Involuntary Commitment and Recovery:
An Innovative Mental Health Peer Support Program
Mary Ellen Copeland
1556 East West Rd.
Dummerston, VT 05301
Union Institute & University, Learner #536222
January, 2006
Table of Contents
Contextual Essay ....... i
Chapter I Introduction ....... 1
Justification ........... 2
Moving Ahead Project ........... 3
Community Links ........... 4
Critical Social Theory ........... 5
Chapter II Literature Review ....... 7
Involuntary Commitment ........... 7
Values and Ethics of Mental Health Recovery and Peer Support ........... 11
Defining Recovery ........... 12
Research on Recovery ........... 15
Peer Support ........... 19
Relevant History of the Vermont State Hospital ........... 21
Programs ........... 28
Conclusion ........... 37
Chapter III The Moving Ahead Study ....... 38
Methodology ........... 40
Institutional Review Board process ........... 42
Project Administration ........... 44
Publicity Campaign ........... 44
Advisory Boards ........... 46
Informational Meetings/Focus Groups ........... 48
Recruitment of Respondents ........... 50
Interviews ........... 55
Semistructured Interview Guide ........... 56
Interviews with Other Stakeholders ........... 60
Conclusion ........... 61
Chapter IV Data Analysis ....... 62
Initial Review ........... 62
Involuntary Commitment Experience ........... 64
Challenges ........... 67
Losses and Traumas ........... 68
Views on Diagnosis ........... 70
Hopes and Dreams ........... 70
Interests and Strengths ........... 71
Self-Perception ........... 72
Relationships ........... 72
What Helps and What Does Not ........... 73
Medications ........... 74
Peer Support and Recovery Education ........... 75
Vermont State Hospital Experience ........... 77
Recommendations ........... 80
Vermont State Department of Mental Health Questions and Responses ........... 80
Core Elements of Pilot Project Design ........... 86
Chapter V Pilot Project and Manual Development ....... 88
Development of Pilot Project Design ........... 88
Core Elements of Pilot Project Design ........... 88
Training ........... 94
Training Evaluation ........... 95
Program Implementation ........... 97
Evaluation ........... 100
Chapter VI The Future of Community Links ....... 102
Further Recommendations Based on Study Findings ........... 104
References ....... 110
Appendix A Statutes Pertaining to Involuntary Commitment from ....... 118
Appendix B Informed Consent Form ....... 129
Appendix C Moving Ahead Press Release ....... 131
Appendix D Moving Ahead Poster ....... 132
This essay describes the context in which the Community Links program and the Community Links: Pathways to Reconnection and Recovery Program Implementation Manual were developed. It includes:
1. A literature review of the issues of involuntary commitment, mental health recovery, and peer support, including the established values and ethics of these initiatives; a historical perspective of past and current recovery efforts in Vermont; and related mental health programs.
4. A description of the data analysis process, an overview of the findings, and the process of using the data as the basis for developing the Community Links program.
5. The design, implementation, and evaluation of the Community Links program.
Community Links: Pathways to Reconnection and Recovery is a program designed to facilitate the recovery, independence, interdependence, and community integration of people who have had repeated court-ordered involuntary inpatient and outpatient mental health commitments. Typically people who have these court orders have a long history, often since childhood or adolescence, of dealing with a psychiatric illness that may involve distressing symptoms like hearing voices, anxiety, deep depression, bizarre behavior, repeated and long term institutionalization, on-going experiences of trauma and poverty, and ostracism from the community. In the past, when these people received court orders, the orders dictated that they be institutionalized for long periods of time, often the rest of their lives, in facilities where they received minimal treatment and support. Current court orders can still force institutionalization, or they can define conditions that would allow a person with an involuntary commitment order to continue to live in the community. Further specific information on involuntary commitment statutes is included in Chapter II of this document.
According to Vermont State Department of Mental Health officials, there are about 200 people in Vermont who have these orders at any given time, 150 of them on outpatient commitment orders (meaning they can live in the community if they adhere to specific provisions or restrictions) and 50 who are patients at the Vermont State Hospital in Waterbury, Vermont. The Vermont State Department of Mental Health is seeking to reduce the number of people who have involuntary commitment orders. They funded principal investigator Mary Ellen Copeland, the author of this document, and coresearcher Shery Mead to conduct a study to:
1. Find out what kinds of mental health recovery-oriented and peer-support initiatives might be most helpful to people who have outpatient and inpatient involuntary commitment orders,
2. Design and implement a pilot program based on the findings of the study, and
3. Develop a manual that would allow for state and national program replication. (Copeland & Mead, 2003; State of Vermont, 2001).
In the past decade, recovery-oriented and peer-support strategies have become much more common in the mental health field (Ralph & Corrigan, 2005). Prior to that time, people who had severe psychiatric symptoms were generally thought to be incurable (Ralph & Corrigan, 2005). The only treatment options that might help to relieve symptoms were medications and electroshock therapy, along with maintenance and support services. Now, with impetus from a strong national mental health recovery movement, it is recognized that people can and do recover, that there are things they can do to help themselves feel better, that they can learn about these things and use them in their own lives, and that they often benefit from positive contact with others who have similar life issues (Ralph & Corrigan, 2005). Vermont wanted to develop a program to use this new focus to facilitate the recovery of those people who are often most difficult to reach—people who have orders of involuntary inpatient or outpatient commitment.
The initial study, known as the Moving Ahead Project, included: interviews with 28 volunteers who now have or have had these orders; meetings with others who either have these orders or who have an interest in this issue, like program administrators, care providers, and court personnel; examination of other programs across the country that have been designed to address this issue or similar issues; and a review of related literature. The findings indicated that people who have involuntary commitment orders want to recover, want to have connections outside of the mental health system, and want to be integrated back into their communities, and that there are aspects of other programs including a historic Vermont program (Chittick, Brooks, Irons, & Deane, 1961) that might be useful in planning and implementing a Vermont initiative (Copeland & Mead, 2004).
Based on these findings, the coresearchers developed and implemented a three-day training called the Community Links training; the two-month pilot project, Community Links; and the Community Links: Pathways to Reconnection and Recovery Program Implementation Manual (Copeland, 2005). Ten people from the community were trained in various aspects of developing mutually supportive relationships, assisting others in making connections, and personal resource development. Following the training, each person who took the Community Links training was matched with a person having an involuntary commitment order who had requested a “Link”. Then, in a series of mutually designed meetings and activities over a two-month period, the Community Link and the person who had asked to be in the program worked together to learn recovery skills and strategies, explore community resources, and connect with others. At the end of the pilot program, the researchers evaluated the effectiveness of the program based on feedback from both the people who took the Community Links training and the participants and revised the training manual based on the findings of this evaluation.
The writer, Mary Ellen Copeland, developed the manual Community Links: Pathways to Reconnection and Recovery Program Implementation Manual based on the findings of the study and the evaluation of the pilot program. This manual describes how to implement every aspect of the Community Links program. As a result of this program it is expected that more people will have their orders rescinded, be able to manage their lives without an order, have more friends and connections in the community, and be able to work toward their own goals and dreams.
While working closely with Shery Mead on this project, the writer took full responsibility for development of the Community Links: Pathways to Reconnection and Recovery Program Implementation Manual including organizing and composing the manual, and writing the Contextual Essay.
Both the Moving Ahead and Community Links Projects are based on the concept of Critical Social Theory:
Critical Social Theory is an attempt to understand, analyze, criticize and alter social, economic, cultural, technological, and psychological structures and phenomena that have features of oppression, domination, exploitation, injustice and misery. They do this with a view to changing or eliminating these structures and phenomena and expanding the scope of freedom, justice and happiness. The assumption is that this knowledge will be used in processes of social change by people to whom understanding their situation is crucial to changing it. (Bentz & Shapiro, 1998, p. 146)
People who “act differently” or have been diagnosed with a mental illness have been stigmatized for generations. They have often been the victims of violent attacks. Because they cannot advocate for their own needs, the resources expended to address this situation have been minimal. The Community Links project has the potential for beginning to provide assistance and support to people in these circumstances. The eventual goal will be to have people become integrated back into the community as fully participating members of that community.
