How are first episode programs designed?

NAVIGATE NAVIGATE is a comprehensive program designed to provide early and effective treatment to individuals who have experienced a first episode of psychosis.  It was developed with support from NIMH and has been implemented at 20 sites throughout the U.S. and one in Canada, including urban, suburban, and rural settings, and has provided treatment to people from diverse ethnic and cultural backgrounds.  NAVIGATE is one option for implementing Coordinated Specialty Care (CSC) for early psychosis. The NAVIGATE website provides treatment manuals and other web-based resources as well as information on working with the NAVIGATE team on training and consultation (see below).

• Team Guide
• Program Director Manual
• Psychopharmacology Manual
• Supported Employment/Education Manual
• Family Education Manual
• Team Manual

OnTrackNY OnTrackNY is an innovative treatment program for adolescents and young adults who have had unusual thoughts and behaviors or who have started hearing or seeing things that others don’t. OnTrackNY helps people achieve their goals for school, work, and relationships. The OnTrack website provides treatment manuals and resources for young adults, families, and clinicians (see below). Through OnTrackUSA, they also help with consultation and implementation of new CSC teams.

• Psychopharmacology Manual
• Recovery Coach Manual
• Supported Employment/Education Manual
• Team Leader Manual
• Team Manual
• Peer Support Specialist Manual

National Association of State Mental Health Program Directors (NASMHPD). The NASMHPD provides descriptions and links to various clinician manuals, programmatic descriptions and guidelines, and other tools developed to support quality care for persons in early stages of psychosis.

National Alliance on Mental Illness (NAMI). NAMI is the United States’ largest grassroots non-profit mental health organization. Their website provides information for young adults on families on early psychosis signs, treatment, and recovery. They also offer programs that provide support to individuals and families as they seek services, make treatment decisions, and manage their mental health recovery. 

SMI Adviser. SMI Adviser is funded by the Substance Abuse and Mental Health Services Administration (SAMHSA) and administered by the American Psychiatric Association (APA). SMI Adviser provides education, data, and consultation to providers.

The following databases provide information for coordinated specialty clinics throughout the United States.

• SAMHSA Early SMI Treatment Locator. Hosted by the Substance Abuse and Mental Health Services Administration (SAMHSA).
• National Early Psychosis Directory. Hosted by the Early Assessment and Support Alliance (EASA).
• The Prodrome and Early Psychosis Program Network. Hosted by Stanford University's Psychosis-Risk and Early Psychosis Program Network (PEPPNET).

Resources on Prescribing in First-Episode Psychosis

• The 2009 Schizophrenia PORT Psychopharmacological Treatment Recommendations and Summary Statements. This article describes a literature review and update of psychopharmacological treatment recommendations for the treatment of schizophrenia.
• Medications for First-Episode Psychosis: Making a Good Start. This article provides an introduction to a special issue of Psychiatric Services dedicated to research on prescribing for patients with first episode psychosis.
• Optimizing Medication Management for Persons with First Episode Psychosis. This brochure from the National Association of State Mental Health Program Directors provides a shared decision-making tool that young people can use in collaboration with their psychiatrist or other professionals that prescribe medication. It also provides a chart that lists the side effects across a range of medications and a first-person account of some key lessons learned when reducing psychotropic medication.
• OnTrackUSA – Center for Practice Innovations. OnTrackUSA provides first-person video accounts of experiences using medication and coping with side effects. It also provides a worksheet for consumers and families to use in making decisions about using long acting injectable antipsychotic medications.

While the NAVIGATE & OnTrack manuals in EIP videos outline primary evidence-based treatment programs for those experiencing a first episode, the following may help to supplement and guide these interventions. 

Resources on Stigma Reduction

Stigma is a social process that involves labeling individuals and attaching negative stereotypes. This process can then result in discrimination toward people living with mental illness (e.g., at work, at school). More information on the process of stigma can be found in this short article (“Understanding the impact of stigma on people with mental illness”, Corrigan, 2002).

