Professional Documents
Culture Documents
Yo u t h wi t h Ps y c h o s i s
Samantha Hines, BA, Drew C. Coman, PhD*
KEYWORDS
Psychosis Schizophrenia Education Special education School-based
Youth
KEY POINTS
A major recovery milestone for most youth affected by psychosis is the reintegration back
into a school setting.
Gold standard practice for psychosis comprises supportive educational services that are
focused on successful academic reintegration and achievement.
Providers can guide educational institutions via comprehensive assessment procedures
in the delineation of key educational programming that can help youth reintegrate back
into school and achieve academic success.
INTRODUCTION
A major recovery milestone for most youth affected by psychosis is the reintegration
back into a school setting. Although this is not always an easy achievement, and it is
a period commonly fraught with many uncertainties for all parties involved, school
reintegration is an important and attainable treatment goal. Indeed, this time point
is often a barometer of sorts for the individuals affected and their families. It assists
them in calibrating what the next appropriate steps are in getting their lives back. It
is also a critical juncture because if it goes well, it is a beacon of hope that highlights
that experiencing psychosis does not have to dictate someone’s future or put a ceiling
on their long-term goals, and usually elicits substantial momentum in the recovery pro-
cess. On the contrary, if the reintegration goes unfavorably, the resulting setbacks are
counterproductive to recovery. Given the bearing that these two courses can have,
it is not surprising that the gold standard practice in first-episode psychosis (FEP) clin-
ical care comprises comprehensive supportive educational services that are explicitly
focused on one critical functional outcome for youth impacted by psychosis: success-
ful academic reintegration and achievement.
This specialized wraparound clinical practice for individuals experiencing FEP,
which is commonly referred to as coordinated specialty care (CSC), is vital to recovery.
Educational settings are on the front lines of the identification process. More than 3 out
of 100 individuals experience psychosis in their lifetime making it more common than
diabetes. In addition, the onset typically occurs during the early to mid-20s for men
and in the late 20s for women with childhood onset of psychosis (usually after age 7,
and before age 13) existing at lower base rates.3–5 Therefore, it is highly probable
that most schools will interface with the management of this condition at some point.
Having training on early detection is important for educational settings because they
can play an essential role in treatment outcomes. Specifically, schools can greatly
reduce the duration of untreated symptoms, termed the duration of untreated psycho-
sis. Lengthier duration of untreated psychosis has been associated with increased
severity of symptoms, decreased quality of life, and overall more unfavorable functional
outcomes.6–9 It is therefore important for personnel within educational institutions to be
knowledgeable in the detection of early warning signs and symptoms of psychosis.
Broadly, psychotic symptoms may comprise a permutation of hallucinations, delu-
sions, atypical behaviors, and a decline in someone’s baseline level of functioning.
Table 1 provides some of the earlier indications and signs of psychosis for schools to
be vigilant of, although this is not an exhaustive list, because psychosis presents differ-
ently for everyone. It is also important to note that the behaviors listed are not diagnostic
and may be indications of a myriad of other experiences (eg, depression, substance
use) or events (eg, relational issues) that are occurring for a young person.
A person’s educational level exerts the strongest influence on their health.10 It has
been found that young people with diagnoses of serious mental health conditions
(SMHC), such as psychosis, have compromised educational attainment. One national
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School-Based Approaches in Youth with Psychosis 243
Table 1
Signs and indications of psychosis within educational contexts
survey found that by age 19, for those in special education because of an SMHC, the
high school completion rate is only 56%. Correspondingly, it found that few students
with SMHC, that were diagnosed by high school age, go on to attend postsecondary
education programs; those who do continue do not complete such programs, studies
suggest.11 In another study by Goulding and colleagues12 it was found that in a sample
of adolescents hospitalized for FEP 44% had dropped out of high school, much higher
than the average reported high school dropout rates of 12.8% to 17.8%. Youth expe-
riencing FEP are also more likely to need to take one or multiple leaves of absence
from school to focus on treatment. This can prolong or derail the process of educa-
tional attainment for many, especially during postsecondary education.
