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Building Bridges:
Co-Occurring Mental Illness and Addiction: Consumers and Service Providers,
Policymakers, and Researchers in Dialogue
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Dialogue Themes and Findings
Whole-Person Focus
A principal theme—one that participants returned to several times, from several
perspectives—is that any and every individual seeking services must be considered
in the context of his or her entire background—as a whole person—rather than
as a set of individual problems to solve or resolve. Each person develops uniquely
and has individual physical, mental, and spiritual concerns; all of these factors
must be considered if the process of recovery is to be successful. Above all
is the need to treat people with dignity. A whole-person focus represents a
commonsense approach to understanding how best to design effective methods
for assessment, treatment, and recovery. A symptom, even if severe, cannot
be treated effectively in isolation from other aspects of a person’s being.
Several participants noted that during the assessment process in the service
delivery system, questions related to the whole person rarely are asked. A
person seeking services, in addition to exhibiting symptoms, may have a spouse
or partner, a parent, child, or sibling; may have experienced trauma; may have
legal, employment, or housing problems; may have concerns related to his or
her sexual life; and may have important, rich background information to share,
but this information is rarely discovered or taken into account. Other participants
noted that sometimes background questions are asked only in the narrow context
of filling out an assessment or intake form, or within narrow guidelines of
a research project or program.
The context within which assessments are conducted is a crucial issue. “Assessments
based on the medical model focus on what’s wrong with the person; in recovery,
it’s more important to focus on what’s right with the person,” said one participant.
However, working with strengths-based approaches that focus on the whole person
and ask questions sensitively and fully, may require increased interaction
between a provider and a consumer. This may be difficult, not only because
of time constraints, but also because focusing on these areas may expose the
need for a long-term commitment to the process by both the consumer and provider,
or may stretch beyond the current limits of any single provider’s expertise.
Working with the whole person also requires attention to the internal process
of recovery. Hope and community—one’s personal dreams and expectations, and
one’s network of relationships—play key roles in recovery. A person’s spirituality
also is crucial to a person’s recovery because it helps an individual develop
his or her perspective on the world. Yet, these topics are difficult for consumers
and providers to talk about or to really understand, let alone measure for
efficacy.
Adopting a whole-person focus will require a basic shift in how services are
developed, structured, and funded. Services must become more person-centered,
rather than symptom-centered. An individualized, holistic approach to recovery
may include services related to housing, employment, and other needs, as well
as to the specific symptoms of one or more co-occurring disorders. One participant,
emphasizing the need for an integrated, holistic approach, said that “it’s
more than co-occurring, it’s ‘all-occurring.’”
Genuine Collaboration with Providers
Closely related to the theme of focusing on the whole person is the importance
of involving people with co-occurring disorders in the design, implementation,
and evaluation of all processes that affect them. Obtaining consumer “input”
is not enough; those who are affected by the treatment system must be invited
to help create the system. This is not only an issue of fairness and inclusiveness;
it is directly related to making improvements in service delivery systems.
Consumers have a distinctive and crucial role in determining appropriate, effective
approaches precisely because recovery is an internal as well as an external
process—because it involves the whole person—and because of their firsthand
knowledge of what works. People with co-occurring disorders should be regarded
as peers throughout every aspect of the system, and partnerships based on peer
relationships should be established in building reimbursement systems, research
design, program implementation and evaluation, training, service provision,
and policy development.
Forming respectful, personal relationships between providers and consumers
becomes a priority with this orientation. An approach that integrates services
focused on the whole person and based on collaboration between providers and
consumers, requires more respectful and involved relationships—getting to know
each other and “not hiding behind our systems or labels.” Although progress
has been made, more needs to be done.
Training/Education
In response to the need for basic shifts in the service delivery system, training/education
was a key theme with several different components:
- Changes in professional and clinical health care education and requirements
for State licensure will be needed to support a collaborative model of care
that considers the whole person. Several participants spoke of key gaps in
their education and training—for example, few or no classes on mental health
or substance abuse, or on the differences in medication.