Recovery-focused work like this project is effectively changing mental health service provision for people who have the most serious mental health issues from an antiquated system focused on force, coercion, institutionalization, and maintenance to an innovative and life-enhancing system focused on recovery and life transformation. People who have been struggling with mental health difficulties often accompanied by poverty and ostracism from the mainstream are finding new hope. They are learning that they can recover. They are using recovery-oriented self-help skills and strategies to manage and relieve pervasive symptoms. They are taking back responsibility for their own lives and are working toward meeting their own goals and dreams (Copeland, 2005).
The State of Vermont is integrating the Community Links Program into their statewide mental health program. Now, even before they leave the state hospital, people will be supported by a well-trained person from the community who will work with them as they leave the hospital, sometimes after years of confinement, and reenter their community.
This literature review provided essential data and helped set the context for the Moving Ahead Project and eventually the Community Links pilot project that resulted from it. It includes discussion of involuntary commitment, the values and ethics of mental health recovery and peer support, mental health recovery, peer support in mental health, pertinent historical information regarding Vermont interventions related to individuals who were involuntarily committed, programs that have been used elsewhere to address the needs of people with orders of involuntary commitment, and the social relevance of this project.
The Moving Ahead Project (Copeland & Mead, 2004) was an attempt by Vermont State Department of Mental Health officials to reduce the number of people who have orders of involuntary commitment by supporting the development of initiatives that use recovery-oriented education and peer support initiatives to promote wellness and recovery. Their interest is to have fewer and fewer people who need these orders. The Vermont statutes that pertain to involuntary commitment are in Appendix A of this document.
The justification for both involuntary inpatient and outpatient commitment, as stated in the Vermont State Statutes (Legislative Council of the General Assembly for the State of Vermont), is the prevention of harm to self and others:
7611 “A person in need of treatment” means a person who is suffering from mental illness and, as a result of that mental illness, his capacity to exercise self-control, judgment or discretion in the conduct of his affairs and social relations is so lessened that he poses a danger of harm to himself or others;
(A) A danger of harm to others may be shown by establishing that:
(i) he has inflicted or attempted to inflict bodily harm on another; or
(ii) by his threats or actions he has placed others in reasonable fear of physical harm to themselves; or
(iii) by his actions or inactions he has presented a danger to persons in his care.
(B) A danger of harm to himself may be shown by establishing that:
(i) he has threatened or attempted suicide or serious bodily harm; or
(ii) he has behaved in such a manner as to indicate that he is unable, without supervision and the assistance of others, to satisfy his need for nourishment, personal or medical care, shelter, or self-protection and safety, so that it is probable that death, substantial physical bodily injury, serious mental deterioration or serious physical debilitation or disease will ensue unless adequate treatment is afforded. (Legislative Council of the General Assembly for the State of Vermont, 2003)
In addition to reading the statutes, interviews with lawyers and other officials helped to clarify the involuntary commitment process. According to these accounts, involuntary commitment orders are orders given to people whom the court declares a danger to self or others. These orders mandate loss of independence, restrict a person’s activities, freedom, and choice, and may include adherence to a particular treatment regime such as medications, the use of case management services, and hospitalization or institutionalization (involuntary inpatient commitment). If the person is in an institution, the order will restrict their freedom when they are released, and allow for their expeditious return to the institution if provisions of the order are not followed. If a person has an involuntary outpatient commitment, they will live in the community while adhering to the specifications of the order. In most cases, people who receive these orders have been diagnosed with a severe and chronic mental illness. These orders are seen as a way to keep both the community and the person who has the order safe, and, in the case of outpatient commitment, to prevent hospitalization, although this is not specified in the statutes.
Discussions with various mental health officials and care providers showed that people who get these orders have either been arrested and held under observation or taken into custody at the request of family members, supporters, mental health professionals, or community members. They are ordered to appear in court, or are taken to court. The statutes do not specify who develops the order. The researchers found that officials of the court, who usually have not met the person receiving the order and are not expected to meet that person, develop the specifications of the order. The order is then given to the person or sent to the person by mail. It might be assumed that the order would be developed to support the recovery of the person receiving the order, but the researchers found that this was rarely the case. More often it was a document based on a template developed over time that had no personal relevance to the person receiving the order. Most people involved in the implementation of these orders, including people who have or have had these orders, reported that they are not strictly enforced. This lack of enforcement makes the order confusing and stressful, sometimes exacerbating their symptoms. People who have these orders are often on them for long periods of time, or are on and off orders repeatedly over the years.
Through the statutes (Appendix, Section A), Vermont legislators have attempted to protect people who might receive orders of involuntary commitment. However, when they developed or when they revised these statutes, they were under tremendous pressure from people with various perspectives, including those who believe that these orders are unconstitutional and should never be allowed, and that if people are breaking the law they should be treated as criminals; others support these laws and believe they should be more stringent. Therefore the law is a compromise, trying to satisfy as many constituents as possible (Copeland, 1998).
Section 7613 of the statutes says, “The notice of hearing shall set forth the date and time of the hearing and shall contain a list of the proposed patient’s rights at the hearing” (Legislative Council of the General Assembly for the State of Vermont, 2003).
The rights mentioned in this section were of particular interest to the researchers. Repeated attempts to obtain that list of rights were futile. Apparently that part of the statute is overlooked.
As with any statutes there are difficulties with interpretation. Interpretation varies from court to court and from person to person. Little consistency could be found in the application of these statutes, making an already difficult situation even more confusing for the person receiving the order and for family members and care providers. In addition, several mental health constituency groups argue that the statutes are not sufficient and need to be more specific to adequately meet both the needs of people who might receive such an order and the community that these orders are designed to protect.
Although it is hoped that the conditions of the order might contribute to a person’s recovery, there is nothing in the statutes that addresses this issue or that suggests the order might include recovery-oriented activities.
Study of the effectiveness of these orders in protecting people in the community and addressing contentious human rights issues around these orders is outside the scope of this project.
The State of Vermont, in accepting Mary Ellen Copeland and Shery Mead as the researchers in this study, knew that Copeland and Mead have collaborated for many years, have interviewed many people who experience mental health difficulties including those who have had involuntary commitments, and have developed, tested, and published a listing of values and ethics that informs all of their work and would inform every aspect of this project. These values and ethics are:
1. There is hope. A commonly held belief has been that people who experience certain kinds of “symptoms” can never get well, and will probably worsen over time. However, it is now known that people can and do get well and go on to do the things they want to do with their lives (Copeland, 1991; Ralph & Corrigan, 2005).
2. Self-determination, personal responsibility, empowerment, and self-advocacy are vital to recovery (Copeland, 1991).
3. Treating each other as equals with dignity, compassion, mutual respect, and unconditional high regard is essential.
4. We must afford all people unconditional acceptance as they are, as unique, special individuals, including acceptance of diversity with relation to cultural, ethnic, religious, racial, gender, age, disability, and sexual preference issues.
5. There are “no limits” to recovery.
6. Recovery and peer support are about choices and options, not final answers.
7. Participation in all activities is voluntary.
8. Each person is the expert on himself or herself.
9. Clinical, medical, and diagnostic language are avoided.
10. The focus is on working together to increase mutual understanding, knowledge, and wellness.
11. Peer support and recovery initiatives are adaptable to anyone’s personal philosophy.
12. The emphasis is on strategies that are simple and safe for anyone and away from strategies that may have harmful effects.
