| A White Paper |
| INFUSING RECOVERY-BASED PRINCIPLES |
| INTO MENTAL HEALTH SERVICES |
| A White Paper by People who are New York State Consumers, Survivors, Patients and Ex-Patients September 2004 |
| Acknowledgements This document has been prepared with extensive participation from people who are consumers, survivors, patients and ex-patients across New York State. This would not have been possible without the willingness of these people to give of their time, knowledge and expertise. For this reason, first and foremost, our deepest thanks go to the:
PEOPLe Inc., a multi-county recpient-run program in New York State, was an invaluable part of this process as they patiently provided logistical planning and dialogue set up for the "Creating a Grassroots Demand for Quality" project. A special 'thank you" is extended to Steve Miccio, Executive Director of PEOPLe, Inc.. Steve's dedication and vision were always in the forefront as he facilitated dialogues, documented the dialogue content and compiled and edited The White Paper. Finally, we would like the thank The New York State Office of Mental Health for commissioning the project and Amy Colesante, Deputy Director, Bureau of Recipient Affairs, for project coordination and document editing. |
| Commissioned by New York State Office of Mental Health Sharon Carpinello RN, PhD, Commissioner John B. Allen Jr. Director, Bureau of Recipient Affairs |
| Consumer/Survivor Involvement in EBP's: Why a White Paper? |
IN THE WINTER of 2002, New York State Office of Mental Health (NYS
OMH) began to work in I partnership with people who use or have used
mental health services to infuse their perspective into their evidence
based practices initiative. At that time, a widespread Evidence-Based
Practices (EBP's) awareness building campaign got underway. This
campaign offered education on the national EBP's trend and focused on
NYS's priority set of EBP's, which included self-help and empowerment.
The goal of this campaign was not only to educate people on this issue,
but to seek out input and guidance that would answer the question, "How
can NYS OMH infuse recovery-based principles into Evidence-Based
Practices?" As the campaign moved forward, over 6,000 people
participated in consensus-building dialogues that would create and refine
this white paper. In addition to these dialogues, an EBP's and recovery
consumer/survivor steering committee was convened and the involvement
of people who are current and former users of mental health services was
infused into many of NYS OMH's internal workgroups.
The debate over the value of EBP's within the consumer/survivor
community was well known to the EBP's consumer/survivor steering
committee. It was decided that rather than focusing on this issue, we would
use NYS OMH's focus on EBP's as an opportunity to improve mental
health services as a whole. As a first step, this steering committee
discussed a document delivered by the Institute of Medicine (IOM) called
Crossing The Quality Chasm: A New Health System for the 21st
Century' and agreed that the ten rules that the IOM recommended for a
quality health care system (below) would be a good place to start. The
lOM's Crossing the Quality Chasm Report suggested the following rules:
These rules were discussed in two inclusive meetings of people who were
current or former users of mental health services and a new set of draft
rules was created that would be specific to mental health care in NYS.
These new rules then became the focus for eleven dialogues with
participation from over two hundred people. The content of these
dialogues was then summarized and brought out to approximately 6,000
additional people for their reactions and input. After giving input into the
creation of the rules, each participant selected his or her top three rules,
and the results were then tabulated in a ranking order to determine
importance. Those of us involved in the dialogues want it stated that all of
the rules are equally important; however, there is a level of hierarchical
importance that must be considered. Below is a list of our rules in
prioritized order.
OMH) began to work in I partnership with people who use or have used
mental health services to infuse their perspective into their evidence
based practices initiative. At that time, a widespread Evidence-Based
Practices (EBP's) awareness building campaign got underway. This
campaign offered education on the national EBP's trend and focused on
NYS's priority set of EBP's, which included self-help and empowerment.
The goal of this campaign was not only to educate people on this issue,
but to seek out input and guidance that would answer the question, "How
can NYS OMH infuse recovery-based principles into Evidence-Based
Practices?" As the campaign moved forward, over 6,000 people
participated in consensus-building dialogues that would create and refine
this white paper. In addition to these dialogues, an EBP's and recovery
consumer/survivor steering committee was convened and the involvement
of people who are current and former users of mental health services was
infused into many of NYS OMH's internal workgroups.
