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Key Decision Points Guide

This document outlines 20 steps involved in establishing a new early psychosis intervention program. It discusses identifying related efforts, resources, leadership, goals, eligibility, staffing, budgets, community education, and evaluation. Establishing such a program requires many considerations and decisions.

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© © All Rights Reserved
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0% found this document useful (0 votes)
34 views

Key Decision Points Guide

This document outlines 20 steps involved in establishing a new early psychosis intervention program. It discusses identifying related efforts, resources, leadership, goals, eligibility, staffing, budgets, community education, and evaluation. Establishing such a program requires many considerations and decisions.

Uploaded by

saurav.das2030
Copyright
© © All Rights Reserved
Available Formats
Download as PDF, TXT or read online on Scribd
You are on page 1/ 49

InformatIon GuIde

Steps and Decision Points in Starting


an Early Psychosis Program

Authors: Tamara Sale of the EASA Center for Excellence at Portland


State University, with assistance from Shannon Blajeski

Technical Assistance Material Developed for SAMHSA/CMHS under Contract Reference:


HHSS283201200002I/Task Order No. HHSS28342002T
table of contents

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.

New early psychosis programs are joining a thriving international movement


with many available resources. Within the United States there is active
national collaboration to help organize and disseminate the resources that
new sites need. In addition to identifying the steps involved, this guide will
also provide introductory information about some of those resources.

Steps and decision points in Starting an early psychosis program 1


Information Guide

Why implement an early psychosis program?


Worldwide duration of untreated psychosis has been reported to last an average of two
years2 and the recent Recovery After an Initial Schizophrenia Episode (RAISE) study in the
United States found that the median time from the onset of psychosis to the time a person
received treatment was over a year.1,2 Even with short durations, psychosis can rapidly
lead to justice system involvement, involuntary hospitalization, loss of social support and
normal roles, and loss of ability to function.3,4,5,6 Since the onset of psychosis is commonly
during adolescence and young adult years, it can greatly disrupt the normal developmental
processes of individuation, adopting adult roles and responsibilities and forming an adult
identity. Although the U.S. spends billions of dollars per year responding to psychosis,
the service delivery system does not effectively address the needs of young people who
develop this condition.7,8,9,10 Early psychosis intervention provides a viable, non-coercive,
and more effective alternative to individuals who have recently developed psychosis.

The broader conTexT

Early psychosis intervention is well-established in numerous


locations internationally, including a growing network inside of
the United States. (“Step 2” in this document directs readers
to where they can find additional information about the
programs described here). Outside of the United States, early
psychosis intervention was well-established throughout most
Commonwealth countries and in parts of Scandinavia by the
early 2000’s. The Early Psychosis Prevention and Intervention
Center (EPPIC) at the University of Melbourne collected, tested
and developed methods related to early psychosis intervention,
and became an international training ground.11 Australia, New
Zealand and Great Britain were the first countries to adopt
national early psychosis strategies. Other countries such as
Canada developed widespread early psychosis intervention without a single national
strategy or guidelines. The International Early Psychosis Association (www.iepa.org.au)
provides a vibrant and growing forum for programs throughout the world to share their
growing knowledge and experience.12

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.

Steps and decision points in Starting an early psychosis program 2


Information Guide

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.

Steps and decision points in Starting an early psychosis program 3


Information Guide

UndersTandIng The core elemenTs of early


psychosIs InTervenTIon.

Early psychosis intervention works to systematically identify individuals in


the early stages of psychosis, reduce barriers to access, and successfully
engage the person and family in a way that fosters their positive identity
and resilience. Early psychosis programs provide education, treatment and
support, and they transition the person into long-term resources. 7,11,14,15,16.18
Early psychosis intervention can be understood as a set of interventions
tailored to the unique needs of adolescents and young adults who have
experienced symptoms of psychosis. Many of the interventions included
in early psychosis programs were developed primarily with individuals
with long-term illness, and the process of adapting these approaches
is still relatively new. There is broad consensus about the elements of
early psychosis intervention.1,13 The following are core elements of early
psychosis programs:

• Early psychosis programs aspire to engage with young people and families as partners
in decision making at all levels.

• Community education facilitates rapid identification, referral, successful engagement,


and positive ongoing supports within the community.

• Programs aspire to minimize barriers to entry which often prevent successful


engagement, such as requirements around motivation, recognition of illness, and
logistical challenges such as funding and transportation.

• 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.

Steps and decision points in Starting an early psychosis program 4


Information Guide

• Substance abuse treatment provided directly by the team reduces unnecessary


consequences and supports a higher level of recovery.

• 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.

• Attention to sustainability and evaluation are also of central importance.


