The knowledge base on SEd interventions is just emerging. Although Chapter 3 reviewed a growing body of published literature, other evidence exists from ongoing evaluations and researcher experiences with conducting SEd studies in the field. This report summarizes the results of an environmental scan conducted with a select number of SEd researchers, program managers, and other stakeholders involved in funding or supporting the implementation of SEd programs in communities across the country. The individuals selected for participation in these discussions were chosen to represent various perspectives across the SEd research and practice community. The findings from this chapter are not intended to represent all possible issues and should not be taken as conclusive. Rather, this summary describes a snapshot of issues for consideration in designing, implementing, and evaluating SEd programs for individuals with SMI.
Fourteen unstructured discussions were conducted by telephone with researchers, program managers, and key informants identified to participate in the environmental scan. This included four researchers, six SEd program managers, and conversations with four other sets of stakeholders relevant to SEd programs and research. Table 4-1 shows a list of the individuals who participated in these discussions.
Members of the project team made preliminary contact with all identified individuals for unstructured discussions via email. One week later, a second reminder email was sent to all contacts who had not yet replied to the initial request for information or to schedule a call. All telephone calls took place between January and February 2015. Before each call, individuals received a summary of the project's goals and sample questions to be included in the discussion. All calls were recorded with the respondents' permission. Recordings were reviewed to ensure the accuracy of notes entered for each call. To summarize information gathered on these calls, a template was created that delineated relevant aspects of SEd programs (e.g., program goals/objectives, target population [diagnosis, age range, setting], number of individuals served/year, program length, agencies involved in the program). The template was used to compile information on each of the SEd programs included in the environmental scan.
The project team identified researchers who had recently published studies focused on SEd in the literature review. Three researchers with diverse research areas were selected to participate in an unstructured telephone discussion. All individuals listed in Table 4-1 were also contacted via email to inquire about unpublished reports, manuscripts in press, or other ongoing SEd efforts that might be missed via a traditional literature review. Five additional researchers identified in the literature review did not participated in an unstructured telephone discussion, but were emailed to inquire about unpublished or ongoing SEd research. Information was received from two researchers, Drs. Trevor Manthey and Alexa Smith-Osborne. Those researchers who did not participate in the environmental scan telephone discussions are not included in Table 4-1.
|TABLE 4-1. Stakeholders Who Participated in Unstructured Discussions|
|Researcher||Karen Unger||President||Rehabilitation Through Education|
|Researcher||Gary Bond||Professor of Psychiatry||Dartmouth Psychiatric Research Center|
|Researcher||Kim Mueser||Executive Director, Center for Psychiatric Rehabilitation||Boston University|
|Researcher/ program manager||Michelle Mullen||Assistant Professor, Department of Psychiatric Rehabilitation and Counseling Professions||Rutgers University|
|Program manager||Lisa Mueller||Psychologist and Medical Director for Compensated Work Therapy||Veterans Integration To Academic Leadership, Edith Nourse Rogers Memorial Veterans Hospital|
|Program manager||Tamara Sale||Program Development Coordinator||EASA|
|Program manager||Luana Turner||Psychologist/Therapist||UCLA Aftercare Research Program|
|Program manager||Gary Scannevin, Paul Margolies, Liza Watkins||OnTrackNY|
|Program manager||Jo-Anne Sharac||Coordinator of Disability Services||Quinsigamond Community College|
|Program manager||Cara Sams||Program Director||EASA, Transition-Age Youth Programs, LifeWorks Northwest|
|State or federal official||Sandra Miller||Transition Coordinator||Delaware Division of Vocational Rehabilitation|
|State or federal official||Denise Juliano-Bult||Program Chief||Division of Services and Intervention Research, NIMH|
|State or federal official||Leslie Caplan||Rehabilitation and Program Specialist||NIDRR, U.S. Department of Education|
|State or federal official||Jean Close, David Shillcut, Kathryn Poisal, Margherita Sciulli||CMS|
Telephone discussions were held with six SEd program managers. The program managers who participated in the environmental scan were located in five states. One individual (Michelle Mullen) described herself as both a program manager and researcher. Table 4-2 lists the seven SEd programs and characteristics of each program. Program managers were selected to cover, as broadly as possible, the heterogeneity of SEd programs (campus-based, psychiatric rehabilitation through a mental health center). Program selection was guided by: (1) common SEd program models; (2) inclusion of different types of program models; and (3) geographic variability/programs in at least four states. Conversations with program managers centered on key challenges to operating and financing SEd initiatives. The conversations covered key funding sources for each program, whether the program was being formally evaluated, and the challenges to evaluating these programs.