The debate over the value of EBP's within the consumer/survivor
community was well known to the EBP's consumer/survivor steering
committee. It was decided that rather than focusing on this issue, we would
use NYS OMH's focus on EBP's as an opportunity to improve mental
health services as a whole. As a first step, this steering committee
discussed a document delivered by the Institute of Medicine (IOM) called
Crossing The Quality Chasm: A New Health System for the 21st
Century' and agreed that the ten rules that the IOM recommended for a
quality health care system (below) would be a good place to start. The
lOM's Crossing the Quality Chasm Report suggested the following rules:
- 1. Care based on continuous healing relationships
- 2. Customization based on patient needs and values
- 3. The patient as a source of control
- 4. Shared knowledge & free flow of information
- 5. Evidence-based decision making
- 6. Safety as a system property
- 7. The need for transparency
- 8. Anticipation of needs
- 9. Continuous decrease in waste
- 10. Cooperation among clinicians
These rules were discussed in two inclusive meetings of people who were
current or former users of mental health services and a new set of draft
rules was created that would be specific to mental health care in NYS.
These new rules then became the focus for eleven dialogues with
participation from over two hundred people. The content of these
dialogues was then summarized and brought out to approximately 6,000
additional people for their reactions and input. After giving input into the
creation of the rules, each participant selected his or her top three rules,
and the results were then tabulated in a ranking order to determine
importance. Those of us involved in the dialogues want it stated that all of
the rules are equally important; however, there is a level of hierarchical
importance that must be considered. Below is a list of our rules in
prioritized order.
| 1 Institute of Medicine: Committee on Quality Health Care in America. Crossing the Quality Chasm: A new Health System for die 21st Century. Washington (DC): National Academies Press; 2001 |
| The Ten Rules for Quality Mental Health Services in New York State 1. There Must Be Informed Choice 2. It Must Be Recovery Focused 3. It Must Be Person Centered 4. Do No Harm 5. There Must Be Free Access To Records 6. It Must Be A System Based on Trust 7. It Must Have A Focus On Cultural Values 8. It Must Be Knowledge-Based 9. It Must Be Based On A Partnership Between Consumer & Provider 10. There Must Be Access To Services Regardless Of Ability To Pay |
Introduction
New York State Office of Mental Health's (NYS OMH) Evidence-Based
Practices (EBP's) models have created an interest and call to action
to infuse input, our input, into creating and measuring quality mental
health services throughout New York State. This is our opportunity to
create a vision of recovery that we have been working so hard to
achieve through fragmented actions all over the state. This document
takes all of these fragmented ideas from people who are consumers,
survivors, patients and ex-patients who live in every region of New
York and puts a dear picture together as to what quality,
recovery-based services would look like. We acknowledge that many
recovery processes are independent of and beyond the boundaries
and responsibilities of mental health services. In an attempt to achieve
our goal, we will be focusing only on how New York State can create
services that can support an individual on his or her recovery path.
It should be noted that although many of us support evidence-based
practices, this white paper is not a result of consumer/survivors
promoting this initiative. Instead, it is a movement toward infusing our
definition of quality into evidenced-based practices or any other
initiative within the mental health service delivery system. Our definition
of quality is derived from our collective experiences and who we are
as individuals. This white paper is the first step to bring attention and
gain support to infuse clear and measurable indicators of quality into
all aspects of the mental health system that will guide individuals
toward self-help, empowerment and self determination. The idea
being that no matter what kind of mental health services are delivered,
if the new rules were applied, the recovery outcomes for people who
use mental health services would increase. This is our attempt to bring
the mental health system to a more level playing field for professionals
and people who use mental health services. It is a person-centered
approach that we believe is long overdue in the mental health
community.
If we are to truly change the culture of mental health services in NYS,
the rules outlined in this white paper must be infused into OMH's
evidence-based practices initiative as well as any and all mental
health initiatives delivered through local governments and provider
agencies. These rules are, in essence, a call to arms for providers and
consumer/survivors to break down the barriers that have existed for so
long between us and build relationships that promote individuals as
whole persons and looks beyond illness towards a new world of hope
and wellness. If these rules are implemented, we believe they will bring
each one of us closer to the goals of independence, self-determination
and person hood, which are basic human elements utilized by all
"successful" individuals in society. It brings the stigmatized, powerless,
discriminated individual into parity with the community.
