The International Journal of Psychosocial Rehabilitation
What Would a Recovery-Oriented Program Look Like?
 

LeRoy Spaniol, Ph.D.
Licensed Psychologist,
  Psychiatric Rehabilitation Consultant,
  President of NAMI of Cape Cod,
  Massachusetts, USA,
  Consulting Editor for the Psychiatric Rehabilitation Journal.
  lspaniol405@comcast.net



 Citation:
Spaniol L. (2008).What Would a Recovery-Oriented Program Look Like?.
   International Journal of Psychosocial Rehabilitation. 13(1) 57-66

 


 Abstract
  Research and practice-based knowledge has grown over the past 30 years concerning what is helpful to recovery and what is not. This information comes from a variety of sources including research, professional practice, family experience, and the recovery experience of people with mental illnesses. Through these complementary perspectives the author describes the conditions under which people with psychiatric disabilities change, and, how positive or negative internal and external factors influence these changes.

 Introduction
  As a result of the newness of the shift toward recovery-based practice, mental health professionals, family members, people with mental illnesses, and people in the community are at different levels of understanding and implementing the recovery paradigm. The current transition is leaving some people very confused and frustrated. A critical first step, however, is to understand what recovery is and what a recovery-oriented program would look like.

Recovery has been defined in numerous ways. The definition the author proposes has been developed, in part, by a consensus-building process involving professionals, family members, and people with mental illnesses in Connecticut (Davidson, Tondora, & O’Connell, 2007). They describe recovery as being connected to your community in meaningful ways; having an identity separate from one’s condition; and having a life that is satisfying, fulfilling, and contributing to others despite of or within the limitations imposed by that condition.

A recovery-oriented program is one that provides the knowledge, skills, support, and resources to facilitate the achievement of each individual’s recovery. Giving a program a new recovery title or adding a new recovery policy statement will not work unless there is a clear understanding and implementation of the current research, professional practice, family experience, and consumer experienced-based components of a recovery-oriented program. This paper will pull this varied information together and present it in terms of guidelines for what constitutes a recovery-oriented program with examples of program policy statements supporting the components. And of course, it will be necessary to periodically review and update these guidelines as our knowledge grows. Not all components need to be in the same program, but they need to be an active part of the local helping community and readily accessible to all members of the “recovery community.”

Recovery  Program Components

 Strongly Affirm Recovery in the Mission Statement
  Programs need to affirm President Bush’s New Freedom Commission on Mental Health Report (2003) and the state Departments of Mental Health State Plan statements on family- and consumer-directed care and the new vision of recovery. The President’s New Freedom Commission on Mental Health report is being widely adopted by individual state Departments of Mental Health and mental health programs across the country. Local, state, and community program adaptations should be developed collaboratively between organizations, family members, people with mental illnesses, and community representatives. It is important that the Mission Statement derived from this consensus-building process focus on the recovery vision rather than the essential components, policy changes, or practice guidelines. The recovery vision refers to outcome—and the components, policy changes, and practice guidelines are the means to achieve the recovery outcome. An organization needs to be clear about its vision first and only then can it adequately focus on the means required to achieve that vision.

  A Climate of Hope
  Hope is essential to building a life for anyone. The accumulation of traumatizing, devaluing experiences can wear people down over time, and lead to the giving up of hope. Hopelessness, apathy, and indifference are best seen not as problems people have but as learned solutions to shattered lives. They are strategies that desperate people adopt in order to stay alive (Deegan, 1996) and to manage their sense of powerlessness (Mack, 1994). Without hope, it is hard to cope. People just barely survive—they don't feel alive or a part of life. Their personal vitality is broken and numbed. We also certainly know of many examples where hope has been taken away—where someone has said there is no hope. This is especially devastating to people with psychiatric disabilities. And, if these words come from a mental health professional, it is doubly disabling.

Hope is a combination of empathy with respect to the person’s present life (i.e., what is) and also with respect to the person’s capacity (i.e., what can be). Both of these aspects of hope need to be communicated to the person and can be parallel processes. If the helper focuses solely on capacity, the person may experience him or her as a “cheer leader” who can not adequately acknowledge his or her full experience. The present, or “what is,” is often painful and sometimes terrorizing because of the illness, symptoms, past history, prejudice, or discrimination. These experiences need to be validated and integrated in order for the person to rebuild his or her life. Helping a person focus on their aspirations and goals represents respect for the person’s capacity, and gives the person hope. It is a way of saying “I assume you have aspirations and goals and I expect you to be able to achieve them.”