|TABLE 4-2. SEd Programs Included in the Environmental Scan|
|Program Name||Location||Setting||Program Description|
|Saint Clare's Behavioral Health Services, Labor Education and Research Now (LEARN)||Denville, NJ||Community mental health center||Provides SEd services to adults with a psychiatric disability who have a desire to pursue higher education.|
|Veterans Integration To Academic Leadership, Edith Nourse Rogers Memorial Veterans Hospital||Bedford, MA||College campus||Provides VA outreach services on college campuses to improve the mental health of veterans while supporting their successful integration into college.|
|Early Assessment and Support Alliance (EASA)||Multiple locations, OR||Community mental health center||A network of clinical and community-based services that provide SEd services in conjunction with other resources for individuals with first-episode psychosis.|
|University of California, Los Angeles Aftercare Research Program||Los Angeles, CA||College campus||Outpatient research clinic for recruitment, interventions, and assessments for first-episode patients who are participating in research projects at the Center.|
|OnTrackNY||Multiple locations, NY||Community mental health center||Affiliated with the NIMH RAISE, OnTrackNY presents an IPS SE and SEd model for individuals with first-episode psychosis.|
|Quinsigamond Community College||Worcester, MA||Community college||Provides SEd services to students through the Quinsigamond Community College Disability Services office.|
|EASA, Transition-Age Youth Programs, LifeWorks Northwest||Northwest Oregon||Community mental health center||Provides SEd services in conjunction with other resources for individuals with first-episode psychosis.|
The project conducted unstructured discussions with four other stakeholders from agencies funding research on SEd or from organizations involved in financing or serving individuals with SMI. These other stakeholder informants included a manager within a state VR program, as well as federal program officers from the HHS Centers for Medicare and Medicaid Services (CMS), the HHS National Institute of Mental Health (NIMH), and the U.S. Department of Education National Institute on Disability and Rehabilitation Research (NIDRR). These individuals provided valuable information related to potential collaboration in managing SEd programs, funding for SEd research, policies relevant to SEd programs, and SEd program financing.
4.3. Program Characteristics
Participants in the environmental scan discussions represented seven different SEd programs across the country. These programs were providing SEd services to both high school and college-level students. Table 4-2 provides a description of these programs.
4.3.1. Program Characteristics
This section summarizes information respondents provided as they described their familiarity with a particular SEd program's composition. Respondents described the array of services included in each particular SEd program, methods used to recruit and engage program participants, SEd program participant composition, staffing and management for SEd programs, and challenges experienced by SEd program participants in attaining targeted educational goals. Discussions across each of these areas are described as follows.
Participants in Supported Education Programs
The number of participants served per year across the SEd programs ranged from 20 to 900. Programs based in community mental health agencies were described as having smaller teams of staff who served a relatively small number of participants. One program served 50 participants per year who were enrolled in a 2-year program. The VA, campus-based programs, and large community mental health agency-based respondents reported serving a range of 300-900 participants per year. Joint SE/SEd programs indicated that roughly one-third to one-half of their students were pursuing educational goals or receiving some type of on-campus services. One community college campus-based SEd program reported serving 800-900 students per year with SEd specialist caseloads of 150-200 students.
The participant composition described by program managers appeared to vary by the service setting. For example, programs based out of the VA served veterans with a range of mental health diagnoses. Campus-based programs were also described as serving students with a range of psychiatric conditions. One campus-based program manager mentioned that her program was seeing an increase of students on campus with Asperger syndrome and veterans with PTSD and depression, in addition to students with depression, schizoaffective disorders, and anxiety disorders. Community mental health agencies providing SEd services were described as most often serving participants with schizophrenia and schizoaffective disorders in the early stages of diagnosis (1-2 years within the onset of symptoms). The age range of participants served by SEd programs were adolescents starting at 15 years old to adults in their 30s; there were exceptions when participants were younger or older than this range.