The relationship that exists between a person who uses mental health
services and a service provider is at the heart of the rules set forth in
this document As you read further into this document, you will begin to
recognize an underlying theme that emphasizes the power of listening.
It will be made apparent that those of us with a mental health diagnosis
gain invaluable hope and self-determination through knowing that
we are being listened to and that our thoughts and feelings are
being validated and respected. It is the essence of listening that
begins the process of recovery and then it is built upon through trust,
relationships and interdependence between the individual, the
professional and the community.
Since we believe that it is up to each individual to either solely, or in
partnership with trusted others, decide how to participate in recovery,
this white paper is not examining "what" recovery is. Rather, we chose
to focus on "how" to help one find and walk his or her personal
recovery path. It must be recognized that there is a process to
recovery and that it is extremely individualized for every person. There
are guiding principles, philosophies and beliefs based on scientific
and anecdotal evidence that promote recovery, but there is no cookie
cutter model that will do it all. It is our hope that this paper will help one
understand how to support someone on their path to recovery by laying
out some simple rules that have been recommended by those of us
who have first hand experience with the mental health system.
New York State Office of Mental Health's (NYS OMH) Evidence-Based
Practices (EBP's) models have created an interest and call to action
to infuse input, our input, into creating and measuring quality mental
health services throughout New York State. This is our opportunity to
create a vision of recovery that we have been working so hard to
achieve through fragmented actions all over the state. This document
takes all of these fragmented ideas from people who are consumers,
survivors, patients and ex-patients who live in every region of New
York and puts a dear picture together as to what quality,
recovery-based services would look like. We acknowledge that many
recovery processes are independent of and beyond the boundaries
and responsibilities of mental health services. In an attempt to achieve
our goal, we will be focusing only on how New York State can create
services that can support an individual on his or her recovery path.
It should be noted that although many of us support evidence-based
practices, this white paper is not a result of consumer/survivors
promoting this initiative. Instead, it is a movement toward infusing our
definition of quality into evidenced-based practices or any other
initiative within the mental health service delivery system. Our definition
of quality is derived from our collective experiences and who we are
as individuals. This white paper is the first step to bring attention and
gain support to infuse clear and measurable indicators of quality into
all aspects of the mental health system that will guide individuals
toward self-help, empowerment and self determination. The idea
being that no matter what kind of mental health services are delivered,
if the new rules were applied, the recovery outcomes for people who
use mental health services would increase. This is our attempt to bring
the mental health system to a more level playing field for professionals
and people who use mental health services. It is a person-centered
approach that we believe is long overdue in the mental health
community.
If we are to truly change the culture of mental health services in NYS,
the rules outlined in this white paper must be infused into OMH's
evidence-based practices initiative as well as any and all mental
health initiatives delivered through local governments and provider
agencies. These rules are, in essence, a call to arms for providers and
consumer/survivors to break down the barriers that have existed for so
long between us and build relationships that promote individuals as
whole persons and looks beyond illness towards a new world of hope
and wellness. If these rules are implemented, we believe they will bring
each one of us closer to the goals of independence, self-determination
and person hood, which are basic human elements utilized by all
"successful" individuals in society. It brings the stigmatized, powerless,
discriminated individual into parity with the community.
The relationship that exists between a person who uses mental health
services and a service provider is at the heart of the rules set forth in
this document As you read further into this document, you will begin to
recognize an underlying theme that emphasizes the power of listening.
It will be made apparent that those of us with a mental health diagnosis
gain invaluable hope and self-determination through knowing that
we are being listened to and that our thoughts and feelings are
being validated and respected. It is the essence of listening that
begins the process of recovery and then it is built upon through trust,
relationships and interdependence between the individual, the
professional and the community.
Since we believe that it is up to each individual to either solely, or in
partnership with trusted others, decide how to participate in recovery,
this white paper is not examining "what" recovery is. Rather, we chose
to focus on "how" to help one find and walk his or her personal
recovery path. It must be recognized that there is a process to
recovery and that it is extremely individualized for every person. There
are guiding principles, philosophies and beliefs based on scientific
and anecdotal evidence that promote recovery, but there is no cookie
cutter model that will do it all. It is our hope that this paper will help one
understand how to support someone on their path to recovery by laying
out some simple rules that have been recommended by those of us
who have first hand experience with the mental health system.
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