- Peer-based approaches to treatment need to be seen as basic components
of a whole-person, collaborative approach to services. Peer support is
critical
to help people in recovery become engaged in the community; the firsthand
experience of other consumers can provide tools and wisdom on a person’s
path to recovery. One participant asked, “How [else] do we learn the
personal interventions, techniques, and affirmations that are powerful
in a person’s
recovery?” and stated that the principle of “each one teach one” is crucial.
- Another participant noted that the State of Georgia has trained peers to
serve as certified peer support specialists who can help consumers set
recovery
goals, teach self-directed recovery skills and social skills, and provide
assistance with obtaining decent and affordable housing. Georgia has
been able to obtain reimbursement for such services provided by certified
peer
support specialists through the Medicaid Rehabilitiation Option.
- People with co-occurring disorders need to be trained how to discover what
services are available and how to assist in their own recovery. They
need to learn what is possible for them to achieve. One participant spoke
of the
need for vocational programs to get beyond the idea that the four “F’s”—food,
flowers, filth, and filing—are the only kind of jobs people with mental
disorders can handle. These types of jobs are fine, but they are not
the only jobs
people with mental or co-occurring disorders may be qualified to perform.
Stigma/Public Image
The media continue to reinforce negative stereotypes of people with co-occurring
disorders. To change these stereotypes, basic changes in relating to the media
are required. One participant stated, “Until we change the images of people
with psychiatric conditions and of drugs in Hollywood, and portray people with
these conditions as real people, we will not see major change. We need different
images and different stories.” It was noted that even supposedly sympathetic
portrayals rely on mistaken implications and images; for instance, a few participants
noted that the film “A Beautiful Mind” contained several inaccurate depictions
of John Nash’s disorder and treatment.
A different context, with different terms and definitions, is required to
understand illness. Several participants stated:
- “We perpetuate the perception barrier of dual disorders by focusing on crisis
interventions and more severe disorders,” said one participant. The term “wellness
diversity” is a better way to describe the continuum of wellness and illness
that is mental health.
- The term “family” should be defined according to the individual’s circumstances
to ensure that services are not limited, especially during crisis situations.
- Even the term “recovery” should be better defined, as it encompasses both
growth (emotional recovery) and development (skill-building).
Participants challenged each other to become more involved in changing images.
One participant suggested a series of public service announcements showing
“recovered faces in high places” and “the many faces of mental illness.”
Another stated that it is crucial for consumers and consumer advocates
to develop more
media contacts, in order to engage in direct dialogue with media representatives
and to become more visible in the media. Still another participant noted
that “we do too much ‘preaching to the choir’ in anti-stigma campaigns,”
and conduct
such events in remote places. “We need to get out to other groups and into
the center of the community with such efforts.”
Substance Abuse and Mental Health Systems Divisions
Participants noted a number of examples of how the mental health and substance
abuse treatment systems are narrowly focused and ineffective. “Our programs,
systems, and organizations operate in ‘silos,’” said one participant, noting
that “when real silos don’t get air, they explode.” It is difficult to find
or obtain resources because of the narrow focus of treatment systems. In addition
to the difficulties in obtaining services through different systems, consumers
find that each system places a different value on specific types of behavior,
so they constantly must conform their behavior to particular treatment approaches.
(For instance, in treatment for substance use disorders, you might be allowed
to get angry, but in treatment for mental disorders, you should never get angry.)
The meeting participants discussed the problems associated with the exisitng
mental health and substance use treatment and service delivery systems that
focus too heavily on crisis-oriented services and give relatively little priority
to the promotion of recovery. Although it is important to be able to access
services at a time of dire need resulting from acute exacerbation of illness,
participants expressed their preference to see these systems focus more on
teaching individuals how to maintain and promote their own health. The goal
is to promote recovery and prevent a crisis at which time individuals may not
only experience severe symptoms of mental illness, but may also experience
preventable losses of personal relationships, housing, and employment.
