A
Call For change:
Toward
A RECOVERY-ORIENTED
Mental
Health Service SYSTEM
for
Adults
A
Publication
Of
The
PENNSYLVANIA
Office
of Mental health
AND
Substance Abuse Services
ACKNOWLEDGEMENTS
Recovery Workgroup Members
Kim
Anglin, Linda Bakmaz,
Shelley Bishop, Thomasina Bouknight, William Boyer,
Mary Lyn Cadman, Michael Chambers, Timothy
Connors, Michele Denk, Mary Jo Dickson, Virginia
Dikeman, Kate Donegan, Suzanne
Elhajj, John Farmer, Cheryl
Floyd, Hickman Gardner, Jeff Geibel, Scott
Heller, Shirley Hopper-Schaech, Jim Jordan, Diane Keefer, George
Kimes, Mary Kohut, Glenn
Koons, Gayle Lorenz, Wendy Luckenbill,
Robert Manrodt, Jim McCormack,
Edna McCutcheon, Karen Morton, Nancy Porter, Robert
Primrose, Suzanne Ralph,
Mary Ellen Rehrman, Joseph Rogers, Jean Rush,
Mary Jeanne Serafin, Lewis Silverman, Betty Simmonds, Caroline
Smith, Kenneth Thompson, Sue
Walther, Carol Ward-Colasante,
Rae Weber, Danny Wildasin,
Wendy Wood, Dave Wooledge, Linda Zelch
Recovery Steering Group Members
Linda
Bakmaz, Shelley Bishop, William Boyer,
Mary Lyn Cadman, Michelle Denk, Cheryl Floyd, Jeff
Geibel, Scott Heller, Diane
Keefer, Mary Kohut, Jim McCormack,
Betty Simmonds, Caroline Smith, Kenneth
Thompson, Linda Zelch
Drexel University College of Medicine/Behavioral Healthcare Education
Taylor
Anderson, Donna McNelis, Brenda
Weaver
Consultant
Laurie
Curtis
A Message from Joan Erney
It is with great optimism that I
present A Call for Change: Toward a Recovery-Oriented Mental Health
Service System for Adults. As I traveled
around the state recently participating in the Service Area Planning meetings,
it became clear to me that we are in the midst of an exciting awakening of
hope, realization, and change. The
meaningful stories, the emerging leadership, and the compelling impact that a
strong consumer voice is having across this Commonwealth is already in
evidence. This document is meant to
serve as a further tool to move us toward our statewide vision that assures
that every person will have an opportunity for growth and recovery.
I wish to thank the many
individuals who stimulated our thinking and committed to the hard work of
developing this document, especially the work of the OMHSAS Advisory Committee
Recovery Workgroup. A Call for Change clearly represents and honors the voice of
individuals who are experiencing recovery and their undying advocacy to
establish the realization nationally and in Pennsylvania
that recovery from mental illness happens!
Recovery is the goal!
A
Call for Change establishes a firm foundation for the Pennsylvania
transformation to a recovery-oriented mental health system. It offers an understanding of how we’ve
arrived at this time of recovery transformation, provides a concise definition
of recovery, and further consideration of what a recovery-oriented system is
and is not. Indicators are provided to
serve as critical reference points for services, agencies and county mental
health programs looking for more specific strategies for transforming to more recovery-oriented
services. A Call for Change highlights the challenges we have yet to address
and the need for us to engage in open, honest discussion and debate about these
issues.
Most importantly, we are called to
take the steps and risks associated with true transformation. As noted by William A. Anthony, PhD.,
“Massive system changes must occur if the vision of recovery is to become a
reality for an ever-increasing number of people with severe mental illnesses. For this very different vision to become
reality, brilliant leadership is required.”
A Call for Change recognizes
and calls upon the brilliant leadership of all who are part of our system –
consumers, family members, advocates, providers, policy-makers and
administrators – to effect true transformation in Pennsylvania.
OMHSAS is dedicated to building on
the foundation of A Call for Change,
so that the opportunity of recovery is fully supported for all who are served
in our public mental health system. We
look forward to your dedication in working with us to achieve this goal.
Table of Contents
ACKNOWLEDGEMENTS.. iii
A
Message from Joan Erney.. iv
Table
of Contents.. v
Why
a Call for Change?. 6
Introduction.. 6
Envisioning a Transformed
System in Pennsylvania.. 8
Role of the OMHSAS
Advisory Committee and the Recovery Workgroup. 9
Scope and Role of A Call For Change.. 9
The
Roots of Recovery in Mental Health.. 12
Deep Roots and a Legacy of
Reform... 12
Views of Recovery.. 13
Research &
Longitudinal Studies. 14
Civil Rights. 14
Pennsylvania
Consumer/Survivor/Expatient Movement.. 15
Community Support Programs
(CSP) 17
Addictions, 12-Steps, and
Mutual Support.. 18
Growing Recognition and
Interest in Mental Health Recovery.. 20
On the National Scene. 22
What
Does Recovery Look Like?. 25
More than Treatment or
Services. 25
Individual. 26
Programs/Services. 27
System... 29
Resiliency.. 30
But, We Already Do All
That! 31
Indicators
of a Recovery-Oriented Service System... 36
Recovery Is Not a New
“Model”. 36
Basic Domains. 37
Indicators of Recovery
Oriented Systems. 39
Implications
of Shifting Toward a Recovery-Oriented Mental Healthcare System... 54
Challenges and Barriers. 54
Addressing Challenges and
Barriers. 57
Toward
Transformation.. 69
Only a Beginning.. 69
Your Call to Change. 71
Conclusion.. 73
Why a Call for Change?
The
goal of a transformed system: Recovery
“Tangata
Whai Ora”: A term chosen by and used for people with experience of mental
illness or distress in New Zealand.
Translated it means “people seeking wellness”.
˜™
Introduction
We have all seen them – those pictures of people
confined to locked wards of rambling old hospitals, the hopeless look in their
eyes, abandoned by family and friends, and facing a future that is bleak and
desolate. It doesn’t matter how old
those pictures are, the 1880’s, the 1940’s, the 1970’s, the eyes are still the
same. At different times, there have
been waves of reform to improve conditions, to institute more effective
treatments, to seek new ways to promote and support healing from psychiatric
disorders. We have found new, more
helpful medications; we have helped people move from institutions to settings
in our communities; we have found ways to help people find jobs or go back to
school. We believe we have had some
success in this work. And, to some degree we have. But too often, the eyes are
still the same. People are still disconnected from family and friends, isolated
within their communities, and often trapped in assumptions about bleak futures
due to chronicity and disability.
During the past decade, many voices have risen
to challenge some of the basic assumptions about mental illness and its impact
on the lives of individuals and their families.
People with serious mental illnesses do, in fact, recover. Some become
fully symptom-free with time, while others live rich and fulfilling lives while
still experiencing some psychiatric problems.
The amalgamation of these voices has created what is now known as the “recovery
movement” in mental health. One of the basic premises of this movement is that
the role of a mental health service system is not to “do for” or to “do to”,
but to “do with” – recognizing a fundamental shift in roles, power, and
responsibility for providers and consumers alike. It is not about units of care, placement, or
“functioning” or even a cure per se; it is about building real lives. It is
both a goal or destination and a continual, very human process of growth,
change, and healing.
The recovery movement is impacting the mental health
system at all levels by challenging mental health providers, administrators,
policy-makers, funders, workers, as well as people who experience mental health
problems and their families to look at how negative or limiting assumptions are
driving approaches to services, to funding, to treatment, to policies, and
ultimately to the course of individual
lives. The federal government has issued
a call for sweeping transformation of the mental health service system
throughout the United States.
In Pennsylvania, this document, A Call for Change: Toward a
Recovery-Oriented Mental Health Service System, carries this same mandate
for change into the Commonwealth, building upon our current efforts, and
providing a foundation for further reflection, discussion, planning and
ultimately our transformation to a more recovery-oriented mental health service
system for adults in this State.
Drawing from the experiences and ideas of
Pennsylvanians, as well as contemporary literature and the experience of other
states in tackling these changes, A Call for
Change presents what is currently known about the elements of a
recovery-oriented mental health system and presents a set of indicators by
which the process and outcomes of transformation may be evaluated. OMSHAS
expects that this document will help to articulate a more detailed vision of
what a recovery-oriented system will look like in Pennsylvania
at the state and local levels, and introduces the Call to Action for more strategically defining the necessary steps
of transformation.
In November, 2004 the Pennsylvania Recovery
Workgroup generated this definition of recovery to guide service system
transformation in this State. It was
fully endorsed by the Pennsylvania Office of Mental Health Substance Abuse
Services (OMHSAS) in 2005.
Recovery is a self-determined and holistic journey that
people undertake to heal and grow.
Recovery is facilitated by relationships and environments that provide
hope, empowerment, choices and opportunities that promote people reaching their
full potential as individuals and community members.
Operationalizing this definition of recovery
throughout the Pennsylvania
public mental health service system for adults is the prime goal and vision of
this document.
Envisioning a Transformed System
in Pennsylvania
OMHSAS Vision & Guiding Principles
In 1995 Deputy Secretary Charles Curie
developed the first OMHSAS mission statement that included an expectation that
every person served within the system will have the opportunity for
recovery. In 2003 under the leadership
of Deputy Secretary Joan Erney, the OMHSAS,
with input from representatives of all major stakeholder groups, developed a
recovery-focused vision statement of a transformed service system in Pennsylvania.
To support this vision, OMHSAS also identified a
core set of guiding principles that outline primary tenets to be reflected in
all change initiatives. These guiding
principles are as follows.
Guiding Principles
The Mental Health and Substance Abuse Service System will
provide quality services and supports that:
·
Facilitate recovery for adults and resiliency
for children;
·
Are responsive to individuals’ unique strengths
and needs throughout their lives;
·
Focus on prevention and early intervention;
·
Recognize, respect and accommodate differences
as they relate to culture/ ethnicity/race, religion, gender identity and sexual
orientation;
·
Ensure individual human rights and eliminate
discrimination and stigma;
·
Are provided in a comprehensive array by
unifying programs and funding that build on natural and community supports
unique to each individual and family;
·
Are developed, monitored and evaluated in
partnership with consumers, families and advocates;
·
Represent collaboration with other agencies and
service systems.
Role of the OMHSAS Advisory
Committee and the Recovery Workgroup
In May 2004, OMHSAS redesigned its Advisory
Committee Structure to be more inclusive and more responsive to the various
stakeholder groups. This re-organized structure took on the responsibilities of
the previous Mental Health Planning Council, and further identified its role to
provide guidance to OMHSAS on its broad behavioral healthcare mandate which
includes mental health, substance abuse, behavioral health disorders, and
cross-system disability. The OMHSAS Advisory Committee membership is comprised of
a diverse group of stakeholders including representatives of children,
adolescents, older adults, adult consumers of mental health services and their
family members, persons in recovery from addictions, persons with co-occurring
mental illness and substance abuse, providers, advocates, and government
officials.
Recognizing the emerging need and growing
interest in Pennsylvania to make
a shift towards a more recovery-oriented service system, the Advisory Committee
formed a Recovery Workgroup. The task of
this workgroup was to explore how to transition the Pennsylvania
mental health system into a more recovery-oriented approach. This task was incorporated as a Priority
Project of OMHSAS and approved by the Advisory Structure with specific charge
to develop a blueprint to help frame and guide the transformation.
In November 2004 the Recovery Workgroup was
brought together by invitation to discuss the process of developing a blueprint
for building a recovery-oriented service system in Pennsylvania.
The group met over two days to share ideas and develop consensus about the
definition and indicators of recovery-oriented services in Pennsylvania.
A contractor was engaged to draft a document based on the output of these meetings
and other relevant materials. A Recovery Workgroup Steering Committee was
formed to guide development of the draft and to review the document before
submitting it for broader field review and comment.
Scope and Role of A Call for Change
A Call for
Change outlines a destination and provides some guidance on ways to get
there. Its purpose is to stimulate thinking, generate discussion, and serve as
a foundation for more targeted strategic planning throughout Pennsylvania.
Some would want this document to be very
detailed and highly prescriptive, a “how-to” guide for transforming the Pennsylvania
mental health care system. Others would
find that level of detail much too overwhelming and stifling. Through workgroup
dialogue and process, a consensus was formed in regard to the charge of “creating
a blueprint.” It was determined that
strategically detailing the work of transformation was going to demand
participation beyond the workgroup members and indeed, beyond OMHSAS.
A Call for
Change offers a basic framework for transformation, including guiding
principles and indicators of a recovery-oriented system. And, it discusses some of the implications of
these changes and recommends some approaches for using the indicators to
initiate changes in local, county, and state-wide systems. It is to be considered a “living-breathing”
document and not a “set in stone” plan. It is anticipated that it will serve as
a foundation for strategic change planning at many levels and over time, but it
is not a strategic plan in and of itself.
As the first phase of an ongoing process, its purpose is to stimulate
discussion in all arenas and at all levels. Additional materials will need to be
developed to help inform and guide the process as we shift toward a more
recovery-oriented service system in Pennsylvania.
While the initial intent of this document was to
encompass “recovery” in the broadest context of the service system, it soon
became clear that there are a number of groups that need focused attention and
a more refined service and support array than can be presented in this initial document;
specifically the needs of adolescents/transition-age youth; older adults;
individuals at first onset of mental illness; persons with co-occurring
disorders and some cultural/ethnic groups. Additionally, active discussion is
needed in understanding how the concepts of recovery apply for younger children
and their families.
While mental health services are relatively new
to understanding how recovery concepts may apply to psychiatric disorders, Drug
and Alcohol services have long embraced the term “recovery”, and it has some
specific meanings in that arena. Currently, there are some philosophical and
practical differences in how substance abuse services and mental health
services individually understand and employ the concepts of recovery.
Considerably more discussion is needed in order for the two fields to move
toward a unified definition of recovery and more congruency in their
terminology and approaches to recovery.
It is beyond the scope of this first document to
be fully responsive to the barriers presented by the terminology and philosophy
of these various groups. Therefore, the
content of A Call for Change has been
driven primarily by concepts emerging from the adult mental health recovery
perspective and focuses only on transforming services for adults using the
public mental health service system.
The
Roots of Recovery in Mental Health
A fundamental question remains: If the purpose of the mental health system is
not to help people on their path of personal recovery, what is it for?
One of the chief objectives…is to bring about a
rational attitude toward disorders of the mind.
This means teaching people to recognize early the warning symptoms of
mental disease. It means also the
establishment of mental health services to which people will feel impelled and
be willing to go without delay for advice and treatment.
˜™
Deep Roots and a Legacy of
Reform
During the past decade, the concept and
principles of recovery have emerged as a new way to understand mental health
problems, treatment, and outcomes. Mental health consumers/
survivors/expatients have been a prime force in promoting this approach, often
drawing from their personal experiences, both positive and negative, to help
others understand that people can and do recover from serious psychiatric
problems.
