The definition of serious mental health conditions in youth and young adults crosses two age-delimited, conceptually related, diagnostic categories. The term “serious emotional disturbance” (SED), applied to people under the age of 18, refers to a diagnosable mental, behavioral or emotional disorder that substantially interferes with or limits a child’s role in family, school, or community activities (Interdepartmental Serious Mental Illness Coordinating Committee, 2017). Similarly, the term “serious mental illness” (SMI), typically applied to adults (18 and older), refers to a diagnosable mental, behavioral, or emotional disorder that results in functional impairment that substantially interferes with or limits one or more major life activities (Interdepartmental Serious Mental Illness Coordinating Committee, 2017). For this priority, the population of interest, youth and young adults with serious mental health conditions (SMHC), includes individuals between the ages of 14 and 30 who have been diagnosed with either SED or SMI, according to these definitions.
SED in youth and SMI in young adults have similar population prevalence estimates. SED in youth ages 13 to 17 has an estimated prevalence of 8% (Kessler et. al., 2012). The prevalence of SMI in young adults ages 18 to 25 is 7.5% and has been increasing since 2013 (Substance Abuse and Mental Health Services Administration [SAMHSA], 2018). Risk factors for mental health conditions, such as poverty, food insecurity, and exposure to violence, disproportionately affect youth and young adults of color, (Alegria, Vallas & Pumariega, 2010); and, persistently low socioeconomic status is strongly related to higher rates of mental health problems among adolescents (Reiss, 2013). Additionally, some youth and young adults are at particularly high risk for adverse outcomes related to their SMHC, including youth with multiple diagnoses, involvement in foster care, involvement in the justice system, and those who experience psychosis (Burke et al., 2015; Institute of Medicine and National Research Council, 2013).
Youth and young adults with SMHC face serious challenges to community living and participation, in part due to the lack of attention to this topic in mental health practice and policy (Geenan et al., 2015; Burns-Lynch et al., 2016). This population is more likely than their peers without SMHC to have been involved with the justice system, to have defaulted on a financial obligation, and to be involved in a violent relationship (IOM, 2013; Newman et al., 2011). In addition, youth and young adults with SMHC frequently encounter stigma in their community (Gronholm et al., 2017; Kaushik et al., 2016), and often experience difficulties with social skills (Cunningham & Lucksted, 2014; Granholm et al., 2017; Green et al., 2015; Varo et al., 2017). As a result, youth and young adults with SMHC commonly experience a substantial disadvantage in establishing the relationships and connections that contribute to meaningful community living and participation (Jones et al., 2015; Terry et al., 2019).
There is need for timely, developmentally appropriate, evidence-based, and effective interventions, systems, and policies designed to improve opportunities and outcomes in community living and participation for youth and young adults with SMHC (Burns-Lynch et al., 2016; Interdepartmental Serious Mental Illness Coordinating Committee, 2017; Ojeda et al., 2016; Paul et al., 2014). Recent interventions hold promise in improving community living and participation outcomes for youth and young adults with SMHC (Davis et al., 2015; Ellison et al., 2015; Sheidow et al., 2016). These include interventions that emphasize training youth and young adults in competencies such as self-determination, goal-setting, and planning that can improve their community living and participation outcomes (Dresser et al., 2015; Shogren et al., 2015).
In sum, youth and young adults with SMHC frequently experience challenges in community living and participation. There is a great need for more evidence-based and effective interventions to improve outcomes in these areas, particularly for those who face the greatest challenges.
Alegria, M., Vallas, M., & Pumariega, A. (2010). Racial and ethnic disparities in pediatric mental health. Child and Adolescent Psychiatric Clinics of North America, 19(4), 759.
Burke, J. D., Mulvey, E. P., & Schubert, C. A. (2015). Prevalence of mental health problems and service use among first-time juvenile offenders. Journal of child and family studies, 24(12), 3774-3781.
Burns-Lynch, B., & Brusilovskiy, E., & Salzer, M. (2016). An empirical study of the relationship between community participation, recovery, and quality of life of individuals with serious mental illnesses. The Israel journal of psychiatry and related sciences, 53(1), 46.