While noting these shortcomings and divisions within the present system of
delivering services, participants chose to focus on how to build relationships
between the substance abuse and mental health systems. It was suggested that
cultural diversity approaches be used to bridge differences. “We must realize
that the mental health and substance abuse systems have different cultures,”
stated one participant. The systems have different mandates, histories, language,
and rationales for funding. “What is needed is cultural competency in working
with each system, to help stop the prejudice and blame about the respective
fields and language.”
Research
A good deal of attention was given to the perceptions and possibilities surrounding
research into co-occurring disorders. Many participants voiced concern about
three major questions: First, what qualifies as research? Second, how should
research be designed and conducted? Third, how do learning and innovation get
broadly applied?
On the first question, several participants were concerned about the increased
emphasis on “evidence-based” research. Very little research actually qualifies
as “evidence-based,” since the term refers to “a large body of research in
a particular field with a particular population.” However, many requests for
research proposals require or prefer programs that are “evidence-based.” As
one participant stated, “Having ‘evidence-based’ as a prerequisite for funding
knocks out many proposals in certain populations,” including older adults,
gender and sexual minority persons, and persons with eating disorders. Very
little research has been done with these populations, and an “evidence-based”
preference continues to lock them out of further possible research.
On the second question, participants strongly objected to research programs
that do not involve people with co-occurring mental and substance use disorders
in a meaningful way. Evidence-based research shifts power to institutions and
academic researchers, and cuts into innovation. “Laboratory,” “top-down,” or
“medical-model” research keeps consumers in the role of test subjects. Also,
research and evaluation too often focus on the program, rather than on the
recovery process—on how people integrate their own recovery with programs.
It looks at the system dynamics, not the personal dynamics. The conventional
view of research, with a bias toward institutions and programs, regarding people
as test subjects, and using a narrow definition of “evidence-based,” reinforces
an adversarial relationship between the researcher-observer and those being
observed or tested.
On the third question, participants agreed that getting research results out
to the field happens too slowly. There is a “literature lag” between formal
research and what is happening in the field. At times, the research and academic
literature do not even recognize current terms and approaches being used in
the field. For instance, you cannot find references linking “dual disorders”
with “marriage counseling” or “employee assistance programs.” And while research
may be very good, “we don’t teach the people in our programs what we’re finding
out,” one participant said. “We don’t let people in programs understand what
is being discovered.”
What is needed, participants agreed, is a more collaborative and field-based
approach to research. “In our field, a lot of change happens in the field,
through trial and error,” said one participant. “The research doesn’t have
to be evidence-based,” said another. “There is a need for research on innovative
techniques, because that tells us about what’s really happening in the field.”
One of the most critical elements is to have consumer advice and involvement
at every step, from program design through research implementation and evaluation.
“Consumers need to be trained to do research, and to be on Federal [and other]
advisory boards,” said one participant. This will lead to improvements in data
quality and increased innovation, as well as to a better image of research.
One participant stated, “I go around and ask researchers questions they’re
not asking, because they only ask questions defined in the study—yet they know
a lot more information that is very useful.”
Also, as one participant reminded the group, research findings can help change
policymakers’ minds, leading to legislative changes and funding for improved
services. Cost-benefit analyses help legislators understand not only that treatment
works, but that investment in research results in more effective and less expensive
care.
SAMHSA can play a leadership role in this area. Participants recommended a
closer relationship between SAMHSA and the National Institutes of Health (NIH)
in order to move science to services more quickly.
Research can be a partner, if researchers are concerned about practice in
the field and see consumers as collaborators in innovation, and if research
funding is not limited to overly narrow definitions of “evidence-based.” Research
is needed to identify practices that will actually influence training competence,
service guidelines, and funding directions; that focus on the whole person;
that rely on consumer input at every stage of research; and that include cost/benefit
considerations about research and co-occurring issues.
Nondiscrimination and Underserved Populations
Another theme was the importance of serving all persons affected by co-occurring
disorders. This involves ensuring that access is not denied because of discrimination,
and focusing attention on those groups that have been historically underserved.
The State of Texas was held up as a model for establishing regulatory language
and an administrative system to ensure nondiscrimination in access to care.