The roots for this movement toward
recovery-oriented mental health services are both broad and deep. This chapter
briefly explores some of these roots. They encompass not only our historical
desire to understand the phenomena we term mental illnesses, but also the
ongoing drive to find ways to help people who experience these difficulties.
Some of our historical efforts have worked, some have not, but the process of
learning is continual and continues today.
Even a cursory review of the history of mental
health services in Pennsylvania
shows that the contemporary concepts of recovery in mental health had their
genesis decades, even centuries ago.
Recovery is not really a new idea in mental health, but a re-emergence
of fundamental values and long-standing knowledge about what it takes for
people with serious mental illness to re-gain and live meaningful and
productive lives. In many ways recovery
is a return to basics, enhanced by the phenomenal contributions of science,
research, and understanding.
Strong leadership, advocacy and innovation have
established in Pennsylvania a
legacy of reform that can be traced to the colonial period. Over 200 years ago,
Dr. Benjamin Rush of Philadelphia, now considered to be the “Father of American
Psychiatry”, recognized that psychiatric illness could be diagnosed and treated,
emphasizing that considerate treatment of people with mental illness could be
much more effective than the rough modes then prevalent. Another innovative and
early Pennsylvania leader, Thomas
Kirkbride developed an approach to treatment that included not only medical
services, but therapeutic treatment which included attention to physical health
and comfort, well being, industry, activity, fresh air, and other considerate
therapies.
The roots of recovery draw not only from medical
and biologically driven knowledge; they also reach into sociological and
psychological research, humanitarian values, civil rights, social movements,
spiritual elements, and even political and economic arenas. The experiences of individuals and families
who have lived with mental illness, however, form the bedrock of the movement
toward more recovery-oriented mental health systems.
Views of Recovery
For the past two decades, there has been
increasing interest about the concept of “recovery” as it applies specifically
to mental health – and increasing confusion about what it means.
Recovery has traditionally been a biomedical
term relating to resolution of acute episodes of illness, distress, or
disruption. In this context it implies
“cure”. In the medical arena, when the term recovery is applied to long-term or
chronic disorders such as diabetes, asthma or many physical disabilities it
does not imply cure, but rather a return to full or partial functioning in most
aspects of one’s life. In this context,
the process of recovery may also imply acceptance of and adjustment to
limitations and losses. Resiliency is a related concept, relevant to both
adults and children, which implies the ability to manage and rebound from
stress, trauma, tragedy, and other life adversities.
The term recovery can also include the act of
“gaining,” as in recovering something that was lost – a sunken treasure, a
sense of personal comfort or safety, confidence in speaking out, a new lease on
life, and so forth. In a broad sense, to be “in recovery” refers
to the active, uniquely personal process of finding ways of resolving or
managing physical, emotional, behavioral, spiritual, or interpersonal issues
that cause problems or pain, and simultaneously learning or creating a more
positive, constructive, functional, meaningful, and ideally satisfying way of
being. Regardless of the definition, the
concept of recovery implies a dynamic, multi-dimensional, often non-linear and
very individual healing process.
Research & Longitudinal
Studies
The fact that people can and do recover from
serious mental illness was first met with suspicion by professional service
providers who provided example after example of persons with perceived chronic,
life-long and disabling disorders. The concept continues to be the focus of
considerable dialogue and debate in both the mental health and the substance
abuse communities. The anecdotal database of consumer stories was substantiated
with the findings of research conducted by Courtney Harding and her colleagues
on the longitudinal course of schizophrenia. This research has been confirmed and
amplified the findings of other international studies: the majority of people
diagnosed with schizophrenia can and do recover.
And as the work continues, the evidence grows, our knowledge deepens, and the
word is getting out.
Civil Rights
The contemporary application of “recovery” to the
mental health context evolved in large part from the human rights movements of
the 1960’s. Here recovery basically
refers to proactively taking charge of one’s life and mental health,
challenging stigma and discrimination, and moving beyond perceptions of
chronicity often associated with psychiatric diagnoses. The idea that
people could – and did – actually recover from
psychiatric illness grew from the experiences and stories of the people who
experienced recovery in their own lives.
They were the first to challenge the tautological idea that if a person
recovered from mental illness, then he/she had been initially misdiagnosed.
Like many other social movements of the 1960s
and 1970s, the consumers/survivors/ex-patients emerged as a group with a shared
history of marginalization, the shared experience of ongoing stigma,
discrimination, and systematized suppression of their personal civil and human
rights. These voices merged to form a consumer movement that has survived many
decades of derision, fear and struggle and has emerged as a powerful force. Some of the basic goals of the movement are
encapsulated in the concept of empowerment and can be understood on several
different levels:
·
Systemically
-- the redistribution of power held by the state and the institution of psychiatry;
·
Collectively
-- the rights of a group to express their “voice” and to significant and
meaningful participation in issues of importance to them;
·
Individually
-- taking control and responsibility for one’s own life, having and expressing
personal choice.
Stories of recovery through empowerment are not
limited to more recent times. For example, Clifford Beers penned his compelling
and powerful autobiography “A Mind that Found Itself” in 1908. Based on his
experiences as a patient in various psychiatric hospitals and in community
situations, he understood that a larger voice was needed in order to challenge
beliefs, change conditions, and create opportunities for persons with mental
illnesses. To further his vision, he
created the National Committee for Mental Hygiene, the precursor to the
contemporary National Mental Health Association.
Pennsylvania Consumer/Survivor/Expatient Movement
Self Help and Advocacy
The mental health consumer/survivor/expatient (C/S/X) self-help
movement began in Pennsylvania over
20 years ago. In 1984, the Mental Health Association of
Southeastern Pennsylvania (MHASP) received a grant from the Philadelphia Office
of Mental Health/Mental Retardation to implement a Patient Self-Help/Advocacy
Organizing Project.
Joseph Rogers was hired by MHASP to establish the goals of this project,
bringing experience gained from his work in New Jersey
and Florida where he had been
involved in patient self-help movements.
He organized other individuals in Philadelphia
and throughout the state who provided leadership in organizing the Philadelphia
and larger Pennsylvania C/S/X movements.
The Involved Consumer Action Network (ICAN) lead by Mark Davis, and the
Leadership, Education, Advocacy, Development project (LEAD) lead by Janet Foner
were formed to establish a statewide network of consumer-run initiatives, such
as self-help and advocacy groups and drop-in centers. The success of this work was seen with the
establishment of strong C/S/X advocacy and self-help services not only in Philadelphia,
but also in Pittsburgh, Erie,
State College and Lancaster
as well as more rural areas of the state.
Pennsylvania Mental Health
Consumers’ Association (PMHCA)
In 1986, the need for a statewide organization to provide
systems advocacy was realized with the founding of the Pennsylvania Mental
Health Consumers’ Association (PMHCA) the only statewide membership association
representing current and former recipients of mental health services that is
governed and run by the same. Organizing
activities of PMHCA have grown throughout the state and the C/S/X movement
began realizing success in advocating legislatively and systemically for needed
funding and development of consumer-run initiatives. Over the last 20 years, this movement has been
successful in building a strong voice for increased community-based, self-help
and recovery-oriented services.
National Mental Health Consumers’ Self-Help Clearinghouse
Emerging from the strong local consumer movement in Pennsylvania,
the National Mental Health Consumers' Self-Help Clearinghouse was funded by the
National Institute of Mental Health (NIMH) in 1986. It was the nation's first
national technical assistance center focusing on the needs and interests of
mental health consumers – and it was consumer run itself. For the past 20
years, the Clearinghouse has helped individuals, service providers, and
policy-makers nationwide to understand the importance of self-help and
advocacy, and created resources and tools to help other consumers build
services in their areas. It continues to
tackle issues relevant to mental health consumers as well as to provide
assistance to self-help groups and other peer-run services for mental health
consumers.
Consumer/Family Satisfaction Teams (C/FST)
Pennsylvania
consumer and family leaders created the innovative Consumer/Family Satisfaction
Team (C/FST) approach to service evaluation and systems change. This approach, begun in the 1990’s in Philadelphia,
has spread throughout the state and served as a model for other consumer and/or
family lead evaluation services in other states and even internationally. Consumers and family members work as a formal
team to “determine whether priority population adult behavioral health service
recipients and children and adolescents with serious emotional disturbance
and/or substance abuse disorders and their families are satisfied with services
and to help ensure that problems related to service access, delivery and
outcome are identified and resolved in a timely manner.” Today C/FSTs are operating in 62 of the 67 Pennsylvania
counties and are a growing force in county quality management programs.
Community Support Programs (CSP)
Since the 1970’s the federal Community Support
Program initiatives of the National Institute of Mental Health (NIMH) helped to
shape the emergence of community resources and services for persons with
psychiatric disabilities. While these
services were typically conceptualized, developed, operated, and promoted as
necessary life-long supports, they also contributed to the emergence of
recovery in mental health by spotlighting the value of community,
relationships, and work in the lives of persons diagnosed with psychiatric
disorders, and by demonstrating that a person’s ability and potential are the
result of interactions between the individual, expectations, and the
environment, rather than diagnosed pathology or intensity of symptoms.
Pennsylvania,
with the assistance of a State Technical Assistance grant from the National
Institute of Mental Health (NIMH), formed the State Community Support Program
(CSP) Advisory Committee in 1984 with backing from the Pennsylvania Department
of Public Welfare, Office of Mental Health. This committee became a key
coalition for consumers, family members, advocates and providers to collaborate
and provide a unified voice in advocating for statewide systems changes. The
principles of CSP became integral to shaping Pennsylvania’s
existing and future mental health service system. It was emphasized that services
must be consumer centered, strengths based, culturally competent, accountable,
flexible, coordinated, designed to meet the needs of special populations and
rely on natural supports that promote the full community integration of
consumers. The original Community Support System (CSS) model
disseminated by NIMH provided advocates and planners with a guide for designing
a system of services, supports and opportunities that would allow adults with
serious mental illness to recover and reach their full potential as
contributing members of their respective communities.
The growth of the CSP movement in Pennsylvania
in the years that followed extended across the four regions of the state. Using a regional committee structure, the
basic values and ideas about community support were integrated into planning
and service delivery approaches around the state. The committees, along with
others, have done much to advance the development of community support services
such as crisis services, supported housing, case management, psychiatric
rehabilitation, drop-in centers, peer support and consumer run programs. In October, 2001 the CSP wheel was modified
to include the concept of recovery as central to a community support program.
Further, the network of regional and state CSP committees evolved so that the
membership reflected the concerns and goals of the state’s diverse geographic
and cultural context. As of 2003, there were 46 mental
health/mental retardation programs in the 67 counties of the Commonwealth and
CSP committees existed in nearly all of them.
Addictions, 12-Steps, and Mutual
Support
The mid 1900’s saw the emergence of a variety of
self-help and 12-step programs that provided an opportunity for people with
addictions and other kinds of personal difficulties to come together as peers
with shared experiences and to help each other.
Alcoholics Anonymous (AA) was the prototype for most of these programs
and continues to influence the field of addiction treatments.
While promoting the understanding of addictions
as diseases rather than weakness of will or deficiency of character, AA and
other 12-step programs were the first to recognize that the traditional
concepts of medical recovery were not sufficient to address how people healed
from these disorders. For example, they
taught that sobriety was more than mere abstinence from use of the addictive
substance – that it entailed completely replacing old
ways with new ways, giving up an old life and learning how to create a healthy
and fulfilling life. With this approach, the concept of recovery was expanded
to encompass many non-medical aspects of healing: the social, cognitive,
interpersonal and even spiritual elements of an individual’s life. For example, a basic tenet of recovery in
most 12-step programs is to initiate efforts to heal damaged
relationships. Similarly, symptom
remission or illness management alone is inadequate to define recovery from
psychiatric disorders.
Recovery in both addictions and mental health means learning to live a full and
healthy life.
Over the years AA and other 12-step programs
have demonstrated the effectiveness of people helping each other not as
experts, but as peers: peer
support. It is well recognized that both
people involved in peer support are positively affected in these helping
relationships, so much so that AA strongly encourages members to become
sponsors – (personal supporters and guides) for others as part of their
personal recovery. Drawing from personal
experience and actively helping others are well-known to be powerful tools in
the process of establishing and sustaining one’s own recovery. This idea has
extended the parameters of peer support and now encompasses the growing belief
that persons with lived experience of personal recovery are not only valued
members of formal treatment services, but are often seen as necessary elements
of an addictions treatment program.
Concepts such as relapse prevention were well
established in addiction services before they gained traction in mental health
services or with Wellness Recovery Action Plans (WRAP). Further, the 12-step
approaches have also helped us recognize the importance of spirituality in the
process of recovery for many people, something that has traditionally been
outside the consideration of mental health treatment.
So, is recovery in mental health the same as
recovery from addiction? There are some
who consider the process of recovery from mental health issues to be identical
to the process of recovery from addictions.
There are many similarities to be seen, including the non-linear aspect
of the recovery process – “two steps forward, one step back”, the recognition that the process is not as easy as others may
think it is, the reality that people rarely do it alone successfully, and recognition
that the presence of supportive others and environments can make all the
difference.
But there are also some fundamental differences
between the concepts of substance abuse and mental health recovery as they are
currently understood. Some of these
differences may be simply in how language is used within the respective groups,
but others are more philosophically rooted.
For example, one of the core differences centers around the issues of
power and powerlessness. One of the primary elements of 12-step recovery is to
admit powerlessness and turn one’s self and life over to the power and
direction of a trusted “other” or Higher Power.
In mental health recovery, the focus tends to be more on empowerment and
self-determination, helping individuals to find their own voice and
self-determination. This is based on the
belief that individuals need to reclaim their own power as one of the first
steps of a recovery process.
In 12-step programs, members are encouraged to
label themselves as their addiction or disorder: I am an alcoholic, an addict, and so
forth. In mental health recovery there
is emphasis on helping individuals to move beyond the diagnostic labels that
have been applied to them by service providers and others. Often individuals internalize these labels,
accepting them as their primary identity and experiencing unnecessary and
detrimental self-stigma, low self esteem, and self-limitations. In recovery-oriented mental health care,
individuals are encouraged to NOT identify themselves or be identified by
others as their diagnosis: I am a schizophrenic, a bipolar, and so forth. A
person may “have” a disorder such as schizophrenia or depression, but there is
more to the person than this – it is not their sole defining characteristic.
Another aspect of the recovery concept in mental health is that an individual
may be in active recovery and also continue to experience some ongoing or
periodic symptoms or difficulties. In
many substance abuse service settings a person ceases to be considered “in
recovery” if he/she is no longer abstinent.
Growing Recognition and Interest
in Mental Health Recovery
Gaining Footholds and Support
In the 1990s, some leaders in mental health
services began to recognize that recovery was not a synonym for psychiatric
rehabilitation and that recovery would become a significant and guiding vision
for future mental health services.