• It is helpful to replicate existing models to implement programs more quickly, but most
programs will need to make adaptations based on missing or weaker elements in the
model they are following and local cultural or programmatic considerations. In addition,
early intervention programs must remain attuned to ongoing research, feedback and
experience and recognize that programs must actively work to improve and develop
with time. Individuals with first-person experience of psychosis are also an extremely
important ongoing source of knowledge and direction for these programs.

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.

Steps and decision points in Starting an early psychosis program 5


Information Guide

StepS In BeGInnInG A proGrAM


Regardless of the current implementation status, the following steps are ultimately needed
to successfully implement a program. The steps do not always occur in this order.

Step 1. Identify and coordinate with other parallel and


related efforts.
If there are multiple early psychosis efforts within the same state, network,
or region, it is helpful to have a program leader/champion at the state level,
and to establish a collaborative cross-site planning process which facilitates
one consistent approach while recognizing local variation. Inconsistencies
across sites can lead to confusion, ethical concerns (i.e., an individual
being eligible for one early psychosis program but not another in the same
state or region), and inability to set standards, coordinate or advocate in
a consistent way at the state level. It is helpful to have consistency and
coordination of programs within the same state or network with regard to:
• Program name, to facilitate social marketing and visibility across a broader
geographic area;

• Logo and marketing materials;


• Eligibility criteria;
• Program guidelines and basic structure;
• Training and oversight processes;
• Data collection and reporting; and
• Cross-community problem solving and sharing.
Since program implementation involves numerous decisions, it is helpful to clarify how
those decisions will be made and how disagreements will be managed.

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.

Steps and decision points in Starting an early psychosis program 6


Information Guide

Step 2. Become familiar with core documents and


available resources.
As described above, there are numerous excellent resources focused on early
psychosis intervention. A few of these are listed below to help get started.

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/

are There programs near yoU?

The National Psychosis Prevention Council maintains a web-based listing of


early psychosis programs and technical assistance resources nationally
(http://psychosisprevention.org/), and EASA and the Foundation for Excellence
in Mental Health also have developed a directory which is updated periodically
(http://www.eaSacommunity.org/home/ec1/smartlist_123/national_resources.html).

Program-specific information. The SAMHSA environmental scan listed above provides a


large amount of detail and links to programs around the world.

Steps and decision points in Starting an early psychosis program 7


Information Guide

Step 3. Identify and enlist an oversight/leadership group.


Successful implementation of early psychosis intervention requires significant
leadership.22,23 Formal leadership groups which meet on a routine basis increase
the chances of success and help build personal investment and understanding
among stakeholders.

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.

core roles In The early sTages InclUde:


• Establishing a shared understanding of the underlying purpose, goals and methods
of the program;

• Anticipating the future development of the program beyond its initial stages and to
ensure that key decisions reflect the long-term needs;

• Ensuring the successful implementation of the program;


• Including key stakeholder perspectives in the planning and implementation process;
• Linking to other related processes to facilitate the new program’s ability to succeed
in its goals; and

• Establishing program performance benchmarks.


Oversight and advisory groups require staff support and coordination, so depending
on the needs and developmental stage of the program, groups may not necessarily be
permanent, and may evolve with time. As implementation progresses, oversight groups
may play an important roles such as:

• Helping to facilitate and improve linkages to professional and community networks;


• Tracking outcomes and continuing to work toward improvement;
• Identifying gaps, needs and opportunities for improving the program’s sustainability,
comprehensiveness, and continuity of care; and

• Carrying the program’s philosophy, goals and knowledge into partner organizations,
such as medical organizations, schools, hospitals, etc.

Steps and decision points in Starting an early psychosis program 8


Information Guide

some consIderaTIons In esTablIshIng a leadershIp


sTrUcTUre InclUde:

• 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.

• How will the group be staffed? The process of recruiting,


orienting and facilitating the group will require a skilled and
knowledgeable individual, who may or may not be the same
person charged with program implementation.

• How will participation by individuals with lived experience of


psychosis, young adults, and family members be sought out
and supported? Support may take the form of orientation,
mentoring and role clarification, payment, logistical support
(such as transportation and childcare), and interpretation.

• In some cases, a two-tiered structure of an operational


oversight group and a strategic advisory board may make
the most sense, since some members of the group will have
different levels of involvement, but broader partnerships are
also needed. The operational group could be a committee of
the broader group rather than a separate structure.

• 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.

perspecTIves whIch are essenTIal To InclUde on The leadershIp


groUp InclUde:

• Individuals with lived experience of psychosis and/or representation by key consumer


organizations;

• Family members of individuals with lived experience of psychosis;


• Local program directors and managers for programs being implemented; and
• Representation of state and regional regulatory and funding organizations likely to
impact implementation and sustainability.

