Key Decision Points Guide
Key Decision Points Guide
IntroductIon .................................................................................1
Step 1.
Identify and coordinate with other parallel and related efforts ...................................6
Step 2.
Become familiar with core documents and available resources ..................................7
Step 3.
Identify and enlist an oversight/ leadership group .................................................8
Step 4.
Orient the leadership group and other key partners to early psychosis
intervention and how it relates to existing missions,
initiatives, and priorities ...........................................................................11
Step 5.
Identify one individual or a small team who will have the primary
responsibility for facilitating successful implementation .......................................13
Step 6.
Articulate long-term and short-term goals, roles and timelines ................................ 14
Step 7.
Identify initial resource availability and, resource development needs,
and resource development strategies.............................................................. 15
Step 8.
Identify the initial geographic catchment area and agency provider
for the early psychosis program(s) ................................................................ 17
Step 9.
Define the program’s initial eligibility criteria or guidelines .................................... 18
Step 10.
Develop initial incidence projections...............................................................22
Step 11.
Identify expected staffing levels and positions. ..................................................23
Step 12.
Determine how long the program will be .........................................................27
Step 13.
Develop caseload projections ......................................................................28
Step 14.
Develop a projected team budget .................................................................29
Step 15.
Establish a strong internal management/ support
infrastructure at the agency level .................................................................30
Step 16.
Identify clinical strategies and standards ........................................................35
Step 17.
Identify resources and methods to establish staff core competencies . ........................39
Step 18.
Develop and implement a community education strategy ......................................40
Step 19.
Establish an outcome measurement process . ...................................................41
Step 20.
Establish evaluation and fidelity measurement processes ......................................42
REfEREncEs .................................................................................................44
InformatIon GuIde
INTRODUCTION
An increasing number of sites throughout the united States are beginning the
process of implementing early psychosis intervention. this guide walks through the
steps involved in establishing a new early psychosis program, including an explicit
articulation of the decisions involved. the guide describes core elements of coordi
nated Specialty care, which is considered the current standard of practice for early
psychosis intervention. replication of an existing program model can help simplify
the process considerably, but many of the decisions listed in this document are
not explicitly addressed by the research. Within coordinated Specialty care there
remains variation, because early psychosis intervention is multi-dimensional and
evolving. It is important to understand the strengths and weaknesses of the model
being implemented and to give thought to how the program can be most beneficial,
sustainable and effective.
In the United States, Zucker Hillside Hospital was a forerunner in early psychosis
intervention, providing early psychosis services within a hospital setting and later playing
an important role in the first national study of community-based implementation (RAISE).13
Numerous universities within the U.S. began researching the onset of schizophrenia in
the 1990’s and developed interventions in support of that research, leading to the North
American Prodromal Longitudinal Study (NAPLS), a network of U.S. and Canadian
universities which have shared their data and findings in order to move the knowledge
base forward faster (http://campuspress.yale.edu/napls/). Some, such as the University
of North Carolina’s OASIS Program, Yale, and the numerous University of California
programs (UC Davis- EDAPT program, UC San Francisco/Felton Institute’s PREP
Program, UCLA, and UC San Diego), continue to play important roles in dissemination
and ongoing research.
In 2001, two early adopters, the Oregon Early Assessment and Support Alliance (EASA
and the Portland Identification and Early Referral Service (PIER) in Portland, Maine, began
to provide community-level early psychosis intervention.14,15 Oregon’s EASA Initiative
was created by Mid-Valley Behavioral Care Network, a five-county intergovernmental
mental health managed care organization responsible for publicly funded mental health
services under the Oregon Health Plan. EASA was the first systematic integration of
population-wide early psychosis intervention into the public mental health system in the
U.S. Statewide implementation of EASA using a state-level set of practice guidelines
and a fidelity/evaluation process began in 2007. PIER in Portland, Maine, was research-
funded and took a population-level approach to trying to identify early symptoms prior to
the development of psychosis. In 2007, The Robert Wood Johnson Foundation funded a
six-site replication of PIER’s Family-Assisted Community Treatment (FACT) model called
the Early Detection and Intervention for the Prevention of Psychosis Program (EDIPPP).16
Oregon’s original five counties were part of this study. Due to the EDIPPP study criteria,
PIER began providing first episode services and EASA began providing services to the
psychosis risk syndrome population.
In 2010, the National Institute of Mental Health sponsored a national study of early
psychosis intervention in the public mental health system called Recovery After an
Initial Schizophrenia Episode, or RAISE.13 RAISE had two arms- RAISE Early Treatment
Program (www.navigateconsultants.org), which randomized sites into a manualized
process of treatment versus “treatment as usual,” and RAISE Connections/OnTrack New
York (http://www.nimh.nih.gov/health/topics/schizophrenia/raise/coordinated-specialty
care-for-first-episode-psychosis-resources.shtml), which implemented early psychosis
teams in New York and Maryland and provided documentation in support of program
implementation nationally. Both programs developed high-quality detailed written guidance
for new sites that are available on the internet, and offer in-person technical assistance.
RAISE also helped to launch a regional effort in Ohio through Northeast Ohio Medical
University called BeST (Best Practices in Schizophrenia Treatment).