Mental health recovery became a more frequent
topic at professional conferences and other training venues. Some states and regions began to host
dialogues that brought mental health consumers/survivors/ex-patients and
professional service providers together on more equal ground to talk about
recovery related topics. The National
Empowerment Center hosted several ‘Learning from Us’ conferences where consumer
leaders were the presenters and the participants were primarily providers,
curious about or willing to learn about recovery in mental health. More service
providers attended the national mental health consumer conferences,
“Alternatives” in order to listen to what consumers were saying about
recovery.
Some states and counties established Offices of
Consumer Affairs within their mental health services administration
departments. Increasing numbers of
mental health agencies began hiring C/S/X as employees to provide a wide range
of services from peer support to case management, evaluation, program
development and management, and staff training.
Consumer/survivors/ex-patients became increasingly
involved in research as partners as well as independent researchers who design,
conduct, analyze and publish studies. Their involvement not only challenged the
established research agendas to include recovery-oriented questions and to
address the elements, process and outcomes of recovery in mental health, but
also helped to demonstrate that consumers make significant and enriching
contributions in all aspects of mental health related research.
Gathering Momentum in Pennsylvania
While there is growing interest and support on a
national level for promoting recovery –oriented approaches in mental healthcare
services, there is also evidence that it has been gaining momentum in Pennsylvania.
In November 2004, the first Recovering
Pennsylvania Conference was sponsored by OMHSAS and coordinated by the Mental
Health Association of Southeastern Pennsylvania. The conference brought together by invitation
a broad array of consumers, family members, providers, state and county mental
health administrators and other stakeholders to explore how to move Pennsylvania’s
mental health system toward one grounded in hope and recovery. One task assigned to participants was to
identify the recovery-focused initiatives already underway at both a state
level and in local communities. The
initiatives identified included the following. These current activities
demonstrate some existing understanding and commitment to recovery-focused
services in each region of the State already and provide a launching point for
expanding and deepening this knowledge and interest more broadly throughout the
state. The movement towards a
recovery-oriented system and growing interest in recovery information and
training among all stakeholders is evidenced by:
·
Increase in both state-level and local recovery
conferences which bring together diverse stakeholders to address recovery
issues.
·
Formation of local, regional and statewide
recovery committees and task forces.
·
Increased stakeholder collaboration in planning,
evaluation, and policy development.
·
Leadership training for consumers to participate
in shaping system of recovery.
·
Participation in Real Systems Change federal
grant to expand Certified Peer Specialist training program.
·
Pursuing strategies to secure Medicaid
reimbursement for peer support services.
·
Provision of Cultural Competency training.
·
New Freedom Initiative Project providing
grant-funded focused technical assistance to six counties for three years.
·
Support for passage of legislation for
psychiatric advance directives.
·
Development of Pennsylvania Recovery
Organizations Alliance (PRO-A), new addiction support group in Pennsylvania
focused on education, advocacy and public policy.
·
Anti-discrimination/anti-stigma initiatives.
Examples of local recovery initiatives from around
the state include the following:
·
Expanding Consumer/Family satisfaction
initiatives.
·
Developing certified peer specialist programs;
peer mentor programs; warm lines.
·
Increasing appointments of consumers to boards
and committees, including to the Board of Trustees of Allentown State Hospital.
·
Holding Recovery dialogues and “trialogues” –
organized discussions on recovery.
·
Training individuals in Wellness Recovery Action
Planning (WRAP).
·
Using reinvestment dollars for recovery-oriented
initiatives.
On the National Scene
Many Calls for Change
Many government studies have stated the need for the same
changes to be made in the behavioral healthcare service system. In 2003 the federal Veteran’s Administration
released an Action Agenda stating that recovery should be the core principle of
system change of services for veterans. In addition a 2000 report from the National
Council on Disabilities focuses on the critical role that consumers and people
who are in recovery from mental illness should play in the service system
development and administration. In addition, the following two reports from
the federal government mandate significant change – even total transformation
of the public mental health service system.
Surgeon General’s Report, 1999
In 1999 the U.S. Surgeon General issued a report on mental
health that for the first time on a national scale, recognized the importance
recovery in adult mental health, stating “the concept of recovery is having
substantial impact on consumers and families, mental health research, and
service delivery.” Recovery should be the expectation, not the
exception, in mental health care.
President’s New Freedom Commission on Mental Health
In its 2001 Interim
Report to the President, the President’s New Freedom Commission on Mental
Health (NFC),
described the current system of behavioral care throughout the United
States as fragmented, complex, and filled
with gaps, unmet needs, and barriers.
For people with serious mental illness, the picture is even bleaker:
high unemployment and underemployment, co-occurring substance abuse disorders
are common, and disability continues. The current system is more focused on
managing symptoms and the disabilities associated with mental illness than on
promoting and facilitating recovery from these disorders.
In 2003, the final report of the NFC, Achieving the Promise: Transforming Mental
Health Care in America
called for recovery to be the “common, recognized outcome of mental health
services”, stating unambiguously “The goal of mental health services is
recovery”. In this report recovery was defined as:
The process in which people are able to
live, work, learn, and participate fully in their communities. For some
individuals recovery is the ability to live a fulfilling and productive life
despite a disability. For others,
recovery implies the reduction or complete remission of symptoms.
The NFC Final Report outlined a vision for “a
future when everyone with a mental illness will recover, a future when mental
illnesses can be prevented or cured, a future when mental illnesses are detected
early, and a future when everyone with a mental illness at any stage of life
has access to effective treatment and supports – essentials for living,
working, learning, and participating fully in the community.”
The NFC acknowledged that the current mental
health service system is far from reflecting this vision and recommended
fundamentally transforming how mental health care is delivered. The term
“transformation” was specifically used by the Commission to reflect its belief
that mere reforms to the existing mental health system are insufficient. “It is time to change the very form and
function of the mental health delivery service system to better meets the needs
of the individuals and families it is designed to serve”.
OMHSAS endorses the NFC report and calls for all
counties to begin to take action to achieve transformation of their mental
health services, using this document, A
Call for Change: Toward a Recovery Oriented Mental Health Service System for
Adults, as an aid to this process.
What
Does Recovery Look Like?
Recovery is variously described as
something that individuals experience, that services promote, and that systems
facilitate, yet the specifics of exactly what is to be experienced, promoted,
or facilitated –- and how — are not often well understood by either the
consumers who are expected to recover or by the professionals and policy makers
who are expected to help them
All people with mental illness have
personal power, a valued place in our families and communities, and services
that support us to lead our own recovery.
˜™
More than Treatment or Services
Recovery is construed many ways, including as an
organizing principle for mental health services that is based on consumer
values of choice, self-determination, acceptance, and healing. What
distinguishes a recovery approach or “recovery-oriented services” from what is
in place now? Don’t we already do this?
In essence, not often. Recovery
is not simply a multiple-domain treatment plan, case management, tittered
medications, or job placement. Done well, all these services can help to
stimulate, facilitate, and support recovery for persons with psychiatric
disorders and help them to break the custodial chain between consumer and
provider. However, recovery is more than
treatment and services and for many, it actually happens outside the traditional
mental health service arena. So, what is it?
There have been recent efforts to clarify these
ideas and to build consensus around core elements of recovery from personal,
programmatic, and systemic perspectives. This provides for increased understanding and
consistency in the meanings of terms for policy, research, evaluation, and
service development purposes.
In 2005 the Pennsylvania Recovery Workgroup
developed, and OMHSAS endorsed, the following definition of recovery to be the
foundation for recovery-oriented activities and initiatives within the
Commonwealth. The following material goes into more depth about personal,
programmatic, and systemic aspects of recovery, and is drawn from various
sources and reflects the results of consensus dialogues at the national level.
Individual
Drawing from many perspectives and resources, a recent
consensus statement on mental health recovery
generated by the U.S. Department of Health and Human Services and the
Interagency Committee on Disability Research, in partnership with six other
Federal agencies, states that from an individual perspective,
Mental health recovery is a journey of
healing and transformation for a person with a mental health disability to live
a meaningful life in communities of his or her choice while striving to achieve
full human potential or “personhood”.
Recovery is present when individuals live well
and fully in the presence or absence of a psychiatric disorder. From a consumer perspective it embodies all
that is necessary to manage and to overcome the psychological, physical,
identity, economic, and interpersonal consequences of having a mental illness. It is also the individual person’s
responsibility to him/herself, family and others, to take on the responsibility
of choosing, pursuing and sustaining personal recovery. This may include
creating a personal crisis plan/advance directive for chosen agents or families
to follow.
By all accounts, mental health recovery is a
highly personal and individual process; it occurs over time, and is rarely
straightforward – often characterized by steps forward and back. Recovery does
not always mean that a person will live symptom free or regain all the losses
incurred because of psychiatric problems.
It does mean that people can and do live without feeling enveloped by
mental health issues or that their potential or opportunity is curtailed
because of them.
Despite the highly unique nature of each person’s
journey to recovery, there are remarkable similarities that people experience
in this process. Some researchers have
been working to identify specific stages to the process.
Identifying these similarities and stages helps us to better understand the
complexity of the process itself and the various ways people benefit from
formal mental health services as well as other avenues for help and healing.
Some people recover with minimal or even no use of mental health services. But many, many people look to mental health
services for help, hope, and pathways for healing from psychiatric disorders
and the challenges in living they create.
Programs/Services
From a programmatic or service perspective,
recovery-oriented services are those that are dedicated to and organized around
actively helping each individual served to achieve full personal recovery. Individual recovery always happens in the
context of a person’s real life – not just their service environment.
For many people needing mental health treatment,
however, service environments often play a critical role. Service environments and relationships with
mental health workers can promote, facilitate, and support the process of
personal recovery, helping persons to develop richer understanding of themselves,
to take productive risks, rekindle or sustain hope, and to develop positive
visions of their future. Alternatively they also can impede, hinder or restrict
opportunities for individuals to explore, to risk, to learn, and hence to limit
potential growth towards recovery. Many
aspects of the traditional medical model include attitudes, practices, and
policies that can cause difficulties and sometimes significant harm to
individuals searching for personal recovery.
There have been a number of initiatives, inventories,
and consensus meetings in the past few years that have made great strides in
naming the core attitudes and practices that distinguish recovery from more
standard service approaches. The
December 2004 Consensus Conference on
Mental Health Recovery, sponsored by the Center for Mental Health Services
(CMHS) of the national Substance Abuse and Mental Health Services
Administration (SAMHSA) generated a consensus statement on mental health
recovery. This document provides the
following ten fundamental elements and guiding principles of mental health
recovery that serve well as guideposts for recovery-oriented services.
Self-direction: consumers lead, control, exercise
choice over, and determine their own path of recovery by maximizing
autonomy, self-agency, and independence.
Individualized
and Person-Centered: there are multiple pathways to recovery based on the
individual person’s unique consumer needs, preferences, experiences – including
past trauma, and cultural backgrounds in all of its diverse
representations. Individuals also
identify recovery as being an on-going journey, an end result as well as an
overall paradigm for achieving optimal mental health.
Empowerment: consumers have the authority to
exercise choices and make decisions that impact their lives and are educated
and supported in so doing.
Holistic:
recovery encompasses the varied aspects of an individual’s life including mind,
body, spirit, and community including such factors as housing, employment,
education, mental health and healthcare services, complementary and
naturalistic services, addictions treatment, spirituality, creativity, social
networks, community participation, and family supports as determined by the
person.
Non-Linear:
recovery is not a step-by-step process but one based on continual growth,
occasional setbacks, and learning from these experiences.
Strengths-Based:
recovery focuses on valuing and building on the multiple strengths, resiliency,
coping abilities, inherent worth, and capabilities of individuals.
Peer Support:
the invaluable role of mutual support wherein consumers encourage other
consumers in recovery while providing a sense of belongingness, supportive
relationships, valued roles and community is recognized and promoted.
Respect:
community, systems, and societal acceptance and appreciation of consumers -
including the protection of consumer rights and the elimination of
discrimination and stigma – are crucial in achieving recovery. Self-acceptance and regaining one’s belief in
one’s self is also vital, as is respect for others.
Responsibility:
consumers have personal responsibility for their own self-care and journeys of
recovery. This involves taking steps
towards one’s goals that may require great courage.
Hope: recovery provides the essential
and motivating message that people can and do overcome the barriers and
obstacles that confront them.
There are increasing numbers of evaluation tools available
that focus on recovery indicators and outcomes in treatment settings and
services. Regular evaluation of services provides not
only quality assurance, but also benchmarks for progress in transformation and
a pool of evidence that demonstrates program effectiveness.
System
Mental health service systems have the
responsibility to provide the leadership, direction and resources to support
services and programs that help individuals experience recovery. For service systems, this responsibility
includes identifying which policies, standards, and funding mechanisms restrict
or interfere with services operating from a more recovery-oriented stance. The kinds of services available are dependent
on what is funded. For example, peer support, crisis prevention and hospital
alternatives, holistic wellness support, community education and
de-stigmatization initiatives are dependent on both the systemic policies that
promote them and also on the funding made available to support them.
Critical policies not only include regulations,
rules and service standards, but also the role and process of evaluation and quality
improvement within the system. The real
values and definitions of quality in a service system are reflected in what is
measured through its quality improvement activities. A recovery-oriented system
has congruence throughout – not necessarily on specific practices or programs,
but on value, desired outcomes, and a willingness to continue to seek out
better ways of helping individuals with their personal recovery journey. These, however, present a challenge when it
comes to measuring outcomes.
The NFC Final Report emphasizes that the goal of
a transformed system is recovery. The
report outlines the following six goals of a transformed and recovery-oriented
healthcare system.
1.
Americans understand that mental health is essential to
overall health.
2.
Mental health care is consumer and family driven.
3.
Disparities in mental health services are eliminated.
4.
Early mental health screening, assessment, and referral
to services are common practice.
5.
Excellent mental health care is delivered and research
is accelerated.
6.
Technology is used to access mental health care and
information.
These goals are firmly based on two overarching
principles, also presented in the NFC Final Report:
·
Principle
1: Care must focus on increasing consumers’ ability to cope with life’s
challenges, on facilitating recovery, and on building resilience.
·
Principle
2: Services and treatments must be consumer and family centered.
Resiliency
Resiliency is a concept that initially emerged from
studies of youth and families and was used to describe those individuals who
seem to not only survive in difficult situations but also seem to
constructively rebound from adversity.
There has been some discussion in the mental health field as to whether
recovery is essentially the same as resiliency.
At this time, most experts view them as very different, but related
constructs. The NFC Final Report defines resiliency as follows:
Resilience means the personal and
community qualities that enable us to rebound from adversity, trauma, tragedy,
threats, or other stresses --- and to go on with life with a sense of mastery,
competence, and hope. We now understand
from research that resilience is fostered by a positive childhood and includes
positive individual traits, such as optimism, good problem-solving skills, and
treatments.