Mutuality means that each person brings something important to the interaction. Hope, for example is often described as something the provider holds for the person with the mental illness. While this may be initially true, the bearer of the hope can shift. There are many instances where the provider may feel frustrated or even hopeless concerning the person they are helping and then the person they are helping may do or say something which shifts the provider back to a hopeful place. Relationships that are mutual are respectful. Each person is open to giving to and learning from the other. A mutual relationship can generate many wonderful surprises for each person (Eldridge, Surrey, Rosen, Baker Miller, 2003).

Policy example: Providers will empathize with the person’s situation in life and help each person to identify aspirations and goals and provide the knowledge, skills, support, and resources to achieve them.

 Affirm Key Recovery Values
  The explicit affirmation of key recovery values is an important component of a recovery-oriented program. These recovery values need to be articulated in the policies of the program; providers should be trained in the theory and implementation of the values, and should receive ongoing supervision to develop their own expertise in implementing the values. These key recovery values include:

Participation: People need to be involved in all aspects of their treatment and recovery processes. The 2003 President’s New Freedom Commission on Mental Health report stated that: “Nearly every consumer of mental health services…expressed the need to fully participate in his or her plan for recovery” It must be assumed that people are able to participate even when it doesn’t look like they can. Encouraging participation may take persistence and patience on the part of the helper. Participation can grow over time as people develop confidence in their ability to act in their own interest.

Self-determination/choice: People have the right to be in the center of decisions that affect their lives. Choice empowers people because it gives them some control over their lives. Choice, even when it involves failure, builds a sense of possibility rather than a sense of impossibility. In the Report of the 2004 Consumer Direction Initiative Summit, Transforming Behavioral Health Care to Self-Direction (SAMHSA, 2004), the term “self-directed care” was defined as a system that is “intended to allow informed consumers to assess their own needs . . . determine how and by whom these needs should be met, and monitor the quality of services they receive” (Dougherty, 2003). A general   principle is that self-determination is essential to everyone’s mental health and well being and is often regarded as a basic human right (Adams, Grieder, Nerney, 2005).

Empowerment: Empowerment means the person is able to say “I can” rather than “I can’t.” Empowerment is built through achieving success in life’s many tasks, even small ones. As successful experiences accumulate, peoples’ sense of empowerment gradually grows. Loss of power is a loss of one’s ability to act in one’s own interest—this is a loss of belief in oneself. Loss of power is also the loss of one’s sense of agency and vitality—the inability to experience oneself as an active and vital agent. People with psychiatric disabilities often experience themselves as having no power, no real choices. Power is further lost through the severing of our connections. When our connections are broken, we feel powerless and despairing (Lifton, 1996). There are a variety of forms of power. The power that is healing, that is more than oneself, that can move another person, is acquired through our relationships. It is power with people not over people. It is a power acquired through reconnecting with oneself, others, our environments, and meanings in life.  It is a power acquired through a deepening of our capacity to experience life fully and directly without being overwhelmed or intimidated. It is a power acquired by coming alive (Mack, 1994).

Growth potential: It is important to see people’s growth potential regardless of current difficulties or disabilities. Their growth potential may appear small at any given moment but it needs to be seen as an important opportunity for developing confidence and empowerment. Getting hope from others and having others show confidence in you is reported by many people with mental illnesses as an important turning point in their lives. Hope can be contagious and can plant a seed of promise, a new potential perspective, in a person who is distraught and despairing (Deegan, 1995).

Community focus:  Providers need to facilitate integration into community life by providing opportunities for the development of multiple roles to discover and create an identity that is separate from and greater than the illness such as a student, worker, volunteer, neighbor, friend, and one who can enjoy life. The identity of “patient” is very debilitating and needs to be actively countered by providing opportunities for new identities through acquiring the ordinary roles in life.

Whole person/family centered: People need to be treated as whole human beings, with natural responses to a profound trauma, and with a deeply felt connection to their family regardless of their current relationship. People with mental illnesses and their family members are not to be diminished or dehumanized in any way by their need for help.