Participant Recruitment and Engagement
Respondents described outreach efforts to encourage referrals and service access. Strategies included efforts to reduce stigma, myths, and misconceptions that might prevent participants from seeking services. These perceptions included believing that the specific service setting might not be for them (e.g., disability office, VA, community mental health center) or having a sense that someone who has a mental illness might not be eligible for supportive services. Program managers felt that direct outreach efforts were necessary for all types of program settings providing SEd services, including campus disability offices, VA centers, and community mental health centers. Program manager respondents readily reported specific stories of participants' reluctance to receive services, stressing the importance of outreach activities to engage individuals in SEd programs. According to some program managers, persistent follow-up outreach efforts were sometimes necessary for months or even years until certain target individuals were ready to participate.
Another component of participant recruitment and outreach efforts described by program managers included outreach to community organizations such as schools (high school and college), the campus disability office, medical offices, primary care physicians, hospitals, emergency rooms, urgent care centers, and court programs. Court linkage was less commonly described across program managers but was an interesting approach. The University of California, Los Angeles (UCLA), Aftercare Research Program has begun to work with the Mental Health Court Linkage Program to assist young adults with SMI who are involved in the criminal justice system. In general, these outreach efforts seemed to allow for information sharing through interviews, such as on the radio, or brochures that could be dropped off in medical offices, and for relationship building with service providers of the desired program target population.
SEd publications describe challenges with program retention, engagement and attrition. Environmental scan respondents indicated that SEd service use and program participation varied across time. In general, respondents indicated that program participation is highest immediately after program enrollment and gradually declines over time. New program participants are often meeting with multiple team members and accessing an array of services as often as multiple days per week. One program manager specifically commented that she has observed that participant service use begins to decline around 6 months into the SEd program, as the participant is encouraged to be more independent in identifying and using needed services. Another program manager described it as critical that a SEd program encourage participants to learn how to build their network outside of the program. The last 6 months of a SEd program often include the sharpest decline in the use of program services as participants are often shifted into more supportive relationships with staff or peers to help solidify the progress they have made. At this stage, participants may be accessing services once a week, biweekly, or even less often. So, some decline in program participation may be a natural progression of SEd programs and even a desired outcome.
Most programs described by respondents appeared to be designed to provide services for approximately 2 years. Respondents emphasized how hard it is to describe uniform SEd program progression because very often, supports and services are so tailored to the individualized needs of the participant. Some SEd participants need more time in intense services/supports whereas others can transition more quickly to natural supports and become less reliant on the formal program. A number of program managers noted that it is important to allow for participants who are at different stages of readiness to drop off from services and come back as they are ready and when necessary.
Because of concerns about program attrition, it is important to understand program efforts around participant recruitment, retention, and engagement. Many respondents provided detailed information about their program's recruitment and engagement methods. Referrals to SEd programs most often came from hospitals and mental health agencies but sometimes also from schools and families, and as walk-in participants. A limited number of program managers specifically described efforts to attempt to see participants within 24 hours of an initial contact or referral.
Respondents believed that participant engagement hinged on having participant-driven care and a dedicated SEd program staff member. All program managers indicated that successful programs should have the participant define educational and other goals, with the service team coming together to help the participant succeed. The participant should drive desired services based on his or her educational goal. Respondents believed that the SEd specialist was critical to the engagement process. One program described its SEd specialist as its "secret weapon" in ensuring that participants stay engaged in the program. Participant engagement was often attributed to mobile support and outreach efforts that were provided in the community. Many programs were described as having a minimum percentage of time (e.g., the OnTrackNY program requires its specialist to be in the community 65% of the time) that the SEd specialist must spend in the field doing outreach activities and meeting directly with program participants.
Additional services that were described across program managers for promoting participant engagement were connecting participants with other partners (e.g., campus mental health center); involving family members to increase their knowledge of how to support SEd participants and encourage accountability in service use; and finally, having peer support staff available to provide the participant with peer-to-peer feedback. One program manager noted that this type of peer relationship may be especially useful for military veterans who are now acclimating to the requirements of a college/academic setting.
Challenges for Supported Education Program Participants
SEd program participants face many challenges while trying to reach their educational goals. Some challenges for SEd program participants include:
- Accessing and then being fully engaged in a SEd program;
- Educational barriers;
- Mental illness barriers that affect academic success; and
- Personal and employment barriers.