Essentially, resiliency is a personal characteristic that
combines individual traits and learned skills; recovery is a process of
positive growth, healing, and building meaningful and productive lives.
Learning and developing resilience skills (e.g. problem solving, mindfulness,
nurturing positive attitudes, managing feelings) may be important aspects of
the recovery journey of many persons.
The NFC states that for a system to successfully transform, “care must
focus on increasing consumers’ ability to successfully cope with life’s
challenges, on facilitating recovery, and building resilience, not just on
managing symptoms”.
But, We Already Do All That!
“But, we already do that” is commonly heard in
recovery trainings and meetings for mental healthcare providers. Many providers do not see how contemporary
images of recovery are different from the innovations instituted in the past
decade, which included community support services, assertive community
treatment, psychiatric rehabilitation and peer-support.
This concern often reflects the perception that
“recovery” is merely another service program or that it negates the work of
past leaders and innovators. It may also
embody frustration that the principles, programs, and approaches promoted in
these earlier efforts were either not fully implemented or have been distorted
or even lost over time.
This “yesterday’s news” sentiment challenges
recovery advocates and educators to be more specific in identifying and
communicating the ways in which a recovery approach is not the same as
“business as usual”. The efforts of three different educators to meet this
challenge are presented below to help illustrate what makes a recovery approach
different from many more established service approaches.
The following chart is adapted from the work of
Noordsy and colleagues, and highlights some of the basic differences between a
recovery approach and more traditional services
|
|
Traditional Rehabilitation Services
|
Mental Health Recovery Approach
|
|
Theory
|
·
Psychotic disorders produce functional impairment from which
there is no cure, but can be assisted adaptation
|
·
People with “psychotic disorders” redefine themselves through
roles and relationships rather than disability
|
|
Prototype
|
·
Mobility impairment
·
Cardiac rehabilitation
|
·
Cancer support groups
·
12-step programs & other self-help approaches
|
|
Goal
of service
|
·
Maximize functioning
·
Skill development
·
Re-integration into society
|
·
A meaningful life
|
|
Relationship
with workers
|
·
Professional and client roles. Client is usually “less than” the worker
·
Carefully defined boundaries with minimal flexibility. “Us/Them”
·
Frequently “power over”
|
·
“Power with”, shared risk, and responsibility. Partnership
·
Meeting of “equals” with different expertise and experiences
·
Negotiated boundaries
|
|
Research
|
·
Identify effective methods of increasing functional
involvement
·
Models and model fidelity
|
·
Name, measure recovery process; identify predictable stages
·
Identification of barriers
·
Narrative, participatory action and first person experience
·
Healing cultures: the effects of relationships and
environments
·
How recovery outcomes corroborate with health, wellness,
prevention
·
Impact of peer support & self help
·
How to build, enhance, support the recovery process
|
|
Assessment
|
·
Identify strengths
·
Elicit history, interests, and abilities.
·
Document capacity & disability
|
·
Consumer assessment of personally relevant consequences. Professional assessment of sense of
ownership in life and desire to work/live beyond illness. Hope
|
|
Treatment
|
·
Increase strengths, reduce barriers; skills teaching;
Vocational rehab/work readiness
·
Lifestyle changes: grooming, housing, diet, exercise,
substance abuse
·
Medications can play a vital role
|
·
Consumer driven.
Worker as ally, consultant
·
Mutual help & self help
·
Seeing possibility, building hopes, dreams.
·
Address issues & consequences important to consumer.
Taking personal responsibility
·
Re-defining/ re-viewing experience. Changing the way we look
at things and the meaning given to them
·
Move from passive to active roles. Risk-taking rather than care-taking
·
Attention to impact of trauma as well as substance abuse
issues
·
Conflict negotiation
·
Medications can play a vital role
|
Another set of comparisons of recovery-oriented
and non-recovery-oriented service cultures comes from META
agency of Phoenix, Arizona.
|
Non-Recovery Culture
|
Recovery Culture
|
|
Low
expectations
|
Hopeful
with high expectations
|
|
Stability
and maintenance are the goals
|
Recovery,
a full life, is the goal
|
|
No
clearly defined exit from services
|
Clear,
attainable exits. Graduates return and
share, become workers
|
|
Compliance
is valued
|
Self-determination,
critical thinking, and independence/ interdependence are valued
|
|
People
are protected from “trial and error” learning
|
People
take risks and have the “right to fail
|
|
One-size
fits most treatment approach
|
Wide
range of programs and non-program options
|
|
Consumers
live, work, and socialize in treatment settings
|
Emphasis
on opportunities for community linkages and building a life outside mental
health treatment
|
|
Emphasis
is on illness, pathology. Medication is the primary too
|
Emphasis
is on the whole person. Medication is one of several important tools
|
|
Once
a consumer, always a consumer
|
Today
a consumer, tomorrow a colleague
|
Finally, Ridgway offers a comparison of the
pre-recovery mental health system and a recovery enhancing mental health
system.
|
Pre-Recovery Mental Health System
|
Recovery Enhancing System
|
|
Message is: “you’ll never recover” – illness is
a life long condition
|
Message is: “recovery is likely” you can and
will attain both symptom relief and social recovery
|
|
Minimal attention to basic needs
|
Attention to basic needs, including housing,
human and civil rights, income, healthcare, transportation
|
|
Focus is on person as patient, client, service
recipient
|
Focus is on success in social roles: parent,
worker, tenant. Activities to reclaim
and support a variety of social roles are emphasized
|
|
Treatment plan and goals are primarily set by
staff with minimal input by consumer.
Plans often generic and focus on illness/medical necessity of
treatment
|
Personalized recovery plan is mandated based on
person’s individual goals and dreams.
Plan is broad and ranging across many domains. Often includes services and resources that are
not directly affiliated or controlled by mental health service system
|
|
People lack access to the most effective or
research validated services
|
There is ready access to research validated
practices and on-going innovation and research on promising approaches
|
|
Peer support is discouraged, lacking, or under
funded
|
Peer support is actively encouraged, readily
available, adequately funded and supported.
|
|
Coercion and involuntary treatment are
common. Staff act “in locus parentae”,
over use of guardianships, rep payee and conservatorships
|
Coercion and involuntary treatment are
avoided. People are treated as adults.
Temporary substitute decision makers used only when necessary. Advanced directives and other means are
used to ensure people have say even in crisis
|
|
Crisis services emphasize coercion and
involuntary treatment, often use seclusion and restraint which can be
(re)traumatizing
|
Crisis alternatives such as warm lines and
respite are available. Staff has been
trained to avoid seclusion and restraint and is skilled in alternative approaches
|
|
Funds are lacking for services and supports not
directly related to illness
|
Rehabilitation oriented options are funded,
flexible funds and vouchers are available, programs are response to consumer
stated needs
|
|
Services often like “adult babysitting” with
focus on care taking, and even child-like activities
|
Active treatment and rehabilitation are tailored
to individual. Activities are age
appropriate
|
|
Mental health workers lack knowledge and skills
to support recovery
|
Mental health professionals and all staff are
trained in rehabilitation and recovery
|
|
People held in jails without treatment
|
Jail diversion, mental health courts, and jail
based services available
|
|
People with drug/alcohol problems are served by
two systems that are often in conflict
|
Integrated co-occurring disorder services are
readily available
|
|
Families are left out; they are not educated
about recovery. Little or no family
support or education
|
Families are educated about recovery as well as
about mental illness. Family support and
conflict mediation are readily available
|
|
Consumers have little/no voice in system. Tokenism and exploitation. Little support for consumer input
|
Consumer voice on planning councils, consumer
affairs officers, systems and program level advocacy, leadership development
|
|
System promoted dependence or unnatural
independent. Little or no attention to social support or life after services
|
System focus on interdependence, mutual support.
Attention to social network development, social integration
|
Indicators of a Recovery-Oriented
Service System
You can do it. We can help
We have taken the people out of
institutions, but we have not taken institutional thinking out of people.
For behavioral healthcare organizations,
a recovery focus means genuine reflection about policies and practices that
either enhance or detract from the individual process of recovery. It is not a
new service to tack on to an existing program array… At its core recovery is
about doing differently that what we must do every day.
˜™
Recovery Is Not a New “Model”
Recovery is both misunderstood and feared at many
levels. Sometimes recovery is viewed as an “add-on” service and we find
“recovery teams” or programs with new names appended to them. However, at its core, recovery is not a new
service tacked on to the array of more traditional mental healthcare programs.
Models may come and go, but people recover. Recovery is about fundamentally
doing differently those things that we do every day. Deegan contends that the focus on models is
one of the largest obstacles to implementing recovery-based care, stating that
“the workforce is trained to offer services according to models – and being
accountable to agencies which are also organized around such models – instead
of service workers being accountable and paid by the person with the
psychiatric disability”.
The recovery-orientation of a service system is
determined by the degree that it exemplifies a set of tangible as well as
non-tangible indicators; that their policies, practices, funding, training,
evaluation, services, and values are all oriented toward helping individuals
with their personal process of recovery.
An orientation toward recovery is not a “model” in the traditional sense
of the word in mental health and substance abuse services. Many models of service can help facilitate
and support the process of personal recovery.
It is not necessarily the model of service used, but how these services
are implemented and the degree of accountability to the individuals served that
distinguish recovery-oriented services from those that are not. For example, some inpatient settings are very
committed and oriented toward recovery while some rehabilitation and
peer-support services are oriented more toward care-taking, compliance, and
acceptance of imposed limitations.
Often the challenge in recovery-oriented
practices is not WHAT is being done, but HOW it is being done. Working from a recovery-orientation does not
mean an “add-on” service or team, but a sincere willingness to look at the
basic tasks and activities of mental health service provision and do things
differently. Recovery-oriented services continue to provide basic assessment,
service planning, rehabilitation/treatment/support to individuals with a wide
range of needs and fluctuating willingness to make change. They grapple with compulsory treatment and
risk/safety concerns, conflicting perspectives or opinions about “best
interest” or “most facilitative” practices, and so forth.
Being recovery-oriented means that a service or
system makes a strong and honest
commitment to a set of principles and beliefs about the ability of each person
with mental health and addictions problems to grow, change, and have a life
that is personally rich and fulfilling, with or without the presence of
symptoms of a disorder. When services and systems make a commitment to putting
these values into action, it becomes evident that many existing polices and
practices are not congruent with these beliefs.
The work of recovery-oriented service systems is to continually evaluate
their attitudes, policies, and practices for this dissonance and to actively
work to align their day-to-day activities with recovery values and principles.
Basic Domains
A considerable body of material has emerged during the
past few years offering various markers of recovery oriented service systems
and tools for measuring these basic benchmarks. There is a striking consistency
among the various initiatives regarding the primary domains or areas that
characterize a recovery-oriented service.
These basic domains are as follows.
·
Validated Personhood
·
Person Centered Decision-Making & Choice
·
Connection -- Community Integration, Social
Relationships
·
Basic Life Resources
·
Self-Care, Wellness, & Finding Meaning
·
Rights & Informed Consent
·
Peer Support/Self-Help
·
Participation, Voice, Governance & Advocacy
·
Treatment Services
·
Worker Availability, Attitude and Competency
·
Addressing Coercive Practices
·
Outcome Evaluation & Accountability
Within each of these broad domains are specific
indicators that should be common practices in recovery-oriented systems. There
are many ways each indicator can be demonstrated by individuals, by
programs/services, and by the mental health authorities. The more indicators
present and the more ways those indicators are manifest within a system, the
more that service or system can be described as recovery-oriented.
However,
these domains and indicators only tell part of the story. Often it is not just WHAT is being done, but
also HOW it is being done that makes the difference. For example, many agencies can appoint
consumers or family members to policy groups or bodies, but the experience of
many of these individuals is tokenism, marginalization, feeling placated and
not valued as participants. Some agencies
are now requiring that all consumers complete – for the file – a Wellness
Recovery Action Plan (WRAP). This
potentially rich and rewarding process becomes reduced to another piece of
mandated and meaningless paperwork, but the organization can report that most
of the people it serves have WRAPs.
While measuring specific benchmarks can be useful,
it only captures a part of the story. Often it is the intangibles that make the
difference between systems or services that are truly focused around helping
individuals with their personal recovery and those that are going through the
motions. The recognition, development and measurement of these intangibles are
where Pennsylvania needs to make
its mark.
Indicators of Recovery Oriented
Systems
The following tables provide a basic set of
indicators of these domains. They are the heart of A Call for Change and serve
as critical reference points for services, agencies and county mental health
programs looking for specific strategies for transforming to more recovery-oriented
services.
The information presented has been derived from the
considerable amount of work done by Pennsylvanians in focus groups, meetings,
and formal work groups to identify the indicators of recovery-oriented
services, as well as current literature, the experience and planning activities
of several states, various evaluation instruments designed to assess the
recovery focus of a service or system, personal recovery or outcome
assessments, and from the experience of individuals and their families. They include things identified by consumers
as needed in mental healthcare services and systems to promote and support
recovery by policy-makers and consensus-bodies, researchers, as well as by
those services and systems that are making efforts to become more
recovery-oriented.
The tables offer some ways each indicator may be
demonstrated from an individual perspective, by a service or program, and by a
county, regional or state mental health authority. As presented here, the
tables are incomplete – leaving room for more ideas, inspiration, and input.
The tables are offered as a starting point for discussion, creative thinking,
and prioritization for future strategic planning.
It should be noted that these tables do not
identify the specific mechanisms and other considerations that may be
pre-requisite to operationalizing these indicators in a complex service system. These prerequisites may include funding,
licensure/regulation/certification, union negotiation, personnel training and
supervision, interagency coordination, and so forth. These issues will need to
be addressed in time through strategic planning for specific transformation
initiatives.
While these activities may help stimulate,
support, and facilitate the process of personal recovery among individuals
served by the mental healthcare system, the bottom line is accountability to
the persons served and their attainment of personal outcomes. Successful recovery-oriented systems will be
able to consistently show evidence that people served are achieving personal
outcomes that are meaningful to them.
Unless services and the system can demonstrate that personal recovery
outcomes are being attained, it is not a successful system, regardless of how
many of the following factors or activities it has put into place.
RECOVERY DOMAIN 1: Validated Personhood
|
|
Elements of a
recovery-oriented system
|
Ways this indicator can be
demonstrated
|
|
Indicator
|
Individual Indicator/Outcome
|
By Program/Services
|
County, Regional, or
Statewide
|
|
Demonstration of hope
& positive expectations
|
·Staff expects that I can and will function well.
·Staff believes that I can grow, change, and
recover.
·Workers help me feel positive about myself.
·I feel confident about myself and my abilities.
·People appreciate what I do.
·I do things that make me feel good about myself.
|
·Consistent use of person-first language in all
written and verbal communication.