Recovery as an expectation:  It is clear from the research and many personal accounts by people with mental illnesses that most people with serious mental illnesses recover. By recover we mean that people can work, have a social life, have an intimate relationship, live in housing of their choice, have an identity separate from the illness, and contribute to their community. We also know that there are many factors that enhance the recovery process—and some that inhibit it (Davidson, Harding, & Spaniol, 2006; Davidson, Harding, & Spaniol, 2005; Whitty, 2008). We can not promise people that they will recover but we can say that most people have recovered and that with assistance they have a good chance of having a life that is satisfying, fulfilling, and contributing. Because we currently have no way of accurately predicting who will recover it is important to assume that the person we are helping has the potential for recovery.

Policy example: Providers will affirm in their practice the above recovery values essential to a recovery-oriented program.

 Provide Acute and Ongoing Psychiatric Care
  There are a variety of interventions and resources that have been shown to be helpful in a person’s recovery process. These include crises intervention which is necessary to care for someone with an acute onset of a mental illness or for periodic crises that arise in the recovery process. Inpatient/outpatient treatment is required to help stabilize a person in a crisis and to assist with the re-entry into his or her community.  Assertive community treatment involves actively reaching out to people in need of special assistance in coping with the debilitating and persistent nature of mental illnesses and co-occurring disorders. Respite facilities provide an opportunity for people to resolve crises without hospitalization. Transitional and supported housing provides residential options as people are released from hospitals. Case management helps people to maintain themselves in the community and to rebuild their lives.  A Hot-line provides a regular opportunity where people in crises can talk to another human being about their current concerns or worries. A Warm-line helps people who are lonely or isolated to connect with a compassionate listener.

Policy example: The program will make available, assist in developing, or connect to in the community, the above essential elements of acute and ongoing psychiatric care.

Availability of Primary Health Care
Consumers of mental health services die an average of 25 years earlier than the general public (Everett, Mahler, Biblin, Ganguli, & Mauer, 2007).  Unfortunately, many medical problems of people with mental illnesses go undetected or untreated (Druss, et al., 2008). And their health is further complicated by lack of attention, ignorance, poverty, and neglect. As Lauren Spiro Director of Public Policy, National Coalition of Mental Health Consumer/Survivor Organizations has said in a recent presentation at the 2007 National Wellness Summit for People with Mental Illness (Spiro, 2007):

 

Each individual’s life depends on the society they live in and the services and supports that are available to them.  To frame the co-morbidity and early mortality rate as simply a medical issue is not only inaccurate but an injustice to everyone.  The problem of co-morbidity and early mortality is an indicator of a broken system within a broken society.  The coalition was formed because the survival of our brothers and sisters is being threatened by the oppressive policies, services and attitudes of the system and of society. We die young because we have no hope.  We die young because our dreams have been crushed.  We die young because our voice is neither heard nor understood.  We die young because many of us live in poverty, and some of us live on the streets.  We die young because our physical health needs are routinely ignored, often because any problems we have are attributed to our mental illnesses. 

Clearly, attention to basic health needs is critical in a recovery-oriented program as well as attention to other aspects of the person’s life that threaten their health and wellness.

Policy example: The program will make available, assist in developing, or connect to in the community, the above essential elements of acute and ongoing medical care.

 Interventions for the Psychosocial Impacts Prior To, During, and After the Acute Onset of the Illness
  The onset of a mental illness is a trauma for the whole family, including the person with the illness. And with trauma comes shock, disorientation, panic, denial, and shattered lives. In addition there are the reoccurring traumas of living with a mental illness in our society. For example:

People have to live with the daily impact of prejudice and discrimination.

They often live with hopelessness and despair.  People live with the perceived impossibility of recovery.

They quickly lose faith in the mental health system.

They are believed and come to believe that they are unable to have normal roles such as student or worker,

There is often a long-period of recuperation that may last several years.

People experience plateaus with the appearance of no progress followed by periods of integration and consolidation.

Their normal developmental phases are interrupted.

