  Consumer
Advocacy Partnership
Develops Policy on Wellness
and
Recovery
Problem
Mental health consumers in New
Jersey, or those people who have been diagnosed with mental
illnesses and who use public mental health services, often fail to
recover because the systems of care and treatment available to them
are designed without wellness and recovery in mind.
For many people with mental illness diagnoses, their original
symptoms often present as behavioral problems, rather than as
biochemical illnesses. For example, symptoms of depression include
lack of motivation, hopelessness, fatigue, and other feelings that
most often result in people performing far less well than they and
their loved ones expect. Similarly, symptoms of schizophrenia
include hearing voices that interfere with concentration and focus.
And people with anxiety disorders often feel
such debilitating fear that they are unable to
go about their ordinary tasks, assignments, and obligations.
In a majority of cases, consumers experience a series of losses—in
school, at work, in relationships, with finances—that go on for many
years before they discover the possibility of treatment, let alone
wellness, recovery, and rehabilitation. During that time of loss
and degradation, most consumers remember being told by family,
friends, and even physicians that they
will never recover
their mental health and
will never be able to achieve
the life goals they’d set for themselves before symptoms began.
By the time consumers have reached the New Jersey public mental
health system, their self-esteem is usually shattered and their
own confidence in their ability to recover is non-existent. For the
vast majority of consumers, they meet a system of care that’s
designed around “illness,” rather than “wellness and recovery.” In
some cases, consumers are further dehumanized and disenfranchised by
staff who were never trained in the concepts of wellness and
recovery, who talk down to them, who ignore them, and who invalidate
their slight hopes of returning to their lives and their dreams.
As a result, a large number of consumers in New Jersey’s public
mental health systems remain in the system for most of their lives,
alternating between hospitals, jails, and community programs that
are not designed with services that would ultimately get them back
to work or school, back to independent housing, and back to
relationships that enrich and support them as they attempt to live
full lives while managing a chronic, mental illness.
Background
People diagnosed with serious mental illnesses are capable of
holding gainful and meaningful employment, getting married, rearing
children, practicing their religion, joining clubs, enjoying
hobbies, voting, participating fully in the community—in short,
living meaningful and productive lives.
This concept, called
wellness and recovery,
has long been advocated by mental health consumers, as well as
progressive researchers, providers, and public policy experts. Now
that research has demonstrated its validity—and with the consumer
movement pushing the envelope—the idea that people with
mental illnesses can recover and obtain a sense of wellness has been
granted wider acceptance; some policy makers and providers say they
are redesigning public systems of care and traditional mental health
services, respectively, to implement the new paradigm, or vision.
There may be some lack of consensus in regard to a definition of
wellness and recovery. Living a full life in the context of dealing
with one’s mental illness is one commonly accepted definition. By
definition, wellness and recovery does not mean being symptom-free,
but does mean
living with hope.
Another definition holds that people can fully recover from the
condition that is commonly called mental illness itself, not just
regain functioning while continuing to be mentally ill. Wellness
and recovery can also stem from people’s own natural healing
processes and the fact that people’s bodies adjust and change over
time. The kinds of services and supports people get may be less
important than people’s own natural ability to recuperate and heal.
There may be a number of factors—including biological,
environmental, psychological, and spiritual—that contribute to
wellness and recovery, depending on the uniqueness of each person.
Clearly, in order to promote wellness and recovery,
the mental health system will have to abandon the traditional
service model in favor of a new paradigm. Such a shift, driven by
consumers, has been taking place around the country, in such states
as New Jersey, California, Ohio, Pennsylvania, and others.
The necessity of such a shift has been confirmed by a
number of studies worldwide. One such research project was a
landmark study of deinstitutionalized patients in the United States
that began in the mid-1950s, when 269 people were released from the
back wards of Vermont State Hospital and provided with a model
rehabilitation program in the community. Three decades later, 262
of the 269 were located and assessed, and it was found that
approximately two-thirds of them had achieved significant levels of
recovery. This was in contrast to a matched control group of
patients released from a Maine state hospital, who had received
traditional treatment and hadn’t done as well in the community.
Courtnay M. Harding, Ph. D., an internationally known researcher who
worked on the study, said that as a result, “we have very strong
data that community reintegration, rehabilitation and
self-sufficiency models—which was what the Vermonters had—are far
superior to the Maine model of medication, entitlements,
maintenance, and stabilization.”