There are many organizations in the US dedicated to stigma reduction, including but not limited to:

• On Our Own Maryland, Inc.
• The National Alliance on Mental Illness (NAMI)
• Bring Change to Mind

Internalized Stigma (also known as Self-Stigma)

• Internalized stigma is the process of self-identifying with and internalizing negative stereotypes about mental health. Internalized stigma is related to a host of negative outcomes. 
  • How to assess internalized stigma 
    • Internalized Stigma of Mental Illness Scale (ISMI) Measure
    • Internalized Stigma of Mental Illness Scale (ISMI) Research
  • How to become trained on internalized stigma interventions: 
    • “Honest, Open, and Proud” (HOP)
      • Dr. Patrick Corrigan (corrigan@iit.edu)
    • “Ending Self-Stigma” (ESS)
      • Dr. Alicia Lucksted (aluckste@som.umaryland.edu)
    • “Narrative Enhancement and Cognitive Therapy for Internalized Stigma among Persons with Severe Mental Illness” (NECT)
      • Dr. Phil Yanos (pyanos@jjay.cuny.edu)

Resources on Shared-Decision Making

Mental health professionals and young adults often differ in treatment goals and decisions. Shared Decision Making (SDM) addresses these disagreements, utilizing tools like decision aids and negotiation to enhance collaboration. SDM aims to increase knowledge, young adults' engagement in treatment, and understanding of their values, fostering a stronger therapeutic alliance. Challenging traditional assumptions, SDM asserts that collaborative decisions between professionals and young adults yield the best treatment outcomes. Numerous studies highlight SDM's positive impact on decision quality, satisfaction, and treatment alliance. In general medical care, SDM is linked to better health knowledge, adherence, outcomes, and satisfaction. Evidence in mental health, especially for individuals with schizophrenia, supports the feasibility and effectiveness of SDM, as indicated by controlled trials.

• Dartmouth-Hitchcock Center for Shared Decision Making. The Center for Shared Decision Making opened in 1999 as the first center in the U.S. dedicated to encouraging doctors and patients to make decisions together. Its services include provision of patient decision aids, decision support counseling, and facilitation of advance care planning discussions. Their Patient Support Corps volunteers help patients think about and organize their questions and concerns in preparation for an appointment.
• Agency for Healthcare Research and Quality – SHARE Approach to Shared Decision Making. AHRQ’s SHARE Approach is a five-step process for shared decision-making that includes exploring and comparing the benefits, harms, and risks of each option through meaningful dialogue about what matters most to the patient.
• SAMHSA-HRSA Center for Integrated Health Solutions Share Decision Making Webpage. This site provides resources for learning and using shared decision making in practice.

Resources on the Recovery Model

Recovery is a process that occurs over time in a non-linear fashion. This is reflected in a definition developed by Substance Abuse Mental Health Services Administration (SAMHSA): Mental health recovery is a journey of healing and transformation for a person with a mental health disability to be able to live a meaningful life in communities of his or her choice while striving to achieve full human potential or “personhood.”  Ten characteristics of recovery and recovery-oriented services identified by SAMHSA include: 1. Self-direction, 2. Individualized and Person-Centered, 3. Empowerment, 4. Holistic, 5. Non-Linear, 6. Strengths-Based, 7. Peer Support, 8. Respect, 9. Responsibility, 10. Hope.

Others have made the distinction between recovery “from” an illness (i.e. disease is no longer present) to recovery “in” the illness, which emphasizes “learning how to live a safe, dignified, full, and self-determined life, at times in the face of the enduring symptoms of a serious mental illness” (Davidson et al., 2005, p. 324) and may be more relevant for many people for whom mental illness will be an ongoing condition. Recovery means learning to effectively manage symptoms and utilize wellness strategies in order to achieve the things that matter in life: love, work and community contribution. People in recovery often use mental health and peer support services continuously or intermittently to support recovery throughout the lifespan. For young adults experiencing a mental illness with psychosis, a recovery model is an essential component of mental health services.