Steps and decision points in Starting an early psychosis program 9


Information Guide

Other key champions or partners who are in a position to facilitate successful


implementation may also be helpful, on either the leadership team or an advisory group, or
as less formal partners. These could include:

Representation of tribal leadership or key cultural groups reflective of the community

Mental health treatment provider organizations

Advocacy organizations

K-12 school system representation

Community and four-year college/university representation

Local crisis and hospital systems

Medical community

Vocational Rehabilitation and other workforce-related stakeholders

Public health representation

Law enforcement

Juvenile court/ forensics

Housing programs

Insurance companies

Steps and decision points in Starting an early psychosis program 10


Information Guide

Step 4. orient the leadership group and other key


partners to early psychosis intervention and how it relates
to existing missions, initiatives, and priorities.
It is helpful to draw on outside expertise and resources. If a position charged with
implementation has already been established, that individual may take the lead on
orientation, or do so in combination with outside experts.

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.

There are a variety of ways of articulating the organizing goal


of the early psychosis effort; and how that goal or “problem” is
defined will affect the vision and range of options considered,
as well as the perceived relevance of the program. Goals such
as reducing the duration of untreated psychosis and preventing
relapse, while important, are more a means to an end than the
end itself. So, for example, an overarching goal (such as keeping
young people with early signs of psychosis on their normal
developmental path and reducing long-term disability) provides a
broader framework in which to incorporate the energy and vision
of young people, families and other community partners.

Early psychosis intervention can also be framed as systemic


work with the goal of more rapidly transforming the mental health
system and its allies toward a coherent and agreed-upon long-term vision. Articulating
early psychosis goals within a longer-term developmental context reduces the likelihood of
complacency with an inadequate or incomplete effort, and provides a long-term framework
for ongoing partner engagement.

aT a mInImUm, The InITIal leadershIp overvIew shoUld InclUde:

• 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.

• Philosophical underpinnings of early psychosis such as the stress-vulnerability model,


developmental focus, and the importance of an evidence-based approach

• Core components of early psychosis intervention

Steps and decision points in Starting an early psychosis program 11


Information Guide

• Team functions and intensity/flexibility requirements


• What is needed from leadership in the ongoing effort, including:
• Addressing policy, regulatory and procedural barriers to developmentally appropriate,
proactive care; and

• Identifying and facilitating linkages to systems, organizations or individuals whose


participation is needed or potentially helpful. For example, if the program does not
have easy access to community/agency partners such as schools or adult crisis
response, facilitated introductions may resolve these challenges. Likewise, issues
of eligibility and intake procedures, human resources (i.e., interpretation of billing
codes, productivity, flexible time, billing infrastructure and requirements), and
sustainability (ability to fund all individuals and elements of the program) may require
facilitation and advocacy by individuals at a senior level of authority.

• Finally, specific parameters from funders and regulators.

The overvIew mIghT also InclUde:

• 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.).

Steps and decision points in Starting an early psychosis program 12


Information Guide

Step 5. Identify one individual or a small team who will


have the primary responsibility for facilitating successful
implementation.
This individual or small group should have strong support and authority within decision
making structures, and the ability to reach out to decision makers in a range of hierarchical
positions to accomplish goals. Optimally, the early psychosis effort should be one
individual’s primary or sole responsibility, with a job description that reflects this. The
individual can and should rely on consultation from outside experts as needed, but a local
facilitator/advocate embedded in the decision making infrastructure of the state cannot be
successfully replaced by individuals outside of the state.

aTTrIbUTes whIch are helpfUl In ThIs


posITIon InclUde:
• A strong orientation toward person-centered approaches;
• Versatility in navigating and facilitating system development
needs from multiple perspectives: analysis and translation of
clinical and research knowledge, lived experience of people
with psychosis and families, data and research, planning
and implementation, financing, and operational concerns, as
well as social marketing to a variety of audiences from policy
makers to parents;

• Understanding of and commitment to the importance of this


work;

• Ability to articulate and facilitate broad ownership over a


coherent vision, set of principles, and action plan; and

• Problem solving ability, flexibility, and persistence.

Steps and decision points in Starting an early psychosis program 13


Information Guide

Step 6. Articulate long-term and short-term goals, roles


and timelines.

IT Is UsefUl To IdenTIfy specIfIc goals


assocIaTed wITh The early psychosIs
efforT, InclUdIng:

• What is the early psychosis effort trying to accomplish/

?
change?

• A before/after document is useful in providing a


visual illustration of the change the early psychosis
implementation is attempting to implement, and
providing a framework for tying long-term vision to
specific strategies and actions

• What implementation steps will be completed by


whom and in what time frame?

• What changes are hoped for as a result, and how will


those changes be measured?

