In Support of Recovery-Based Systems Transformation

System Transformation Issues

Policy

Mental Health America (MHA) envisions a just, humane and healthy society in which all people are accorded respect, dignity and the opportunity to achieve their full potential free from stigma and prejudice. Consistent with this philosophy, MHA supports and promotes services and systems that facilitate and promote the capacity of people with mental health and substance use conditions to live a life that they value. This goal has become the aim of the recovery movement, led by people with lived experience of their own restored capacity. Using the Alcoholics Anonymous term, but with a mental health emphasis, the mental health movement has embraced the recovery movement.

MHA believes mental health and substance abuse systems transformation will occur only when all stakeholders view recovery as the primary goal, defined broadly as a journey of healing and transformation enabling a person with a mental health or substance use condition to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.[i]

Although the recovery movement was a response to the discouragement and dependency experienced by people with serious and persistent psychiatric disorders, recovery applies to the entire continuum of mental health needs: Those experiencing life crises, declining mood or other prodromal symptoms can embrace recovery early to ensure that they can continue their life in the community and thrive, while those with serious and persistent mental health needs can begin working toward defining and establishing the life they want for themselves in the community. Note that recovery is separate from, but can work in tandem with, wellness, which is the positive aspect of mental health promotion, whether or not the individual is experiencing specific mental health treatment needs.

MHA is committed to the principle that every individual with a mental health or substance use condition can enjoy recovery and wellness. Individuals must define for themselves what recovery means to them – what their personal goals are, what it means to live a fulfilling and productive life, and how to manage their condition effectively. The individual must be able to define his or her recovery free from (most) cultural judgments about what constitutes a meaningful and productive life.[ii] This is important not only for the individual’s autonomy, but also for the community, allowing it to grow in acceptance of people in recovery, living with behavioral health conditions. For an individual to engage in the recovery process, it is important that she or he possess hope that recovery is possible, have choices regarding community-based services and supports, have access to resources that allow for basic needs to be met such as food, clothing and housing, and have a strong community network. Such a network can include but is not limited to friends, family and faith-based organizations.

MHA is especially concerned about the stigma associated with people who identify themselves as “transsexual” or “transgender.” Being transgender “implies no impairment in judgment, stability, reliability, or general social or vocational capabilities.”[iii]  However, many transgender individuals are diagnosed with gender dysphoria, a condition that is characterized by debilitating distress and anxiety resulting from the incongruence between an individual’s gender identity and birth-assigned sex. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders-5[iv] codifies the diagnostic criteria for gender dysphoria.

Transgender children often experience intensified gender dysphoria and worsening mental health as the hormonal and anatomical changes associated with puberty cause the body to develop in ways that diverge from the child’s gender identity. If untreated, gender dysphoria can cause debilitating distress, depression, impairment of function, substance use, self-mutilation to alter one’s genitals or secondary sex characteristics, other self-injurious behaviors, and suicide.[v] Transgender individuals also are frequently subjected to prejudice and discrimination in multiple areas of their lives, which exacerbates these negative health outcomes.

In the last few decades, transgender people and those suffering from gender dysphoria have gained widespread access to gender-affirming psychological and medical support. The consensus protocols are laid out in the Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People (Version 7) developed by the World Professional Association for Transgender Health (“WPATH”)[vi] and endorsed by many mental health advocacy organizations, including, by his policy, MHA.[vii]

Social transition—i.e., living one’s life fully in accordance with one’s gender identity—is often a critically important part of treatment.  This typically includes publicly identifying oneself as that gender; adopting a new name; using different pronouns; grooming and dressing in a manner typically associated with one’s gender identity; and using restrooms and other single-sex facilities consistent with that identity. Social transition is best understood as a recovery process, consistent with the process of self-definition which underlies all mental health recovery.

Background

MHA was established in 1909 by former psychiatric patient, Clifford W. Beers. During his stays in public and private institutions, Beers witnessed and was subjected to horrible abuse. From these experiences, Beers set into motion a reform movement that took shape as MHA. The efforts of Beers and other early pioneers of this movement set a course for reform, to the point where today, and increasingly, if treatment and support are provided, recovery from mental health and substance use conditions is the expected outcome for many people with lived experience of mental health conditions.

In July 2003, the President's New Freedom Commission on Mental Health issued its report, "Achieving the Promise: Transforming Mental Health Care in America."[i] An overarching recommendation in the report was that services and treatments for persons with psychiatric disabilities must be recovery-oriented and consumer-driven.