• Substance Abuse and Mental Health Services Administration (SAMHSA) Recovery to Practice. SAMHSA national website and materials on mental health recovery.
• SAMHSA’s National Consensus Statement on Mental Health Recovery This consensus statement was developed through deliberations by over 110 expert panelists representing mental health consumers, families, providers, advocates, researchers, managed care organizations, state and local public officials and other.”
• OnTrackNY Voices of Recovery Videos. These videos featuring OnTrackNY participants, graduates, families, and team members.

Resources for Learning Evidence-Based Practices

• Illness Management and Recovery (IMR). IMR is an evidence-based practice for adults with SMI. IMR practitioner guides and handouts can be found here within the IMR manual (361 pages). IMR includes an orientation and covers ten topics (recovery strategies; practical facts about mental illness; stress-vulnerability model and treatment strategies; building social support; using medication effectively; drug and alcohol use; reducing relapses; coping with stress; coping with problems and persistent symptoms; getting your needs met by the mental health system)
• Social Skills Training for Schizophrenia. This website provides a range of SST training resources. Social Skills Training for Serious Mental Illness (SST) is an evidence-based practice for persons with schizophrenia (Dixon et al., 2010). SST is also commonly used effectively with people with other types of serious mental illness (SMI). The social skills model used is based on Social Skills Training for Schizophrenia: A Step-by-Step Guide (Bellack, Mueser, Gingerich, & Agresta, 2004). SST is a treatment procedure that has been developed to enhance interpersonal skills with the goal of improving community adjustment, quality of life and pursuit of personal goals. SST involves an initial individual session followed by group sessions. 
• Cognitive Behavioral Social Skills Training for Schizophrenia (CBSST). Eric Granholm, Ph.D. and his colleagues developed Cognitive Behavioral Social Skills Training (CBSST) to facilitate real-world functional improvement. CBSST combines cognitive behavioral therapy (CBT) and social skills training (SST) techniques, such as thought challenging, role-play practice of communication skills, and problem-solving training. It is a flexible, individually-tailored, manualized intervention that teaches cognitive and behavioral coping techniques, social functioning skills, problem-solving, and compensatory aids for neurocognitive impairments. CBSST targets the range of multidimensional deficits that can lead to functional disability in people with serious mental illness. CBSST is guided by a consumer treatment manual that describes the skills and includes at-home practice assignments. 
• Social Recovery Therapy (SRT). SRT is an individual psychosocial therapy that aims to improve social recovery by increasing the amount of time individuals spend in meaningful structured activities. SRT draws on Cognitive Behavioral Therapy (CBT); clinical resources, including outlines, guides, and video examples, can be found on the website above
• Wellness Self-Management Recovery (WSM) WSM is an adaptation of the IMR model that assists individuals living with SMI manage their health. Topics include: Understanding what helps and what hinders recovery; Understanding how having goals helps recovery; Understanding how your cultural and family background affects decisions about mental health services; Practical facts about mental health symptoms, treatment, and causes; How social support and using community resources help recovery; How family and friends can support your work in WSM; Developing and using a relapse prevention plan; Knowing and using your strengths to support recovery; Finding and using coping strategies that work; Understanding the connection between physical and mental health).
• First Episode Psychosis and Co-Occurring Substance Use Disorders. This guide supports health care providers, systems, and communities to address first-episode psychosis and co-occurring substance use disorders. It describes relevant research, examines emerging and best practices, identifies knowledge gaps and implementation challenges, and offers resources.

Resources for Supported Employment and Education

Supported employment and education is an essential component of comprehensive early psychosis services. Because young people often initially want to focus on getting back to school and/or getting a job, supported employment and education are often the hook that pulls many young people into mental health services. 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 (Drake, Bond, & Becker, 2012). Growing evidence indicates that IPS may be also be the best method for assisting young people who have experienced a first episode of psychosis (FEP) with obtaining employment. Adapting IPS to young adults with FEP has involved including supported education as a focus in recognition that going to school is a common goal for this age group. The Substance Abuse and Mental Health Services Administration (SAMHSA) has recognized Supported Education as a “Promising Practice” which provides services that assist young people to gain access to and to be able to complete educational programs of their choice. It can help to ensure that developmental steps can be mastered by young people so that they can go forward to develop and qualify for meaningful careers. The IPS supported employment model focuses on rapid access to support for job search and retention of competitive employment. 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. Further consultation is available through the Maryland EIP from Kim Reeder, M.Ed., MA, CRC, CHES, Consultant and Trainer, Maryland Early Intervention Program (kereeder@som.umaryland.edu).