Steps and decision points in Starting an early psychosis program 14


Information Guide

Step 7. Identify initial resource availability and


resource development needs, and resource
development strategies.
Early psychosis services combine a range of activities, some of which are not
ordinarily billable under health insurance. In addition, individuals served by
early psychosis services frequently change insurance status. Limitations in
service access based on insurance can create discontinuity and delays in care,
force people out of the private insurance market and into publicly funded care,
and create a situation where effective care is available only to publicly funded
individuals and not to people who are privately insured. Thus, a proactive and
intentional approach to diversified revenue is necessary for program efforts to
succeed in the long run.

a few sTraTegIes whIch exIsTIng sITes have foUnd helpfUl,


and/or whIch hold promIse InclUde:

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.

Adequately funded case rates or service bundling agreements may be


Exploring Alternative
preferable to fee-for-service, although funders need strong buy-in for this to
Payment Methods
occur

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.

Steps and decision points in Starting an early psychosis program 15


Information Guide

as programs begIn, an InvenTory of projecTed resoUrces, gaps and


sTraTegIes Is ImporTanT. QUesTIons InclUde:

?
• What resources are already allocated to this purpose
(Federal Block Grant, other sources)? Are there
restrictions on the use of the funds?

• What financing sources could be available for this


purpose and how would they be accessed (Medicaid
and private insurance billing, funds targeting hospital
diversion, jail diversion and indigent care, Vocational
Rehabilitation, housing funds, private foundation
funds, etc.?

• What gaps are anticipated?


• How might partnerships contribute?
• What early strategies will be pursued to maximize
available revenue (i.e., grant writing, documenting
gaps, advocacy, etc.)?

Steps and decision points in Starting an early psychosis program 16


Information Guide

Step 8. Identify the initial geographic catchment area


and agency provider for the early psychosis program(s).
Where pilot sites are being identified, geographic factors, local leadership and
infrastructure, and pragmatic considerations may contribute to the choice of
catchment area. Factors affecting these decisions may include:

• Required procurement processes.


• Population size and density. There is not a specific requirement around needed
population size to support a program, but the structure and expectations of the program
will vary based on these factors. Also, it is easier to gain a “critical mass” of participants
in areas with larger populations.

• Some attributes which are important for the choice of “early adopters” which will lay the
groundwork for statewide efforts include:

• Strong organizational and clinical leadership;


• Commitment to and experience with adapting evidence-based practice;
• Consistency with organizational mission;
• Strong orientation to strengths-focused and person-centered approaches;
• Strong relationships across the catchment area and commitment to access by
underserved, rural and remote populations;

• Engagement by people with lived experience and families in organizational decision


making; and

• Organizational practices which support outreach, flexibility in personnel practices and


schedules, integration of data into decision making,and problem solving.

Steps and decision points in Starting an early psychosis program 17


Information Guide

Step 9. define the program’s initial eligibility criteria


or guidelines.
While the primary focus of most early psychosis intervention programs is on identifying
individuals in the early stages of schizophrenia and related conditions, symptoms in
the early stages may be harder to differentiate, and it is important not to diagnose
prematurely. Many programs internationally focus on a broader spectrum of psychosis.
It is common for community-based criteria to be modified over time based on experience
and ongoing discussion.

In The early sTages IT Is ImporTanT To consIder The followIng


procedUral QUesTIons:

?
• 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.

• Are the eligibility standards considered hard-and-fast criteria, or is there flexibility


for exception? If there is flexibility for exception, who has the authority to make an
exception?

• If an individual or referent disagrees with a decision, what is the appeal process?


How is the decision and the appeal process communicated to referents and/or referred
individuals? Who makes the final determination?

• 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.

Steps and decision points in Starting an early psychosis program 18


Information Guide

Each program faces specific decisions associated with eligibility:

whaT wIll be The age range aT enTry?

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.

whaT dIagnosTIc specTrUm Is elIgIble for The program?

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.

Steps and decision points in Starting an early psychosis program 19


Information Guide

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.

whaT wIll be The cUT-off relaTed To dUraTIon of UnTreaTed


psychosIs?

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.

how wIll The program address psychosIs rIsk syndrome?

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

Steps and decision points in Starting an early psychosis program 20


Information Guide

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.

wIll There be resTrIcTIons on InsUrer/fUnder?

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.

Steps and decision points in Starting an early psychosis program 21


Information Guide

Step 10. develop initial incidence projections.


Incidence is the number of new individuals developing a condition during a
time period, whereas prevalence is the estimated number of individuals having
the condition during a specified period of time.27 An initial projection of annual
incidence will provide an important part of determining the team capacity needed.
Estimates of incidence for program planning are based on a combination of
diagnostic spectrum and age range, epidemiological research, and experience
in the field. There is some evidence that urban areas may have a slightly higher
level of incidence than less urban areas.28,29 Epidemiological research studies
offer a range of incidence figures, so ultimately there is some level of arbitrariness
in initial estimates. The number of new people entering the program will also be
impacted by the fact that even in the best of ascertainment systems there is some
inaccuracy, and the programs will intentionally accept individuals at earlier stages
where there is less diagnostic certainty.