In april 2014, Congress allocated new funding and directed all states and territories to
begin the process of developing early intervention efforts for individuals experiencing a first
episode of serious mental illness, including psychosis.1 As a result of this and additional
federal grant moneys, a large amount of new activity began to focus on early psychosis
intervention in the U.S. In September 2014, the Substance Abuse and Mental Health
Services Administration, the National Institute of Mental Health and The Robert Wood
Johnson Foundation co-sponsored the first ever organizational meeting for the creation of
a formalized national early psychosis network in the U.S., called the “Prodromal and Early
Psychosis Prevention Network (PEPPNET)”.17 PEPPNET has developed a steering council,
several subcommittees, and a national mailing list in addition to coordinating national efforts.
1
Set-aside funding within the Substance Abuse and Mental Health Services Administration’s Community Mental
Health Services Block Grant is specifically for the purpose of addressing first episodes of serious mental illness,
and not to provide services for persons at high risk for developing such disorders.
• Early psychosis programs aspire to engage with young people and families as partners
in decision making at all levels.
• Family support and education help to maintain a sense of hope, equip families to
provide the type of support young people with psychosis need, and reduce trauma,
conflict and illness-related stress.
• Illness and resiliency education for the individual builds on the young person’s sense
of and connection to personal strengths and ability, provides basic information about
psychosis and how it can be managed, and partners with the young person to develop
personal understanding, skills, attitudes and relationships which support developmental
progress over time.
• Counseling approaches are used that: facilitate the young person’s: informed decision
making; finding meaning in experience; successful achievement of personal goals; and
mastery of symptoms.
• Medical services include: low-dose prescribing; careful attention to side effects; and
wellness strategies in support of symptom reduction and positive health outcomes with
a strong emphasis on shared decision making.
• Supported employment and education encourage and support the young person to
continue on, or return to a school/career trajectory.
• Assessment and treatment are designed to be sensitive to trauma and to reduce new
trauma associated with psychosis and resultant legal involvement and acute care.
• Services are closely coordinated with a shared plan and approach by the team,
including weekly review of every individual being served in order to align all services
to a common approach and set of goals based on the young person’s and family’s
perspectives.
• Clinical supervision and attention to human resources issues help build clinical skills
and provide an environment which is supportive of team members’ roles and needs.
Most early psychosis programs are primarily if not entirely outpatient in focus. However,
early psychosis understanding and best practices also have significant implications for
acute care providers, medical providers, funders and for other supporting systems such
as educational and vocational programs. A comprehensive approach which addresses
practices systemically at multiple levels increases the consistency of experience and
reduces the chances of negative experiences leading to trauma and disengagement.
In addition to other programs or entities with similar interests in early psychosis, related
efforts may provide early synergy and may even make sense to combine in some way.
For example, programs may find significant benefit in combining efforts with community
education efforts such as Mental Health First Aid, treatment programs such as Assertive
Community Treatment, Transition Age Youth programs, and efforts to divert people from
hospitalizations.19,20,21 Likewise, funders who have access to data about emergency room
visits and emergency rooms may want to integrate broader system data into quality
benchmarking, as well as to develop cross-system procedures focused on referral,
linkages and appropriate care.
Overview Information
The International Early Psychosis Association: A national organization which brings together
researchers, practitioners, and individuals with lived experience to share knowledge and collaborate
across nations. The IEPA has an international
conference every two years: www.iepa.or.au
The National Institute of Mental Health: Created a central page with links to and a useful summary
article about “Coordinated Specialty Care” as a standard for early psychosis and materials developed
through RAISE, including an Implementation Manual:
http://www.nimh.nih.gov/health/topics/schizophrenia/raise/coordinated-specialty-care-for-first-episode-
psychosis-resources.shtml
The Substance Abuse and Mental Health Services Administration (SAMHSA): Supported the
development of a web-based environmental scan of early psychosis programs from throughout the world
including multiple programs in the United States which offer technical assistance: http://www.nasmhpd.
org/sites/default/files/Environmental%20Scan%20%202.10.2015_1%285%29.pdf
Other National Organizations and Agencies: The National Council on and NAMI have early psychosis
resource information on their national websites, and NIMH is also developing a centralized location for
early psychosis information. Numerous webinars have been archived and are available for viewing.
The National Association of State Mental Health Program Directors (NASMHPD) recently launched a
comprehensive Early Intervention in Psychosis virtual resource center that can be accessed at:
http://www.nasmhpd.org/content/early-intervention-psychosis-eip
PEPPNET: The following document provides an overview of the new U.S. early psychosis
network, PEPPNET:
https://ncc.expoplanner.com/files/13/SessionFilesHandouts/D24_Adelsheim_1.pdf
England’s IRIS initiative and Australia’s Early Psychosis Prevention and Intervention Center:
Developed usable and relevant resource materials: http://www.iris-initiative.org.uk/
The structure and function of leadership groups is likely to change based on the stage of
implementation and the level of jurisdiction. It is essential at all stages to include strong
voice and ownership by people with lived experience, family members, and key decision
makers involved with implementation. A separate advisory group consisting of young
adults with lived experience of psychosis can play a particularly powerful role. If one or a
small number of young people is asked to serve on a larger group, their voices may be
overwhelmed by the agendas and interests of other stakeholders.
• Anticipating the future development of the program beyond its initial stages and to
ensure that key decisions reflect the long-term needs;
• Carrying the program’s philosophy, goals and knowledge into partner organizations,
such as medical organizations, schools, hospitals, etc.