Thus, many of the distresses people feel do not come from the illnesses but from the reoccurring traumas of living with a mental illness in our society. Interventions such as peer support groups, therapy, education, skill building, goal setting, and patience on the part of providers and families are required that support and understand the often extreme emotional responses to living with a significant and potentially long-term illness.

Policy example: Practitioners will be responsive to the ongoing psychosocial impact of the illness on the person and the person’s family members.

 Respect People and Their Unique Process
  Each person is unique and individual. No path is the same. Learn from the experiences of people with psychiatric disabilities. Assume people can learn how to lead their own lives. Given the information, skills, and support people can make life decisions. “Taking charge” is an important turning point in the recovery process. This is clearly evident in many research studies and from the recovery literature.

People, in their recovery process, tend to experience some variability in growth within the various developmental dimensions i.e., vocational, social, educational, physical, and emotional.  People will show variability from others and within themselves over time. This variability can be a function of barriers or facilitators to growth such as quality of personal contact, opportunities, treatment interventions, resources, personal drive, resilience, personal successes, and other factors. It is interesting to note that level of achievement on the various developmental dimensions is not solely or simply related to level of symptoms but also involves successfully engaging a wide variety of barriers and facilitators to recovery. People can have symptoms that they are managing or struggling to manage successfully and still be growing in their recovery.

Policy example: Practitioners will be responsive to the developmental needs, priorities, and choices made by their clients.

Value the Importance of Relationships and Connectedness
Personal stories of people with mental illnesses reveal a pervasive loss of interpersonal connectedness, loneliness, and isolation, yet a profound longing to be connected in meaningful ways to others (Davidson & Stayner, 1997). Yet people become so shocked by the illness, prejudice, and discrimination that they feel they cannot act on their own desires for contact (Magliano, et al., 2008). Providers, families, and peers can find opportunities for people to interact. Connecting can be very healing to the body and to the mind.  Providers need to teach interpersonal skills for selecting, building, maintaining, and repairing relationships.  Examples of rebuilding connections are:

Oneself: Provide opportunities for building confidence/self-esteem through meaningful roles. Loss of “roles” devastates a person’s sense of value and meaning.

Others: Provide interpersonal skills and opportunities for developing sustaining friendships and intimacy. Loneliness is a major problem for people with mental illnesses. Foster an atmosphere of a recovery community.

Broader environment: Provides opportunities for social programs, volunteering, and work that help people feel a part of the community and connected to others.

Meaning and purpose: While developing larger meaning and purpose is helpful (e.g., spirituality), people also need to identify their own personal purpose in life. A personal purpose often involves activities or relationships which make people feel useful and valued.

Policy example: Practitioners will be responsive to the connectedness needs of their clients.

Value Involvement
Listen to what people say they need and want. Encourage people to be involved in all the decisions that affect their lives. They are their lives to live. Assume that people can participate in decisions that affect their lives, even when it does not appear that they can. Listening can seem to be a fairly simple skill. Yet our projections of what we think people need often get in the way of hearing what we are being told. To be listened to is to be respected.

Policy example: Practitioners will encourage clients to be involved in all decisions that affect their lives.

Include Rehabilitation and Skill Building
Education and skill building are critical interventions. Focus on strengths. Help people to build a life. The tendency historically has been to focus on pathology. Focus on strengths builds up confidence and self-esteem. It provides an opportunity to be successful. Individualized goal setting provides assistance in setting personal goals and the steps to achieve them. Setting and working toward goals is an important part of the recovery process. Without ongoing goal setting programs are at risk of becoming sheltered workshops or social clubs and people are at risk of languishing in hopelessness. Rehabilitation provides skills and opportunities for developing job skills, finding work, maintaining work, developing a career, and continuing one’s education (Corrigan, Barr, Driscoll, & Boyle, 2008). People with psychiatric disabilities have been found to be working at all levels of employment (Russinova, Wewiorski, Lyass, & Rogers, 2003).

Policy example: Practitioners will encourage clients to set goals and provide the knowledge, skills, and supports to achieve those goals.