Resources for Supported Employment

• Locating Evidence-Based Practice (EBP) Supported Employment programs in Maryland that use the IPS model. There are numerous Evidence-Based Practice (EBP) Supported Employment programs in Maryland that use the IPS model. The best way to determine what programs are available in your area is to contact your county’s Core Services Agency. The Core Service Agency staff collaborate with other human service agencies to promote comprehensive services for individuals with mental illness and substance use disorders who have multiple needs and includes supported employment services.
• Supported Employment Evidence-Based Practice (EBP) Toolkit. This kit provides practice principles for supported employment, an approach to vocational rehabilitation for people living with serious mental illness. The kit promotes the belief that everyone living with serious mental illness is capable of working competitively in the community.
• The Employment Resource Book. This resource book is designed for young people who have had mental health problems and are now considering finding a job, have already decided to find a job, or already have a job in the general workforce. Finding a part-time or full-time job in the general workforce—a job not set aside for people with disabilities—is known as competitive employment. This resource book is designed to help young people think about working and provide guidance before, during and/or after a competitive employment job search.
• Maryland Division of Rehabilitation Services (DORS). DORS helps people with physical, emotional, intellectual, developmental, sensory and learning disabilities go to work and keep their jobs by providing services such as career assessment and counseling, assistive technology, job training, higher education, and job placement. DORS will assign a counselor who will talk with the individual about DORS services and find out if they are eligible for these services. By age 14 DORS can help prepare students for future employment or training through activities such as job exploration and internship participation.  During their last two years of high school, DORS can work with students on developing an employment goal and planning for the services that you will need to be successfully employed. Students in a special education program (e.g., have an I.E.P.), receive accommodations in school (e.g., have a 504 Plan) or have a significant health condition, may qualify or be eligible for certain DORS services.
• Transition Age Youth (TAY) Programs in Maryland. There are several Transition Age Youth (TAY) Programs in Maryland that provide coordinated, high-fidelity evidence-based and empirically-supported services and supports that are youth-driven, developmentally-sensitive, and culturally and linguistically competent to TAY with a SMHC. Employment Specialists provide individualized placement and support services which are integrated and coordinated with mental health treatment providers, which are designed to assist youth and young adults with a to attain, maintain, and advance within competitive, community-integrated employment positions that pay at least minimum wage, are permanent, and are not set aside or reserved for individuals with disabilities. Supported Education (SEd) Transition Facilitators provide support to assist youth and young adults with SMHC in exploring career relevant education options, applying for admission and financial aid, advocating for accommodations, learning study skills, and staying on track for program or degree completion. Again, the best way to determine what programs are available in your area is to contact your county’s Core Services Agency.
• OnTrackNY IPS Supported Education and Supported Employment. The OnTrackNY manual for supported education and employment is informed by the evidence-based practice, Individual Placement and Support (IPS) that was developed by the Dartmouth Psychiatric research Center. It has two parts. The first part consists of available resources for traditional IPS including the core IPS manual (Swanson, S.J, Becker, D.R., Drake, R.E., & Merrens, M.R. Supported Employment: A Practical Guide for Practitioners and Supervisors. Lebanon, NH: Dartmouth Psychiatric Research Center, 2008) and a volume that provides a focused discussion of supervision (Swanson, S.J. & Becker, D.R. Supported employment: applying the individual placement and support (IPS) model to help clients compete in the workforce. Minnesota: Hazelden, 2011.) The second part consists of this addendum to the core IPS manual.
• NAVIGATE: Supported Employment and Education Manual. NAVIGATE is a comprehensive intervention program for people who have experienced a first episode of psychosis. Treatment is provided by a team of mental health professionals who focus on helping people work toward personal goals and recovery. More broadly, the NAVIGATE program helps consumers navigate the road to recovery from an episode of psychosis, including supporting efforts to function well at home, on the job, at school, and in the social world. The NAVIGATE program includes four different treatments, each of which has a manual: NAVIGATE Psychopharmacological Treatment Manual, Supported Employment and Education, Individual Resiliency Training (IRT), and Family Education. There is also a Team Members' Guide that describes the overall NAVIGATE structure and how team members work together, and a manual for the Director of the NAVIGATE team. This manual describes the NAVIGATE Supported Employment and Education and how to implement it.
• Helping Individuals Consider Employment: Tips for Mental Health Practitioners. This worksheet is designed to help mental health professionals engage in discussions with young clients about employment.