• How does the group relate back to existing decision making processes? For example, if
there is a board or other decision making body, can the leadership group be established
as a committee or initiative of the decision-making body rather than as an independent
group? Tying the leadership group into a more formally supported and empowered
decision-making body: (a) provides a higher level of sanction for the group’s activities;
(b) increases the level of coherence between the group’s strategies and the overall
system structure; and (c) provides ongoing opportunities for those who have ultimate
responsibility at a system level to officially embrace the vision, goals and decisions of
the early psychosis leadership group.
• Likewise, there may be advantages to having both a state-level group which is able to
address policy, regulatory, financing and state-level activities, and a local group which
can build on partnerships to facilitate local linkages and outreach.
Advocacy organizations
Medical community
Law enforcement
Housing programs
Insurance companies
It is important early on for leaders to understand the transformative nature of early psychosis
intervention. It is not simply an add-on to existing services, but requires a profound shift in
how organizations think about and approach providing supports for young adults.
• Issues which early psychosis programs are trying to remedy and a vision for how the
system will be different once early psychosis intervention is fully implemented
• The early creation of a mission statement for the leadership group can help to rally
partners and create a shared sense of direction.
• Local data and first person accounts focused on service utilization and what currently
happens when someone experiences psychosis; and
• Existing mandates and priorities which tie well to this effort (i.e., Olmstead Supreme
Court decision/ other court decisions associated with the right to non-restrictive care,
other state-level priorities associated with recovery, employment, etc.).
?
change?
Within the existing environment, this may require staff licensure. In some
maximizing
cases, hourly billing can be increased to incorporate additional related functions
Existing Billing such as outreach and team coordination.
Federal Block Grant dollars have already been allocated. Additional potential
Re-aligning Existing resources include hospital diversion for individuals who have a legal right to
Funding. services in the community, and partnerships with workforce and vocational
rehabilitation organizations.
Since young adults are among the most likely to be uninsured and also tend to
be very low income, the extension of Medicaid can have a major impact on their
Extending Coverage access to coverage. (Oregon’s EASA outcome review data showed a decline
from over 30% uninsured to under 10% in June 2014 almost entirely as a result
of Medicaid expansion).
Utilizing Short-term Private foundation grants and other short-term strategies may be effective in
Strategies building the support for long-term financing.
?
• What resources are already allocated to this purpose
(Federal Block Grant, other sources)? Are there
restrictions on the use of the funds?
• Some attributes which are important for the choice of “early adopters” which will lay the
groundwork for statewide efforts include:
?
• How will the eligibility criteria/guidelines be determined? What is the process for future
modifications?
• How will the program facilitate rapid response and eligibility decision making? It is
important to assume that individuals referred may end up rapidly in a life threatening
situation and in need of proactive support, even when the referent does not describe
behavior of imminent concern. Therefore initial eligibility decision making and
engagement must allow for rapid early triage and response.
• No matter what eligibility criteria are established, the program will always receive
numerous referrals which are not appropriate for the program. It is not uncommon
for half to two-thirds of referrals to be outside of the program guidelines, with some
referent groups much more likely to refer individuals not experiencing early signs of
psychosis. Diagnostic clarification and a brief educational process for the referent is an
important community service, and often it is considered good news that the person is
not experiencing psychosis. This phenomenon leads to three important questions which
programs must answer:
• For individuals not accepted into the program, what is the process for facilitating
entry into appropriate care, staying engaged until an appropriate connection has
been made, and tracking the relative success in doing so?
• What support is available for the team in facilitating access to appropriate care for
those who are screened out of the program?
• How will the program be described to the community in order to create accurate
expectations? Program descriptions may explain the program as a community
consultation service, as well as a treatment program, and explain the program’s role
in problem solving and facilitating appropriate care.
Generally age criteria only apply at the point of entry; if a person reaches the upper end of
the age range during the program they are generally not discharged due to “aging out” of
the program.
It is recommended that programs serve ages 15 to 25 at the minimum. This age range
aligns programs with transition-age youth efforts and the typical age of onset, particularly
for males. However, since the median onset for females is older, a younger cut-off leads
to fewer females being identified. Programs have set their upper age cut-off as high as 40,
but developmentally and programmatically it may be more difficult to maintain a coherent
approach with a wider age span. Onset younger than 12 is very unusual and more
diagnostically complex.
Since early psychosis intervention involves early detection of symptoms, those symptoms
will not normally be diagnosed prior to entry into the program. The primary focus of
many early psychosis programs is schizophrenia and related conditions, since this is the
primary research base, and schizophrenia and related conditions have a history of poor
outcomes and large public expense.8,9,24 Some programs also include bipolar spectrum
with psychosis. Diagnostic ambiguity and uncertainty is normal in the early stages. Many
individuals will enter with a diagnosis of Psychosis NOS.
Some programs have chosen to accept everyone with psychosis. The benefit of this
approach is that it simplifies screening and makes the program much more broadly
accessible. The downside of this approach is that it opens the program up to a much
larger group of individuals, such as those with depression, substance use disorders, and
Post-Traumatic Stress Disorder, and it requires careful attention to the range of appropriate
responses based on underlying diagnosis.
Most programs screen individuals out if their psychosis is due to a head injury or medical
condition, since the needed approach is likely to be different. Appropriate medical
examination and laboratory testing are important to rule out a range of potential medical
conditions. Also, most programs screen out individuals whose psychosis is clearly caused by
substances, although it can be expected that substance use will be common among those
accepted and will create complexity in the differential diagnosis and treatment process.