13. Responses to difficult situations need to be “normalized”.
14. The focus is on strengths and away from perceived deficits (Rapp, 1998).
15. The body of knowledge is always expanding and is infinite (Copeland & Mead, 2004).
For many years, it has been assumed that people who experience severe and persistent mental health difficulties do not recover, leading to low expectations that have been seen to wear away hope and support chronicity (Harrison & Mason, 1993). In the introduction to Mental Illness and Recovery, Ralph and Corrigan (2005) stated that:
Prior to 1990, students of major mental health disciplines learned that the serious mental illnesses were defined as having poor prognoses with progressively downhill courses. Treatment was limited to custodial options. People with these diagnoses had to foster ideas of hope and recovery in a mental health system that viewed serious psychiatric disorders as harbingers of doom. According to the old school, people with serious mental illness needed to accept that normal life was impossible, that dreams of independence were unattainable, and that long-term institutionalization was inescapable. Recovery signaled a monumental revolution in the mental health paradigm. (p. 4)
Recovery is a common term that is generally equated with getting well or getting back to normal (Roberts & Wolfson, 2004). However, when this term is used with respect to mental illness, most people agree that it refers to a process rather than a steady state. Although a clear definition of recovery is elusive and seems to mean different things to different people, most people agree that a person “in recovery” is working to take back control of his or her life and is working toward achieving her or his own goals and dreams. It does not necessarily mean an absence of what might be considered “psychiatric symptoms”. It does mean learning to relieve difficult feelings and behaviors, and to live well in spite of these difficulties (Ralph & Corrigan, 2005; Roberts & Wolfson, 2004). As people who have a lived experience of mental health difficulties have attempted to define recovery, various themes have emerged (Ralph & Corrigan, 2005). These themes include:
Ralph and Corrigan (2005) contend that recovery is concerned with a sense of meaning in life and personal comfort, and is focused on validation of personhood, recognition of common humanity, and tolerance for individual differences. Allott, Loganathan, and Fulford (2003) and (Ralph, Lambert, and Kidder, 2002, June)consider that the turning point in a person’s life, when they begin to focus away from illness and toward recovery, is marked by the individual’s active and responsible engagement with his or her distress and difficulties. Recovery is often described as having a defining moment or a turning point (Allott et al., 2003). Sometimes it is a low turning point before which the person had a hard time moving forward, feeling that they would never be well, and dealing with the grief and anxiety that is commonly associated with loss of health and hope for the future. It is sometimes claimed that recovery is often further delayed by a state of learned helplessness encouraged by the low expectations of mental health professionals. Several authors suggested that a beginning of working toward recovery can often be attributed to talking to peers about mutual experiences and self-help strategies. People begin to regain their sense of self, taking back control and responsibility for their lives (Faulkner & Layzell, 2000; Leibrich, 2001).
Coleman (1999), who has a lived experience of mental distress including institutionalization and who is an advocate for recovery, emphasized that recovery depends far more on self-help and collaboration than on being treated.
Recovery is not a gift from doctors but the responsibility of us all. …. We must become confident in our own abilities to change our lives, we must give up being reliant on others doing everything for us. We need to start doing these things for ourselves. We must have the confidence to give up being ill so that we can start becoming recovered. (Coleman, 1999, p. 7)
The notion that recovery from severe psychiatric disorder is impossible is now contradicted by impressive and well-known longitudinal studies and the anecdotal experience of many, many people.
In the Japanese Long Term Study (Ralph & Corrigan, 2005), follow-up evaluations were conducted for 105 people with the diagnosis of schizophrenia who had been discharged from mental institutions between 1958 and 1962. Follow-up periods were from 21 to 27 years. Results indicated that 31% were recovered, 46% improved, and 23% were unimproved. Forty-seven percent were fully or partially self-supporting and 31% were again hospitalized. Early stages of the illness course were typically found to fluctuate with regard to social functioning, whereas later stages stabilized to either a stable self-supporting state or a chronic institutionalized state.
Roberts and Wolfson (2004) considered the International Study of Schizophrenia (Harrison et al., 2001) to be the most comprehensive long-term follow-up study of recovery. It included 1633 participants from 14 culturally diverse areas who were studied at 15 years and again at 25 years after diagnosis. The results were in line with previous studies. Outcomes at 15 years and 25 years were favorable for over half of the participants. However, the researchers in this study admit that their studies, like other similar studies, rely heavily on the presence or absence of symptoms and social disabilities, and on resource indicators as outcome indicators rather than indicators that might be defined by the study participants.
Of most relevance to this project is the Vermont Longitudinal Research study (Harding, Brooks, Ashikaga, Strauss, & Brier, 1987). In this study, 269 people were followed for about 32 years. On average, the people in this study had been ill 16 years, totally disabled for 10 years, and hospitalized in the back wards of the Vermont State Hospital for 6 years. Patients participated in a model rehabilitation program organized around the goal of self-sufficiency, residential and vocational placements in the community, and long term continuity of care. They had been released from the hospital with community supports already in place. At follow up one-half to two-thirds were considered to have improved or recovered, depending on the criteria used. Sixty-eight percent did not display signs or symptoms of schizophrenia. Forty-five percent displayed no psychiatric symptoms at all. More than two-thirds were rated as having good functioning on tests that included both psychological and social criteria. This landmark study was hailed across the country and around the world as evidence that, given intensive education and support initiatives along with medical treatment, recovery from severe mental illness is possible. This finding had a great impact on the mental health field because it was in contrast to the longstanding view that people with mental health symptoms could not get better.
These findings were further supported by the Maine–Vermont Comparison Study (Desisto, Harding, McCormick, Ashikaga, & Brooks, 1995), which used a group-matching design. This study compared the outcomes of 269 people in Maine in similar circumstances with the 269 people in the Vermont Longitudinal Study. However, the Maine patients received standard inpatient treatment and aftercare. Vermont participants were found to be more productive and had fewer symptoms, better community adjustment, and better global functioning than Maine participants. Roughly one half of the Maine participants were rated as having good functioning. The researchers in these studies suggest that the model rehabilitation program utilized in the Vermont study (which will be discussed in the history section of this literature review) gave Vermont participants an earlier opportunity to adapt to life in the community and may explain the better outcomes for these participants.
Anecdotal evidence of recovery from severe mental health difficulties is growing at a rapid pace. Ralph and Corrigan (2005) state that as people have gained more voice around issues that impact their lives, a new understanding of recovery has emerged based on their lived experience (Deegan, 1988). This understanding of recovery was introduced in the 1970s with the rise of the consumer/survivor/expatient movement (Chamberlin, 2002) and is not based on a disease model framework. This view has emanated from individuals who were living with and trying to recover from mental illness and the effects of institutional and other medically based treatment interventions (Chamberlin, 2002). Walsh (1996) suggest that mental illness changes lives irrevocably. She says, “We can never go back to our ‘premorbid’ selves. The experience of disability and stigma attached to it changes us forever. People would not want to go back. Recovery involves growth and an expansion of capacities.” (p. 87) For many people who write about this process, recovery is a personally meaningful goal rather than an abstract construct that is studied academically.
Although Roberts and Wolfson (2004) feel that there is a need to gather and strengthen the evidence base for recovery, they suggest that this can and needs to be a major area for collaboration between people who experience mental health difficulties and care providers. They contend that meta-analyses or randomized, controlled trials provide little guidance on what might make a difference to a person who is working on their recovery.
How does the medical model fit into all of this? Roberts and Wolfson (2004), well-known British psychiatrists, claimed that the medical model is narrowly focused on disease, treatment, and biological reductionism, and contrast this with the broader person-centered focus of recovery models. Ralph et al. (2002), asserted the validity of an evidence base largely composed of personal narrative, and the views of “experts by experience.” At present there is significant tension between the medical model and recovery initiatives. Often their values and language stand in significant disjunction with one another. However, in this research project and in mental health recovery work around this country and around the world, this researcher has found that the medical community, while often unwilling to give up the notion that medical treatment is essential, is discovering that by supporting recovery initiatives and peer support, they experience more successful outcomes (Copeland, 2004c).
Peer support in mental health is different from other kinds of peer support that grow out of shared experience. In mental health, historically, peer support grew out of a civil and human rights movement in which people gathered around their shared experience of negative mental health treatment, which included things like coercion, isolation, restraint, rights violations, overmedication, and ignored trauma histories (Mead & MacNeil, 2004).
Peer support is a system for giving and receiving help founded on the principles of respect, shared responsibility, and mutual agreement of what is helpful. It is not based on psychiatric models and diagnostic criteria. It is about understanding another’s situation empathically through the shared experience of emotional and psychological pain. It is based on the premise that when people find affiliation with others they feel are “like” them, they feel a sense of connection. “It is not about joining a club for the mentally ill” (Mead, Hilton, & Curtis, 2001, p. 135). In this context, a peer is person who is or was receiving mental health services and self identifies as such (Solomon & Draine, 2001). Others define it as social and emotional support that is mutual and provided by people having similar mental health challenges in their lives with the purpose of bringing about desired social or personal change (Gartner & Riesman, 1982; Solomon, 2004).