Cunningham, K.C. & Lucksted, A. (2014). Social cognition, internalized stigma, and recovery orientation among adults with serious mental illness. Psychiatric Rehabilitation Journal, 40(4), Pgs. 409-411.
Davis, M., Sheidow, A. J., & McCart, M. R. (2015). Reducing recidivism and symptoms in emerging adults with serious mental health conditions and justice system involvement. The journal of behavioral health services & research, 42(2), 172-190.
Dresser, Karyn, Hewitt B. Clark, and Nicole Deschênes. "Implementation of a positive development, evidence-supported practice for emerging adults with serious mental health conditions: The Transition to Independence Process (TIP) Model." The journal of behavioral health services & research 42.2 (2015): 223-237.
Ellison, M. L., Klodnick, V. V., Bond, G. R., Krzos, I. M., Kaiser, S. M., Fagan, M. A., & Davis, M. (2015). Adapting supported employment for emerging adults with serious mental health conditions. The journal of behavioral health services & research, 42(2), 206-222.
Geenan, S., Powers, L.E., Phillips, L.A., Nelson, M., McKenna, J., Winges-Yanez, N., Blanchette, L., Croskey, A., Dalton, L.D., Salazar, A., & Swank, P. (2015). Better Futures: A randomized field test of a model for supporting young people in foster care with mental health challenges to participate in higher education. The Journal of Behavioral Health Services and Research, 42(2), 150-171.
Granholm, E., Holden, J., & Worley, M. (2017). Improvement in negative symptoms and functioning in cognitive-behavioral social skills training for schizophrenia: mediation by defeatist performance attitudes and asocial beliefs. Schizophrenia bulletin, 44(3), 653-661.
Gronholm, P. C., Thornicroft, G., Laurens, K. R., & Evans-Lacko, S. (2017). Mental health-related stigma and pathways to care for people at risk of psychotic disorders or experiencing first-episode psychosis: a systematic review. Psychological medicine, 47(11), 1867-1879.
Green, M. F., Horan, W. P., & Lee, J. (2015). Social cognition in schizophrenia. Nature Reviews Neuroscience, 16(10), 620.
Institute of Medicine (2013). Improving the health, safety, and well-being of young adults: Workshop summary. Washington, DC: National Academies Press.
Interdepartmental Serious Mental Illness Coordinating Committee (2017). The Way Forward: Federal Action for a System That Works for All People Living With SMI and SED and Their Families and Caregivers. Retrieved from https://www.samhsa.gov/sites/default/files/programs_campaigns/ismicc_20…
Jones, N., Brown, R., Keys, C. B., & Salzer, M. (2015). Beyond symptoms? Investigating predictors of sense of campus belonging among postsecondary students with psychiatric disabilities. Journal of Community Psychology, 43(5), 594-610.
Kaushik, A., Kostaki, E., & Kyriakopoulos, M. (2016). The stigma of mental illness in children and adolescents: A systematic review. Psychiatry Research, 243, 469-494.
Kessler, R. C., Avenevoli, S., Costello, J., Green, J. G., Gruber, M. J., McLaughlin, K. A., Petukova, M., Sampson, N. A., Zaslavsky, A. M., & Merikangas, K. R. (2012). Severity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication Adolescent Supplement. Archives of General Psychiatry, 69, 381-389.
Newman, L., Wagner, M., Knokey, A., Marder, C., Nagle, K., Shaver, D., & Wei, X. (2011). The post-high school outcomes of young adults with disabilities up to 8 years after high school: A report from the National Longitudinal Transition Study 2 (NLTS2). NCSER2011-3005. National Center for Special Education Research.
Ojeda, V. D., Hiller, S. P., Hurst, S., Jones, N., McMenamin, S., Burgdorf, J., & Gilmer, T. P. (2016). Implementation of age-specific services for transition-age youths in California. Psychiatric services, 67(9), 970-976.