Programs will need to determine whether they will accept individuals with intellectual
disabilities. Many early psychosis programs do not accept individuals with intellectual
disabilities because differential diagnosis can be complex, and early psychosis interventions
may be unable meet the long-term and specialized needs of these individuals.
New early psychosis programs can anticipate that they will receive referrals of individuals
with both undiagnosed and previously diagnosed autism who have recently developed
psychotic symptoms. Referral guidelines should be clear in determining whether
individuals with autism may accepted by the program, and if team members are serving
autism spectrum they may need additional training in differential diagnosis and the unique
needs of individuals with autism.
The diagnostic uncertainty of the early stages means that it is common for diagnosis to
change with time. Once a person is accepted into the program, it is important to maintain
ongoing responsibility until a successful transition has occurred. Changes in diagnosis
should not automatically lead to the discharge of the individual. Each person’s specific
needs for treatment and support should be evaluated, with a gradual process of transition
into ongoing care.
The goal of early psychosis intervention is to identify and engage the individual as soon as
possible once symptoms develop in order to prevent severe impact on functioning. Thus,
earlier is better. The hope is that as the program continues with time there will be fewer
people who have gone for long periods without treatment.
The program will need to determine whether there is a cut-off related to duration. This is not
mandatory; programs could choose to use age and symptoms alone, but longer duration of
symptoms means that individuals are likely to be more disabled and require higher amounts
of care. Since early psychosis practices are consistent with evidence-based care for
individuals with longer-term illness, integrating similar practices across the system is a good
strategy for ensuring that people with longer-term needs are able to get those met.
Duration cut-offs in early psychosis programs range from 6 months to 2 years26 or even
longer. This is from the onset of acute psychotic symptoms, not including psychosis risk
syndrome (prodromal) symptoms which may extend back considerably longer.
Please bear in mind The “psychosis risk syndrome” refers to the period of onset before the individual’s
that the SAMHSA symptoms pass the threshold of clinically diagnosable psychosis. The dividing line
Mental Health Block between “psychosis risk syndrome” and “psychosis” as measured by standardized tools
Grant 5% set-aside such as the Structured Interview for Psychosis Risk Syndrome (SIPS) involves the
funds may only be used
person’s lack of ability to reality test, degree of conviction in delusional beliefs, and the
to serve individuals who
have been diagnosed degree to which the person rearranges life activities around the psychotic symptoms.25
with a first episode of Once psychosis occurs, the onset period is referred to as the “prodrome”. Early symptoms
serious mental illness, prior to diagnosis should not be referred to as prodromal because the prodrome is a
not for activities related retrospective concept and the majority of people who develop symptoms consistent with
to serving persons at the psychosis risk syndrome will not develop psychosis. Incorporation of prodromal/
high risk.
psychosis risk syndrome symptoms into community education and clinical assessment
facilitates more rapid referral and provides information helpful to anticipate the person’s
relapse process.25
First episode programs will receive referrals of individuals who may be experiencing
hallucinations, paranoia, bizarre behavior, emerging delusional thoughts and significant
declines in functioning but whose symptoms fall into the “psychosis risk syndrome”. Once a
person has lost insight, consequences such as legal charges, involuntary commitment and
severe loss to roles and social network are common and can be rapid. Accepted practices
for individuals identified as “psychosis risk syndrome” are also different, particularly in
the area of medication use. It is important that local teams understand the difference and
that they have an intentional strategy for responding to individuals whose symptoms are
below the clinical threshold for psychosis. One potential strategy is to recommend services
elsewhere but provide brief education about the symptoms or changes that would warrant
a re-referral. Another strategy would be to begin to incorporate psychosis risk syndrome
intentionally. The current national expansion of early psychosis services is focused
primarily on first episode services so there may be prioritization and restrictions in funding
which discourage integration of the psychosis risk syndrome. [Note: Because the SAMHSA
Mental Health Block Grant dollars can only be used to serve persons who already have
a serious mental disorder, states might opt to use other funding sources to support care
for persons at risk for psychosis.] Furthermore, clinical and ethical considerations include
addressing medication use and labeling.
Clinical services for psychosis risk syndrome must address a broad spectrum of potential
etiologies, and medication use is much less frequent and more potentially problematic.
Also, the confusion of “risk syndrome” versus “prodrome” can lead to over-labeling and
treating the person as if they have a condition they do not have.
Perhaps the most challenging aspect of implementing early psychosis intervention in the
U.S. is the fragmentation of the delivery system.8,24 Successful implementation of an effective
program typically requires diversification and realignment of funding. Many public systems
do not accept private insurance payments, although a large percentage of young people
develop the early stages of illness when they are either privately insured or uninsured.
Accepting only Medicaid or other forms of public insurance may result in significant
delays; young people often enter the public system after an extended period of receiving
inappropriate or no care, resulting in more advanced illness and the resultant consequences.
Leadership and supplemental funding are needed in order to take a population-based
approach in which funding is not a determinant of eligibility. At a community level, this kind of
coherent and coordinated approach has the most benefit and does not perpetuate a multi-
tiered system in which young people are encouraged to opt out of private insurance in order
to access the care they need. This particular area is one where significant work is needed at
policy and systems level to ensure that individuals with private insurance, Medicare and no
insurance are able to access care appropriate for their condition.