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.

Steps and decision points in Starting an early psychosis program 22


Information Guide

Step 11. Identify expected staffing levels and positions.


There is broad consensus that the best approach to care for individuals who are in the
early stages of psychosis is through a closely coordinated team with multiple disciplines.
Given the level of acuity and the multi-dimensional needs of individuals who experience
psychosis, early psychosis teams often adopt intensity and coordination standards similar
to Assertive Community Treatment, recommending that programs plan for a level of
intensity of about one full-time equivalent team member for every ten
program participants.20

a few consIderaTIons when consTrUcTIng posITIons:

• 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.

• While each team member brings special knowledge,


functions are sometimes shared across positions
depending on the specific needs of the participant.

• Although the team as a whole may try to maintain a 1:10


ratio, individual positions typically serve more than that
ratio. Planners may choose to set a limit to the caseload
for specific positions, or standards about access,
minimum frequency and duration of contact.

• If some positions are not mobile and others are, the


individuals in mobile positions often engage more rapidly
with participants. More strongly engaged team members
may need to facilitate the connection to others who have
not established that engagement. Enabling all roles to
do outreach and cross-training in core skills increases the overall level of engagement
and team effectiveness.

• 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.

• Attention to cross-training and backup is important in order to maintain consistent


performance during holidays and when there is staff turnover.

Steps and decision points in Starting an early psychosis program 23


Information Guide

The exacT roles among clInIcIans vary across Teams, bUT cover The
followIng fUncTIons:

Clinical supervision. Consistent, proactive and frequent clinical supervision is extremely


important for supporting skill development, problem solving, and modifying and buffering
competing demands and expectations. It is common for early psychosis teams to have
multiple supervisors (medical and supported employment are often separate units). Where
this occurs, it will be important to ensure that all supervisors have basic training and
agreement about what practices are expected, and that they meet regularly to address any
conflicts or concerns.

Community education. The frequency and persistence of community education is one


of the most important determinants of whether individuals are developed at an early stage
and whether the program receives appropriate referrals. One person should have primary
responsibility to community education planning and coordination. All individuals providing
community education should be trained in effective messaging.

Community consultation, screening, intake and engagement. For every person


accepted into the program, a significant number (as high as half to two-thirds) of referrals
are not a good fit for the program. To maintain the program’s positive reputation to ensure
consistent high quality, referents and the individuals being referred will need meaningful
guidance in finding appropriate care. In addition, many people who have psychosis will not
recognize they are ill and will require effort to engage. Thus, a member of the team who is
skilled in differential diagnosis and engagement needs to set aside significant time for this
set of 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.

Steps and decision points in Starting an early psychosis program 24


Information Guide

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.

Steps and decision points in Starting an early psychosis program 25


Information Guide

Supported employment and education. 31,32 Supported employment and education is a


near-universal expectation within early psychosis programs. Without a strong supported
employment and education focus, there is significant iatrogenic potential for programs
to facilitate young people’s exit from a career path and entry into long-term disability
as a primary focus. The Individual Placement and Support (IPS) model is the most
comprehensively researched approach and is currently widely viewed as offering the
most effective evidence-based approach.31 However, IPS was developed with individuals
who were older and already on disability benefits, so the approach has to be adapted
to transition age young adults who are entering a career path. Specific areas which are
central for early psychosis teams include career planning, supporting participants in
completing or returning to school, and supporting unpaid career development activities.
Some early psychosis programs incorporate a hybrid supported employment and
education role, whereas others have a wholly distinct supported employment role and
delegate supported education to other team members. Although many individuals with
psychosis do extremely well in school, the evidence base for supported education is much
less extensive than for supported employment.

Occupational therapy. Some national and international early psychosis programs


utilize occupational therapy as a core element of their programs. As the understanding
of schizophrenia and psychosis evolves, occupational therapy skill sets are becoming
particularly relevant. They play key roles in identifying and ameliorating underlying
cognitive and sensory issues which have significant impacts on functioning and often
go unrecognized. In addition, they are skilled in helping to improve people’s ability to
function by breaking down tasks, identifying accommodations, and helping to build
routines. Occupational therapists are often particularly adept at group development and
implementation, as well as brain-body strategies for enhancing learning, activation and
stress management. Occupational therapists also sometimes work with occupational
therapy assistants, who require significantly less schooling and are able to carry out many
occupational-therapy related activities at a lesser cost.

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.

Housing/independent living. A portion of individuals referred to early psychosis programs


are homeless or at risk of becoming homeless. Depending on their stage of individuation,
most participants are actively working toward higher levels of independent living in the
community. Teams should be prepared to help with housing and independent living skills
development, and to link with local community resources.

Steps and decision points in Starting an early psychosis program 26


Information Guide

Step 12. determine how long the program will be.