Paul, M., Street, C., Wheeler, N., & Singh, S. P. (2015). Transition to adult services for young people with mental health needs: A systematic review. Clinical child psychology and psychiatry, 20(3), 436-457.
Sheidow, A. J., McCart, M. R., & Davis, M. (2016). Multisystemic therapy for emerging adults with serious mental illness and justice involvement. Cognitive and behavioral practice, 23(3), 356-367.
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48(4), 256-267.
Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. (2018). Key Substance Use and Mental Health Indicators in the United States: Results from the 2017 National Survey on Drug Use and Health. Retrieved from: https://www.samhsa.gov/data/sites/default/files/NSDUH-FFR1-2016/NSDUH-F…
Terry, R., Townley, G., Brusilovskiy, E., & Salzer, M. S. (2019). The influence of sense of community on the relationship between community participation and mental health for individuals with serious mental illnesses. Journal of community psychology, 47(1), 163-175.
U.S. General Accountability Office (June, 2008). Young adults with serious mental illness: Some states and federal agencies are taking steps to address their transition challenges. GAO-08-678.
U.S. General Accountability Office (July, 2012). Students with disabilities: Better Federal coordination could lessen challenges in the transition from high school. GAO-12-594.
Varo, C., Jimenez, E., Solé, B., Bonnín, C. M., Torrent, C., Valls, E., Morilla, I., Lahera, G., Martinez-Aran, A., Vieta., E, & Reinares, M. (2017). Social cognition in bipolar disorder: focus on emotional intelligence. Journal of affective disorders, 217, 210-217.
Priority--RRTC on Community Living and Participation for Youth and Young Adults with Serious Mental Health Conditions
The Administrator of the Administration for Community Living establishes a priority for an RRTC on Community Living and Participation for Youth and Young Adults with Serious Mental Health Conditions (SMHC). This RRTC will also conduct activities funded by the Center for Mental Health Services, of the Substance Abuse and Mental Health Services Administration. The RRTC must conduct research or evaluative studies designed to improve the community living and participation outcomes of youth and young adults with serious mental health conditions (SMHC). Evaluative studies conducted by this RRTC will focus on assessing the effectiveness of existing programs or services; research studies will generate new knowledge, generalizable to the relevant target populations.
For the purposes of this priority, the term “youth and young adults with SMHC” refers to individuals between the ages of 14 and 30, inclusive, who have been assessed as having either a serious emotional disturbance (for individuals under the age of 18 years) or a serious mental illness (for those 18 years of age or older). Under this priority, the RRTC must contribute to improved outcomes in community living and participation for youth and young adults with SMHC by:
(a) Conducting research or evaluation activities that generate new knowledge regarding developmentally appropriate interventions that are designed to improve community living and participation outcomes among youth and young adults with SMHC. These research or evaluation activities must:
(i) Identify or develop, and then evaluate and test, innovative interventions that meet the community living and participation needs of youth and young adults with SMHC. Interventions include any strategy, practice, program, policy, or tool that, when implemented as intended, is designed to contribute to improvements in outcomes for youth and young adults with SMHC. These interventions may include, but are not limited to training in social competencies and skills (e.g., self-determination, goal-setting, planning) for youth and young adults with SMHC.
(ii) Include in the activities in (a)(i) above youth and young adults with SMHC who are at particular risk for less favorable community living and participation outcomes (e.g. those with justice system involvement, those in foster care, those who have experienced psychosis, and those with multiple diagnoses). This may also include individuals who are in early stages of psychosis. Applicants must identify the specific at-risk group or groups of youth and young adults with SMHC they propose to study, provide evidence that the selected population or populations are at risk for less favorable community living and participation outcomes, and explain how the proposed practices are expected to address the needs of the identified population.
(b) Generating new knowledge about key systems and policy issues that affect community living and participation outcomes for youth and young adults with SMHC. If generating this new knowledge by conducting research, applicants should conduct research in one or more specific stages of research. If the RRTC plans to conduct research that can be categorized under more than one of the research stages, or research that progresses from one stage to another, those stages must be clearly specified. These stages and their definitions are provided in this notice.