In addition to the anticipated incidence, programs should factor in the fact that for every
appropriate referral they can expect one to two referrals which will not be appropriate.
Despite being screened out from the program, these referrals can take a significant
amount of time in assessment, debriefing, problem solving and assisting with linkages in
the community. The EASA program assumes approximately an average of three hours of
time per referral, whether the person is accepted into the program or not.
• All roles operate as part of a single team and should have the capacity to serve both
under and over 18 without having to transition to a different clinician. This often requires
additional training and supervision to help team members gain comfort with an age
spectrum they may not have previously served.
• Early psychosis teams require close coordination, flexible response and a steep
learning curve. Consolidating into fewer positions which are full-time or closer to
full-time increases efficiency and flexibility.
• All positions will have some level of contact with family members, and all will offer some
level of psychoeducation.
• It is common for more than one staff person to participate in a meeting with the person.
For example, counselors often join meetings with the psychiatrist.
• Job descriptions should be specific to early psychosis functions rather than using
standardized language from the agency.
The exacT roles among clInIcIans vary across Teams, bUT cover The
followIng fUncTIons:
Acute care. Psychosis can be life-threatening, so early psychosis programs need to pay
close attention to risk assessment and to linking with acute care systems. Twenty-four hour
response availability is needed. Some early psychosis teams include on-call duties, while
others link to local crisis systems. Acute care practices can cause trauma and negative
perceptions of coercion. In addition, many acute care settings turn rapidly to high-doses of
medicines with negative metabolic syndrome profiles or other significant side effects. Since
early psychosis programs typically start with low doses and emphasize careful attention to
prevent side effects, early psychosis programs often try to switch individuals who start out
with high doses of side-effect-inducing medicine. The switching process may be complicated
and the initial experience of medication may impact the participant’s long-term perceptions.
Lead clinician. This role may go by various titles and may be filled by a range of disciplines
such as a counselor, therapist, social worker or psychologist. The lead clinician is generally
a masters-level or more advanced clinician who takes a lead in assessment and clinical
interventions. This position uses a range of clinical approaches, which can include cognitive
behavioral therapy, psychoeducation, motivational interviewing, feedback-informed
treatment, trauma reduction, in vivo strategies and other strategies such as mindfulness
training. Traditional therapist and care management roles are sometimes blended, since the
process of engagement requires significant outreach and the translation of knowledge is
sometimes easiest in “real-life” settings. Generally caseloads need to be carefully managed
based on acuity and clinical intensity. It is recommended that these positions never have
more than 25 participants per full-time position.
Peer support. Individuals with lived experience of psychosis who have navigated that
experience successfully can play a crucial role in supporting the early recovery process,
as well informing other team members. While professional peer support roles are common
throughout the mental health system, their emergence in early psychosis programs is
relatively recent. Although there is not yet a strong evidence base around peer support in
early psychosis, there is growing recognition of the importance and impact of this role.30
Successful implementation will require clear job duties, significant leadership and team
training to ensure a supportive climate.
Care management2 and skills training. The team works with the participant and family
as needed in goal-directed activities based on the person’s needs and interests, such as
helping the person utilize public transportation, engage in community recreation, access
insurance and learn to live independently. Some programs utilize staff with bachelor’s
degrees or less to assist with these types of tasks.
Psychiatry. Psychiatry is a crucial part of the team. In some states and locales psychiatric
nurse practitioners are utilized in conjunction with, or sometimes in lieu of, psychiatrists. It
is essential for the medical professional to attend all team meetings, and to ensure rapid
access and frequent contact, including seeing individuals when they choose not to take
medicine. Like all team members, psychiatrists or psychiatric nurse practitioners need to
have the ability to serve both under and over age 18, along with in-depth knowledge about
psychosis, adolescent physiology and developmental context. Medication algorithms are
available to support prescribing practices. Early psychosis programs will want to address
whether an algorithm will be used, and if so, how.
Nursing. Registered nurses are key players in coordination of care across medical
settings, monitoring for symptoms and side effects, and nutritional and wellness-related
programming within the team. They are not included on all early psychosis teams and
there are not identified standards for levels of nursing, but given the significant health
concerns (such as early mortality and metabolic disorder), nursing functions should be
carefully attended to.
Family support. Families are critically important partners in early psychosis programs, for
individuals under and over eighteen. They are often the primary catalysts and facilitators
helping the person find the way to the team. Partnership with families and use of evidence-
based individual family and multi-family group psychoeducation both supports families and
can have a significant impact on the participant’s functioning and symptoms.
2
Care management is used here instead of the term case management. Although the term case management
is still popular, it is often perceived as a negative term suggesting that they are dehumanized “cases” in need of
“management”. Careful attention to language connotation is a key element of early intervention.
Substance abuse. Early psychosis programs normally provide substance abuse treatment
using a harm reduction model. The optimal approach is for substance abuse services to be
provided within the team, and for the team to integrate dual diagnosis best practices.33
Cultural adaptations. Team members will need to actively seek to understand the
culture of their community and the individuals they work with, as well as biases and
preconceptions endemic in their own cultures. Cultural information should be actively
sought from the point of first contact, and integrated into the conceptualization of
community education strategies, explanatory models and treatment approaches.