Early psychosis intervention programs are almost always viewed as transitional,
and where they are time-limited they should always incorporate a systematic and
gradual transition into longer-term supports. Many, if not most, individuals in early
psychosis programs will require ongoing support to maintain the gains that they
make during the program.

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.

One of the challenges in a longer program is the difficulty of


maintaining a transitional focus. One method of providing
longer-term supports while also maintaining a strong transitional
focus and access is to create a series of demarcations of
progress within the program which will allow acknowledgement
of the accomplishments of participants and change the nature of
the relationship between the individual, family and the program
gradually as they transition. For example, some programs
provide long-term access to certain services such as multi-family
psychoeducation, vocational support, and advocacy and problem
solving. Graduates of early psychosis programs become important
resources as they act as natural role models, share feedback and
knowledge gained from their lived experience, take more of a role
in leadership and advocacy, and provide better understanding
about the long-term needs of program participants.

Steps and decision points in Starting an early psychosis program 27


Information Guide

Step 13. develop caseload projections.


The actual level of staffing will be determined by projected incidence in
combination with duration, assumptions about how many individuals will be
retained over time, and maximum caseload requirements. A spreadsheet
format such as the one developed by RAISE Connections may be helpful
(http://practiceinnovations.org/OnTrackUSA/tabid/253/Default.aspx). It is
important to note the underlying assumptions in order be able to track their
accuracy as the program develops. A few areas requiring assumptions:

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.

Steps and decision points in Starting an early psychosis program 28


Information Guide

Step 14. develop a projected team budget.


The simplest short-term method for developing a budget is to identify projected
staff costs and projected revenue. This step cannot be entirely completed without
clarity about where the program will be housed, since there are significant
variations in salary levels.

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.

It may be helpful to establish a sustainability committee early on including key government


and funding representatives who can review which elements of the program are currently
funded and which are requiring subsidization. By enlisting funders in problem solving early
on they may be able to identify opportunities such as hospital diversion, work force or other
funds which can help provide diversified funding for local and statewide efforts. Engaging
funders in the sustainability dialogue also helps to build program champions who may
ultimately support solutions such as legislative appropriations.

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.

Steps and decision points in Starting an early psychosis program 29


Information Guide

Step 15. establish a strong internal management/


support infrastructure at the agency level.
Once the provider agency is selected, it will be important to repeat or review the
orientation and initial planning process with senior management staff, including
agency director, clinical supervisors, and key operational staff together to review
implications of the new program for functions such as human resources, quality
improvement, and finance. Ongoing communication and problem solving with
funders and regulators should be established from the beginning, and if there
are multiple providers within the state, it is optimal to create a forum for shared
decision making and problem solving.

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.

WHere iN tHe OrgANizAtiONAL CHArt WiLL tHe eArLy PSyCHOSiS


PrOgrAm StAFF be PLACed?

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:

• Strong clinical supervision is a key element of early psychosis intervention. Clinical


supervision focuses both on supporting clinical development and decision making, as
well as advocating and linking within the larger system.

• 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.

Steps and decision points in Starting an early psychosis program 30


Information Guide

• 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.

• In addition, it is important to attend to the culture surrounding the program. Early


psychosis teams thrive best in an environment which has lower turnover, a strong and
consistent orientation toward strengths, person-centered planning and outreach, and a
strong support for flexibility and creativity.

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.

program name and vIsIbIlITy.

• 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.

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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.

• Highly skilled clinicians with experience in psychosis are preferable, although


mindset may be more important.

• It is highly recommended that hiring committees routinely involve individuals with


lived experience and family members throughout the process.

• Productivity standards. Early psychosis professionals often fall short of agency


productivity standards because they are involved in team-related activities, outreach,
community education, coordination and training. Agencies often either reduce the
productivity standard for members of the early psychosis team, or count additional
activities toward the standard.

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.

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• 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.

• Assessment. Early psychosis assessment is relatively more comprehensive than


some agency assessments, and so forms may need to be modified. Examples of
this include: comprehensive strengths assessment, areas of risk assessment going
beyond criteria for imminent threat, more detailed information about premorbid
functioning, onset process and explanatory models. The program may also elect to
add clinical assessment tools which need to be integrated into charts.

• 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.

• Crisis plans, relapse plans and/or advanced directives. Early psychosis


programs typically develop proactive plans which identify early and late signs and
a plan of action which has been agreed to by to the young person and family. If the
person presents through the crisis system it is important to have access to these
documents.

• 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:

• Orientation of internal stakeholders. How will internal stakeholders be oriented to


the program and how will they facilitate referrals to the program? How will new staff be
oriented to the program? Specific stakeholder groups to consider include reception,
intake, adult and children’s crisis team(s), outpatient mental health and substance abuse.