·Demonstrate efforts to identify and eliminate
stigma within the service system itself.
|
·Evidence of these values and indicators in each
County Annual Plan.
|
|
Evidence that consumers,
workers, administrators understand recovery
|
·I am treated as a whole person, not as a
psychiatric patient or label.
·Staff encourages me to take responsibility for
how I live.
·I can attend staff trainings about topics that
interest me.
·I am asked to “tell my story” and to help others
learn about recovery.
|
·Evidence of explicit recovery language in
mission, vision, and guiding principles documents.
·Evidence of visible and immediate availability of
information about recovery and recovery services/ options.
·Evidence of regular and ongoing
recovery-education for consumers and family members.
·Evidence that 100% of workers have participated
in orientation training about recovery.
·Evidence of policies and enforcement of policies
requiring person-first, respectful language in all written and verbal
communication.
·Evidence of encouragement and support for
“co-learning” activities where staff and consumers participate in training
together.
·Evidence that 100% of board of directors and
administrators have participated in recovery education.
|
·Evidence of explicit recovery language in
mission, vision, and guiding principles documents.
·Recovery oriented outcomes and procedures evident
in all contracts, training, and policies.
·Institute recovery training for administrators
and staff.
·Require agencies/contractors to demonstrate
recovery orientation, and outcomes are requisite for all contracts and
grants.
·Provide opportunities for “recovery dialogues”
between various stakeholder groups, including psychiatrists and consumers to
move toward shared understanding.
·Evidence that 100% of staff in policy and
administrative organizations have participated in recovery training.
|
|
Respect for diverse
cultural backgrounds, ethnicity, sexual orientation, etc.
|
·I feel my culture and lifestyle are understood
and respected.
·I have access to translators if needed.
·I feel I can tell people about my heritage and
healing traditions.
|
·Evidence of information available in a range of
locally relevant languages.
·Demonstration of adaptation of services and
treatment approaches to respect or support cultural differences.
·Demographics of provider staff reflect
race/ethnicity demographics of consumers served.
|
|
|
RECOVERY DOMAIN 2: Person Centered Decision-Making & Choice
|
|
Elements of a
recovery-oriented system
|
Ways this indicator can
be demonstrated
|
|
Indicator
|
Individual Indicator/Outcome
|
By Program/Services
|
By County, Regional, or
Statewide
|
|
Person-centered
/ person-authored service planning
|
·Staff sees me as an equal
partner in my treatment program.
·My treatment goals are
stated in my own words.
·Staff respects me as a
whole person.
·I chose my services.
·Staff understands my
experience as a person with mental health problems.
·Staff listens carefully to
what I have to say.
·Staff treats me with
respect regarding my cultural background, (race, ethnicity, language, etc.)
·I make decisions about
things that are important to me.
·I, not workers, decide
what should be in my treatment plan.
·I feel comfortable talking
with workers about my problems, treatment, personal needs and hopes.
|
·Inclusion of persons own
language re goals, objectives, etc. Service plan clearly reflects
individual’s preferences, goals, lifestyle, and interests.
·ROSA type assessment and
dialogue – conversational, broad based, outcome focused.
·ALL consumers have an
in-pocket copy of their personal plan.
·Individuals can easily
state why they receive services, what their service/treatment goals are, and
how services help them achieve those goals.
·Inclusion of consumer
selected others in planning process.
·Ongoing discussions
regarding progress and changes needed.
·Evidence that consumers
can change their plans upon request.
·Persons have regular
access to their personal records and charts upon request for both review and
input.
·Demonstration of creative
approaches to meet individualized needs.
|
·Mandates all contractors
and local systems to demonstrate evidence of person-centered planning.
·Address existing policies
and standards to identify and remove barriers to person centered planning.
|
|
Service
planning is built around building,
enhancing, and sustaining strengths
|
·My service plan helps me
build on my strengths and assets.
·My provider asked who in
my life is supportive of me.
·
I
get help to prepare for and pursue employment that is acceptable and
rewarding to me.
|
·A recovery oriented
service plan is negotiated and developed with each person served.
·The provider uses a
strength based assessment.
·
Qualified
individuals are employed.
|
·
Qualified
individuals are employed.
|
RECOVERY DOMAIN 3: Connection -- Community Integration, Social
Relationships
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Focus
on community connections
|
·I have friends I like to do things with.
·I have people I can count on when things are
difficult.
·I am free to associate with people of my choice.
·I receive support to parent my children.
·There is at least one person who believes in me.
·I have support to develop friendships outside the
mental health system.
·There are people who rely on me for important
things.
·I have support for challenging negative
stereotypes, stigma, and discrimination.
·I feel comfortable interacting with businesses
and organizations in my community.
|
·Evidence that workers help individuals develop
positive personal relationships.
·Evidence in service plans that workers encourage
and help individuals to access services and resources outside the mental
health system.
·Evidence that workers attend to consumers roles
as regular people (e.g. parents, workers, tenants, students), not just as
patients.
·
Signature
pages in service plans often reflect participation of persons across
programs, agencies, and families/friends.
|
·Develop public education campaigns to increase
awareness and reduce stigma about mental health problems.
·Develop mechanisms to coordinate service systems
at regional and state levels, e.g. mental health/vocational rehabilitation,
public welfare services, adult basic education, faith-based service
initiatives, and so forth.
·Public relations activities actively promote and
help others understand recovery.
·Consumer success is highlighted in public
education and relations campaigns.
·
Consumers
are involved in all public education and relations campaigns.
|
|
Family
Support
|
·My family gets the education or supports they
need to be helpful to me.
|
·Evidence of good working relationships with
family support groups.
·Evidence that consumers are encouraged and
supported to involve family members and significant others in treatment
decisions.
·Evidence that consumers are encouraged and
supported to develop constructive relationships with family members and
significant others.
·
Families
train providers about their experiences and needs.
|
|
|
Addresses
issues relating to stigma and discrimination both in the community and within
behavioral healthcare services
|
·
Workers really believe in me and in my
future.
·
I believe my provider helps educate the
community about mental illnesses.
|
·
Evidence of staff awareness and training
programs that challenge common stereotypes and assumptions about mental
illness.
|
·
Evidence of staff awareness and training
programs that challenge common stereotypes and assumptions about mental
illness.
|
RECOVERY DOMAIN 4: Basic Life Resources
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Attention to
basic material needs
|
·
I have transportation to get where I need
to go.
·
I have enough income to live on.
·
I believe my basic needs are met..
|
·
Evidence that agencies assist individuals
with basic material needs such as transportation and income.
|
·
Individuals are paid for work by the
county, region or state.
|
|
Strong focus on
Work/Employment/Education and Meaningful activity
|
·
I choose where I work or learn.
·
I have a job or work that I like doing
(paid, volunteer, part-time, full-time).
·
I have things to do that are interesting
and meaningful to me.
·
I have interesting options to choose from
for where I work or learn.
·
I have a chance to advance my education if
I want to.
·
There are things I want to do or achieve
in my life that have nothing to do with mental health treatment.
·
My provider believes that I can work and
supports me in my efforts to obtain employment.
|
·
Attention to and evidence of wide range of
work and education options.
·
Use of interest inventories and other
career selection tools, in addition to skill assessments.
·
Opportunities to “job sample.”
|
·
Ensure funding for employment training and
job-site support, stipends/scholarships for educational development, etc.
|
|
Securing safe,
decent, affordable home/housing
|
·
I choose where and with whom I live.
·
I have housing I can afford.
·
I feel safe where I live.
·
I feel comfortable and at home where I
live.
|
·
Active and ongoing assistance to help
individuals find and keep community housing of choice.
·
The County has a housing development plan.
|
·
Complaints about living facilities are
addressed by advocates or ombudsman.
|
|
Ensuring good
physical healthcare
|
·
Staff talks to me about my physical
health.
·
I have access to medical benefits that
meet my needs.
·
I have access to health services I need.
·
I have information about health issues
that relate to me.
·
I have the best possible health.
|
·
Availability of regular and low/no cost
physical health screenings and wellness services.
·
Evidence that workers help individuals get
healthcare benefits that meet their needs.
·
Evidence workers are knowledgeable about
psychiatric manifestations of physical illness.
·
Evidence that workers “rule out” physical
illness before assuming psychiatric etiology for problems.
·
Healthcare history is collected as part of
basic assessment.
·
Attention to healthcare issues integrated
into discussion about psychiatric services/treatment.
·
Evidence of worker knowledge about
physiological side effects and risky interactions of common medications.
·
Skilled nursing staff available easily for
consultation to both workers and consumers about consumer health care issues.
|
·
Nurses are employed to assist with health
issues.
|
RECOVERY DOMAIN 5: Self-Care, Wellness, & Meaning
|
|
Elements of a recovery-oriented system
|
Ways this indicator can
be demonstrated
|
|
Indicator
|
Individual Indicator/Outcome
|
By Program/Services
|
By County, Regional, or
Statewide
|
|
Focus
on wellness/self-management
|
·
Staff supports my self-care and wellness.
·
Staff helps me to build on my strengths.
·
Staff helps me explore resources for
spiritual growth, if I want such help.
·
Services have helped me to be more
independent and to take care of my needs.
·
I am comfortable asking for help when I
need it.
·
I have found ways to effectively manage
symptoms (of mental illness, substance abuse, trauma) and problems in my
life.
|
·
Evidence of mechanisms, training, and
support for consumers to develop personal Wellness Recovery Action Plans
(WRAP).
·
Evidence of support for and willingness to
help individuals explore holistic or alternative approaches to self-care.
·
Evidence of regular curriculum and
resources for wellness education.
·
Evidence that workers model good wellness
attitudes and activities.
·
Demonstration of willingness to help
individuals find ways and resources for spiritual growth.
|
|
|
Proactive
crisis planning, effective response and hospital alternatives
|
·
I have a say in what happens to me when I
am in a crisis.
·
I have assistance in creating a plan for
how I want to be treated in the event of a crisis, such as an advance
directive.
·
I have a personal plan to help me and my
supporters get through a crisis.
·
I have found ways to manage with symptoms
and difficult situations that work effectively for me.
|
·
Encouragement, education, and support for
consumer use of psychiatric advance directives.
·
Availability of respite or other crisis
prevention services.
·
Established mechanism for helping
consumers be aware, understand, and complete personal psychiatric advance
directives.
|
·
Evidence of leadership in promoting and
supporting advance directives.
·
Identification and minimization of
policies or practices that may interfere with implementation of advance
directives when needed.
·
Evidence of providers working together to
assure easy maneuverability among programs.
·
Individuals have choice in where to
receive crisis services independent of county of residence.
|
|
Attention
to spirituality & finding meaning
|
·
I have support and encouragement to
explore and express my spirituality, if it is important to me.
·
I have support and encouragement to use my
spirituality as a path to wellness.
|
·
Evidence of training and supervision for
staff around spirituality in mental health treatment and support.
|
|
RECOVERY DOMAIN 6: Rights & Informed Consent
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Emphasis
on rights and informed consent
|
·
Staff gives me complete information in
words I understand before I consent to treatment or medication.
·
My right to refuse treatment is respected.
·
I know my rights and what to do if they are
abused.
·
Staff respects my wishes about who is and
who is not given information about my treatment..
·
I receive information about my rights as a
client, as a citizen, and as a human being in words I understand.
·
Staff “goes to bat” for me to help me
protect and uphold my rights.
|
·
Provide information about individual
rights.
·
Evidence of actively upholding,
protecting, and advocating for individual rights..
·
Evidence that ensuring fully informed
consent is day-to-day practice in all aspects of care, treatment, planning,
and personal decision-making.
·
Promotion and support for voter
registration, voting, and other civic activities.
|
·
Demonstrate development and implementation
of an informed consent policy applicable to all services and programs.
·
Establish and ensure widespread
understanding of consumer rights and responsibilities by developing a
state-wide consumer bill of rights.
|
RECOVERY DOMAIN
7: Peer Support & Self-Help
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Availability
and support for self-help, peer support, consumer-operated services
|
·
I have access to other consumers who act
as role models.
·
There is a consumer advocate to turn to
when I need one.
·
I am encouraged to use consumer-run
programs.
|
·
At least 1% of total mental health budget
set aside for development and operation of peer services.
·
Training and education programs available
to educate and prepare consumers for employment in human service arena.
·
At least one independent (501-c-3)
consumer operated service in each locality.
·
Evidence that workers are knowledgeable
about peer support, self help, and consumer operated services available
locally.
·
Evidence that workers support and promote
consumer participation in these services.
·
Evidence of collaborative agreements and
positive working relationships between consumer operated and traditional
services.
|
·
There is at least one free standing
peer/consumer operated service in each service area.
·
At least 1% of the total mental health budget
is allocated for the development, operation, support, and evaluation of peer
services.
|
|
Employment
of consumers as workers in traditional and non-traditional service &
administrative/
policy
organizations
|
·
I personally know consumers who are
working as paid staff in the mental health services.
|
·
Evidence of workers at all levels of
traditional and non-traditional organizations who are consumers – and “out”
as personal experiences with mental illness.
·
Career paths open to individuals within
traditional organizations.
·
Mechanisms for dialogue regarding
challenges presented by and faced by consumer workers.
·
Attention to agency ethics policies and
practices in light of impact of consumer workers.
·
Evidence of affirmative action program
within organizations.
·
At least 5% of all staff in mental health
agency are individuals who receive or
received services.
|
·
Evidence of affirmative action program for
hiring C/S/X into regular positions.
·
Evidence of advocacy for or use of
Medicaid as source of funding for peer delivered services.
|
RECOVERY DOMAIN 8: Participation, Voice, Governance &
Advocacy
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Active
involvement of consumers and family members in advocacy, leadership, with
representative voice in governance
|
·
I have a say in how my agency operates.
·
I sometimes get active in causes that are
important to mental health consumers.
·
If I am not happy with services or
conditions, I know what to do to file a grievance or get changes made.
|
·
Evidence of consumers as voting members of
governance boards, advisory committees, and formal planning groups.
·
Accommodation mechanisms in place to
assist/support consumer involvement in boards, committees and other advisory
and governance bodies.
·
Regular use of various input mechanisms
for ideas, feedback, and complaints (e.g. surveys, focus groups, etc.)
·
Consumers/family members report feeling
heard and respected as part of these groups and processes.
·
Evidence that consumer input is valued and
used in decision-making and planning.
·
Leadership/advocacy training programs and
mentorship available.
|
·
Evidence of consumers as voting members of
boards, advisory committees, and formal planning groups.
·
Development of an “expert pool” of
trained/experience consumers/families who can provide leadership/advocacy
education and mentorship.
·
Evidence of efforts to recruit, invite,
train, accommodate and support consumers and families in leadership,
governance, advisory roles.
·
Evidence of consumer involvement in
provider contract development and review.
·
Evidence of an “Office of Consumer
Affairs”, or its equivalent, at high levels in state, regional, and local
administrations.
|
RECOVERY DOMAIN 9: Treatment Services
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
Indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Access
to appropriate and effective pharmacology
|
·
The doctor worked with me to get me on
medications that were most helpful to me.