Studies by George, Blazer, Hughes, and Fowler (1989), Walsh and Connelly (1996), and Salzer (2002) speak to the value of peer support for the person who is experiencing mental health difficulties. They support the notion that supportive relationships promote positive adjustment and assist people in dealing with difficult times. Peer support provides people who usually have few supportive friends and family members with people in their lives on whom they can rely, who clearly care about and value them, and who they can work with to meet their mutual needs (Sarason et al., 1983). Other benefits include information, guidance, feedback (including the unique knowledge that can come from people with similar experience), a sense of belonging, enhanced self-esteem, validation, and hope. Peer support promotes choice, self-determination, and empowerment, and increases confidence (Mead et al., 2001). People who are alienated from the mental health system and are opposed to using it are more likely to use peer support. Peers can more easily engage people who would be difficult to engage (Segal, Gormory, & Silverman, 1998). However, it must be recognized that peer support is of little value to people who feel that help is not valid if it is not delivered by highly trained health care professionals (Rappaport, 1993).
Peer support has been recognized as acceptable and beneficial since the development of community mental health systems in the 1970s. It can be financially compensated or voluntary (Solomon, 2004). It is nonmedical, and often happens in flexible informal settings that are nonhierarchical and nonmedical (Mead, 2004; Salzer, 2002; Solomon, 2004). It can happen informally when several people get together, and in various contrived circumstances including self-help groups, peer-delivered services, warm lines, hot lines, peer programs, advocacy programs, outreach, mobile crisis teams, and respite (Mead et al., 2001). It may be free standing or sponsored by an agency or organization. In this project’s Request for Proposals, Vermont asked the researchers to consider a peer support initiative as part of the pilot project. The options were to be restricted due to the funding and time restraints of this project. For instance, mobile crisis teams and respite would not be possible.
Studies of peer support initiatives are relatively recent. By their very nature they are difficult to study (Davidson et al., 2001). Though the studies are limited in number and scientific rigor, they have shown positive outcomes. For people specifically with a mental illness diagnosis, the findings are encouraging but tentative given the limitations of the research (Christensen & Jacobson, 1994). There is a lack of testing of peer support due to the culture of self-help groups that makes traditional methodologies more difficult to employ (Kingree & Ruback, 1994). The challenge in studying peer support is developing standards. It is difficult to find ways to translate practical knowledge into clear accounts of “what is the ideal” and why this is so. Mead and MacNeil (2004) felt that it would require narrative frameworks. However, this does not preclude outcome studies looking at easily measured outcomes such as employment, social participation, and hospitalizations.
In developing and implementing this study, it was helpful to look intensively at the history of the treatment provided at the Vermont State Hospital. Almost all of the study participants had spent months and often years of their lives committed to the Vermont State Hospital, or less frequently, using state supported mental health services in one of the community mental health centers. If these people had lived before the beginning of deinstitutionalization and before the onset of a remarkable program in Vermont that, at least for a time, highly influenced care and services at the hospital facility, they would not have been given the option of having an involuntary commitment order that included living in the community. They would have been housed, and probably lived out their lives, at the Vermont State Hospital. Empty Beds: A History of Vermont State Hospital (Kincheloe & Hunt, 1988), though more joournalistic than scholarly, provides insight into this issue by taking a close look at the Vermont State Hospital from its founding in 1891 to 1988. This fascinating book often reads like the history of a gala resort with depictions of social gatherings, hilarious activities, and outings for those that might be eligible, and even pictures of certificates for award winning Holstein cows on the hospital farm. But within the pages can be found the bleakness and horror of life in this state mental institution. Describing a visit in 1985, the authors say:
The elderly people were dressed in short, open-backed johnnies and lined up in a big circle of chairs around the walls of the day hall, and the place smelled of that typical overpowering hospital smell of urine, air freshener and disinfectant. The people in the day hall looked like hundreds (there were only 24) of little white birds all with broken wings, flopping and squawking, with staff stuttering about tending to them. We seemed to go through endless sets of locked doors before arriving at the inner reaches of the war. Never having been in a prison, this did seem to match my image of one. We were immediately surrounded by male staff to escort us, and, because they were all taller than me, all I saw was backs and chests and faces, and then we left, and I was thoroughly imbued with a sense of danger and control. Patients’ fear, anger, defensive lashing out and even desire to die in the first few days cannot be solely attributed to mental illness, but rather to a very normal reaction to being forced into a terrifying situation. (Kincheloe & Hunt, 1988, p. 187)
Census at the hospital peaked at 1,172 in 1966. There were precipitous drops in inpatient census through the 1970s and 1980s. There were only 161 patients when Empty Beds (Kincheloe & Hunt, 1988) was written in 1988, and there are currently between 40 and 60 people at the hospital at any given time. What factors account for this drop in census, and how might that information be important to this study and the program that would be developed as a result of the study? Clearly these issues beg to be explored.
Dr. George Brooks, who began working at the hospital in 1947 and was superintendent from 1968 to 1984, was highly regarded as a strong advocate for improving mental health care and for people who experienced mental health difficulties. In 1957, he applied for a grant that was funded through the US Department of Health, Education, and Welfare, Office of Vocational Rehabilitation. It was called the Vermont Project. Its purpose was to develop and implement a rehabilitation program for people diagnosed as having chronic schizophrenia. The Vermont Story (Chittick et al., 1961) is a detailed description of this project. It not only changed the lives of hundreds of people who had lived at the Vermont State Hospital for many years, it became a guide for similar efforts that were occurring or being planned across the nation.
Brooks and his colleagues recognized that in cases of chronic illness and lengthy hospitalizations, the person would no longer have a place in a community. They might have lost many of their employment and social skills. They might no longer have contact with friends and family. In order for the person to be independent, self-sufficient, and reinstated in the community, there must be active participation by both the person and the community in the rehabilitation program. To meet this need, Brooks and his colleagues developed and implemented a program that included the following components:
1. The use of drug treatment. “About 9 out of 10 of the patients in this program receive some neuroleptic medication” (the only kind of medication that was available at that time for psychosis (Chittick et al., 1961, p. 31). This was in the early days of medication availability and use. This may be why they had been taking these drugs for relatively short periods. The authors states that the “duration of treatment ranges from one month to over five years” (Chittick et al., p. 32) Currently long-term use of drugs to treat these illnesses is common, and people are often told that they will have to stay on these medications for the rest of their lives. Also, today a much broader spectrum of drugs that treat psychiatric symptoms is available.
2. Changes in ward care. Prior to implementation of this program, patients were typically confined in crowded institutional wards with little attention from staff, limited options for activities, and few opportunities for making choices. In this program, “We try to provide a more normal and home-like atmosphere…The atmosphere is relaxed and noncustodial. Attendants are included in discussions and planning groups. The wards are pleasantly decorated and furnished. They have television, laundering facilities, etc. The patients have pets; they make popcorn and plan parties (Chittick et al., 1961, p. 32).
3. Therapy groups. Patients participated in therapy groups. Group leaders were anyone who worked on the staff including attendants, nurses, social workers, physicians, and vocational counselors. The focus of these groups was reality problem solving in the areas of job training, job finding, living arrangements, social activities, and the relevance of hospital activities to the patients’ goals in these areas. Patients were encouraged to make choices.
4. Graded privileges. Patients could move rapidly from the limited ground privileges to freedom of movement within the entire hospital, and then to freedom of movement in the community (Chittick et al., 1961).
5. Activity therapy. Patients were involved in occupational and recreational therapy groups designed to encourage or require group cooperation, first with each other, then toward the entire hospital, and then toward the community. Examples included making dinner for each other, putting on a hospital bazaar, and participating in the village Fourth of July parade (Chittick et al., 1961).
6. Industrial therapy. This part of the program used the hospital as a training facility. “Patients are assigned to jobs based on their expressed interest (a new concept for these people) and ability in light of their future plans” (Chittick et al., 1961, p. 33) They worked toward paid employment in the community.
7. Vocational counseling. People received intensified vocational counseling. Counselors worked with the patients realistically on planning for the future. This continued even in the rehabilitation house or in the community until the person was well established.
8. Blurring. A variety of activities were planned and implemented to blur the boundaries between hospital and community. This included ongoing opportunities for connection between people who were just beginning the program and people who had progressed into rehabilitation houses or the community (Chittick et al., 1961).