On December 16-17, 2004, the Center for Mental Health Services (CMHS) convened a National Consensus Conference on Mental Health Recovery and Systems Transformation. Over 110 consumers, family members, providers, researchers, advocates, State and local mental health authorities, Federal partners and others met to develop a consensus statement on mental health recovery.

The resulting National Consensus Statement identified the 10 key elements of recovery as follows:

  • Self-Direction: Consumers lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life. By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals.
  • Individualized and Person-Centered: There are multiple pathways to recovery based on an individual’s unique strengths and resiliencies as well as his or her needs, preferences, experiences (including past trauma), and cultural background in all of its diverse representations. Individuals also identify recovery as being an ongoing journey and an end result as well as an overall paradigm for achieving wellness and optimal mental health.
  • Empowerment: Consumers have the authority to choose from a range of options and to participate in all decisions—including the allocation of resources—that will affect their lives, and are educated and supported in so doing. They have the ability to join with other consumers to collectively and effectively speak for themselves about their needs, wants, desires, and aspirations. Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life.
  • Holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. Recovery embraces all aspects of life, including housing, employment, education, mental health and healthcare treatment and services, complementary and naturalistic services, addictions treatment, spirituality, creativity, social networks, community participation, and family supports as determined by the person. Families, providers, organizations, systems, communities, and society play crucial roles in creating and maintaining meaningful opportunities for consumer access to these supports.
  • Non-Linear: Recovery is not a step-by-step process but one based on continual growth, occasional setbacks, and learning from experience. Recovery begins with an initial stage of awareness in which a person recognizes that positive change is possible. This awareness enables the consumer to move on to fully engage in the work of recovery.
  • Strengths-Based: Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals. By building on these strengths, consumers leave stymied life roles behind and engage in new life roles (e.g., partner, caregiver, friend, student, employee). The process of recovery moves forward through interaction with others in supportive, trust-based relationships.
  • Peer Support: Mutual support—including the sharing of experiential knowledge and skills and social learning—plays an invaluable role in recovery. Consumers encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community.
  • Respect: Community, systems, and societal acceptance and appreciation of consumers —including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery. Self-acceptance and regaining belief in one’s self are particularly vital. Respect ensures the inclusion and full participation of consumers in all aspects of their lives.
  • Responsibility: Consumers have a personal responsibility for their own self-care and journeys of recovery. Taking steps towards their goals may require great courage. Consumers must strive to understand and give meaning to their experiences and identify coping strategies and healing processes to promote their own wellness.
  • Hope: Recovery provides the essential and motivating message of a better future— that people can and do overcome the barriers and obstacles that confront them. Hope is internalized; but can be fostered by peers, families, friends, providers, and others. Hope is the catalyst of the recovery process. Mental health recovery not only benefits individuals with mental health disabilities by focusing on their abilities to live, work, learn, and fully participate in our society, but also enriches the texture of American community life. America reaps the benefits of the contributions individuals with mental disabilities can make, ultimately becoming a stronger and healthier Nation.[ii]

MHA agrees that each of the tenets articulated by the National Consensus Statement should be incorporated into behavioral health systems transformation, at both the individual and systems levels. The National Consensus Statement sets ambitious goals for the recovery movement, which MHA enthusiastically supports.

Subsequently, in August 2010, leaders in the behavioral health field, consisting of people in recovery from mental health and substance use problems and SAMHSA (the Substance Abuse and Mental Health Services Administration, the parent of CMHS), adopted a new working definition of recovery, which departs slightly from the 2004 definition quoted above: “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.”[iii] Through the Recovery Support Strategic Initiative, SAMHSA subsequently delineated four major dimensions that support a life in recovery:

  • Health: Overcoming or managing one’s disease(s) or symptoms—for example, abstaining from use of alcohol, illicit drugs, and non-prescribed medications if one has an addiction problem— and for everyone in recovery, making informed, healthy choices that support physical and emotional wellbeing.
  • Home: A stable and safe place to live.
  • Purpose: Meaningful daily activities, such as a job, school, volunteerism, family caretaking, or creative endeavors, and the independence, income and resources to participate in society.
  • Community: Relationships and social networks that provide support, friendship, love, and hope.