·
I get information about medications and
side effects in words I understand.
|
|
|
|
Access
to range of effective treatment approaches
|
·
I have good service options to choose
from.
·
Services are helpful to me.
·
Services help me develop the skills I
need.
·
Staff has up- to- date knowledge about
effective treatment approaches.
·
I have information and guidance I want
about services and supports both inside and outside the mental health agency.
·
I can get services when I need them.
·
I can see a therapist when I need to.
·
I have enough time to talk with my
psychiatrist.
|
|
|
|
Availability
and integration of trauma specific treatment and support
|
·
I can get specialized services for past or
present trauma or abuse if I need or want them.
·
I feel safe from violence, trauma, abuse,
and neglect.
|
·
Evidence of work to identify and eliminate
practices that may be re-traumatizing.
·
Consumer operated self-help groups for
individuals dealing specifically with mental illness and trauma related
issues.
·
Employment of staff trained in providing
trauma-informed treatment.
|
·
Inclusion of trauma support services in
all contracts.
·
Evidence of work to reform insurance and
Medicaid policies that do not include trauma treatment or support.
·
Development and promulgation of training
and technical assistance to promote trauma informed services at
local/regional levels.
·
Establishment of Trauma Advisory
Committees to better identify needs.
·
Evidence of efforts to improve detection
and prevention of abuse in institutional settings
|
|
Integrated
substance abuse services and treatment
|
·
I can get combined treatment for mental
health and substance abuse issues.
·
I can chose from a range of services that
may help me manage substance use issues.
|
|
·
Evidence of training for county staff
about regulations and competencies for co-occurring mental illness and
substance abuse disorders.
|
|
Access
to jail diversion and jail-based services
|
·
I have access to jail diversion services
if I need them.
|
·
Evidence of coordination and collaboration
with law enforcement services.
·
Evidence that jail diversion services are
available in the community for persons with mental health problems.
·
Evidence that mental health services are
available and delivered in jail settings.
|
·
Evidence of inclusion of law enforcement
and judicial personnel in county recovery efforts.
|
RECOVERY DOMAIN 10: Worker
Availability, Attitude and Competency
|
|
Elements of a recovery-oriented system
|
Ways this indicator can be demonstrated
|
|
Indicator
|
Individual Indicator/Outcome
|
By Program/Services
|
By County, Regional, or Statewide
|
|
Ongoing attention to building worker positive characteristics and competency in
recovery practices
|
·
Workers have up-to-date knowledge about
the most effective treatments for me.
·
I feel respected and understood by mental health
workers.
|
·
Evidence of establishment of
recovery-oriented competencies.
·
Evidence of recovery- oriented training
included in all aspects of orientation, in-service and professional
development activities.
·
Evidence of organizational support for
workers to develop and use recovery-oriented approaches.
·
Evidence of ongoing training and
supervision activities that help deepen worker understanding of recovery
practices.
·
Evidence of ongoing training in up-to-date
promising and evidence-based practices.
·
Supervision practices help workers develop
and implement recovery-oriented approaches for each person served.
|
·
Evidence of efforts to influence university
curricula for all human service and medical fields to include recovery
information as part of basic training.
·
Establishment of core competency standards
regarding knowledge of recovery principles and practices.
·
Include recovery competencies in credentialing
and certification processes.
·
Requirement that recovery-oriented
training is part of every application for continuing education for renewal of
state licensure.
|
RECOVERY DOMAIN 11: Addressing Coercive Practices
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual
indicator/Outcome
|
By
Program/Services
|
By
County, Regional, or Statewide
|
|
Minimized use
of coercive approaches (seclusion/
restraint, involuntary treatment, guardianships, payeeships, threats, etc)
|
·
Staff helps me to stay out of psychiatric
hospitals and avoid involuntary treatment..
·
Medication and treatment is not forced on
me.
·
Staff does not use pressure, threats or
force in my treatment..
·
If I have a payee or community commitment
order, I know why and know exactly what I have to do to be released from
these stipulations.
·
I chose how to manage my personal
finances.
·
I am free from coerced treatment.
|
·
Data collected and tracked regarding use
of coercive approaches, with feedback to individual services.
·
Training for staff on alternatives to
coercion.
·
Time limited: evidence that individuals
are “graduating” from involuntary care, guardianships, payeeships.
·
Individuals on involuntary treatment,
guardianships, and payeeships know the reasons why these mechanisms are in
place and what they need to do to get out from under them.
·
Demonstration that agencies respect and
attend to the dignity and rights of individuals subjected to involuntary or
coercive practices.
·
Evidence that every person under a coercive
mechanism (payee, conditional release, outpatient commitment) has a written
plan of achieving self-management in this area of his/her life.
·
Evidence that alternatives to involuntary
treatments or coercive approaches are identified, promoted, used in services.
·
All data is reviewed regularly by the
Board of Directors.
|
·
Evidence of mechanism to track data about
incidence and prevalence of use of wide range coercive practices within
system.
·
Transparency in data about number of
clients receiving voluntary and involuntary inpatient hospitalization in
public and private hospitals; involuntary outpatient commitments, etc.
·
Transparency in data about use of
seclusion, restraint, restrictive holds in all settings.
·
Evidence of feedback loop to agencies,
services, hospitals regarding coercive practices data.
·
Evidence that alternatives to involuntary
treatments or coercive approaches are identified, promoted, used in services.
·
All data is reviewed regularly by
administration, advisory committees, and other key stakeholders.
|
|
Managing risk
& supporting safety for workers, consumers and family members
|
·
I know what to do if I feel unsafe where I
live, work, socialize, or travel.
·
I am aware of people, places, times, and
things that cause me difficulty – my “triggers”.
·
I am aware of ways to handle my “triggers”
that work for me.
|
·
Workers knowledgeable about assessing risk
factors and probability.
·
Evidence of individualized approaches to
managing and minimizing risk.
·
Availability of training and support for
consumers about personal safety and develop skills for identifying and
managing risk presented in their living situations/neighborhoods.
·
Ensure that workers have access to regular
information and training about personal safety and risk management for office
and community settings.
|
·
Evidence that crisis response services are
available and staffed with individuals trained and competent in mental health
and substance abuse crisis intervention.
·
Evidence of service protocols that promote
mental health crisis response prior to police intervention in most mental
health crisis situations.
|
RECOVERY DOMAIN 12: Outcome Evaluation & Accountability
|
|
Elements
of a recovery-oriented system
|
Ways
this indicator can be demonstrated
|
|
Indicator
|
Individual Indicator/Outcome
|
By Program/Services
|
By County, Regional, or
Statewide
|
|
Orientation toward
continual learning and improvement through regular outcome evaluation with
data used to guide positive change
|
·
I achieve personal outcomes that are
meaningful to me.
·
Workers help me recognize when I am making
progress.
|
·
Personal outcomes identified and measured
as evidence of progress and quality services.
·
Systemic outcomes evaluated regularly.
·
Evidence that consumers are involved in
the identification of outcomes and in the process of evaluation of services.
·
An attitude of “catch ‘em doing it right”
is evidenced by workers who recognize progress and do not always focus on
problems and crises.
·
Evidence that consumers receive regular
positive feedback on progress.
·
All outcome data is reviewed regularly by
the board of directors.
|
·
Develop or adopt standardized recovery-focused
outcome measures to be used as part of regular quality assurance
activities. Included in this are both
personal consumer outcomes as well as service or system outcomes.
·
Full transparency in data collection and
reporting.
·
Evidence that findings from outcome
assessments and evaluations are used to improve services and programs.
·
Evidence that recovery orientation and
outcomes are part of all standards, licensing, and assessments for all
services.
·
Involve consumers in outcome evaluation in
multiple roles, including developing outcome indicators, instrument
development, interviewers, data entry & review, etc.
·
Evidence of support for continuous quality
improvement at levels.
|
Implications of Shifting Toward a Recovery-Oriented
Mental Healthcare System
A vision
without a task is a dream and a task without a vision is drudgery – but a
vision with a task can change the world.[43]
Recovery is
a person-centered phenomenon. You can’t
“do recovery” to someone. You can’t “do
services” that will force someone to recover. Recovery-based services will
always be one small part or one small ingredient for a person with psychiatric
disabilities to achieve a meaningful life in the community[44]
Nothing about
us without us. We want to be involved at every level of decision-making; we
don’t want to be just relegated to an advisory board.[45]
˜™
Challenges and Barriers
Systems, like people, do not change easily. Every system is perfectly designed to stay
exactly the way it is. For meaningful
change to occur some discomfort, imbalance, uncertainty, and acceptance of risk
are prerequisite.
Taking on the challenge of shifting toward more
recovery-oriented approaches in our service system means making some fundamental
changes in some of the core aspects of our work. And there are significant challenges to be
overcome. Not in the least of which is
developing a common understanding about process and outcomes of recovery in
mental health, generating a set of concrete
indicators that represent an organization’s focus on recovery and its effectiveness in stimulating, facilitating,
supporting, and sustaining the process
of recovery with the people it serves, and
ways to measure incremental change toward these goals. Understanding these challenges and
identifying strategies to address them increases the likelihood that a change
strategy will result in the desired outcomes.
The 2004 Recovering Pennsylvania Conference report
identified some of the fundamental challenges and barriers of moving toward a
more recovery-oriented mental healthcare system in Pennsylvania.
These included the following:
Fear –
Providers fear of risk/liability of exploring shared or negotiated risk and
consumer fear of losing services, facing stigma, losing control, of failure. A
disconnect between the rhetoric of a program or organization and the actual
experience of consumers, family members, and workers. Programs may talk about supporting consumer
self-determination and empowerment, but refuse to allow anything risky.
Attitudes -
Basic resistance to change; difficulties in trying different things, entrenched
attitudes and resistance to examining assumptions; belief (by both some
consumers and staff) that recovery is not possible for people with mental
health problems. Recognition that
recovery principles run counter to the way things operate now. Strong beliefs
that people with serious mental health problems need intensive and life-long
caretaking. These beliefs may be held to
some degree in every corner of the system, including workers, family members,
administrators, community members, and consumers themselves. Stigma and discrimination within the system are major impediments to change.
Knowledge and
Emotions – Differing views of recovery among stakeholders. Anger and frustration. Lack of patience for change. Poor coordination, collaboration, or
communication among stakeholders. Consumer beliefs that recovery is a concept
that has been (or will be) co-opted by the system to justify reductions in care
and services. Sometimes this has been a
reality.
Providers –
Lack of understanding about what recovery actually is and how recovery-oriented
services operate differently than traditional services. Often related to lack of ongoing training opportunities
for staff at all levels of the system. Regimentation of services and programs
(due in part to funding requirements and regulations); extensive paperwork.
Requirements limit time for service delivery and relationship building. Lack of trust between consumers and
providers. Use of language that does not
reflect hope, positive expectations or recovery.
Medical Model
Orientation - Entrenchment in traditional medical model approaches and
assumptions. Difficulties viewing mental illness as more than a biological
phenomenon and reliance of medication as the primary treatment option;
resistance to expanding the role of mental health services to address broader
life and support issues of the people receiving services. Emphasis on primacy
of medication as treatment. Narrowing the definition of recovery to “symptom
management” and focusing change initiatives to over simplified, feel good
strategies that may or may not be effective in achieving real
transformation.
Lack of Basic
Resources – Limited economic opportunities/jobs, housing, reliable
transportation, opportunities for socializing in regular community settings.
Education &
Training - Lack of education, training, and support for both consumers and
mental health workers to do things differently. Little knowledge about how
recovery happens, or about rights. Few
recovery mentors or role models for either consumers or mental health workers. Workers
often do not know what do differently, especially in terms of relationships
with consumers, assessment, service planning/review, conflict negotiation and
crisis response. Competencies of
recovery-oriented workers are not well articulated or integrated into formal
training and professional development activities. Workers who do work
differently – or want to – may lack support of their organizations or
colleagues.
Regulatory/Organizational
- Policies and regulations that limit flexibility and specific recovery
practices. Overwhelming rules/policies/regulations and a rigidity that limits
opportunities to change them. Counties focused on regulatory compliance, not
creative approaches to achieving outcomes. Structural and philosophical
divisions between OMHSAS and Department of Health (DOH), county administrators
and single county authorities. Quality evaluation and licensure reviews that
focus on structural components and standards compliance rather than personal
outcomes and service effectiveness.
Funding –
Inequitable funding across agencies. Focus on narrow definitions of “medical
necessity” - on the needs of the body, and does not include the needs of the
mind, emotions, or spirit. Reinforces the medical model orientation. Lack of
flexibility or capacity for individualized treatment. Little funding for peer support resources
statewide. Funding structures that pay for “more of the same” and have little
capacity to leverage the flexibility needed to support a different array of
services. Limited or no opportunity to
consider a broader array of treatment approaches, including alternatives to
traditional medical treatment.
Consumer &
Family Involvement - Limited consumer and family involvement at all levels.
Resistance to consumers and family members as full partners in planning,
governance, training, and service delivery activities. Self-congratulations for
tokenistic appointments or advisory groups with no power. Exclusion from
education initiatives and lives of their family members. Mixed or dismissive
messages about the importance of peer support options both as stand-alone
services and within the umbrella of a more traditional agency. The language may be there, but the funding
and technical support is not. Similarly
there is frequently mixed response and comfort with employing people in
recovery from mental health problems as staff in traditional agencies, despite
growing research support that service outcomes may be enhanced through this
practice.
Addressing Challenges and
Barriers
The first steps of transformational change are to
develop a vision of the desired destination
and to plot a roadmap for getting there. The roadmap must include not
only the proposed route, but also an understanding of how the path may twist
and turn and what roadblocks may be anticipated. Sometimes detours and “rest stops” are
necessary. However, if there is a firm
destination in mind and a commitment to getting there, roadblocks, detours, and
rest-stops do not derail the journey.
The following challenges and barriers are
highlighted as needing critical review, strategic planning and specific actions
to enable the forward movement of transformation to a more recovery-oriented
system in Pennsylvania. Developing supports and resources in
addressing these core areas can create a strong foundation for future
activities.
Power
The strong civil rights and empowerment roots of
recovery in mental health have helped us understand that power cannot and
should not stay concentrated in the hands of a few. The recent rise of interest and initiatives
focusing on empowerment and self-determination are representative of the necessity
to come to grips with the need to rebalance the traditional power structure
within the mental healthcare system.
The mental healthcare system has considerable
influence and power over the lives of the people it serves. Control of access
to treatment resources and the kind of services received, determinations of
capability and competence for decision-making, ability to use coercive
mechanisms to enforce compliance to treatment requirements, living
arrangements, lifestyles, creating and documenting personal lives and history
through clinical records are only a few of the myriad ways the system holds
power over the persons it serves. This
power can be overt and obvious, but it is also often very covert and
communicated through assumptions, language, and expectations.