Program-level challenges for SEd participants included myths, stigmas, and misconceptions about SEd programs that were perceived as barriers and that affected participants' entrance to a program and engagement with other program participants. Program managers described program dropout as a common problem. Participants may disengage from SEd as their mental health symptoms improve, but they need to re-engage when symptoms worsen. Some program managers described participants as transient and indicated that frequent moves often prevented program accessibility. One program manager described efforts to navigate this problem by partnering with sister programs across the state to identify participants who might have moved to resume services at a new program location closer to where they now live.
Program managers reported that participants experienced several challenges in reaching their educational goals related to academic readiness, enrollment needs, supports, completing classes and subsequently minimizing financial aid problems and costs, and mental health needs. Program managers indicated that participants often needed to take pre-college classes on academic skills (e.g., basic math and English) and how to juggle academic demands (e.g., time management, study skills, using technology, coping skills) before they were ready for college-level classes. Then, once participants were ready, program managers described participants needing help to get back into school (or stay in school). SEd programs were described as attempting to "meet the participant where they are," but some respondents working specifically with high school students noted that it was easier to keep a student in school and focused on completing school on time (rather than having to stop and complete school via a GED path that often offered fewer supports). Individualized education plans (IEP) or Section 504 plans were also described as tools to help build supports around successful high school completion. An IEP describes the tailored education objectives and needs of a student who has qualified for special education services. It outlines specific supports and services that will help a student achieve his or her educational goals. If a student is 16 years or older, the IEP must include a description of transition services to support a student moving from secondary school to post-secondary school activities. An IEP can be in place until an individual's 21st birthday. A 504 plan details the modifications and accommodations that might be necessary for a student with a disability to perform at the same level as their peers. A 504 plan does not require that a student meet eligibility for special education services.
Program managers described a sense that participants often come to SEd programs with beliefs that they should have been able to handle their educational goals on their own without help. Consequently, there was a sense that participants have often waited too long for help. Waiting too long for help was perceived to lead to participants requesting help withdrawing from classes instead requesting help with enrolling or completing coursework. Program managers acknowledged that poor GPA, course incompletes, failed classes, and class withdrawal can prevent future college access and sometimes lead to financial aid problems. One program manager offered insight that course incompletes and failed classes can prevent students from obtaining further financial aid, while keeping them in debt for the cost of these dropped or failed classes. Additionally, colleges sometimes have policies in which even small unpaid debts from a previous semester (e.g., library fines, tuition) can prevent a student from being able to enroll in more classes.
For students with SMI, program managers indicated that these academic challenges can be compounded. For these students, respondents indicated that first semester anxiety levels are particularly magnified. Assistance was perceived to be needed for these students as soon as possible to minimize future crisis interventions. Furthermore, periods of poor mental health and hospitalizations can often lead to missed classes and risks of failing or having to withdraw from classes, putting future financial aid in jeopardy. Along with early intervention, program managers reported that well-developed relationships with the professors and the mental health providers are needed to allow for the participant to remain as a student, as well as finding the space and time for students to continue their studies while receiving temporary inpatient mental health care.
Program participants are sometimes also challenged by substance abuse issues. One program manager noted that participants sometimes need counseling about the potential impact of their substance use not only on their academic trajectory but also for future employment (e.g., the need to pass a drug screening). Another program manager noted that participants have limited work experience and often needed help writing resumes.
The SEd program service array can encompass a broad set of services designed to support participants in reaching their educational goals. According to program manager discussions, the framework for these services often starts with a participant-focused model that helps the participants define their educational and/or employment goals. Supports are then built around the participants to provide the services that they will need to accomplish their goals. Several respondents reported that an essential component of the participants' success in the program was remaining participant centered, and designing the services the participants need around their individual educational and employment goals.
As noted in the literature review, there are several potential components to a SEd program service array. Respondents to the environmental scan spent the most time describing three aspects of their programs:
- Academic support;
- Outreach to other service providers and potential program participants; and
- Peer support.
Academic support services described during the environmental scan discussions included assistance getting into school, working with teachers/professors about individualized accommodation needs, tutoring, using assisted technology to support disability needs, providing knowledge and instruction about skills needed to succeed in college (e.g., study skills, note-taking, time management), assistance withdrawing from classes, and assistance obtaining and maintaining financial aid. Program managers also described more generalized services that extended beyond academic skills to provide support for individual barriers that might affect the participant's ability to reach his or her educational goals (e.g., medication management, housing, transportation).