In Texas, although there are parallel systems, people seeking treatment are
assumed to have co-occurring disorders. The State has established rules and
used language of nondiscrimination in the regulations to support this assumption,
and has also established minimum standards of competence. To help mitigate
the silo effect of separate funding streams, the State has placed engagement
strategy specialists throughout the service system, to assist people who have
not been helped in the existing system. The State has adopted the following
regulatory language:
State of Texas
Standards for Services to Individuals with Co-Occurring Psychiatric and Substance
Use Disorders (COPSD), Chapter 411, Subchapter N, Section 411.657:
- In determining an individual’s initial and ongoing eligibility for
any service, an entity may not exclude an individual based on the following
factors:
- the individual’s past or present mental illness or substance use
diagnosis or services;
- medications prescribed to the individual in the past or present;
- the presumption of the individual’s inability to benefit from treatment;
- the
specific substance used by the individual;
- the individual’s continued substance use; or
- the individual’s level of success in prior treatment episodes.
- Entities must ensure that an individual’s refusal of a particular service
does not preclude the individual from accessing other needed mental health
or substance abuse services.
- Entities must ensure that individuals have access to staff who meet
specialty competencies described in Section 411.658 of this title (relating
to Specialty
Competencies of Staff Providing Services to Individuals with COPSD).
- Entities must establish and implement procedures to ensure the continuity
of screening, assessment, and treatment services provided to individuals.
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While most participants were impressed with the explicit regulatory language
the State has adopted, several participants urged caution when using statutory
and regulatory strategies. There is some risk, especially at State levels,
of legislation that places more restrictions and allows fewer community-based
approaches, thus causing more problems than might be solved.
Participants also expressed concern that several populations have been significantly
underserved, including older adults, youth, persons with eating disorders,
gender and sexual minority persons, Native Americans, and ex-inmates.
Older adults are at risk for late-life mental illness and addiction, particularly
depression and alcoholism, and dependence on or overuse of medication, because
physiology changes with age. Yet service providers do not respond adequately
to these issues, especially because many people suffer at home and may also
suffer from dementia and physical disability. Youth are usually not viewed
as being at risk for co-occurring mental illness and addiction.
Persons with eating disorders also suffer from, or are at risk of, co-occurring
disorders, but are usually left out of consideration, while sexual
minority persons have particular issues that may affect mental and substance use disorders.
Native Americans historically have been underserved for co-occurring disorders
as well as for many other medical, social, and economic issues, while ex-inmates are perceived by providers as being difficult to work with and have a high
occurrence of both substance use and mental disorders.
Not only are these populations traditionally underserved for co-occurring
disorders, but more information also is needed to understand the risk or extent
of co-occurring disorders among them. Participants advocated that more attention
be paid to these populations in terms of both services and research, at the
same time recognizing the tension, or balance, between focusing on underserved
populations and integrating everyone with co-occurring disorders into the community-at-large.
As one participant said, “We sometimes ‘ghetto-ize’ people by putting them
into special population groups.” The group understood that both sides of this
balance need to be emphasized: the need to focus attention on those who have
been neglected or denied access, and the need to make sure that all community
members are genuinely integrated into the life of the community.
Funding
Woven throughout the discussion on the themes above was recognition that a
new system of reimbursement for services to persons with co-occurring disorders
is a critical need. “We need to dismantle the silo effect of separate funding
systems,” said one participant. Participants discussed the importance of:
- Establishing new billing codes for co-occurring.
- Reimbursing multidisciplinary team approaches to service delivery.
- Using simpler documentation for billing.
- Providing certification and funding for peer specialists.
- Including incentives for building coalitions, for serving underserved populations,
and for funding innovations in block grants.
- Ensuring adequate technology for data sharing across systems.
Participants also noted that the present methods for financing services for
mental health and substance use disorders promote dependency and are provider-focused.
Once again, the key strategy is to ensure much greater consumer involvement
in the design of appropriate and effective policies and mechanisms. This
includes exploring consumer-directed or self-determination models of financing.
DHHS Publication No. (SMA) 04-3892
Printed 2004
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