Steps and decision points in Starting an early psychosis program 33


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• Community education. Do others in the agency or the community have pre-existing


community education efforts which the team could connect to? Are there relationships
with hospitals, high schools, colleges, public officials or media?

• 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?

• Sustainability planning and billing. Proactive billing and revenue maximization


strategies are important for the sustainability of these intensive programs. Some specific
strategies related to financing and billing functions which may be useful include:

• 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.);

• Pursuing private insurance panel participation and staff professional


licensure;

• Negotiating alternative payment methods with funders such as case rates


and service bundle arrangements; and

• Pursuing alternative financing (e.g., vocational, crisis diversion, housing


related, private foundations, legislative appropriations, etc.)

• Interpretation, translation, cultural consultations. Programs will interact with


a variety of cultural groups, and will need rapid access to trained interpreters and
translation services, as well as cultural consultation.

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Step 16. Identify clinical strategies and standards.


It is useful to replicate an existing model which offers a foundational template. Existing
models are continuing to evolve and have particular strengths as well as less developed
areas. Programs should determine how each of the following elements will be provided,
trained for and monitored. Since all of these practices have relevance beyond early
psychosis intervention, integration of these practices at a broader scale will facilitate the
success of the early psychosis program. The more consistent early psychosis practices
are with broader practices in the agency and broader system, the less the program will
be working at odds with its environment, and the more graduates of the early psychosis
program will experience continuity of support.

Outreach and engagement. Programs need to integrate proactive, flexible, strengths-


oriented engagement methods in order to make the program relevant and accessible.

comprehensIve rIsk assessmenT and safeTy plannIng.

Individuals experiencing psychosis, or even in the stages leading up to psychosis,


are at significantly greater risk of suicide, as well as accidental harm.36 From the first
conversation, clinicians will need to be assessing for potential risk to the individual or,
although far less common, to others. This assessment goes significantly beyond risk
assessments traditionally done in mental health centers where the focus is often assessing
for involuntary commitment criteria. Specific areas which should be included in the
assessment are:

• History of self-harm or aggression;


• Suicide and aggression toward others;
• Content of delusions and how the person is thinking about responding;
• Conflict in the environment;
• Impulsivity and access to car keys;
• Access to weapons, medications that are lethal if taken in excess, including
over-the-counter medications, or other potentially lethal means; and

• Self-neglect and potential for victimization.


Strengths assessment. A comprehensive strengths assessment and ongoing focus
on strengths discovery is a core element of all effective early psychosis programs.
Organizations often have a small “strengths” section in their assessment, but in early
psychosis programs, comprehensive strengths addressing multiple life domains and social
relationships form the scaffolding for the interventions. It is through these strengths that
individuals are able to construct meaning, purpose, daily structure, social supports and
career paths. See the University of Kansas website for a good resource:
http://mentalhealth.socwel.ku.edu/principles-strengths.

Steps and decision points in Starting an early psychosis program 35


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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.

Comprehensive clinical assessment. The elements of clinical assessment incorporate


standard mental health assessment, but also delve more intensively into areas such as the
progression of symptoms over time, premorbid functioning, family impact, and explanatory
models.

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.

Family psychoeducation. Family psychoeducation has a


strong evidence base and effective family psychoeducation
can have as much impact on outcomes as any other mode of
treatment.37 It is optimal to offer family psychoeducation in both
group and individual family settings. Core elements include
joining (spending time engaging with, listening to and providing
initial education to family members), providing core knowledge
about the illness, symptoms, gradual onset and relationship
to relapse planning, impact on family members (changed
expectations, conflict, grief, etc.), needed skills of communication
with someone experiencing psychosis, healthy limit setting, and
other guidelines related to family support. Ongoing sessions
typically include a focus on social interaction, check-in about
what is working and challenges, structured problem solving
and follow-up. To implement family psychoeducation effectively,
clinicians should receive training and ongoing consultation.

Steps and decision points in Starting an early psychosis program 36


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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.

Cognitive behavioral therapy. Cognitive behavioral therapy (CBT) for psychosis,


depression and anxiety have a well-established evidence base.38,39 Basic CBT skills can
be useful for all team members, and a more extensive skill set within the team is desirable,
with at least one team member trained to competency in formulation-based CBT for
psychosis.

Substance use disorder treatment. A substantial subgroup of individuals in the early


stages of psychosis will use alcohol or other drugs, and early psychosis teams should
be competent in assessing the impact of this use and whether it is at a level of misuse or
abuse, and intervening. Generally harm reduction strategies and integration of motivational
interviewing are the standard approaches within early psychosis teams, where the level
of substance abuse is not advanced enough to need more intensive care (e.g., detox or
residential treatment).33

Supported employment. The best-researched model of supported employment for this


population is Individual Placement and Support (IPS), which focuses on rapid access to
support for job search and retention of competitive employment.31 Employment specialists
focus heavily on employer relationships and employment-related activities. Within an early
psychosis setting, supported employment specialists have to be able to work with young
people who often have no work history and who often are as focused on educational
progression as on work. Young people may also be ambivalent or lack confidence in their
ability to work, and the supported employment specialist may play the role of introducing
them to the workforce for the first time. In addition to employment experience in the
short term, early psychosis programs should consider how long-term career exploration
and planning can be facilitated, and how early psychosis services can link to long-term
employment and educational supports after individuals have completed the program.