The outreach services described by program managers included connecting with organizations in the community about the services provided by their SEd programs, as well as outreach to students who could be potential program participants.
Program managers often described peer support as an important component of SEd services: someone who has "been there" provides participants with peer-to-peer feedback about their progress. For example, in the Quinsigamond Community College program, peer mentors were students who had previously received SEd services, were in recovery, and were succeeding in school. These students had mentoring relationships with two to three students and worked 8-10 hours per week. Despite these reports, peer mentors were also described by respondents as a frequently cut service component because of funding concerns. Less common services described by respondents included cognitive training, aerobic exercise, and working with family members.
Programs providing SEd services were often described as including a team of staff members who provide program management, wellness support, and case management. Support staff team members named by respondents included program directors, peer mentors, nurse practitioners, social workers, psychologists, psychiatrists, counselors, occupational therapists, case managers, and SEd and/or SE specialists. Most teams were described as including 3-5 of these staff members who worked part-time or full-time within the individual program. Depending on the program setting, most programs had multiple case managers who served a range of participants in the program, with anywhere from ten to 25 participants per case manager depending on the program. The range of participants served appeared to be determined by program requirements to maintain staffing ratios. But some program managers noted having to reduce the number of case managers (and consequently increase caseloads) because of funding shortfalls. Program managers described the educational level of staff members on the service team as typically BA or MA level or with equivalent work experience, depending on the specific position. For some programs, regardless of educational background, team members received additional training in the IPS model, resiliency training, or positive psychology.
The dedicated staff member providing SEd services was called either a SEd specialist, SE specialist, SEd and SE specialist, or an IPS specialist. When a program had only an SE specialist, the specialist also provided SEd services (again noting that participants often have educational goals along with their employment goals). The majority of programs had a full-time staff member in this position. For some programs, this full-time status was considered an essential service component and was required as a part of their service delivery model. Meanwhile, although respondents described it as ideal to have a full-time dedicated SEd specialist, some admitted that it cannot always be a reality. One program described training a whole service team in the IPS model because it could no longer support a dedicated program staff member. This program had one lead team member who was an expert in SEd and championed this approach throughout the team. She provided ongoing training to all staff and gave all program psychiatrists a book on the IPS model. Even with this approach, the program manager noted that the model suffered without a dedicated SEd staff member on the team.
4.3.2. Service Setting
Program Differences by Setting
Environmental scan respondents indicated that when SEd services were provided on a college campus, they tended to be a SEd-only focused program. For example, Delaware's Division of Vocational Rehabilitation provides SEd services in partnership with its community college system to all students with disabilities. Program staff are housed directly within the college systems and do not provide employment supports. Other respondents from state VR departments and the VA system described the provision of both SEd and SE services. Respondents who represented programs embedded within mental health agencies described the most variation in their SEd program service array. Some provided SEd services within their SE program, others provided SEd and SE services separately but with equal importance, and others provided SEd services alone.
One researcher mentioned that hospitals are another promising setting that have historically provided SEd services. She indicated that this setting does have limitations in terms of the students being able to leave the hospital campus; however, she thinks this setting holds promise for a focus on pre-college academic skills and skills to manage the demands that might be encountered during the transition to a campus setting.
More information on respondents' thoughts about service setting implications for SEd program implementation are discussed further in Section 4.5.3, Program Implementation across Service Settings.
Integration of Supported Education and Supported Employment
Most program managers reported that their programs used an IPS model. IPS is an evidence-based SE service model that aims to help individuals with mental illness gain and maintain employment. It is an approach to VR designed specifically for individuals with mental illness grounded in the philosophy that all individuals with mental illness are capable of working in the community. Many environmental scan participants described the IPS model as an example of how SEd services should be provided; that is, by integrating SEd services with employment services. Respondents described the SEd service array as fitting well within the IPS model. Respondents noted again how commonly participants move between primary education and employment goals and their sense that it is better to keep individuals with the same program and provider(s) throughout these shifting goals. One researcher believed that SE and SEd services could be combined, but it should be done as part of a team approach. She thought that the SEd service component should be provided by one dedicated staff member explicitly focused on education supports within this larger team.