Involvement of Family Members
Providers need to value family involvement and understand its importance in order to assertively reach out to family members. Programs can establish policy for family involvement, develop guidelines, train staff, and supervise staff in implementation (Bogart & Solomon, 1999). Program can encourage a collaborative alliance among all parties. Providers need to involve families in the planning, implementation, and monitoring of all interventions. Shared decision making can reduce the isolation and tension the various participants often feel. Decisions that are made are more likely to meet the needs, aspirations, strengths, and limitations of those involved. And, crises are more likely to be avoided or interrupted. Providers need to believe that families do not cause mental illnesses and that there is a substantial research supporting family involvement as useful to recovery. When family members are involved, people do better (Fischer, et. al., 2008).

Policy example: Practitioners will educate clients about the value of family involvement and encourage signing of appropriate confidentiality release forms. They will encourage clients to involve family members as part of their treatment and rehabilitation team.

The Active Presence of Recovered People at All Levels of the Treatment and Rehabilitation Process
People need models and mentors, i.e., other people with a psychiatric disability who have succeeded in their lives. The active presence of recovered people is common practice in recovery programs for people with other disabilities. People who are more fully recovered can and do serve at all levels of mental health programs from directors to peer professionals. Programs are also being entirely run by peers. Peer support or modeling can be an important factor in helping people to cope, to feel that they are not alone, and to have hope for their own recovery.

Policy example: Programs will educate staff about the value of peer support and actively and assertively involve peers who are in recovery in working for and volunteering for the program.

Provide Opportunity to Resolve Impact of Substance Abuse
There is a well documented need for the integration of mental health and substance abuse services for people with dual disorders (Doyle-Pita & Spaniol, 2002). Fifty percent or more of people with mental illnesses will experience a co-occurring substance disorder at some point in their lives. For many, this will be an ongoing struggle with the need for an integrated treatment program and a long-tem relationship with an assertive community treatment team.

Providers need to understand that untreated substance abuse is a major barrier to recovery and that people in recovery from dual disorders are a very important part of any treatment team. People with dual disorders often need ongoing interventions for substance abuse related symptoms—which usually begin prior to or after the onset of the mental illnesses. Substance abuse often leads to further trauma, particularly from prejudice, discrimination, and violent victimization, which are common among people with severe mental illnesses.

Policy example: The program will provide integrated dual disorder services including regular substance abuse assessments to new clients.

Provide Fitness and Wellness Opportunities
There is a strong connection between wellness and recovery (Hutchinson, Skrinar, & Cross, 1999). Wellness programs such as nutrition, weight management, yoga, meditation, regular exercise, good physical health care, and symptom management, with programs and encouragement for active involvement, are essential elements of a recovery-oriented program. It is also important to provide opportunities for self-determined alternative choices such as Tai Chi, homeopathic medicine, vitamins, massage, and acupuncture.

Providers need to educate people with mental illnesses about intimacy and human sexuality. Help people learn the social skills necessary to find and maintain intimacy. Close personal relationships are important for recovery. Sexually transmitted diseases, especially HIV infection, are a high risk factor for people with mental illnesses.

Providers need to train people with mental illnesses in writing a Relapse Management Plan and an Advanced Directive Plan with a clearly designated surrogate decision maker. The Wellness Recovery Action Plan (WRAP, Mary Ellen Copeland) is an effective course for helping people identify and self-monitor symptoms of the illness and of stress. The WRAP is also effective for developing new beliefs and ways of thinking and challenging self-defeating thoughts. An Advanced Directive Plan gives people choices when they may be unable to make them themselves. The plan identifies how you want to be treated; what place you want to be treated at; who you want to be treated by; what medications you want to receive; and who will be making the decisions for you. The designated surrogate decision maker is the person, identified by the person with the mental illness, who will have final say over all treatment decisions. This is an important role to have someone take when we are unable to make our own decisions. So, the choice should be carefully thought through and put in writing in the plan.  Unfortunately, Advanced Directive Plans are not always followed faithfully by psychiatric staff so the designated surrogate decision maker needs to be particularly one who could be actively involved during crises (Srebnik & Russo, 2007).

Policy example: The program will provide comprehensive and ongoing wellness and fitness training and activities to clients.

