." In the years since, Pathways to Housing has proven to be an effective model for providing treatment and support for people with mental illness. The financial savings for society are very significant:
But the impact for the people with mental illness is even more significant. Stabilized by the opportunity to live in an apartment they can call home, Pathway clients are supported by an ACT (assertive community treatment) team of professionals that includes social workers, peer counselors, a housing specialist and doctors. The team regularly reaches out to each client in the Pathways to Housing program to monitor their health, encourage their treatment choices, and include them in a community of recovery. By providing this kind of comprehensive support, the Pathways team helps their clients to move towards their goals, develop their strengths, and gain confidence in their ability to manage their own lives.
Pathways to Housing has emerged as a national model and is being replicated in cities across the country.
The Corporation for Supportive Housing is a national nonprofit organization and community development financial institution that helps communities to create permanent housing with services to prevent and end homelessness.
National Alliance to End Homelessness has information on a broad spectrum of strategies to provide housing.
Police officers who are specially trained to approach a person in a mental illness crisis
Police are often the first responders for individuals who are experiencing a mental illness crisis, and it can be a difficult and dangerous situation for both the officer and the person in crisis.
In 1988, the Memphis Police Department developed a new practice called a Crisis Intervention Team to give their officers the understanding and the skills to manage these encounters more successfully and work towards a more positive outcome for all involved. The CIT program works in partnership with consumers, families and professionals who comprise the mental health community.
The Memphis Police Department offers a 40-hour training program on site in communities around the country to enable them to replicate the Memphis CIT model. The trainings are planned in partnership with local mental health providers. Through classroom lectures the officers learn about mental illness and are trained to recognize the symptoms of distress. The officers also make site visits to community resources that support the mentally ill and engage in dialogues with consumers and family members to gain critical perspective. The training concludes with several hours of role plays in which mental health professionals play the role of consumers in crisis and the CIT officers-in-training practice de-escalation skills.
With the benefit of greater understanding, new skills, and first hand relationships with the mental health community, CIT officers are prepared to manage crisis situations more effectively and link consumers to available resources for community-based care. Research has proven that CIT training reduces arrests, the use of restraint, citizen and police officer injuries, and hospitalization.
Training in the Memphis CIT model is offered by the Memphis Police Department.
The University of Memphis CIT Center has extensive information on the CIT model and communities around the country that have implemented this program.
The Dutiful Mind: Police Training in Dealing with the Mentally Ill by Lt. Michael Woody, Ret. Akron, OH Police Department offers a first hand account of the training process and value of CIT.
The Council of State Governments Justice Center Criminal Justice and Mental Health Consensus Project produces many valuable publications. Available to download or order through its website are:
The Justice Center also maintains an interactive online database of specialized policing responses to people with mental illness where you can find examples of hundreds of programs across the country, including CIT and other strategies.
Mental Health Courts provide an alternative to routine conviction and sentencing procedures
People with mental illnesses are frequently arrested for low-level offenses that relate to the person’s experience of her symptoms. A person who is arrested for law-breaking conduct related to mental illness is likely to serve jail time, receive no treatment during incarceration or stop treatment upon release, and then reoffend. To stop this revolving door, and to match people in need with mental health treatment, some jurisdictions have started to experiment with mental health courts.
A mental health court is a specialized court docket for certain defendants with mental illnesses that substitute a problem-solving model for traditional court processing. Unlike traditional courts, which focus narrowly on whether the defendant intended to, and actually did, commit the unlawful act a mental health court looks more broadly into the role that mental illness played in causing the person’s law-breaking conduct. Participants are identified through mental health screening and assessments and voluntarily participate in a judicially supervised treatment plan developed jointly by a team of court staff and mental health professionals.
Mental health courts promise important benefits for people with mental illnesses, criminal justice institutions and personnel, and taxpayers. For the mentally ill, diversion to a mental health court may offer an avenue to treatment and a structured system that helps support treatment and recovery. For the criminal justice system, mental health courts allow traditional courts and corrections officers to focus on more serious criminal activity without the difficulty and burden of processing a large number of mentally ill people. For taxpayers, the expected payoffs are financial: The supportive services that a mental health court can order cost much less than incarceration.