In this program, leaving the hospital was considered a critical life transition. People were given instruction and rehearsed situations they were likely to encounter in the community. People lived in halfway houses or participated in a form of graduated return to the community. Supports and long-term follow-up contacts were established to continue after the person was settled in the community. A high incidence of relapse occurred when this was not in place. Of 298 cases, 83% were released from the hospital after one year or more of intensive effort to reintegrate them back into community life. In 1965 it was reported that more than 500 severely disabled chronic patients had been successfully returned to the community. This program was the beginning of a statewide system of community mental health centers to take over aftercare programs and to provide a wide range of outpatient, prevention, and support services (Kincheloe, 1988).
This program was studied by both the Vermont Longitudinal Research study (Harding et al., 1987) and the Maine-Vermont Comparison study (Desisto et al., 1995). These landmark studies were hailed across the country and around the world as evidence that, given intensive education and support initiatives along with medical treatment, recovery from severe mental illness is possible. This finding had a great impact on the mental health field because it was in opposition to the longstanding view that people with mental health symptoms could not get better, and could even expect to get worse as they aged (Copeland, 1991).
This research convinced people across the country and around the world that recovery from mental health difficulties is possible and even probable. The state of Vermont probably would never have funded the current project to study which recovery and peer support strategies might be helpful to people with orders of involuntary commitment were it not for the findings of these studies and this historic exemplary “recovery” program.
Unfortunately, the Vermont State Hospital is no longer the avant garde institution that it once was. Through the late 1980s and 1990s and on into the new century, funding was reduced and attention was focused on community mental health centers. With changes in key personnel and government officials, the phenomenal Vermont Story (Chittick et al., 1961) was forgotten and the programs that meant life to so many people were forgotten as well. The hospital has recently been decertified by Medicaid, following an investigation by the United States Department of Justice in July, 2005 (Beiner, 2005). Their findings contain allegations that VSH is violating the federal statutory and constitutional rights of patients. This was a stunning blow and a huge embarrassment. Officials are struggling to correct these insufficiencies. However, they are not looking to The Vermont Story (Chittick et al., 1961) for answers. Linda Corey, Executive Director of Vermont Psychiatric Survivors, reports that there is currently no rehabilitation program at the Vermont State Hospital (2005). Recently a hospital official found copies of The Vermont Story and was going to discard them until they were rescued by Corey. There are three private facilities in Vermont that provide rehabilitation services modeled after the Vermont program that worked so well; but these programs are generally not available to people with limited resources, as is usually the case for people on orders of involuntary commitment.
To its credit, Vermont has an exemplary recovery network that was developed by a group of key stakeholders, people who experience mental health difficulties. Vermont Psychiatric Survivors, an organization of people with experience in the mental health system, is well known across the country for its ability to raise money through federal, state, and private grants and for its popular statewide network of mental health recovery and Wellness Recovery Action Planning programs that are available without charge to anyone who wants to attend. Although supported by the state department of mental health, Vermont Psychiatric Survivors is a nonprofit organization administered by people who have used the mental health system. The Executive Director reports that it has been difficult to get people who have orders of involuntary commitment to take advantage of these programs (Linda Corey, personal communication, March 5, 2005).
The researchers conducted a nationwide search to find programs that had been developed to meet the needs of people who have repeated involuntary commitments. They began by contacting the state Departments of Mental Health and following up on their leads. It was a frustrating task. Very little has been done to address the specific needs of people in this category. However, many mental health recovery and peer support programs designed to serve a broader base of people with mental health difficulties were reviewed and helped inform development of the pilot project. Of particular interest to the researchers were those that were developed by people who had been or are currently users of mental health services, including people who have had involuntary commitments.
Wellness Recovery Action Planning (WRAP), a program that was developed at one of the author’s seminars in Vermont in 1997 by people who have a lived experience of mental distress including involuntary commitment, is now offered in every state and in many other countries. WRAP programs, which can be led by anyone but are most often led by others with similar issues, help people design and use a personal recovery plan (Copeland, 2002). From the onset of this project, it was clear that the State of Vermont Department of Mental Health and the people interviewed in the study wanted to include some form of individualized recovery planning like WRAP in the pilot project. The following quote from an interview illustrates the point (the interviewer’s comments are in italics):
Are you familiar with Mary Ellen’s WRAP stuff? I am. I used her program, actually, at the hospital. What was useful and not useful about WRAP? I think it was really useful, because it made me look at symptoms. It made me look at warning signs. It made me put those into reality.
WRAP is a program in which participants identify internal and external resources for facilitating recovery, and then use these tools to create their own individualized plan for successful living (Copeland, 2002b). The creation of a WRAP plan generally begins with the development of a personal Wellness Toolbox, consisting of simple, safe, and free or low-cost self-management strategies such as a healthy diet, exercise, sleep patterns, and pursuit of adult life roles (Copeland, 2002b). Using this Toolbox, the person creates an individualized plan for engaging each strategy to obtain and maintain their recovery. The plan also includes identification of “early warning signs” of symptom exacerbation or crisis, and how the Toolbox can help people to manage and feel better. WRAP also encourages development of a crisis plan, which states how the person would like to be treated in times of crisis (similar to an advance directive for inpatient psychiatric care), as well as a post-crisis plan for getting back on the road to recovery (Copeland, 2002b).
Judith Cook, a mental health researcher at the University of Illinois in Chicago, established the evidence base for WRAP. “There is an evidence base for WRAP due, in part, to the availability and widespread use of a pretest posttest instrument developed by the model’s creator (Copeland, 2003) and widely used by its facilitators. A number of pretest/posttest design studies have examined the impact of WRAP on consumers’ well being, use of WRAP techniques, and recommendation of WRAP to other peers” (Cook, 2004, p.3).
Cook corroborated the findings of the study (Copeland, 2003) with those of two other studies, Corey (2001) and a study by the State of Minnesota (Buffington, 2003). Findings from these studies showed significant increases in people gaining a sense of hope that they could and would recover, as well as the ability to recognize early warning signs of mental health difficulties. People learned to use tools, skills, and strategies for coping with and relieving symptoms. These studies showed that people prefer natural supports instead of using the mental health system as their support, and that they benefit from support groups and from close connection with other people with similar life challenges. There were significant increases in their ability to develop daily plans that support wellness and recovery and to create crisis plans or advance directives that others could use to assist them in an emergency. Finally, following WRAP training, people reported being more comfortable obtaining information about community services and engaging in self-advocacy.
In 2003, the federal Center for Mental Services contracted with the author to develop a recovery curriculum called Taking Action that would be piloted, revised according to the findings of the pilot, and then distributed for national use in mental health agencies, organizations, and institutions. In developing this intensive curriculum, the author worked with a steering committee of 15 people who represented federal, state, and local agencies. as well as people with lived experience. These included representatives of various cultural groups including Hispanics, Native Americans, and African Americans from various economic and educational backgrounds. The pilot programs in three locations began in January 2006. Because the author developed this curriculum, the information she gathered in this process also informed the development of the Community Links Program. Of particular import to this program was the focus on cultural diversity (making information more easily accessible to people who may have difficulty learning), flexibility in program implementation, values and ethics of mental health recovery, adaptation for use in various settings, a wellness rather than an illness orientation, working toward achieving personal life goals and dreams, community integration, and using action planning to achieve that integration.
Dr. Abraham Low can be credited with pioneer recovery thinking and the earliest mental health recovery-based program on record, Recovery, Inc. Low started an organization to disseminate his methods in 1937. This organization continues to grow and be strongly influential in the mental health field. Although Dr. Low is now deceased, other family members and staff continue to carry on his important work. The following description of his work appears at Recovery Inc’s website.
A worldwide organization with headquarters on Chicago’s near north side, Recovery is a cornucopia of self-help methods and techniques that parallel those used in cognitive therapy. The program uses surprisingly simple methods to help people dislodge themselves from emotional ruts. The process begins by learning to modify thoughts and behavior. Patients meet in small groups to examine the distressing trivialities of everyday life—an inconsiderate driver, a noisy co-worker—to show how symptoms can be triggered by anger and how to strengthen one’s nervous system against them. The goal is to translate success in dealing with these trivial incidents into mechanisms for handling life’s bigger challenges. Following a structured framework, the program uses practical coping techniques and methods developed by Dr. Low as well as cognitive/behavioral therapies that can be used individually and in conjunction with professional help. The program avoids use of diagnostic terms. The Recovery framework of observing behavior eliminates complexes, childhood memories, dream experiences and subconscious thought. Everyone is simply considered a “nervous patient” or “nervous person.” (Sidney, n.d.)