One of the core concepts of early psychosis intervention is the “critical window” construct,
which identifies the first three to five years as a core period during which the long-term
level of disability is often established.34,35 Although many early psychosis programs
currently have durations of two years, in a recent review of standards for early psychosis
programs, a three to five year duration was identified as optimal.18
No matter how long the program, rapid access for new referrals as they emerge is a
core feature of early psychosis intervention. Thus, if the program will be longer, it will be
important to ensure the ability to manage the ongoing projected volume of the program.
How quickly will individuals enter the program? This is impacted by the eligibility
criteria, consistency of the screening process, population size, demand and visibility of the
program. Often in the beginning there are a significant number of referrals of individuals
who have been experiencing psychosis for lengthy periods without appropriate care, and in
some cases those individuals are accepted into early psychosis programs. The advantage
of accepting individuals (often by exception) who have had longer duration of psychosis
is that it offers them evidence-based care and it allows the program to gain relevance
in the community. The disadvantage is that the people who have been experiencing
psychosis for longer may have greater and longer-term needs. Also, if the community
is not adequately serving individuals with long-term support needs, this issue will need
to be addressed at a community level in order to ensure the long-term success of early
psychosis program graduates.
• How many will continue over time? Generally there will be some attrition, even with
proactive engagement, as individuals move, choose not to continue, or connect to care
elsewhere.
• Will the anticipated intensity shift with time? In the early stages the lead clinician
may need to maintain a 1:10 ratio temporarily if the entire caseload is made up of
people who are newer and have higher acuity, but the ratio may shift as high as 1:25
for longer-term less intensive needs. Likewise, the overall level of care may not need to
be as much after the first year. It is important to maintain intensity in order to respond to
acuity and help participants maintain developmental momentum, but simultaneously the
program must balance the need to maintain access.
• At what point will the team become fully staffed for its long-term projected
capacity? Since referrals to the program occur gradually, it can take as long as two
years or more before the program has reached its anticipated capacity. There is a
great deal of need for community education in the beginning stages, so having extra
staff during that time can help speed up getting the word out and generating referrals.
However, community education activities are not billable and excess capacity is not
sustainable without start-up funding.
Typically Medicaid funding will reimburse a much higher percentage of the costs than
private insurance, although a case rate is generally preferred if the funder is willing to
negotiate an alternative funding methodology.
Most early psychosis programs will require ongoing subsidization given the current
financing system in the U.S., so careful attention to financing and collaboration across
sites to build a long-term strategy is important. As insurance parity requirements become
better articulated as they relate to team-based services for individuals with serious mental
illness and preventive services, and as fewer individuals remain uninsured, early psychosis
programs will likely become easier to fund. Meanwhile, early psychosis programs play an
important role in identifying and advocating for long-term financing strategies.
At the earliest stage, key managers need to understand the intent and core parameters
of the program, early systemic infrastructure needs, opportunities for linkages to efforts
beyond the program, and common challenges to anticipate and plan for, such as issues
with productivity standards, youth-friendly communications, flexible work schedules and
the need to modify forms. It is important early on to map how communication about the
early psychosis program, referrals, intake, data collection, assessment and treatment
planning, and discharge planning will occur within the agency’s normal service flow, and
what needs to be different to accommodate the program’s needs.
oversIghT
How will the early psychosis effort connect formally to local governance and
quality improvement structures? Since the program relies on partnerships and requires
philosophical and practice realignment and redesign in multiple activities throughout
the organization, it is important to tie efforts into formal governance or local oversight
processes. If the effort is primarily local, this oversight group could be combined with the
state level, but local governance should not be overlooked.
For programs which are not stand-alone, it is particularly important to attend to the
consistency between the early psychosis functions and other responsibilities of team
members. The following factors may affect the decision about where to place the early
psychosis program:
• Since early psychosis programs involve rapid, sustained and intensive response to
the needs of individuals identified, it is important that the environment support this
type of response. When agencies attempt to combine early psychosis work as part
of a person’s job with large caseloads in the other part, it frequently becomes highly
problematic.
• Most mental health centers currently have separate youth and adult services. Early
psychosis services combine these and can help move the agency toward a teenage/
young adult focus. It is important to recognize that services housed in the child and
adolescent part of the organization will often lack basic knowledge about psychosis
and adult resources, whereas on the adult side there is often more knowledge about
psychosis and less about developmental psychology and schools.
Physical location. Physical location is a very important element because it can facilitate
or work against the teams’ goals, and it has a strong impact on the perceptions of
individuals coming into the program. Some considerations in planning the physical
location include:
• What will the space feel like to young adults? What is the waiting area like? If there are
a large number of much older individuals who have long-term illness or small children
this can work against engagement. It is helpful to engage young adults early on in
giving feedback about the physical and emotional climate they experience entering the
program.
• How will the staff achieve physical proximity? Co-location is optimal. Team members
will need the ability to confer with each other routinely, and having the team in the same
physical location makes communication much easier as well as building a visible sense
of identity.
• How will the program address medical space needs? This includes appropriate secure
and climate-controlled storage of medication samples, lab testing if this is being done
on site, equipment for measuring height and weight, a sink, and other needs identified
by medical staff. It is important to have a private space for physical examinations and
medication injections where appropriate.
• The program should have its own name and look, which may include a logo. It is optimal
for the name to be the same across sites if there are multiple programs beginning in a
state. Naming the program can be an important early role for young adults and the new
team. It is important to think about the connotations of the name and how individuals
referring and being referred may react to it. For example, a team named the “Early
Psychosis Initiative” may encounter immediate resistance by individuals being referred
in response to negative assumptions about the term psychosis.