Resources for Supported Education (High School)

The Individuals with Disabilities Education Act of 2004 (IDEA) requires that an Individual Education Program (IEP) be developed for eligible students with disabilities so that they are provided a free and appropriate public education. A written plan must be designed to focus on improving the academic and functional achievements of student with disabilities to facilitate movement from school to postsecondary activities and prepare them for further education, employment, and/or independent living. It specifies how education, related services, and supports will be delivered to a student with disabilities. To the maximum extent appropriate, students with disabilities are to be educated in the Least Restrictive Environment with students who are non-disabled. The IEP is based upon a student’s ability to participate and progress in the general education curriculum, with appropriate adaptations to meet the unique needs of that student. The student’s ability to participate in general education classes and nonacademic and extracurricular activities is one of the most important matters to be discussed by the IEP team. The goal is to provide an appropriate education in the least restrictive environment in which the student’s needs can be met. Students with mental health needs who do not qualify for IEP may be eligible for services under Section 504 of the Rehabilitation Act of 1974, a federal civil rights law that prohibits discrimination against public school students with disabilities. Under the 504 Plan the school can make special accommodations for the student that remove barriers to learning, such as test taking adjustments, home instruction, and note taking assistance.

Supports for high school students may include: developing relationships with high school IEP case managers, guidance counselors, transition coordinators, social workers, and teachers; helping students, families, and school personnel understand how the onset of psychosis affects education; assisting students and their families with navigating high school IEPs and 504 Plans and meetings; advocating on behalf of students and families to school personnel to ensure that their rights and needs are being honored, and that they obtain needed reasonable accommodations and other needed resources; serving as a liaison between the student’s treatment team and school personnel; tracking students’ progress with school personnel to identify and minimize academic problems as early as possible; providing skills training and strategies regarding building good study skills, managing a course load, completing assignments on time, and taking tests; devising a system to track dates for tests and assignments; adding due dates and test dates to calendar, as well as, times to study or prepare projects/write papers; provide support and planning for difficult social situations at school; assisting those who have dropped out of high school and do not wish to return with finding and enrolling in a General Educational Development (GED) program; assisting with locating trade or apprenticeship schools and programs; and facilitating family meetings to discuss progress in school and family supports.

• Supported Education for Persons Experiencing a First Episode of Psychosis. This issue brief describes supported education and how its services are organized. Topics addressed include the role of the treatment team, engaging young adults, and professional development for supported employment and education specialists.
• Understanding the Evaluation, Eligibility, and Individualized Education Program Process in Maryland. This guide to understanding the evaluation, eligibility, and IEP processes in Maryland has been developed by the Maryland State Department of Education (MSDE) to help you better understand your child’s rights, your rights and responsibilities, and the school’s responsibilities to meet the special needs of your child. This guide includes a description of the Child Find, evaluation, eligibility determination, and Individualized Education Program (IEP) processes.
• 10 Tips: How to Use IDEA 2004 to Improve Your Child's Special Education. This webpage provides information on ways to ensure that the needs of children with disabilities are met, while also improving educational outcomes and results.
• Special Education Rights: A Handbook for Maryland Families and Professionals. This handbook is intended to provide parents, guardians and caregivers of school-age children with basic information regarding the special education process so they can advocate effectively for their children.
• Navigating the Transition Years: A Publication of the Maryland Coalition of Families for Children’s Mental Health. This handbook brings together information and tools to navigate the transition process from youth to adulthood for children with emotional disabilities. The handbook is written for families, but the intent is that with this information, families can support their youth in self-advocacy
• What is a 504 Plan and How Can it Help my Teen? This tip sheet offers information on 504 plans.