In 1950 Dr. Low wrote a book, Mental Health through Will-Training, that has been in continuous publication since that time. Although many of the examples are dated, Dr. Low’s emphasis on self-help and wellness are remarkable. People who have used this program as their primary recovery tool were espousing it at a national mental health conference in 1992. They described the horrific life circumstances that had previously characterized their lives including continuing episodes of psychosis, delusional thinking, and bizarre behavior. They attributed their high level of functioning, wellness, and competence to the Low’s recovery program. Although this program has never gotten the credit it deserves, it can be a valuable guide to recovery. It can also be easily incorporated into other recovery-focused programs. Although numerous articles have been written that support this valuable work, supportive research is lacking. People who have involuntary commitments might use the skills and strategies of Recovery, Inc. to improve their life circumstances.
Peer-to-Peer (McNuly, 2002), is an experiential learning program for people with serious mental health difficulties that was developed by Kathryn McNulty under the auspices of the National Alliance for the Mentally Ill. McNulty is a user of mental health services, a former provider and manager in the mental health field, and a longtime mutual support group member and facilitator. This program consists of nine 2-hour units and is taught by a team of three trained people who are personally experienced at living well with mental health difficulties. In discussing this program with NcNulty, she said that each class contains a combination of lecture and interactive exercise material and closes with Mindfulness Practice (techniques offered to develop and expand awareness). Each class builds on the one before: attendance each week, is therefore required. Participants come away from the course with a binder of hand-out materials as well as with many other tangible resources: an advance directive; a “relapse prevention plan” to help identify tell-tale feelings, thoughts, behavior, or events that may warn of impending relapse and to organize for intervention; mindfulness exercises to help focus and calm thinking; and survival skills for working with providers and the general public.
Although this curriculum contains many exercises that are validating, the aspects of mandatory attendance, the focus on diagnosis, and the lack of flexibility in implementation made this curriculum less useful as a model for those who have had orders of involuntary commitment, for whom self-determination is critical.
BRIDGES: Building Recovery & Individual Dreams & Goals through Education & Support is a mental health recovery curriculum that was developed by the Tennessee Mental Health Consumers’ Association, consumers being people who have experienced psychiatric symptoms. Developed in the early 1990’s, it has been adapted for widespread use by mental health systems in several states. While the researchers found much useful information in this curriculum, particularly the descriptions of self help tools and strategies, they felt that people who have involuntary commitments might find this program offensive because of its heavy emphasis on the medical model and its use of medical language. In addition, being a scripted curriculum, it lacks the flexibility needed by people who have different learning styles, needs, and preferences.
The Peer Bridger Program in New York State has been in existence for many years and may be one of the earliest attempts to reintegrate people who were in state hospitals back into the community. They are currently focusing on work with adult homes, building community resources and connections, and training peers to support people in developing advance directives. Peer Bridger has been successful in helping peers develop mutually supportive and beneficial relationships that allow for new role development and healthier community relationships. “Bridgers” (people who provide assistance and support) have maintained connections with people in the community and offered informal support to avoid crises. Not only has this program been helpful to people who have been “bridged,” it has also had a tremendous influence on hospital and community support staff attitudes. Hospital staff members have moved from skepticism to unconditional support of this peer program (Matthew Matai, personal communication, February 23, 2005). The effectiveness of this program has been studied by several rigorous research projects (MacNeil, 2001, 2004).
The ComPeer program matches people with involuntary commitment orders with community volunteers who share similar interests. However, in this program, the ComPeer is considered part of the clinical team and reports back to the team. This might make it difficult for the person who is being supported to feel that the relationship is mutual and to be trusting of the ComPeer. Volunteers for ComPeer are trained in a medical approach to mental health and so potentially come with some assumptions that may be inaccurate about the people they mentor. This program has been helpful in connecting people with resources outside the mental health community. Also the relationship with someone outside the treatment arena potentially allows for a more reciprocal relationship (see www.compeer.org). A qualitative assessment of this program that studied differences between volunteers who have a psychiatric diagnosis and those who do not found that people who were assigned to ComPeer who had a psychiatric diagnosis were more comfortable in the relationship, but everyone benefited from the program in some ways regardless of the volunteer’s status (Davidson et al., 2001).
Intentional Peer Support: An Alternative Approach is a comprehensive curriculum developed by Shery Mead that effectively deals with all aspects of peer support from a relational perspective (Mead, 2005). Although other peer support curriculums tend to focus on peers in service provision and have little applicability to the people in this study, this curriculum addresses in depth all aspects of a topic that is difficult for everyone, developing and maintaining relationships. Mead defines peer support and discusses its applicability to addressing mental health issues and recovery. She takes learners into uncharted territory by encouraging them to explore “how they have learned what they have learned,” how they can develop new, enriching ways of knowing. She moves them away from service-based relationships to mutually supportive, nonhierarchical relationships, and discusses why peer support needs to be “trauma informed”. Topics include subjects that are commonly overlooked, like how to make first contact, language that helps and language that hurts, listening in ways that raise consciousness and encourage self reflection, negotiating relationships, setting limits, dealing with power related issues, issues related to internalized oppressions and learned helplessness, redefining safety, negotiating risk, and dealing with conflict. She includes specific information on peer support within the mental health system, peer-run warm lines, and peers running a crisis alternative respite program (Mead, 2005).
The author and Shery Mead discovered in their trainings that people were combining Wellness Recovery Action Planning and peer support methodologies, sometimes well and sometimes not well, and were sometimes violating the values and ethics that are intended to guide these initiatives. They worked together to develop a manual, Wellness Recovery Action Plan & Peer Support: Personal, Group, and Program Development (Copeland & Mead, 2004) and a training protocol to address these issues. This comprehensive work describes a flexible approach that is easily adapted to meet specific needs. It provides an in-depth review of the WRAP process in a peer support context.
This chapter reviewed pertinent aspects of involuntary commitment, the values and ethics of mental health recovery and peer support, definitions of mental health recovery, recovery-related research, peer support in mental health, the history of recovery interventions in Vermont related to individuals who were involuntarily committed, and programs that have been used to address the needs of people with orders of involuntary commitment. The following chapters describe how the literature that was reviewed prior to and during this study informed the Moving Ahead Project and the development of the Community Links Program.
In 2003, the Vermont State Department of Mental Health distributed a Request for Proposals (RFP). They were searching for researchers who would address the question: “What kinds of recovery-oriented education and peer support strategies will be most helpful to people in reducing court-ordered control of their lives?” Mary Ellen Copeland, Principal Investigator (the author of the present work), and researcher Shery Mead, both well known for their work in mental health recovery and peer support, developed a proposal and applied for funds to implement this project. The final proposal, submitted to the State of Vermont in March 2003, was the result of months of collaboration, study of various research methods and similar research projects, consultation with other mental health researchers including Boston University’s Center for Psychiatric Rehabilitation, and review of similar initiatives. The proposal, titled Moving Ahead, was accepted in May 2003.
In developing the proposal and program design, and in implementing the project, the funders and researchers were cognizant of the following issues:
1. As described in the RFP, funding for this project was limited to $125,000 to cover all expenses of the study and the pilot project, and the project time line was one year from start to project completion. These parameters clearly restricted project activities.
2. The program was defined by the values and ethics of peer support and recovery (Copeland & Mead, 2004). Of particular relevance to this project is the belief that each person is the expert on her- or himself. Therefore, to be consistent with these values the data came primarily from people who have had or currently have orders of involuntary commitment. These people were difficult to engage as they often did not trust the system or anything sponsored by the system (Mead, 2005). In a recent Vermont study of people who have been involuntarily medicated, the researchers were not able to get any volunteers to participate in the study.
3. It was acknowledged from the outset that people who have mental health difficulties, even those that are most severe and chronic, can and do recover (Ralph & Corrigan, 2005; Roberts & Wolfson, 2004). Each person in every interaction was treated as a recovering person.
4. The focus was on working together with all stakeholders to increase mutual understanding and knowledge, and to promote wellness. Therefore the lived experience of the researchers was significant, and opportunities for people who were interested in this project to meet and work together were included in all aspects of the project.
5. The language used in the study was nonmedical, nonclinical, and nondiagnostic. Responses were normalized in the context of a person’s life and lived experience (Copeland & Mead, 2003).