There is tremendous variety in the way different communities are implementing mental health courts, and a growing body of knowledge is emerging to support best practices that can offer positive outcomes for individuals with mental illness. The Council of State Governments Justice Center recently released research that suggests mental health courts lead to lower rates of recidivism for people with mental illness and have the potential to save money over time.
Mental health courts as a solution, however, do involve trade-offs and raise some concerns about the duration of a “sentence” that may result from the court’s decision. When a person is sentenced to a term of incarceration by a traditional court, he or she generally will serve the time and then be subject to a limited period of supervision following release. A person subject to a mental health court order, however, may be under the supervision of the state for a much longer duration. Further, while the supervision is in the nature of treatment, the person may not want treatment – or may have reasons to refuse the kind of treatment the state is requiring because of the treatment’s side effects or other factors.
While mental health courts can be a valuable strategy to interrupt the incarceration of people with mental illness, they are an intervention that does not come into play until the criminal justice system in already engaged. Ideally mental health courts might be part of a more coordinated and effective effort to supply services to those in need before they are severely disordered.
The Council of State Governments Justice Center has recently published Mental Health Courts: A Guide to Research-Informed Policy and Practice. This report and other related materials including Essential Elements of a Mental Health Court can be downloaded at the Justice Center Consensus Project website
Can making decisions in advance empower consumers and support their treatment choices?
According to the National Resource Center on Advanced Psychiatric Directives, "Psychiatric advance directives are relatively new legal instruments that may be used to document a competent person’s specific instructions or preferences regarding future mental health treatment. Psychiatric advance directives can be used to plan for the possibility that someone may lose capacity to give or withhold informed consent to treatment during acute episodes of psychiatric illness."
People with serious mental illnesses can have strong opinions about medication and psychiatric treatment. Many consumers have had negative experiences with particular medications and suffered from bad side effects. They want to exercise control over what medications they are given. It is also a common problem that people with mental illness who have a positive experience with the pharmaceuticals they are taking – and feel better for a time – eventually grow ambivalent about the need for the continued treatment and discontinue taking the medication.
In the absence of treatment, as mental health deteriorates, the consumer may no longer recognize the value that the medication had provided and resist further treatment. This can lead to tragic consequences and tremendous conflicts between the person with a mental illness and caring family members or others who are saddened by the deterioration in their loved one’s mental state.
In recent years, the idea of “advanced directives,” originated for "end of life decisions," have been recognized as potentially helpful in empowering individuals suffering from mental illnesses to communicate treatment preferences in advance of periods of incapacity. These psychiatric advanced directives can be structured in various ways. “Instructive directives” provide specific information on the kinds of treatment that the declarant would want should they lose the capacity to make these decisions on their own. An alternative approach identifies a trusted individual to become a “health proxy” and make decisions regarding care and treatment should the declarant lose capacity. Frequently, these two structures can be combined so that the health proxy has pre-specified guidance regarding the declarant’s wishes.
Advanced directives are a new concept and they raise many challenging legal issues. Advocates of advanced directives cite several positive values of these legal instruments. They empower the consumer to exercise control over treatment decisions and provide a clear plan that can enhance communication, engage approved treatment before serious decompensation, and avoid adversarial court proceedings over involuntary treatment.
However, there are also consumers, mental health professionals and legal experts who have raised concerns about psychiatric advanced directives and their implementation. One question revolves around the issue of “legal capacity” both at the time the directive is composed as well as in judging the point at which the directive should supersede the expressed wishes of the declarant. Another controversial issue is whether an advanced directive can be used to refuse all psychiatric treatment. What should the provisions be if someone wants to revoke an advanced directive?
State laws governing advance directives vary widely and many unresolved legal issues will be addressed as the design and use of advance directives develop over the years ahead.
National Resources Center on Psychiatric Advance Directives provides information for consumers, medical professionals and family members and friends. It also provides state by state information on law governing the use of advance directives.
The Bazelon Center for Mental Health Law provides templates for creating a psychiatric advance directive.
Ronald S. Honberg, National Director for Policy and Legal Affairs for NAMI provides insight into issues surrounding advanced directives in this essay.