The new definition also includes ten “Guiding Principles in Recovery:”

  • Hope
  • Person-Driven
  • Many Pathways
  • Holistic
  • Peer Support
  • Relational
  • Culture
  • Addresses Trauma
  • Strengths/Responsibility
  • Respect

Significantly, the Consensus Statement includes self-direction (See MHA Position Statement 36[iv]) and empowerment, which are reflective of the broader aspirations of the recovery movement, but these principles were deleted from the Guiding Principles. The Guiding Principles are quite similar to the Consensus Statement in other respects, but the important additions of cultural competence and trauma-informed treatment in the 2010 definition remedy gaps in the original definition:

  • Recovery is culturally-based and influenced. Culture and cultural background in all of its diverse representations—including values, traditions, and beliefs—are keys in determining a person’s journey and unique pathway to recovery. Services should be culturally grounded, attuned, sensitive, congruent, and competent, as well as personalized to meet each individual’s unique needs.
  • Recovery is supported by addressing trauma. The experience of trauma (such as physical or sexual abuse, domestic violence, war, disaster, and others) is often a precursor to or associated with alcohol and drug use, mental health problems, and related issues. Services and supports should be trauma-informed to foster safety (physical and emotional) and trust, as well as promote choice, empowerment, and collaboration.

Call to Action

Although the movement of people personally affected by and coping with their mental illnesses has referred to itself as the “consumer” movement for at least the past fifteen years, there is general dissatisfaction with that term, and MHA proposes to stop using it in its position statements. Whenever the context permits, MHA will henceforth refer to “people in recovery from mental health and substance use conditions” or “people in recovery,” rather than “consumers.”  See Addendum to this Position Statement.

MHA supports people in recovery from mental health and substance use conditions to:

  • Understand their illness and that recovery is possible;
  • Explore treatment options and supports that match their desires, goals and strengths; and
  • Participate in peer support programs and explore leadership roles that can help others recover; and
  • Participate at all levels of the behavioral health system of care, including the formulation of policy.

MHA calls on public behavioral health systems and policy-makers to:

  • Incorporate the principles of recovery-based care into the mission and day-to-day activities of local, state and federal mental health departments and agencies;
  • Adopt the rehabilitation option under Medicaid;[i]
  • Invest in evidence-based and emerging practices that are community-based and consumer/family-driven and promote recovery-oriented outcomes;
  • Increase federal reimbursement for and state investment in recovery-oriented services, including exploration of a specific mental health enhanced Federal Medical Assistance Percentage (eFMAP), so long as any enhancement includes additional funds for the entire system of care, not just late-stage services; and
  • Ensure that people in recovery have meaningful involvement in the planning, delivery and evaluation of mental health service systems.

MHA encourages advocates to:

  • Educate decision makers that recovery is possible and is the expected outcome of proper treatment and supports;
  • Encourage state and county officials to adequately fund recovery-oriented systems of care.
  • Encourage public and private health plans and provider groups to use recovery outcome measures[ii] and recovery-oriented planning tools,[iii] to continuously improve the delivery of services.
  • Correct misinformation reported in the media with positive, factual, and prompt responses expressed with the dignity we demand for those who suffer from  behavioral illnesses;
  • Encourage the community to be welcoming and inclusive of all individuals and appreciate the value of diversity that self-directed recovery can provide;
  • Promote policies which are consistent with the recovery philosophy; and
  • Identify opportunities for people in recovery to have meaningful involvement in advocacy efforts in addition to the planning, delivery and evaluation of behavioral health services.

MHA encourages behavioral health practitioners to:

  • Utilize a strengths-based, individualized, recovery-oriented approach for all people in treatment;
  • Encourage and guide people in treatment to an active role in leading their own recovery; and
  • See individuals as whole human beings, not just as their illness.

MHA urges the media to:

  • Learn the facts about mental health and substance use conditions;
  • Report upon and portray mental illnesses and addictions with appropriate sensitivity; and
  • Recognize that stigmatizing language and attitudes impede effective treatment.

Effective Period

The MHA Board of Directors adopted this policy on March 9, 2019.   It will remain in effect for a period of five (5) years and is reviewed as required by the MHA Public Policy Committee

Expiration: December 31, 2024

 

[i] Substance Abuse and Mental Health Services Administration

[ii] The history of the mental health recovery movement is told succinctly at http://en.wikipedia.org/wiki/Recovery_approach

[iii] Am. Psychiatric Ass’n, Position Statement on Discrimination against Transgender and Gender Variant Individuals (2012), Https://Psychiatry.Org/File%20Library/About-APA/Organization-Documents-Policies/Policies/Position-2012-Transgender-Gender-Variant-Discrimination.Pdf.

[iv] American Psychiatric Association, Understanding Mental Disorders (American Psychiatric Publishing, Washington, 2015).

[v] See, e.g., DSM-5, supra, at 455, 458; Stephanie A. Brill & Rachel Pepper, The Transgender Child:  A Handbook for Families and Professionals 202 (2008) (discussing risk of self-mutilation).