6. The focus was on strengths and away from perceived deficits (Rapp, 1998).
7. It was understood that participants in this project may have histories of trauma and abuse, and that sensitivity to this issue was supported through all parts of the research process (Mead, 2005).
8. Participants were treated with dignity, compassion, respect, and unconditional high regard at all times (Copeland & Mead, 2004).
9. Participation in all activities related to this project was voluntary (Copeland, 1991).
10. The body of knowledge concerning mental health recovery and peer support is constantly expanding. The findings of this study and the resulting program are contributing to that body of knowledge. They are not considered to be the final answer.
The findings from this study were used to develop a program rather than to find out how an existing program is working. Prior to this study and the Community Links program, there was no program in Vermont to specifically address the needs of people who have orders of involuntary commitment and to facilitate their recovery and independence.
Qualitative research methods were used for this study because the project was clearly concerned with identifying a process rather than defining an end point or outcomes as would be expected in a quantitative study. Creswell (1994, pp. 2–3) describes qualitative research as “an inquiry process of understanding a social or human problem, based on building a complex, holistic picture, formed with words reporting detailed views of informants, and conducted in a natural setting.”
As stated by Morse (1997), the project clearly fit within the parameters of qualitative research because (a) there was a lack of theory and previous research on the issue of using mental health recovery-oriented practices and peer support in addressing the needs of people with orders of involuntary commitment, (b) there was a need to study, explore, and describe issues related to this topic to better meet the needs of people in this group, and (c) this problem was not suited to quantitative study because there was not sufficient information to establish precise response categories in advance.
Of the many qualitative models of study, an action research process was chosen for this study because it focuses on resolving a problem or addressing an issue (Patton, 2002)., in this case using recovery-oriented education and peer support to meet the needs of Vermonters who have orders of inpatient or outpatient involuntary commitment. As described by Lewin (1948), action research is a three-step spiral process of (a) planning, which involves reconnaissance; (b) taking action; and (c) fact-finding about the results of the action. In this project, the researchers intensively studied issues related to the recovery needs of people who had orders of involuntary commitment, developed and implemented a pilot project based on the findings, and then evaluated the pilot project. The researchers have recommended that this action research process be repeated over time to continue to refine this program and develop other effective strategies to promote the recovery of people in this group.
The research model allowed the study to be accomplished within the one year allotted timeframe and the $125,000 budget even though it included a literature review, interviews, focus groups, and data analysis, and then the development, implementation, and evaluation of a pilot project. Other research models that were considered, such as narrative research (Polkinghorne, 1988), ethnography (Denzin, 1997), and life story models (Hertz, 1997), would have taken more time and been more costly.
In this action research process, people who have these orders, people who have had similar experiences, and people who work closely with people with these orders were involved in every aspect of the study process, making it most relevant to the actual lived experience of people who have involuntary commitment orders (Rogers & Palmer-Ebbs, 1994). The research became part of the process of change by engaging the people, in this case people who have orders of involuntary commitment, in the process of studying and solving their own problems. As is often the case with action research, the research, the resulting program, and the evaluation became blurred as the project proceeded, and the research process became less formal even as it was generating useful information. Through the study process, it was noted that the participants began to feel a sense of hope, to understand that they have value, and to believe that what they have to say about their own lives is important and significant (Patton, 2002). The researchers found themselves in multiple challenging roles that included facilitator, collaborator, instructor, counselor, and friend in support of the people involved in the study.
Although in most action research the findings are seldom disseminated beyond the program within which the study takes place, in this particular case the findings of the study will be written into a full report for use by the Vermont State Department of Mental Health and may be the subject of several articles that will appear in mental heath journals.
Before beginning the research process, the Moving Ahead Project had to be approved by both the Vermont State Department of Mental Health Institutional Review Board (IRB) as the project funders and the Union Institute & University IRB because the principal investigator is a doctoral candidate at that school. Although each board had specific and differing areas of concern, both boards agreed that people who have had repeated involuntary commitments are a vulnerable population and that extra precautions and care were necessary to protect their interests and rights. Comprehensive applications were developed that described every aspect of the process of interviewing study participants. Initial applications were returned and needed extensive revision in order to be approved. Coming to agreement with both of these boards on how to handle issues related to vulnerability was challenging, took more time than anticipated, and delayed the interviews. However, it did help to assure that this project would be carried out in a rigorous manner, paying close attention to the needs of each project participant.
There was also a discrepancy between the two IRB boards. The Vermont Board wanted interviews to be limited to an hour. The Union Board felt that longer interviews would be needed; however, they acceded to the requirements of the Vermont Board. In retrospect, the hour-long interviews worked well, and longer interviews might have been difficult for some of the participants. If there had been more time for the project, additional interviews with these participants might have produced even more enlightening data.
The researchers had planned to train a cadre of people who have had mental health difficulties and a history of involuntary commitments to interview the study participants. Through the IRB process, it became clear that this would not be possible. The training and intensive oversight that would have been needed if inexperienced people conducted the interviews did not fit within the parameters of this grant. Therefore the principal investigator and coresearcher did all of the interviewing in the study.
The IRB process took much longer than anticipated because the boards did not respond promptly to the applications. In future projects, more time needs to be allowed in the project timeline for this process. Because of this delay, timelines had to be revised repeatedly; and it was necessary to work more intensively when the applications were approved to keep within the project timeline.
The principal investigator (the writer) hired a part-time project administrator who was responsible for administrative tasks such as project promotion activities, setting up focus group/informational meetings, copying, mailing, and making initial contacts with people responsible for other programs that address the issue of recovery and involuntary commitment. A bookkeeper was also hired to distribute funds and develop financial reports.
All direct contact with interviewees and potential interviewees was carried out by the principal investigator and the coresearcher to assure adherence to the requirements of the Institutional Review Boards. A toll free confidential phone line was set up to receive calls from possible study participants. The researchers responded to these calls.
An intensive publicity campaign at the beginning of the project was effective and successful. The purpose of this campaign was to:
1. Inform people about the study. In a small state like Vermont where many people have an investment in the mental health system, people like to know what is going on. They tend to be distrustful and unsupportive if they are not fully informed.
2. Invite people to attend the informational and focus groups meetings.
3. Recruit volunteers to serve on the Moving Ahead Advisory Board.
4. Recruit participants for the study.
The following strategies were used to implement the publicity campaign:
1. Articles describing the project were published in the quarterly newspaper of Vermont Psychiatric Survivors (a peer-run mental health education and support organization) and in other newspapers across the state.
2. Descriptive posters were posted in key locations around the state including bulletin boards at community mental health centers, drop-in centers, churches, grocery stores, and other public places.
3. The principal investigator and the coresearcher described the project at a meeting of administrators of community rehabilitation teams, gave them information to distribute, and asked them to talk to people who might be interested in attending the focus groups or the interviews.
4. Staff from Vermont Psychiatric Survivors networked information through their statewide system of support groups.
5. The principal investigator and the coresearcher made personal calls to key contacts around the state.
As a result of this campaign, people in the mental health system statewide learned about and supported the project. The informational and focus groups were well attended. Many people inquired about the study. Twenty-eight people were interviewed, almost twice as many as had been planned. It is hoped that articles about the study and networking activities had some informational benefits in the greater community that cannot be monitored or measured. Although this campaign was time consuming, it was well worth the effort and would be advisable for future similar projects.
The researchers set up and worked with two advisory boards. In addition to advising the researchers, people on these boards recruited participants, collected data, gave feedback on the study and pilot project design, assisted with implementation of the pilot project, and coordinated efforts to continue project activities after the pilot project was complete. They offered differing perspectives and were essential to the research process. Both advisory boards presented challenges that took patience, consideration, and consultation to resolve.
The Vermont State Department of Mental Health Advisory Board included the state project officer, several state officials, the executive director of Vermont Psychiatric Survivors, and the state coordinator of the mental health recovery education program. At least two of the people on this board were people who have had mental health difficulties and have been users of the mental health system. Contact with this board was through an initial face-to-face meeting, followed by monthly conference calls. Board members were available for consultation as needed.