Cognitive deficits are a core feature of psychotic disorders, and they are present in
the prodromal period before the onset of psychosis and are stable throughout the
course of the illness in most individuals.13 These deficits are associated with functional
outcomes and are thought to be potential functional prognostic markers, especially for
longer-term outcomes. Onset of psychosis can also cause substantial distress for an
adolescent by disrupting fulfilment of their educational and vocational goals, social
relationships, and identity formation.14 For youth experiencing psychosis, their devel-
opmental stage may play a mediating role in the relationship between functional out-
comes and cognitive deficits.15 Additionally, evidence suggests that cognitive deficits
in psychotic disorders are apparent before the FEP. The prodromal period preceding
FEP 3 to 4 years has been associated with cognitive deficits in the domains of general
intelligence, verbal fluency, verbal and visual memory, and working memory.16
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244 Hines & Coman
When individuals experience FEP, their cognitive deficits become more established
and pervasive. The severity of impairment varies among the multiple domains.17 The do-
mains that are often affected in the FEP are: speed of processing, visual memory, verbal
memory, problem solving and reasoning, social cognition, attention and vigilance, and
working memory.18 The most marked deficits are seen in the domains of information
processing speed and verbal and visual memory.17 These domains are assessed by
the administration of several neuropsychological measures (described later), although
the Measurement and Treatment Research to Improve Cognition in Schizophrenia
Consensus Cognitive Battery is one of the most validated and widely used tools.19,20
Fortunately, federal laws, such as the Americans with Disabilities Act, Section 504 of the
Rehabilitation Act of 1973 (Section 504), and numerous state laws cover students with
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School-Based Approaches in Youth with Psychosis 245
psychiatric disabilities, such as youth with FEP. The US Department of Education en-
forces Section 504 in programs and activities that receive funds from the Department
of Education. Recipients of these funds include public school districts, institutions of
higher education, and other state and local education agencies.21 Under Section 504,
this is free and appropriate public education. This ensures that special education and
related services for children ages 3 to 21 must be provided at public expense for those
eligible. The Individuals with Disabilities Education Act (IDEA) was first passed by
Congress in 1990. This act defined the disabilities eligible for special services in public
schools and outlined the process by which special education services are provided for
students with disabilities. Under this law, each eligible student (from age 3 through
high school) is provided an individualized education program (IEP) that is tailored to their
unique educational needs. IDEA guarantees all children with disabilities free and appro-
priate public education. Youth with FEP fall under the category of “emotional distur-
bance” in the IDEA classified disabilities, which is defined as “an inability to learn, build
or maintain satisfactory interpersonal relationships, inappropriate behaviors or feelings,
pervasive mood of unhappiness or depression, over a longer period of marked time.”22
Both IEPs and Section 504 plans support students with disabilities, but are different
entities. They are covered by two separate laws: IEPs are covered by special education
law (IDEA), whereas Section 504 plans fall under federal disability law. Almost all stu-
dents that are covered by IDEA are also covered by Section 504, but not vice versa.23
For youth with FEP and no comorbid learning disorders, a Section 504 plan may be suit-
able for their learning needs. Section 504 plans are formal plans that schools develop to
give students with disabilities support and remove barriers from their consumption of
the curriculum. Under Section 504, a person with a disability is defined as: a person
who is regarded to, has a record of such, or has a mental or physical disability that sub-
stantially limits one or more of the person’s major life activities (eg, self-care, performing
manual tasks, learning, or working). Under that definition, most youth with FEP meet the
criteria for a disability. Even if a student is effectively treated with medication, this is not a
mitigating measure and should not make a student ineligible because of the Americans
with Disabilities Act (ADA) 2008 amendment.23
Section 504 plans and IEPs do not transfer over from high school to college. They
can, however, inform the accommodations students can receive in college. Colleges
have to provide accommodations to students under Section 504. The process of
obtaining these accommodations and how they are implemented differ from grade
school. Accommodations can be set up before the start of the college semester
through the office of disability or accessibility services. Self-advocacy tends to
be stressed by colleges for transition-age youth throughout this process. It typically
involves the student making an appointment with a disabilities counselor to discuss
setting up accommodations. Every college is different in their requirement for docu-
mentation: some require a confirmation of diagnosis, others ask for specific documen-
tation with questions for providers and even students, and sometimes a copy of
previous IEPs, Section 504 plans, or neuropsychological testing is requested. How
the accommodations are delivered to the professors differs from college to college.
It is usually up to the student to decide what they would like to disclose to their pro-
fessors and they must be sure to continue working with disability services each
year to continue to receive their accommodations.
With the data in hand post an evaluation, the next step is for the student, their family,
and clinical team to design a blueprint for successful reintegration and subsequent
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246 Hines & Coman
Fig. 1. Critical areas to be evaluated for reintegration and supporting academic success.
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School-Based Approaches in Youth with Psychosis 247
Treaters and care teams can play an important role as advocates for educational ser-
vices for their patients. FEP CSC programs can assist patients and families with
navigating educational obstacles by having a supported education and employment
(SEE) specialist on the team. A SEE specialist helps people with a psychiatric disorder
achieve their vocational and educational goals by working with clients to identify their
personal preferences regarding educational goals and then provides the necessary
supports to help the person achieve those goals as defined in the NAVIGATE SEE
specialist manual.27 Some components of SEE services can include, although are
not limited to, school searching, course selection, problem solving around symptoms
and school impact, corresponding with the school, assisting with services, and col-
lecting proper documentation from the treatment team. It is important that there is a
respect for patient preferences and a positive collaborative relationship between the
SEE specialist and patient. One recent study by Humensky and colleagues28 found
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248 Hines & Coman
Box 1
General principles to consider (multifamily group treatment family guidelines)
Go slow
Schools are not going anywhere—individuals should allow themselves appropriate time
for recovery, focus on their well-being, and take their time reintegrating. Recovery takes
longer than most want.