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.

Steps and decision points in Starting an early psychosis program 37


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trauma reduction. Differential diagnosis for post-traumatic stress disorder is an important


part of the diagnostic process, as the treatment for PTSD may differ substantially from the
recommended treatment for schizophrenia. Also, the experience of psychosis itself, along
with the experience of law enforcement intervention, involuntary commitment and other
frightening and dangerous experiences may create trauma.40 Intentional debriefing and
trauma-informed practices are an important part of treatment.

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

Psychiatric care and prescribing. Care by a psychiatrist or psychiatric nurse practitioner


is a critical part of early psychosis intervention. A formal or informal algorithm which
encourages low dosing with gradual tapering, careful attention to and avoidance of side
effects, and avoidance of polypharmacy are all central components of early psychosis
services. In addition, there are other important standards for medical services, including
rapid access to psychiatry at entry into the program, completion of early and follow-up
physical examinations and lab testing, ongoing contact (even if the person chooses not
to take medicine), and frequent contact (weekly in the beginning, and most programs
recommend at least monthly throughout the course of treatment, with a minimum of half
hour visits).

relapse prevention. Another core element of early psychosis intervention is the


development and ongoing refinement of a relapse prevention plan shared by the individual,
family and informal supporters, as well as professional team members.

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.

Occupational therapy. Occupational therapists can provide insight and practical


assistance in areas which have a significant impact on functioning but which usually go
unaddressed, particularly in the areas of cognitive challenges, sensory preferences, and
breaking down functional tasks in order to develop accommodation strategies where
individuals are getting stuck.

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.

Steps and decision points in Starting an early psychosis program 38


Information Guide

Step 17. Identify resources and methods to establish


staff core competencies.
Given the range of competencies needed by early psychosis teams, staff learning
is an important function for all early psychosis programs. Early psychosis team
members will need training and ongoing consultation from experts, and an ongoing
process of training needs to be set in place as new staff come on board. Periodic
consultation with managers is also important in order to address system issues
and gaps as they are identified. Program planners need to address:

• Which practices will the agency integrate? What expertise is


needed and available to help establish these practices?

• How will existing organizational processes and structures be


modified to facilitate adaptation of these practices?

• What training, consultation and clinical practice review will be


required? How will staff receive training? How will training be
repeated over time for new staff?

• How will ongoing consultation be provided?


• Can existing state resources or staff be developed to provide
ongoing training and consultation? How can that capacity be
developed?

• How will core staff competencies not included in minimum


training be developed and recognized?

Steps and decision points in Starting an early psychosis program 39


Information Guide

Step 18. develop and implement a community


education strategy.
The success of early psychosis intervention is greatly determined by early
symptom identification and referrals. Social marketing aims to encourage
identification and referral, while fostering a sense of the likely positive impact of
such a referral and encouraging community partners to play a supportive role.

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.

Steps and decision points in Starting an early psychosis program 40


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Step 19. establish an outcome measurement process.


In order to document the impact and ensure program improvement over time, it
is important to track, review and respond to outcomes and implementation fidelity
(see step 20). In designing and implementing data collection and evaluation,
individuals who are skilled in survey design, databases and statistical analysis will
be needed. Early psychosis programs must answer the following questions:

• 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.

Steps and decision points in Starting an early psychosis program 41


Information Guide

Step 20. establish evaluation and fidelity


measurement processes.
Fidelity review processes help to evaluate whether the program is operating in
the way the program is intended and can provide important feedback about areas
of improvement. Generally, fidelity review occurs periodically and in an ongoing
manner. There is not current consensus internationally about a single fidelity tool,
and development of a fidelity process can be intensive. A recent review by Donald
Addington, et al went through the process of identifying areas of expert agreement
and developing a simple fidelity tool with the hope of creating a framework for
early psychosis programs internationally. The document identifies core areas
of measurement and a measurement scale, but does not identify a method for
weighting how well programs score or identifying which items are essential. Other
programs have developed fidelity tools, such as On Track New York and Oregon
EASA. A few considerations in adopting and developing a fidelity tool:

• 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?

Steps and decision points in Starting an early psychosis program 42


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• 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.

Please feel free to offer your feedback/input by sending an e-mail to


[email protected] .

Steps and decision points in Starting an early psychosis program 43


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