• Signage within the physical location indicating the presence of the early psychosis team
helps to facilitate a sense of identity both within the agency and within the community.
Human resources considerations. It is critical to identify staff who are motivated to learn
and to do the work, as well as to adapt human resources processes to ensure they are
appropriately supported.
• hiring. While this may seem obvious, it is important to develop job descriptions which
explicitly describe early psychosis functions and expectations, and to recruit for the
individuals who are suitable for the job. If team members are selected through a
reassignment process, it is important to make sure that they want to be doing the work
and are a good fit. There are advantages to using staff who are well-established in
the agency and community, since (assuming they are motivated and the right fit) they
may be less likely to leave the agency and better prepared to navigate systems. Staff
attributes which are particularly important for early psychosis programs are noted below:
• Preferably, staff should reflect the cultural, linguistic and ethnic diversity of their
community.
• Early psychosis programs need staff who are flexible, proactive, persistent, believe
in the capacity of individuals with psychosis, love learning, and enjoy working with
teenagers and young adults.
Communications and technology infrastructure. Access to cell phones and internet are
essential for this program. In addition, a few things to consider early on:
• Direct phone line to the program. The program will need its own phone number for
referrals. It is very important to ensure that this phone number remains the same over
time because it will be widely distributed in brochures and other community education
formats, and if the phone number changes people may not find the program.
• Texting and email policy. Many individuals, particularly young adults, no longer
communicate directly by telephone. Texting may be the only way to reach a young
person, and family members often want to use email to communicate. While this will
require its own procedures to obtain required permissions and there are appropriate
limits on content, agencies will need to address how emails and texting can occur
where it is the only way to communicate with an individual or family.
• Health records systems. How will existing health records systems be modified to
include required elements of the early psychosis program? Typical areas needing
modification include:
• Referral tracking. Information about referrals and the reason for acceptance or
non-acceptance needs to be tracked over time, even for those who are not accepted
into care. Re-referrals are common, so it is important to know the outcome of the
prior referral. Also, referral data provides important information about the impact
of community education, sources of referrals, demographics of individuals being
referred, accuracy of referent sources, and other important information for quality
improvement such as timing between the referral and intake and frequency of repeat
referrals.
• Treatment plans. Treatments plans should be easy to customize and modify and
should be readable and easily accessible for printing in order to share with the
individual and team.
• Website. It is optimal for the program to have its own web page, and preferably,
website.
• Brochures. The program will need its own brochures and informational material,
preferably of high quality, with color. Brochures should include basic information about
early signs and symptoms of psychosis, who the program accepts, and how to make a
referral. Materials should facilitate a positive and hopeful outlook on the likely success
of young people facing these conditions. Brochures and other educational materials
should be translated into common local languages, and may need to be modified based
on cultural differences.
Linkages across the agency and systems. The team has numerous responsibilities which
will require support and modified procedures from other parts of the agency and system:
• Referral and intake processes. How will normal referral and intake processes be
modified in order to allow rapid, direct access to the team?
• fee policies. Since services are intensive, people paying out-of-pocket may end up
with a large bill which results in them choosing to limit necessary care. It is important to
develop methods for minimizing the financial burden on families which cannot afford the
cost of the program.
• 24-hour crisis support. How will the program link to and provide 24-hour crisis
services? If a person is referred through the crisis team, how will a rapid linkage to the
team occur?
• Educating and monitoring staff to ensure they use billing codes which are
appropriate;
• Setting rates to better incorporate the program’s real costs (i.e., higher
level of travel time, etc.);
Person-centered planning. The goals which provide the direction for treatment activities
come from the individual’s perspective and with input from the family; clinical strategies are
viewed as a method to build the person’s capacity and remediate symptoms which prevent
the person from moving forward with these goals. This provides a common understanding
between the clinical team, the person and family of what the group is working to
accomplish together.
Shared decision making processes. Transparency and shared decision making with
the individual being served and family members are core values for most early psychosis
programs. Thus, programs will need explicit and robust methods for facilitating decision
making partnerships and for integrating feedback into program design and quality
improvement.
team coordination. Early psychosis services rely on close collaboration among team
members, working off of a single plan of care. In order to accomplish this, team members
meet and discuss every person who they are serving at least weekly, in addition to routine
coordinated treatment planning and review, shared training and planning. Many early
psychosis programs have adopted methods similar to Assertive Community Treatment
standards.20
Clinical supervision and clinical management. Team members routinely work with
individuals who may be dealing with acute and potentially life-threatening symptoms, as well
as a range of complex needs related to their stage of development and relationships. Skilled,
frequent and easily accessible clinical supervision is critical for problem solving, clinical skill
development, and ensuring that the work is well-supported within the agency structure.
Peer support. There are multiple models of peer support and not a clear consensus
on a single model most relevant to early psychosis. It is important for individuals who
have recently begun to experience symptoms of psychosis to meet others who can
share knowledge gained from both direct experience and training. It is important that the
functions of peer support positions be well-articulated and structured, and that leadership
recognizes the staff training, cultural shifts and clinical supervision needed to fully embrace
peer support.