At the first meeting, the board reviewed the project design and related research, and discussed anticipated problems in recruiting volunteers. After this face-to-face meeting there were monthly conference calls, members of the committee reviewed documents on an on-going basis, and there was e-mail correspondence to address timely issues. Although much of this input was helpful and facilitated connection with Vermont Legal Aid and the Vermont Agency of Protection and Advocacy, inconsistent participation by members who then challenged decisions made in their absence hampered this mutual work. Key to the success of this committee was the consistent dedication of the state project officer who often cleared the way for progress when others seemed intent on an agenda that was less than supportive. Several state officials attempted to micromanage the project from time to time. This was frustrating, and the researchers had to use patience and negotiation skills to resolve these issues.
The Moving Ahead Project Advisory Board consisted of eight people who were selected by the researchers because they had expertise and experience that was expected to be helpful to the project. The board membership included a person representing the Vermont State Agency of Protection and Advocacy and the director of a regional acute care facility. The rest of the board members were people who have used mental health services and who have either had current experience with or have histories of involuntary commitment.
Meetings were held with this group every other month. The researchers consulted with board members between meetings. This board was primarily validating and supportive, giving suggestions that broadened perspectives and helped in defining the Community Links Project. Inconsistent attendance and failure to review the interim reports that were used to keep them updated hampered the process. In addition, one person was very contentious, trying (and sometimes succeeding) to use the meeting to meet her personal needs, and making it difficult to get our agenda done. It became apparent that it is important to get references for people serving on boards to keep energy from being needlessly wasted. Board members worked together well, using a negotiation and problem-solving process to resolve this difficulty.
Three focus groups/informational meetings were held, one in the southeastern part of the state in Springfield, one in the central part of the state in Berlin and one in the northwest corner of the state in Burlington. The purpose of these gatherings was to inform people about the project, to recruit people to serve on the advisory boards and volunteer for the study, and to ask for input on:
1. All aspects of involuntary commitment;
2. Questions that can be asked of people on involuntary commitment to build a better understanding of what will be helpful to them;
3. Recruitment of study volunteers.
These meetings were recorded, and the information was used to guide the study and develop the semistructured interview guide.
Although it would have been preferable to have separate focus groups and informational meetings, the timeline of the project would have made this difficult. However, given the power of the focus group, it was important to include this strategy, even in a less than perfect context. According to Patton, “Focus group interviewing was developed in recognition that many consumer decisions are made in a social context, often growing out of discussions with other people” (Patton, 2002, p. 385). He goes on to say:
In a focus group, participants get to hear each other’s responses and to make additional comments beyond their own original responses as they hear what other people have to say. However, participants need not agree with each other or reach any kind of consensus. Nor is it necessary for people to disagree. The object is to get high-quality data in a social context where people can consider their own views in the context of the views of others. (Patton, 2002, p. 386)
An average of 10 people attended each of these group meetings. Reminder phone calls to key people made it possible for some people who would not otherwise have transportation to attend. Several mental health workers brought van loads of people. Participants included people on involuntary commitment orders, people who had been on these orders in the past, people who had been in the mental health system but who had not been on orders, clinicians, administrators, and family members.
The researchers began the meetings by describing the project and the need to recruit people to serve on a project advisory board and people who would be willing to be interviewed. This was followed by a rich discussion of the issues. These meetings began to give the researchers perspective on how people feel about involuntary commitment orders and possibilities about the kind of initiative that might be helpful. Suggestions from the participants were helpful in developing the semi-structured interview guide to use in the interviews.
The researchers facilitated these recorded meetings. Specific information and lists of concerns were written on a newsprint pad. In addition the researchers wrote field notes after each meeting. Some of the concerns identified by the various stakeholder groups at these meetings included:
It was hoped that at least 15 people would be interviewed in this study. However, there were two major issues that the researchers felt might hamper recruitment efforts.
1. Because this tends to be a group of people who have been treated badly in society and in the mental health system, it was assumed that they might have issues that would keep them from volunteering, such as trusting others and trusting the mental health system.
2. People who had these orders cannot be contacted directly due to confidentiality issues.
The following strategies were used to overcome these barriers in recruiting study volunteers:
These efforts to recruit people who had orders of involuntary commitment were extraordinarily successful. Because, as previously stated, people who have these orders tend to be distrustful, people on the advisory boards warned the researchers that recruitment would be difficult and that the goal of interviewing 15 people would not be reached. Actually, 40 people volunteered to be interviewed and 28 people were interviewed. Feedback from people who agreed to be interviewed suggests that the stipend was very important to them and was probably the primary factor that encouraged them to participate. The letters from Vermont Legal Aid and contacts by staff on the Community Rehabilitation Teams also seemed to be key factors in this successful recruitment effort. Study participants noted that they appreciated the confidential toll-free line and knowing that the people who did the interviews had experience as users of the mental health system.
There were 16 men and 12 women in the study, representing proportionally the usual number of people in the state who have these orders. Male ages ranged from mid-20s to mid-60’s with a mean age of 40. Women’s ages ranged from early 20s to late-60’s with a mean age of 36. Sixty-six percent of the participants had one order, and 33% had more than one order. Twenty-six percent of the participants had been on their current order one year or less, 13% had been on the order for 2 years, while others ranged between 3 to 10 years with the mean length of 5 years for people in this group.
Interviewees included people from all areas of Vermont with 30% from Chittenden County, the most populous county in the state which includes Burlington, the state’s only large city (148,000 population). The population of Vermont is 625,000.
The group to be interviewed was extremely diverse. Common characteristics are difficult to identify. Some interviewees came from extreme poverty. Others came from backgrounds of wealth and privilege. The advantage that those people who came from wealth and privilege had was that they could hire lawyers so they had more input into their orders and had more choice in care options. Several people had been wealthy at one time and their funds had been “cut off” by family members. A few had less than a high school education, but most had at least graduated from high school. Some were obviously intellectually gifted. Several had advanced degrees and had been proficient in their fields prior to their involvement with the mental health system. Only one person was currently employed. Another was planning to go back to college. All of the participants had been involved with the mental health system for many years. The shortest time was two years and the longest more than 25 years.
People had a general sense of despair and resignation about their lives. There was a pervasive feeling that “things” were outside of their control and that there was little they could do to improve the quality of their lives. This affected their motivation. In discussing possibilities like recovery education and peer support, although some said these initiatives might be helpful, there was little genuine enthusiasm about anything that was suggested, and no belief that anything positive was going to happen.
Each person had a tumultuous and trauma-filled history that often included severe loss. Although most of this occurred prior to their involvement with the mental health system, some severe trauma and loss occurred within the mental health system and was related to mental health treatment (e.g., forced medication, restraint and/or seclusion, abuse from other patients or staff, and institutionalization).
With several notable exceptions, the physical health of the interviewees was poor. People were overweight, had various movement disabilities, and had serious chronic illnesses like heart disease and diabetes. Although they knew they had these conditions, they had little information about anything they could do to help themselves other than medical interventions. Only one person talked about trying to maintain a healthy diet and work on weight loss.
The study participants had little insight or knowledge about the possible causes of mental health difficulties and knew little about their own treatment, alternative treatments, and self-help strategies for addressing mental health difficulties. They were accustomed to having things done to them rather than taking the initiative to help themselves.
People also had notably limited systems of connection. Some couldn’t name anyone they felt close to. Others had only several supportive people in their lives. Some could only name care providers as people in their circle of support. Most had lost connection with family members and did not feel part of any community.
All of the people interviewed had a history of being perceived as dangerous, either to themselves, family members, or the community. The researchers were warned in advance that the interviewees were potentially dangerous. Prior to the interviews, the researchers expressed some anxiety about safety. Consultants from Vermont Protection and Advocacy taught them how to deescalate difficult situations and how to quickly leave a situation that had the potential to be dangerous. However, the researchers did not experience any situations in which they felt they were in danger.
The interviewees were interviewed by either the principal investigator or the coresearcher in one-hour interviews. The researchers worked with the interviewee to arrange a place for the interview that was most comfortable and convenient for the interviewee. Interviews were held in people’s homes, restaurants, drop-in centers, or private space at a mental health agency.
Before beginning the interviews, the researchers, using data gathered in the focus group meetings, developed an interview guide.
The interview guide is prepared to ensure that the same basic lines of inquiry are pursued with each person interviewed. It will provide topic or subject areas within which the interviewer is free to explore, probe, and ask questions that will elucidate and illuminate that particular subject. Thus, the interviewer remains free to build a conversati