One of the most fundamental challenges of
systems transforming to a recovery orientation is to take an honest look at how
power is held and communicated within the service system. One of the most
important areas for providers to review is the assumption that the professional
is the sole expert and “knows best”.
This stance denigrates the knowledge and expertise that individuals have
gained about their own lives and needs and de facto is actually diminishing and
patronizing to the dignity of people.
However, shifting to a “consumer is always
right” approach is equally dismissive of the knowledge, expertise, and
resourcefulness of providers which can contribute depth and breadth to a
person’s understanding about his/her circumstances and options. This is the
basis for considerable concern about risk and liability on the part of
providers who believe they must manage risk by maintaining firm control
over those they serve. If consumers are free to do anything they
want, providers believe they will be left “holding the bag” when some of these
decisions result in untoward consequences.
Both of these stances are limiting, polarizing
and frequently non-productive since they often result in power struggles,
resistance, reactance, reluctance and retaliation on the parts of both
consumers and providers. Often consumers
give up fighting for themselves and find it simpler to allow the system to take
care of them and make decisions for them.
Deegan refers to this phenomenon as “spirit breaking”. Spirit breaking is often mistaken for
acceptance, compliance and satisfaction.
In a recovery-oriented system the goal is to
rebalance power so that the expertise and contributions of both the consumer
and the provider are mutually respected and have bearing on decisions about
treatment. In this “power with”
orientation, the fiduciary responsibility of the worker to act in the best
interest of the consumer remains intact, but the decision of what is in the
best interest no longer rests entirely with the professional.
Consumers and family members are becoming more
active partners in service design and delivery, demanding and exercising voice
in what has been primarily professional domains. As the balance of power shifts, the nature of
helping relationships becomes less prescriptive and more collaborative.
Professionals are less likely to be entitled or empowered to make overarching
treatment or lifestyle decisions which the staff person considers to be in the
best interest of the client. While these
changes may decrease the traditional power of the mental health professional,
they may increase the mutual empowerment which allows shared goals to be
accomplished.
In a
recovery-oriented service system, attention to person-centered/person-authored
service planning, individual and collective voice in planning and
policy-making, governance, administration, training, evaluation, and other
aspects of the system are paramount. The
adage “nothing about us without us” captures the fundamental importance of how
power in the mental health system must be rebalanced.
Relationships
Closely related to the balance of power is the
relationship between those who provide or administer services and those who
need or use these services. As the
balance of power is leveled, many questions emerge about roles and boundaries
between providers and consumers. This is compounded when people who may have
received services, or are currently receiving services from an organization,
are engaged as workers or board members for that same organization. The
traditional relationship rules that clearly demark the roles of “workers” and
those of “clients” are confounded when the reality of the old adage “once a
client always a client” is now “once a client, now a colleague”. Workers and consumers may both struggle with
this uncharted territory and when unresolved these challenges can create harm
and difficulty for all involved, potentially thwarting well intended efforts.
This phenomenon is not limited to traditional
organizations or services. One of the unique benefits of peer support and
consumer-delivered services is that helping relationships are founded on the
basis of shared experience and more equal status. The traditional
professional/client roles are not entrenched.
However, there are also many challenges in these relationships which may
include balancing employer expectations and organizational responsibilities
with personal relationships and boundaries.
Role strain is pervasive for many consumer professionals and peer
support specialists.
There are a number of agencies and organizations
who have developed successful approaches to addressing these concerns. Further, many professional guilds have been
working to address these issues in updated versions of their codes of ethics
and practice guidelines.
Coordination and community
Community connection and coordination needs to be
considered on two distinct levels. From
a systemic or programmatic perspective, there is increasing need for
coordinated and integrated services to be established within and across
networks as well as across systems. The
NFC Report repeatedly references the need for integrated treatment strategies,
particularly in the areas of co-occurring substance abuse and lifespan
screening. Schools, primary health care
and criminal justice are specified as key areas for coordination.
There are a number of reasons for this emphasis
on integrated, coordinated community-based care. The primary reason is to reduce the
experience of fragmented, fractured, and conflicting care by consumers, their
family members, as well as providers themselves. Secondly, it recognizes that
mental health problems are not rare or relegated to a discrete subset of the
population. They reach across cultures, ages, communities, genders, and so
forth. Treatment is no longer isolated to psychiatric institutions or mental
health facilities, but occurs in a range of community settings from McDonalds
to the local housing authority apartment complexes and in the offices of
primary care physicians. Treating mental health problems outside of the context
of where and how people actually live is ineffective and often
stigmatizing.
Maximizing use of public dollars means
coordinating resources and care from a myriad of public and private services.
Finally, for many environmental problems and stress relating to homes, jobs,
physical health, and relationships factor into their mental health problems,
either as causes or as exacerbations. To really treat mental illness
effectively, often the environmental issues must be addressed as well.
From a more individual vantage point, it has
been a common experience of people with serious mental illness to have their
lives enveloped by services. This is so prevalent that some of the “resistance
to treatment” that providers identify in the people they serve can be
attributed to a fear of being “swallowed up” by services. Traditionally a good mental health system has
been assessed by its comprehensiveness – the number and type of services
provided: housing, work, treatment, socialization, health transportation, and
so forth. Individuals receiving care and support had little contact with the
community as citizens and little opportunity to build relationships with
individuals not connected with mental health services. Services were substitutes for life. Further, the system encouraged individuals to
become dependent on these services, which often had few clear paths leading to
an exit. Systemically, this created a
bottleneck with little flow-through and large demand waiting for access. Individually, this creates an environment
whereby consumers become life-long clients and the expectation of “good
clients” is compliance and maximal use of these services. People become institutionalized to their
services in the community rather than an asylum on a hill. Further, fluctuating
mental health budgets are a source of anxiety for consumers who worry whether
the programs upon which they have become dependent will continue to be funded.
From a recovery vantage point, the role of the
service system is to help individuals establish and sustain rewarding and
meaningful personal lives. This may
entail a wide range of services and supports – some of which may be offered by
mental health programs, but many of which are available in other venues in the
community: community colleges, local
clubs and associations, businesses and landlords, neighbors, religious groups,
and so forth. The role of mental health
services is no longer to be all things to all people, but to help individuals
meet their personal needs through a wide array of community resources. Similarly, it is not the role of mental
health workers to substitute for a friendship network for the people they
serve. It IS their role to help
individuals build a supportive network of friends and family members with whom
they can have reciprocal and valued relationships.
Every mental health treatment plan should have
clear references to how the program is helping the individual with community
resource acquisition and the strengthening of his/her personal support
networks. These are the things that
build resiliency and help individuals manage life’s ups and downs with minimal
psychiatric impact. Mental health
treatment and services are a means to an end; community, connection, and
relationships are part of that end.
Peer Support and Consumer-Run Services
Peer support and consumer-run services are
emerging as an important promising practice.
A recent multi-year, multi-site study of consumer-run services sponsored
by the Center for Mental Health Services (CMHS) found that consumer-operated
peer support services are effective and increase well-being. Peer support can
reduce symptoms, enlarge social networks and enhance quality of life,
especially when offered in adjunct to traditional mental health services.
Further, people who are offered consumer-operated peer-support services show
greater improvement in well-being over time than those offered only traditional
mental health services.
In addition to NFC recommendations, research evidence is mounting that peer
support and consumer-operated services must be a part of the service array
available to persons with psychiatric disabilities.
It may be useful to clarify what is meant by peer
services. Consumer-operated services differ from traditional mental health
services in some basic ways that include the following characteristics:
·
Non-reliance on professionals. Participants in self-help programs take
responsibility for planning and managing the group.
·
Voluntary participation. Participants stay involved
by personal choice, not by requirement or force, or as a way to continue
receiving entitlements.
·
Equality among participants. Participants, whether receiving services or
providing them, are equal.
·
A non-judgmental atmosphere. This promotes trust and mutual acceptance.
·
Informality and avoidance of artificial barriers
such as those between “patients” and “professionals.”
Further, a common set of values and philosophies
typically guide consumer-operated services.
·
Peer
Support: Opportunity
for mutual and reciprocal caring among individuals who share common
experiences.
·
Recovery: The vision, principles, and practices that
stimulate and support people with serious mental illness to “get better” and
lead personally rewarding lives regardless of the presence or absence of psychiatric symptoms.
·
Hope: A positive belief in a worthwhile future.
·
Empowerment: Having control over one’s life and having
capacity to impact things that affect one’s life.
·
Independence: Stresses the importance of
striving for self-reliance, self-governance, and the opportunity to function as
productive citizens.
·
Responsibility: Individuals must take personal responsibility
for themselves, their decisions, and their actions, as well as their community.
·
Choice:
Opportunities to make informed decisions about treatment, services, housing,
lifestyles, and things that matter in one’s life.
·
Respect
and Dignity: All individuals are
valuable and have positive things to contribute. All individuals have civil as well as human
rights that should be protected at all times.
·
Social
Action: Change comes to individuals
and to systems when people take direct action to make desired changes
occur.
These characteristics and values have been
translated into a wide variety of consumer-run services including peer support,
housing, crisis response and respite, benefits counseling, education, advocacy,
evaluation and so forth.[52] Further, examples of each type of these
services can be found each in three different kinds of organizational structures:
1) free standing consumer-owned/operated non-profit organizations; 2)
consumer-run programs under the auspice of another organization; and 3) peer
support specialists hired into traditional agencies to provide these services.
Currently considerable work is being done to
identify standards for peer support services
and to develop mechanisms for their eligibility for funding through Medicaid.
Workforce issues
“Without any infrastructure for recovery-based
mental health care, it’s no wonder that so many administrators and clinicians
have not bought into what is essentially a basic human right to feel
better. In fact, just mentioning the
word recovery seems to cause a stir, depending on your training, beliefs, and role
in the mental health rehabilitation system.”
Multiple evaluations and studies of services and
programs show that worker attitude continues to be a significant barrier to
personal recovery. Often these attitudes
are openly verbalized, but as important, they are enmeshed into standards, policies,
and practices. A 2004 study in Pennsylvania
found that several key attitudes differentiated services with a stronger
recovery-orientation from others.
Less recovery-oriented services scored significantly higher on the prevalence
of the following attitudes:
·
Professionals are experts who know best.
·
People will need help all their lives.
·
There is an “us-them” feeling around here.
The concepts of recovery are not integrated into
the academic training and curriculum of most professionals working in the mental
health field, with the exception of a few programs or departments. Teaching recovery at an academic level is
more than presenting philosophy and principles, it is also teaching
recovery-based competencies as part of a core curriculum.
There is a need to establish recovery-based
competencies, especially ones which over-arch specific professional guilds or
roles. There is work going on in this area in several places in the U.S.
as well as internationally.
You get what you measure. Traditional approaches
to quality assurance focus on compliance to a set of standards, measurement
against a predefined set of benchmarks, or satisfaction with services measures.
Often quality assurance focuses on process measures such as contact hours, wait
times, percentage of signed treatment plans, and compliance to standards rather
than the actual impact of a service in the life of the individual person.
Outcomes such as hospitalization rates, job placement, contact with criminal
justice services, symptom management, attaining personal goals and so forth
have also become increasingly important as measures of quality in mental health
programs.
There are benefits and limitations to each of
these approaches. For example,
satisfaction surveys have become increasingly popular as quality tools in
mental health. They ask, essentially, “Are you happy with what you are getting?” What if a person has never received anything
else? Has no expectation or image of a service or life different than this? Has
nothing else to choose from? Or is worried that if he/she says he is not
satisfied that something bad will happen – that he/she will lose services
and/or that the program will lose funding and then he/she will lose the
service. Often satisfaction is based solely on the limited range of what a
person knows, and having nothing to compare it with, figures it is okay. The program gets information that all is well
which can create a false sense of complacency and perpetuate a status quo.
With the current interest and emphasis on
recovery, new questions are emerging about how to define and measure it in both
individual and programmatic contexts. If recovery is a highly individual
process, what are the outcomes? The
benchmarks? Are there any consistent
measurement points or parameters? How
can programs be accountable to recovery approaches if they cannot be measured?
While recovery measurement is in a fledgling
state at this time, there are a variety of tools and instruments in various
stages of development that can help administrators, clinicians, peer providers,
and consumers establish and assess recovery-based care. Presently, the Recovery Oriented System Indicator
(ROSI) Measure is receiving considerable attention and undergoing broad scale
piloting and validation and holds promise. As part of the recovery initiatives in the
State of Wisconsin, the Recovery
Oriented System Assessment (ROSA) was developed as an approach to assessing
personal outcomes and to augment other quality assessment measures already in
use by the behavioral healthcare system.
One of the things that characterize
recovery-oriented evaluation and quality assurance is the fundamental
involvement of consumers and family members in the development of the
instrument and evaluation methods, as well as evaluators themselves. Pennsylvania
has solid experience in supporting consumers and family members as primary
evaluators of the quality of services.
Medical Necessity & Evidence Based Practices
The concept of medical necessity drives both
access and funding in most components of the behavioral healthcare system. Part of the challenge with this concept is
not on the “necessity” but on the definition of “medical”. Pennsylvania
has successfully, through the inception of the Pennsylvania HealthChoices Medicaid
managed care program introduced a broad behavioral healthcare mandate to public
services, including housing, respite, peer support, and fitness. This has
helped to expand the range of resources, focus of services, and the definition
of medical necessity. However, introducing recovery concepts as a driving
principle in the system also raises the bar. It challenges service systems to
grapple not only with assumptions about psychiatric disorder, chronicity, and
healing but also with what it takes to truly help individuals build real lives
and the role and limits of the system in this process.
At one point there was understanding that the
body was one element of medicine, equal to the mind and the spirit. Huge advances in science, technology and
pharmacology in the last half of the twentieth century have resulted in a
narrowing of this focus and placed emphasis on those aspects of “medical” that
a pill can fix or a device can measure.
More recently some branches of medicine have
returned to the importance of healing and the recognition that for a person to
heal from a disease or disorder often takes more than pills and machines.
People become unwell – and well again – in an environmental and social context. These factors are hugely influential on
biological aspects of human functioning.
Medications are an important part of the picture for many people,
whether they are for treating diabetes, asthma, cancer, or mental illness. However, unless environmental and often the
social and spiritual factors are also incorporated into a treatment or support,
there is no healing.
It does not make sense to prescribe things that
are not needed to help a person heal.
Yet this is commonly done when we “prescribe” that a person have hours
of day treatment or participate in endless, often redundant groups. It does
make sense to work with each individual to identify the kinds of things that
that person believes may help them heal. This is medical necessity. The skill of the provider includes helping to
bring an individual to the understanding that change is both needed and do-able
in their lives, that there are a range of avenues for achieving changes, for
helping individuals make informed choices about their personal care and
developing ways of assessing the effectiveness of that treatment against their
own standards of success. In order to shift to a more recovery-oriented system
of care, a broader definition of “medical necessity” needs to be considered.