Consider taking an incremental approach: start taking an online course, then a course at a
local college from home, then two courses.
Keep it cool
Avoid taking on too much at once.
Consider taking a longer leave of absence from school.
Pick-up on early warning signs
Develop an explicit relapse prevention plan with clinicians and family to assist in
identifying early warning signs and triggers.
Lower expectations, temporarily
Progress is progress. Celebrate small steps and achievement of goals. Do not put pressures
to make leaps in recovery.
Give each other space
Caregivers should allow for space, extra time for decision-making, and avoid hovering.
Observe limits
Keep important, established family rules intact. Observe these rules.
Ignore what you cannot change
Students may have academic desires discrepant from the family or treatment team (eg,
desires to go back into school taking all honors/AP courses). This is part of the
calibration process.
Do not ruminate over disagreements around the school plan.
Keep it simple
Communicate about school desires and plans. When communicating, do this in a clear,
calm, and positive manner.
Carry on business as usual
Consider reaching out to friends at school, re-establish family routines and get-togethers,
schedule social events. This will all help with the calibration process.
Consider using medications and avoiding substances or alcohol
Continue to support one’s well-being with medication, and abstinence or reductions in
substances can assist with the success of the reintegration process.
Solve problems step by step
Focus on one thing at a time and make changes in increments.
Adaped from McFarlane WR. Multifamily Groups in the Treatment of Severe Psychiatric Disor-
ders. New York & London: Guilford Press; 2002; with permission.
that participants in FEP programs that emphasized school had high rates of educa-
tional participation, engaging early, often simultaneously in school and work. Similar
findings were reflected in the study by Rosenheck and colleagues.29 This study exam-
ined the implementation of the NAVIGATE model in CSC FEP programs and found that
individuals recovering from FEP received far more SEE services and showed signifi-
cantly greater increases in school participation over 2-years compared with those
who received standard community care. Patients who began school or work tended
to do so within the first year of treatment. There are ample data to support that, despite
the common belief that people with FEP cannot withstand the pressures of competi-
tive work or school as they are recovering, with appropriate supports success in these
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Table 2
Direct services, accommodations, and key components of therapeutic placements for primary and secondary school
Accommodations and Additional Supports Direct Services Key Components of a Therapeutic Placement
Extended time on all tasks, tests, and standardized testing Counseling services Full-day, year-round, placement that is substantially
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Access to school nurse for medication administration 1:1 or small group academic tutoring separate and therapeutic
Access to “quiet” or “cool down” spaces Social skills training A small student-to-teacher ratio
Have a “point person” to assist in identifying symptoms or Executive functioning tutoring Similar peers
someone to offer support Assistive technology (eg, Frequent access to 1:1 assistance from a certified
Frequent 1:1 access to special education personnel within speech-to-text devices) special education teacher, highly experienced
the classroom Extended school year services clinical/mental health staff, and an in-house
Planner support, and guidance with ensuring student has Occupational therapy consulting psychiatric care team
all the necessary materials for a lesson Speech and language A high level of structure, with a predictable
Advanced notice for larger assignments Self-help/life skills training routine that entails frequent monitoring and
Certified Behavior Analyst), or other providers or support access to curriculum on interventions across the day
Provide a slower pace to lessons leave of absence Supports and interventions rooted in
Provide a written checklist of steps for a task or a template Vocational training evidenced-based treatment, such as
Graphic organizers Transition planning into college or cognitive-behavioral therapy for psychosis
Use of headphones workforce Coping tools should be taught and reinforced
Use of fidget objects 1:1 aide across the day
The use of a “standing” desk
Books (and textbooks) on tape
Breaks across tasks and provide outlets for energy and
physical activity on a needed basis
Modified workloads, or formats to testing (eg, eligibility to
oral examinations)
Flexible deadlines for assignments
Eligibility for test make-ups
Advanced warnings for changes to routine
Breaking assignments into smaller tasks; taking step-by-
step approaches
Presenting information in a multisensory format
Preferential seating
249
250 Hines & Coman
Table 3
Direct services and accommodations for college settings
areas is possible and the support from a SEE specialist and a CSC team helps in-
crease the likelihood.27,30
SUMMARY
One of the most important recovery milestones for youth affected by psychosis is the
reintegration back into a school setting. This is, for many reasons, not an easy
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School-Based Approaches in Youth with Psychosis 251
achievement for the affected individual and their family, but it is nonetheless an impor-
tant and attainable treatment goal for most. Obtaining neuropsychological and educa-
tional testing along with the acquisition of specialized educational programming,
perhaps under the care of a supported educational specialist, is highly supportive
in the functional goal of academic reintegration and success. Therefore, efforts should
continue to be made to further establish educational support services, with a focus on
successful academic reintegration and achievement, as not only the gold standard
practice, but more simply the sole standard practice in first-episode clinical care.
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