[vi] https://www.wpath.org/about/mission-and-vision

[vii] The recommended treatment for transgender people with gender dysphoria includes assessment, counseling, and, as appropriate, social transition, puberty-blocking drug treatment, hormone therapy, and surgical interventions to bring the body into alignment with one’s gender identity.

[i][i] http://store.samhsa.gov/product/Achieving-the-Promise-Transforming-Mental-Health-Care-in-America-Executive-Summary/SMA03-3831

[ii] Substance Abuse and Mental Health Services Administration

[iii] Substance Abuse and Mental Health Services Administration

[iv] http://www.mentalhealthamerica.net/positions/self-determination

[i] According to a 2010 HHS report: “In 2005, 46 states used the Rehabilitation option to provide services for persons with a serious mental illness; 33 states used the Rehabilitation option to provide other services.40  http://aspe.hhs.gov/daltcp/reports/2010/primer10.htm

[ii] Http://Www.Nyc.Gov/Html/Doh/Downloads/Pdf/Mh/Measuring-Recovery-Toolkit.Pdf

[iii] One example would be Wellness Recovery Action Plans (WRAP), which are explained at Http://Www.Mentalhealthrecovery.Com/Wrap/

ADDENDUM

According to the Oxford English Dictionary, “patient” is a Middle English noun, unrelated to the adjective “patient.” It is derived through Old (Norman) French, from the Latin patient-'suffering', from the verb pati. Thus, before it became a medical term, the word did not refer to waiting room etiquette or suspension of civil rights, but to a person in pain and anguish from the effects of an illness.

The terms “patient,” “inmate,” “client,” and “consumer” have all passed from popular support to dissatisfaction. This is awkward, since the term “consumer” is, for better or for worse, still in general use. The commercial aspect of the term ill-suits the original meaning of a person suffering from illness, even if in the somewhat more militant “consumer/survivor” form. “People with a mental illness” is awkward but precise and in proper “people-first” form. “People with lived experience of (a) mental illness,” which has been used by many consumers in recent years, has not yet caught on more generally, and has “too many notes.” It also has the defect of describing families, friends and advocates as well as consumers. “Peers” is a good way for peers to describe each other but is inaccurate and confusing if used to describe the set we now identify as “consumers.”

The last consensus was on “consumer,” but many people are now dissatisfied with that term. The consumer movement, which gave us that term, has not yet settled on a descriptor to replace it. When there is a consensus, and whenever that consensus changes, MHA should be willing to adopt the movement’s own descriptor, but in the meanwhile, it should try to respond.

“Person with a mental health condition” or “person in treatment for a mental illness” are obvious and straightforward terms that are fully descriptive and in appropriate form. It is MHA’s standard usage, having abandoned “the mentally ill” as needlessly stigmatizing. “Person with [or in treatment for] a mental health or substance use condition” is more inclusive, refusing to put people with addictive disorders in a separate silo in accordance with MHA’s 2007 mission statement change. It may be the best choice for that reason. But it focuses on mental illness rather than mental health; on addiction rather than on sobriety. It focuses on diagnosis, not on pain and anguish, and it ignores recovery altogether.

Thus, Mental Health America advocates a more positive spin, using “people in recovery from mental health and substance use conditions,” “people in recovery” for short. The objection has  been raised that people with emotional conditions that are not evidenced by acting out could feel excluded if the shorthand term “behavioral health” were used, so it will be used only to describe the provider community that uses that descriptor. Of course, people with mental health or substance use disorders could feel stigmatized by being lumped together, and recovering alcoholics could resent mental health taking over their label, but these are unfixable problems.

Thus, “people in recovery from mental health and substance use conditions,” would include people in recovery from alcohol and other addictions, who already use the “recovery” term, and it would highlight MHA’s embrace of recovery-oriented care across the entire spectrum of mental health and substance use conditions. The only substantive objection is that “people in recovery” leaves out the many people with mental illness who are not (yet) in recovery, who are spiraling downward. In appropriate places, an alternative term like “people with serious mental illness” may be appropriate to acknowledge that fact, but references to the consumer movement or to demonstration projects can surely assume “recovery-orientation,” and it is sufficient to flag this issue to resolve it without abandoning the principle of “recovery-orientation.”

The objective should be to use the word “person” alone whenever that fits, and “person with a mental illness” or “person in treatment” (or another variant starting with “person”) whenever that fits better, but otherwise MHA will change the terminology in its position statements to: “people in recovery from mental health and substance use conditions,” “people in recovery” for short.