Evidence based practices are similar. Certainly
it does not make sense to provide services that do not work. Using a body of research findings is one
important way of determining what works and what doesn’t work. Some of the practices promoted as
evidence-based do have a considerable body of research to substantiate their
effectiveness in achieving certain desirable outcomes. However, psychiatric
services have traditionally not been well researched, nor have research funds
been available to investigate a wide range of approaches to services. Further, many of the outcomes assessed in
psychiatric service research have been determined by the researchers, funders,
and pharmaceutical firms, and have not been informed by the practical or lived
experience of individuals who have been diagnosed with psychiatric
disorders. Good, effective, and cost
efficient mental health care is in the interest of everyone. Caution must be
exercised, however, to ensure that the definition of “evidence” and the
parameters of “evidence based practices” are broad enough to encompass the
needs of individuals actually using the services.
Research and assessment of quality should not be
relegated to only academics or special-interest funders. Part of the
transformation to recovery-oriented care is the need to instill the values of
self-reflection, ongoing program evaluation, and a desire to continually
improve how behavioral healthcare services help individuals with their personal
recovery. This entails seeking out new
information from many arenas, including academic studies, and using this
information to improve the quality of care for the persons services. However, it also means that every program
should be accountable to its own internal and external evaluations and to look
forward to findings that will help them help people in their process of
recovery.
Financing
In an era when level-funding feels like a
success, when need and demand far outstrips the available resources, when
social and human services are devalued politically, when we are constantly
asked to do more and with less, discussing financing is difficult. However, you get what you pay for. Hence
financing must be considered. Many services are underfunded and providers work
very hard to make their resources stretch to cover all the needs of the
individuals they serve.
In addition to ensuring an adequate foundation for
basic care, several innovative approaches to financing are in consideration by
various mental health authorities. These
include:
·
Efforts to capitate and manage funding through
health networks such as HealthChoices. Used well, this approach can allow for
more flexibility than traditional fee-for-service funding approaches. Emphasis in many of these managed care
services is on accountability for outcomes rather than prescription of a
specific set of required services. In Pennsylvania,
HealthChoices shows promise as a vehicle for increasing flexible funding at the
local level and should be expanded to all regions of the State.
·
Separate funding streams for clinical and
“recovery” service bundles. In New
Hampshire, clinical services include basic treatment,
inpatient care, psychiatric services and so forth. Another cluster of services,
termed a “recovery bundle” are funded through the Medicaid Rehabilitation
Option. Services which are reimbursable
in this structure include education and vocational services, recreation and
community involvement, alternative treatments, peer services and some
individual recovery programs. These
services are considered “non-medical” in that they do not require supervision
by a physician, but they continue to require outcome accountability.
·
Another area receiving some attention is the
development of Individual Recovery Accounts which allow individuals to directly
purchase their needed services. In this
approach, the service is primarily accountable to the person purchasing the
service – in this case the individual, rather than a mental health
authority. Called Self-Directed Care
this approach has been used in some disability services and is being piloted in
a few mental health settings.
·
Related to Self-Directed Care is the limited use
of Personal Assistance Services/ Personal Care Services available through Medicaid
funding or in some areas home and community based waiver. Again, this is a model which has been
successfully used in physical and developmental disability services and may be
appropriate for consideration in psychiatric disability as well.
Recovery Dialogues between Mental Health and Substance Abuse Services
A Call for
Change is a first step for mental health services to begin the
transformation toward more recovery-oriented services. But, mental health
services must move ahead only in concert with other services, including
Substance Abuse Services.
It is critical that mental health and
substance abuse services begin dialogs to respectfully explore their shared and
diverse understandings about the concept and process of recovery. The goal of these dialogues is enhanced
understanding and the development of a consensus statement on recovery. Mental health and substance abuse services
need to conjointly develop and author any future iterations of A Call for Change and be collaborative
parties to all strategic planning initiatives.
Recovery Education
Recovery education needs to be ongoing and
instituted as part of every academic curriculum for professional training. A set of competencies for recovery-oriented
staff needs to be established to help guide training. Ongoing recovery education needs to be
required as part of the continuing education requirements for all licensure
groups. Training needs to include “the basics”, but also more in-depth
attention to implementing recovery-focused treatment and support, including
risk management and crisis prevention.
Recovery education for consumers needs to be
made available and promoted in every region on a quarterly or semi-annual
basis. There needs to be a process for
training consumers to provide recovery education to other consumers.
Ongoing training must be provided for supervisors
on how to mentor and help staff address day-to-day service planning and
treatment/support activities from a recovery stance. Consumers need to be
involved in curriculum development as well as training delivery. Staff should
not be expected to work from a recovery-stance without the support within their
organizations.
Review of Licensing, Regulations & Policy
A policy review needs to be implemented and
priority areas for change identified.
The review should include “ground up” evaluations about the kinds of
policy barriers that hinder recovery-based care and that may need to be
addressed as priorities. Establish a toolkit for recovery outcome evaluation
and shift toward outcome accountability as primary element of satisfaction and
funding.
Toward Transformation
Transformation: (noun): from the Latin
roots to change TRANS (across) and FORMA (shape). 1: a change in form, appearance, nature, or
character. 2: the process of doing so.
This transformation must ensure that
mental health services and supports actively facilitate recovery and build
resilience to face life’s challenges.
Transformation is ultimately about new
values, new attitudes, and new beliefs; it is about how these changes are
expressed in the behavior of people and institutions.
No one can ‘transform’ someone else…each must do their
own work. Hope and supports are
essential.
˜™
Only a Beginning
The New Freedom Commission described
transformation as a vision, a process, and an outcome. However,
as recognized by members of the Commission: “Transformation was not achieved by
the Commission; it depends on action that we and others will advance.” So to, A
Call for Change recognizes in its charge that transformation in Pennsylvania
will depend not only on the actions of OMHSAS, but of all stakeholders.
A Call for
Change simply offers an image of the destination – a vision – and provides
some ideas for moving forward the process of transforming the Pennsylvania
behavioral healthcare system toward more recovery-oriented policies and
practices. It presents some of the critical features of a recovery-oriented mental
healthcare system and offers guidance from many sources including invested
stakeholders in Pennsylvania, the
new federal mandates, and the experience of other states and regions
undertaking transformation.
It is expected that there will be a diverse
response to this document and the call for change in Pennsylvania. It will take time for the ideas to be
understood, debated, and ultimately embraced and made real in Pennsylvania’s
mental health service system for adults. Throughout this process there will be
unwavering commitment by OMHSAS that recovery is the overarching theme that
will guide all state-level planning and policies. In itself this will help to
build consensus among stakeholders and sustain momentum for change.
Next Steps
Based on input from various stakeholders in Pennsylvania
and the experience of some other systems that are tackling transformation to a
more recovery-oriented approach there are some overarching steps which need to occur
to move forward A Call for Change.
There must be a degree of consensus and
commitment to the vision and concepts outlined in this document before it can
be used as a guide for transformation.
This will entail ensuring that there is an adequate process for
review. A diverse response is to be
expected, but for A Call for Change
to guide change there must be commitment to it within the leadership at the
State level and across various key stakeholders groups. Compromise will be needed in this process.
Gaining commitment will entail ensuring an
adequate dissemination, review, dialogue/discussion and revision process. This
process will occur over time and not according to a planner’s timeline. It must
be remembered that one of the objectives of A
Call for Change is to encourage discussion and to function as a lightening
rod for change initiatives.
The assumption
cannot be made that there is widespread knowledge and acceptance of recovery
principles in the field. Ongoing
technical assistance and education are crucial. Information needs to be
collated into a format and disseminated in a way that is accessible,
digestible, and useable to the field.
3-5 Year Implementation Plan
A strategic implementation plan needs to be
developed for the next 3-5 years. However, it is not expected that
transformation will be complete in 3-5 years and it is expected that the first
plan will be followed by others. The
focus of the first implementation plan should be on what it will take to
establish a solid foundation and initial stages of change. There is no single approach to implementing
recovery-oriented care or transforming the mental healthcare system. The plan should focus on what is concrete and
do-able in this time period rather than on broad philosophical shifts. This
strategic plan should be a core element of meeting the expected federal
requirements for comprehensive state-level mental healthcare planning. It
should be approved, disseminated, and used for actual service development and
financing decisions
Progress reports on implementation should be made
available on at least an annual basis. “You get what you measure”. It is important to establish a mechanism whereby
the field can receive information about the status of the transformation and
implementation of various initiatives. OMHSAS can model the principle of
continual and reflective learning by ensuring that the field receives regular
updates in addition to requesting implementation and evaluation updates from
the field. In system change as well as
in facilitating change in the management and clinical arenas, it is always a
good policy to “catch’em doing it right” and to celebrate progress toward a
desired end, even if that progress is slower.
Your Call to Change
The Pennsylvania
transformation will depend on the action of not only OMHSAS, but of all
stakeholders. A successful transformation depends not only on state level
policy making, but on a commitment to change that is demonstrated by many actions,
large and small, that we as individuals and vested groups take.
There must be a degree of consensus and commitment
to the vision and concepts outlined in A
Call for Change before it can be used as a guide for transformation. This cannot happen before the document is
disseminated, reviewed, discussed and debated.
Listed below are a few ways you can begin the process in your agency or
area.
Promote Discussion and Dialogue
One of the objectives of A Call for Change is to encourage discussion and to function as a
lightening rod for change initiatives. The concepts and ideas presented herein
are not unanimously accepted or even understood. Share A
Call for Change with others. Ask
colleagues, staff, consumers, family members, and people from other agencies to
read it. Get extra copies and share them
generously.
Disseminate the document.
Create opportunities for regular and ongoing discussion
and dialogue. What can we do?
Here? Now?
Ensure that consumers and their families are
active participants in dialogue. Involve many points of view.
Keep focused on positive change – if these ideas
don’t seem right for your area, how would/could you promote change and
transformation toward recovery-oriented services in your area?
Build commitment to making fundamental changes
in your services.
Keep dialogues active throughout the process.
Identify Leaders
What individuals and entities can be leaders for change in
your area? You may want to create a
group of diverse stakeholders to be the nexus of local change initiatives. Use A Call for Change to help educate
potential leaders, as well as to serve as a focal point to bring current
leaders to the table.
Self-Check
The indicators of a recovery-oriented service system
provide a broad array of ways agencies and counties can begin transformation
initiatives at the local level. Use
these indicators to begin discussion and self-assessment initiatives. Consumers and family members should be
partners in all discussions and involved in all assessment activities. Your
areas of strength should be recognized and celebrated. Areas for development
should be prioritized for transformation initiatives.
Be Honest
It is one thing to tweak the edges of a service or make
some cursory changes in a program.
However, as the NFC reminds us, “Transformation is more than mere
reform; it is about changing the fundamental form and function of the service
system.” What worries you about this direction? What attitudes, assumptions, and fears keep
you from moving forward? How can you identify and openly address these
assumptions in a positive and productive way in your area? Will you personally commit to being a
positive force for change, helping Pennsylvania
to transform its public mental health service system to better support
individual recovery?
Visioning
By the end of 2006 all mental healthcare organizations in
the state, including counties should have vision and mission statements that
embrace recovery. Review your mission
and vision statements. What do they say
about the values or assumptions we hold?
About how we see ourselves and our purpose? Do they reflect persons or
programs? Outcomes or services? Is our mission squarely on helping individuals
with their individual journey of recovery? Use the discussions stimulated by A Call for Change to help inform this
process.
Identify Specific Problems and Challenges
What are your specific areas of challenge – including attitude,
training, personnel, regulatory, financing, contracting and so forth? It is understood that there are pressures
within the system at all levels to maintain the status quo. For transformation in Pennsylvania
to occur, we all need to become very clear and very specific about the kinds of
contracting, financing, training, and regulatory changes that are needed. Document
and share very specific examples of how a barrier impedes efforts to provide
more recovery-oriented services as well as your ideas about how those
challenges might be addressed.
Forge New Partnerships
Reach out – look beyond the mental health arena. How and with whom can you partner to support
people’s recovery?
Make a Commitment and Take Action
What goals and actions are needed on your part or in your
local area to move the spirit of this document forward? What actions are you willing to commit to
taking? What are some of the things you
can do now to shift toward a more
recovery-oriented approach? What might
be some of the things that you could tackle in the next year or so? What kinds of groundwork could you lay in the
short term for longer term changes.
Boiling it Down
Many of the
above actions boil down to four key questions.
Generating your own answers to these key questions will take you a long
way toward meaningful transformation of the public mental health system for
adults in Pennsylvania.
How can you use this document?
How will you use this document?
How can we
partner to support peoples recovery?
What is your
constituency willing to take responsibility for?
Conclusion
A Call for
Change: Toward a Recovery Oriented Mental Health Service System for Adults
is a significant step in the transformation toward more recovery-oriented
services in Pennsylvania. It
outlines the diverse roots of recovery in mental health, collates current
knowledge and ideas from within the state and other contemporary sources about
what recovery looks like at the individual, programmatic and systemic levels,
and offers some suggestions for strategic next steps toward
transformation. Its purpose is to
generate discussion. It is only through
discussion and dialogue that greater awareness and consensus can emerge.
Some of the key themes and lessons that have been
learned over the centuries of reform in Pennsylvania
include the following. They apply
equally today.
·
People with mental illnesses can and do get
better with humane and individualized services, opportunity, and dignity.
·
Innovation and leadership come when the focus is
squarely on providing better and more effective services to those who are
served by the system.
·
There are dedicated people in Pennsylvania
working independently and in groups, with good ideas born of their passion to
help people labeled with serious mental illnesses to live rich and rewarding
lives -- and with the tenacity to find ways to achieve this goal despite
barriers and obstacles.
·
All change and innovation requires risk-taking.
Leaders see the need for change and help the system take necessary risks.
·
What seemed risky a decade or two ago, is now
commonplace.
·
There is danger in complacency and apathy.
It is easy for systems under pressure to lose
sight of individuals and their needs and for workers to lose sight of their
purpose, passion, and willingness to take some risks. We default to management
of groups, populations, and covered lives rather than helping people to heal. A
narrow reliance on only known, tried, or standardized (albeit often
ineffective) ways of doing things results in an unyielding perpetuation of the
status quo. When service systems lose heart,
they also lose effectiveness, satisfaction, and opportunity.
Deegan,
P. (1990) Spirit Breaking: When The Helping Professions
Hurt. Humanistic Psychologist.
18:3, 301-313.
Mead, S., & McNeil C. (2003).
Understanding What Useful Help Looks Like: The Standards of Peer Support.
Available online: akmhcweb.org/Articles/PeerSupport.pdf.
Curtis, L.C. (2002) Current National Context of Consumer-Operated
Services: Briefing Paper for the Texas Mental Health
Consumers, Inc. Austin, TX: TMHC.