Resources for Supported Education (College)

Providing supports to a student prior to starting a higher educational program may include identifying application requirements, resolving school debts, scheduling, preparing for, and taking admissions tests, assessing costs & eligibility for financial aid, loans, grants & scholarships, obtaining transcripts, completing essays, requesting & getting letters of recommendation, submitting applications and advocating for admission,  enrolling, picking courses, and getting oriented, and linking to office of disability support services and other needed supports and resources. Supports after starting a higher educational program may include resolving transportation issues, accompanying to school or finding a classroom, buying books and other school supplies, planning ahead, teaching time management skills, minimizing academic problems, seeking social supports, offering strategies for coping with or reducing stress or anxiety at school and outside, and accessing tutoring centers, mentors and study groups.

Supports for the first week of classes may include: checking in with students after their first day of classes, and asking questions such as, Did you get to each class on time? How did it feel to be in class? Do you have any concerns?; helping students obtain planners or with setting up calendars on their phones, tablets, or laptops, and adding dates from course syllabuses including test dates and due dates for projects, while adding times to study and work on projects, and including student’s work schedule and regular appointments; and reviewing the planner together occasionally to prevent her from falling behind in class. Ongoing supports may include: meeting with students on a regular basis between classes at the college center or at their home to discuss how they are doing with schoolwork and social situations, etc., (especially with those starting their first semester); reviewing study plans and determining whether any adjustments are needed; asking about test results and grades on papers; reminding of dates for tests, and assignments; renewing financial aid applications; and assisting with registering with the office for students with disabilities, if accommodations are needed.

• Making My Way through College: A Guide for Students with Disabilities. This primary focus of this guide is to help students with disabilities navigate the college experience.
• Getting Accommodations at College: Tools for School. This tip sheet summarizes what extra supports and services colleges must provide to help students with mental health concerns succeed.
• Back to School: Toolkits to Support the Full Inclusion of Students with Early Psychosis in Higher Education: Student & Family Version. This guide covers advance planning and communication, establishing relationships with campus staff, supporting your own well-being, campus self-advocacy, navigating disclosure, and campus stigma. There is also an orientation for families on topics related to supporting students with early psychosis in institutions of higher education.

Resources for Clinicians Working with Families

Family Psychoeducation is an evidence-based practice that combines education about mental illness with training in problem solving, communication skills, coping skills and developing social supports. The goals are to enable families to communicate and problem solve more effectively as a means to reduce relationship stress and support recovery. Further consultation is available through the Maryland EIP from Bette Stewart, Consultant/Trainer, Department of Psychiatry, University of Maryland School of Medicine (bstewart@som.umaryland.edu).

• Family Psychoeducation Evidence-Based Practices (EBP) KIT. This toolkit offers evidence-based practices to help public officials develop family psychoeducation mental health programs. The programs create a partnership between consumers, families, practitioners, and supporters. The kit includes a brochure (English, Spanish), nine booklets, a PowerPoint presentation, and a introductory video.
• Family Psychoeducation Workbook. This workbook is for mental health practitioners and case managers learning and applying this approach to treatment and recovery and for clinical supervisors and mental health program leaders as a reference for program development and ongoing administration.
• Training in Family Psychoeducation at the PIER Institute. The PIER Institute providers training in evidence-based practices including Family Psychoeducation.
• OnTrackNY Family Treatment and Resources Manual. This manual outlines the OnTrackNY model for working with families and offers practical activities and interventions for young people and their families.
• I am not sick, I don’t need help! This book provides information to families on how to help a family member who may deny their illness/symptoms. The book has information on family communication, community services, and research on anosognosia.