(c) Increasing capacity of educators, community-based organizations, employers, state agencies, and service providers for youth and young adults with SMHC to improve the community living and participation outcomes of youth and young adults, and help them build connections with positive and supportive individuals and organizations in their communities. The RRTC will provide training and technical assistance to these entities who work with youth and young adults with SMHC.
(d) Serving as a national resource center related to community living and participation and self-determination of youth and young adults with SMHC by:
(i) Providing information and technical assistance to youth and young adults with SMHC, their representatives, and other key stakeholders;
(ii) Providing training (including graduate, pre-service, and in-service training) and technical assistance to service providers, researchers, and other key stakeholders, so that they can contribute to building more effective service systems and provide more effective support to youth and young adults with SMHC. This training may be provided through conferences, workshops, public education programs, in-service training programs, and similar activities.
(iii) Disseminating research-based information and materials, including peer-reviewed articles, related to community living and participation of youth and young adults with SMHC. The applicant must describe how it will involve youth and young adults with SMHC in its dissemination and outreach activities; and
(iv) Involving youth and young adults with SMHC, as well as other key stakeholder groups (e.g., community-based organizations, family members or family surrogates, employers, educators, state agencies, service providers, peer mentors) in the activities conducted under paragraphs (a) and (b) in order to maximize the relevance and usability of the new knowledge generated by the RRTC.
General Rehabilitation Research and Training Center Requirements
The effectiveness of any RRTC depends on, among other things, how well the RRTC coordinates its research efforts with the research of other NIDILRR-funded projects, and involves individuals with disabilities in its activities. Accordingly, the RRTC must:
(a) Coordinate on research projects of mutual interest with relevant NIDILRR-funded projects as identified by the NIDILRR Project Officer.
(b) Involve individuals with disabilities, including individuals with disabilities from minority backgrounds, in planning and implementing its research, training, and dissemination activities, and in evaluating the RRTC.
(c) Coordinate with the appropriate NIDILRR-funded Knowledge Translation Centers and professional and consumer organizations to provide scientific results and information to policymakers, service providers, researchers, and others, including employers, vocational rehabilitation providers, and independent living centers.
Definitions - Stages of Research:
Exploration and discovery means the stage of research that generates hypotheses or theories through new and refined analyses of data, producing observational findings and creating other sources of research-based information. This research stage may include identifying or describing the barriers to and facilitators of improved outcomes of individuals with disabilities, as well as identifying or describing existing practices, programs, or policies that are associated with important aspects of the lives of individuals with disabilities. Results achieved under this stage of research may inform the development of interventions or lead to evaluations of interventions or policies. The results of the exploration and discovery stage of research may also be used to inform decisions or priorities.
Intervention development means the stage of research that focuses on generating and testing interventions that have the potential to improve outcomes for individuals with disabilities. Intervention development involves determining the active components of possible interventions, developing measures that would be required to illustrate outcomes, specifying target populations, conducting field tests, and assessing the feasibility of conducting a well-designed intervention study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.
Intervention efficacy means the stage of research during which a project evaluates and tests whether an intervention is feasible, practical, and has the potential to yield positive outcomes for individuals with disabilities. Efficacy research may assess the strength of the relationships between an intervention and outcomes and may identify factors or individual characteristics that affect the relationship between the intervention and outcomes. Efficacy research can inform decisions about whether there is sufficient evidence to support “scaling-up” an intervention to other sites and contexts. This stage of research may include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real-world applications.
Scale-up evaluation means the stage of research during which a project analyzes whether an intervention is effective in producing improved outcomes for individuals with disabilities when implemented in a real-world setting. During this stage of research, a project tests the outcomes of an evidence-based intervention in different settings. The project examines the challenges to successful replication of the intervention and the circumstances and activities that contribute to successful adoption of the intervention in real-world settings. This stage of research may also include well-designed studies of an intervention that has been widely adopted in practice, but lacks a sufficient evidence base to demonstrate its effectiveness.