In order to gather input from New Jersey’s consumers
specifically, the Consumer Advocacy Partnership hosted a
Wellness and Recovery Consumer Forum
in November, 2003 about wellness and recovery.
The Partnership heard testimony from consumers on the
following questions:
1. What
Is Your Vision of a Wellness and Recovery-Oriented System?
2. What
Steps Do We Need to Realize It?
3. What
Attitudes Do We Need to Change?
4. What
Are Your Hopes for the Future?
Position
Consumers in New Jersey want mental health services that help them
recover, rebuild, and reclaim the lives that started disintegrating
once they began exhibiting symptoms of mental illness.
Specifically, consumers want programs such as supportive housing,
supported employment, and peer support, to be adequately funded and
implemented in the community to maximize the chances that they will
ultimately be able to live with a minimum of public assistance, if
any at all.
In order for New Jersey’s public mental health system to evolve in
the direction of Wellness and Recovery, consumers believe that our
Division of Mental Health Services (DMHS) must collaborate with
other departments, such as Community Affairs, Labor, Health and
Senior Services, and Corrections to focus on the fundamental human
needs of housing, equal and meaningful employment with opportunity
for advancement, education, and culturally competent care. DMHS
must respond to consumers’ calls for programs that educate consumers
about their illnesses, their medications and treatments, that
educate professionals and family members about the real possibility
of wellness and recovery, and that educate the public at large that
mental illness is a real, treatable, and manageable condition.
Consumers in New Jersey want a significant increase in the numbers
of consumer providers who serve in the public system as a way to
ensure that care is compassionate and based on firsthand knowledge
of best practices that lead people back to their lives. These
consumer providers must work in hospitals, self-help centers,
community service teams, day programs, and partial care programs
where they can promote in their clients the sense of hope and
self-determination necessary for wellness and recovery.
Consumers in New Jersey accept responsibility for the maintenance of
their mental illnesses and want our public system to provide
services that are oriented not toward illness and dependence, but on
health, wellness, independence, and dignity.
Consumers from 21 Counties Walk for Justice in Camden
MHANJ’s Government Affairs Department had an opportunity to help
organize a state-level response to a tragedy in Camden County in
which a person with a mental illness was murdered while in the
county jail. MHA of Southwestern New Jersey Executive Director,
Mary Lynne Reynolds, of course, responded immediately to the event
through letters to the editor and county level advocacy.
But when a consumer in the county
who’d been friends with the victim
approached Director of Consumer Advocacy, Marie Verna, to see if
there could be an organized response from all counties in the state,
both offices were able to work hand-in-hand to hold a Vigil for Joel
Seidel, the victim, and a Community Walk for Justice to the Camden
County jail.
The event was held on February 27, the one-month anniversary of the
death, and began with a memorial to Seidel at St. Paul’s Episcopal
Church. From the church, the more than 300 advocates in attendance,
who hailed from all counties in New Jersey, walked to the jail,
where they created a makeshift memorial to Seidel. The advocates,
many of whom were consumers who had been incarcerated, called for
passage of state and federal bills that would divert people with
mental illnesses from jails, increased funding for the community
mental health system, and higher level investigations into the
tragedy, which easily could have occurred anywhere in New Jersey.
Since the event, MHANJ’s affiliates around the state have come
together to raise awareness about this critical issue in their own
counties and in Trenton.
Consumers Gearing Up for Budget Battle
Most policy and government affairs experts will tell you that last
year’s budget victories were a direct result of consumers getting
organized and voicing their strong opinions on Governor James E.
McGreevey’s proposed budget. This year, we’re planning several
strategies and events that we believe will, once again, mean that
the voice of mental health consumers is heard in Trenton.
In early May, (date to be determined), we’ll once again host a
Consumer Budget Forum at the Statehouse in Trenton, where consumers
will speak directly to elected and appointed officials about the
most important pieces of the Governor’s budget proposal, which he
announced in late February:
-
Redirection
II
-
Office
of Children’s Services
-
Cost
of Living Adjustments for Direct Care Salary Workers, including
consumer-
providers
-
Prescription
Co-Payment of up to $10.00/month/person for those on Medicaid
(Fee for
Service) and General Assistance.
Please contact the office in Trenton if you’d like to help fight
the budget fight!
|