Supported education. The IPS principles of supported employment are also widely
used in early psychosis programs’ efforts to support individuals in high school, college,
apprenticeships and other post-high school educational settings.32 Blended supported
employment-supported education roles are common in early psychosis programs, although
the degree to which these roles can and should be blended is still under debate. The
experience of psychosis symptoms does not prevent the ability of individuals to complete
these programs and do well. Team members should become familiar with the types of
supports available on campus, including 504 plans, Individualized Educational Plans
(IEPs), and how to work with higher education Disability Services. Both for school and for
work, the ability to assess for and identify accommodations for cognitive, sensory, and
symptom-related issues including anxiety are important supports for young people who are
continuing in school.
Cognition. Many individuals with early psychosis experience difficulties with slowed
information processing speed, working memory, attention and other cognitive functions.
These changes can be accommodated, and perhaps even remediated. Understanding how
to identify and accommodate cognitive challenges is a core competence of early psychosis
teams. Cognitive remediation or enhancement models have achieved a significant
evidence base and are increasingly being integrated into early psychosis programs.41
Health and wellness strategies. Nutrition, exercise, sexual health, and tobacco use
prevention and cessation are all important in early psychosis programs. Careful attention
to metabolic disorder and diabetes are particularly critical.
Cultural adaptations. Early psychosis programs serve individuals from many cultures,
and need to be culturally humble and adept at working with families with different or
even no concept of mental illness, widely varying explanatory models and methods of
seeking healing, and varying relationships with dominant cultures. Migration may even
be a risk factor for the development of psychosis.28 Ongoing efforts to increase cultural
understanding and awareness, access to interpretation and cultural consultation, as well
as staffing patterns which reflect the community’s diversity are all important elements of
early psychosis programs.
The program and its partners will need to develop and implement an ongoing
community education strategy which addresses each of the following steps:
• Set aside routine time for community education and engage partners who may help.
• Identify and prioritize key internal and external audiences:
• Since they may be the first to take calls, start with internal audiences: (e.g.,
reception, crisis, intake, or other mental health practitioners)
• The second layer of prioritization is crisis and referral systems: ER, 24-hour crisis,
hospitals, and 211
• Then explore other external entities: mental health professionals, doctors, youth-
serving organizations, schools, community groups
• Targeted media stories can be helpful in reaching out to family members and friends.
However it is important to pitch the story carefully with a positive, personal hook
since there is a danger that the media may want to tie the story to violence, and a
bad story can be worse than not having one. Opinion pieces give the most control.
Be sure to include specific symptom descriptions based on who you want referred.
• Measure and evaluate the community education, with measures such as: level of
effort, resultant referrals, referral accuracy, and duration of untreated psychosis/early
hospitalizations and legal involvement.
• What outcome data will be collected, by whom? How will quality improvement and
?
evaluation occur?
• Will standardized measures be included? How will they be integrated into the clinical
treatment and clinical review process?
• How will the experience of program participants, families and other advocates with lived
experience of psychosis be included in defining and interpreting outcome measures?
• Where will data results be shared? How will the information be used?
• Will the results be tied to money or other formal expectations? How will data be used to
aid ongoing quality improvement and service development?
• How will programs revise and improve evaluation processes with time?
Several active processes are occurring nationally to establish agreement on the optimal
data set for early psychosis programs. Considerations in that process include clinical and
administrative usefulness, as well as burden.
• How does it relate back to program guidelines? Fidelity tools presume an articulated set
of expectations or standards to which programs are held. In order to develop or even
adopt a fidelity tool, it will be important to make sure that the tool is a good reflection of
the program’s training and written performance expectations.
• If there are fidelity scales associated with specific evidence-based practices the
program is implementing, will those scales be integrated, and how? Are there
inconsistencies between the program guidelines/intent and the available scales? How
will those inconsistencies be managed?
Who will take the lead on the fidelity process? Responsibility for fidelity measurement
must be linked to training and performance expectations, so responsibility for adoption
and implementation of fidelity tools should be closely tied. For example, Oregon EASA has
written practice guidelines which are periodically updated and form the foundation of both
training and the fidelity measurement document. Changes to the fidelity document occur
through a consensus process and are directly tied to the practice guidelines.
• How are the items within the tool ranked and weighted? Are there certain items which
are so central to practice that without them the program cannot pass?
• What is required to “pass” the fidelity process, and what does it mean not to “pass”?
Does it impact funding? Is there a process for technical assistance and re-review?
• Will the review process occur on-site or remotely, and under what circumstances?
On-site reviews can very effectively use multiple sources of information to highlight local
strengths and developmental needs. On-site processes may be particularly important
for newly established programs, programs with significant turnover, and programs which
have difficulty passing the review process. However, on-site processes are also time
intensive and require significant preparation by local programs. A combination of on-site
reviews with self-assessments and use of remote data may be optimal. On-site reviews
can be designed to use both experts and peers from sister programs.
• How will fidelity connect to outcomes and clinical training? Use of outcome reporting to
supplement fidelity review keeps the focus on the “why” of what programs are trying to
accomplish, versus the “how” of how they get there. Clinical training and credentialing
can include a clinical supervision component which may address fidelity to clinical
practices, and therefore may replace elements of a broader fidelity process.
conclusion
Collectively, the 20 Steps delineated in this document are intended to provide a
helpful framework for decision-making and associated action steps to be taken
when embarking on the important process of establishing an early psychosis
initiative. This Guide may be updated in the future to reflect newly emerging
lessons-learned in this growing field of programming.
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