Provide Long-Term Commitment to People
People with mental illnesses have a right to assistance as long as it is needed and required. This may require a long-term commitment by their program. The program should have a “no fail” policy. “No fail” means that people may need “time outs” but that the program is willing to take them back and continue working with them if they want. The use of force, either obvious or subtle is never a “first option” intervention. People are treated with respect and there is tolerance for multiple personal perspectives on what is helpful or not in their recovery journeys. People are expected to take responsibility for their own recovery. People should not be looked at as “resistant” only as people with another perspective on what is helpful. Understanding another person’s perspective creates intimacy and trust, which are essential to helping people on their recovery journey. Providers and people with mental illnesses will need to “hang in there” through the inevitable emotional upheavals. Both need their own support to manage the normal stresses of the helping and the recovery process, to avoid over-reacting in the moment, and to avoid burn-out.

Policy example: The program will provide a long-term commitment to clients and adopt a no-fail policy.

Provide Opportunities to Contribute to Others
Recovering the capacity to be helpful to others is an important turning point in the recovery process. Many people find that contributing to others with mental illnesses is an important aspect of their recovery. Their contributions can be within programs where those who are further along help those who are less far along, or, by contributing or volunteering in the community.

Policy example: The program will provide ongoing opportunities for clients to contribute within the program and within the community.

Ongoing Education and Support for Providers, Family Members, People with Mental Illnesses, and the Community.
The provider’s role has changed from that of all-knowing, all-doing caretaker to that of coach, facilitator, or mentor (Adams, Grieder, & Nerney, 2005). The family’s role has changed from that of the cause of the illnesses to a resource in the recovery process. The person with the illness’s role has changed from hopelessness to an expectation for self-determined recovery. Education and support must reflect these profound changes.

All parties need knowledge about recovery basics, hope, expectation for recovery, choice, listening, whole-person orientation, collaboration, supporting one another, encouraging self-care, knowledge of the illnesses, medications, side effects, and available resources. And, they also need the skills and positive attitudes to support the knowledge.

Policy example: The program will provide ongoing continuing education for providers, family members, people with mental illnesses, and the community.

Advocacy
Advocacy is an essential component of a recovery-oriented program. All parties must share in that advocacy for it to be effective and to achieve its goals. Programs can establish a collaborative process for assessing and understanding the challenges and needs of all parties. This will lead too a comprehensive grasp and consensus of the policy and programmatic implications of these needs and a collaborative strategy for change.

Policy example: The program will provide ongoing advocacy to improve the daily lives of people with mental illnesses, their families, and providers.

CHALLENGES TO A CLIMATE OF HOPE AND RECOVERY
There are many challenges to creating a climate of hope and recovery.
 
Lack of Awareness and Inertia
NAMI hopes to create more awareness. There is a programmatic and personal inertia that needs attention. Programs and people tend to keep doing what they are doing. Change is difficult and the change to a climate of hope and recovery requires a change in culture, knowledge, skills, attitudes and the supervision to embed the changes into practice. The consensus-building process mentioned above under Advocacy helps to embed the needs cognitively and emotionally in the various audiences. It helps to overcome the “numbing” of people to the needs of people with mental illnesses.  Lack of Support for
 
Self-Help
We need to move from a professionally driven system to a client driven system. Self-help is often misunderstood in mental health although it is well established in other disability areas. Helpers need to be chosen for competence as well as for presence of a disability.

The One Model Trap
We need to advocate for a variety of interventions and opportunities. There are many evidence-based practices and they need to be individualized for each person. There are many paths to recovery.
 
  Retrenchment
  Retrenchment means continuing to do the same thing rather then change. This occurs when people get overwhelmed by change or are not well prepared, trained, and supported in it. 
 
Evidence-Based Practice vs. Process
Evidence-based practices are very important but we can not lose sight of the human variables in interventions. Hope, positive expectations, and optimism are important adjuncts to evidence-based practices. 
 
Funding Neglect
Mental health has not been a public priority. It is not even on an equal “playing field” with respect to funding for other disability groups. Parity needs to be taken seriously in terms of reimbursement but also in terms of up-front funding for mental health that is at least on a par with funding for other disability groups.

Conclusions
People with mental illnesses can recover and build a self-determined life for themselves in communities of their choice. If the basic components of a recovery-oriented program are in place, their hopes for a fuller life can be more likely realized. It is hoped that by providing this brief summary of a recovery-oriented program providers, family members, and people with mental illnesses can better evaluate the closeness of their programs to what is now known that works.

 

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