Some respondents did raise concerns about the integrated SEd/IPS service model. These respondents noted some philosophical differences between the two models. For example, one respondent noted that the IPS model may push people into rapid employment. In a more traditional SEd model, participants are encouraged to have some work experience before finishing school, but they are also supported to leave employment for further continued education. The respondent commented that participant employment goals can vary--they can be simply to get work experience or be more targeted toward longer-term employment in a specific career field. These different employment goals likely have different paths with varying educational needs. Also, in a similar example, another respondent noted that it is against the IPS model to build employment skills through volunteer work, yet this respondent believed it was important to encourage these types of volunteer opportunities as steps toward self-confidence and pre-employment skill building. These volunteer experiences were seen as valuable to building a work portfolio but contrary to SE aims of rapid employment.
4.3.3. Primary Partners for Program Implementation
SEd program implementation includes partners with other organizations that enhance, support, and expand on the educational support services provided. Those partnerships include ones that benefit the participants directly, as well as partnerships that ease and facilitate program implementation. Common partnerships mentioned by environmental scan respondents included mental health agencies, veterans services, group homes, clubhouses, VR, hospitals, and schools. The UCLA Aftercare Research Program noted that its partnership with their department of VR was very beneficial in that it provided assistance with the cost of education for participants in trade schools and for specific job skills. Another key partnership respondents mentioned was with college campuses that offered tutoring programs, mental health services, an office for disability services, career services, and campus faculty.
A few program managers mentioned partnerships that do not directly support participant needs but instead ease and enhance SEd program implementation. One program described its participation in the Early Assessment and Support Alliance (EASA) on the West Coast. EASA makes up a state network of programs providing SE and SEd services. EASA provides individual programs with resources on implementation and quality assurance guidelines. Another respondent mentioned the OnTrackNY program on the East Coast that brought in consumer expertise to train its providers to be more participant centered, be more comfortable with rehabilitation language, and have a greater focus on helping participants access disability benefits. Respondents valued staff training and access to program implementation resources in the midst of program management.
Several program managers noted missing partners as well as challenges with building needed partnerships. Although most programs partnered with general or psychiatric hospitals, these partnerships tended to focus on participant referrals. Some respondents lamented that a higher level of partnership with psychiatric hospitals and specialty mental health treatment providers would be helpful in supporting participants while in the SEd program. One respondent commented that the participant's status as a student should be more frequently considered by mental health providers as they make treatment decisions. For example, she suggested that providers might consider postponing midsemester medication management changes unless they were absolutely necessary. Or, hospitals could make it easier for a student to remain a student even during an inpatient hospitalization stay during the semester. Respondents believed that not accounting for a participant's student status sometimes led to the derailment of educational progress. Better partnerships with hospitals and doctors, including primary care physicians, could increase positive outcomes for participants. Respondents noted, however, that these partnerships take time to develop. The biggest challenge identified by several respondents was the time necessary to establish real partnerships with the diverse array of providers and service programs necessary to coordinate and meet participants' needs. They mentioned that funding barriers often do not allow for sufficient time to be devoted to building and sustaining these partnerships.
Complications and difficulties associated with SEd program financing were common themes across all of the environmental scan discussions. Environmental scan participants described multiple funding streams used to support SEd service components, but there did not appear to be one, single strategy to fund SEd services. In the absence of a core funding strategy, programs draw from many different funding vehicles that vary in terms of their stability and sustainability. To highlight the variability in financing strategies across programs, some programs' specific service funding approaches and some funding challenges experienced are described as follows.
One program respondent indicated that their program was almost exclusively supported by research grant dollars. Research grant funding enabled this program to provide its services free of charge to participants. This program had a long history of strong university partnership and relatively consistent research grant funding. However, the program manager described difficulties associated with this research funding reliance. She noted that the funding agency priorities changed over time; successful grant applications, consequently, had to change foci to meet the funding agency's priorities. Successful grant applications test something new or adapted; once a particular approach has demonstrated positive outcomes, the researcher has to move onto another viable funding idea. This program manager felt that relying on research grant dollars forced her program's service model to shift slightly over time. She believed that the economic and funding issues were dictating the level of care. Also, to compensate for the sporadic grant funding, this program was actively seeking funding from donors and endowments.
Block Grant Funding
Another program largely received its funding from its state's SAMHSA Community Mental Health Services Block Grant. Individual sites then secured various types of grant funding to support the portions of their programs not reimbursed through the block grant funds. The respondent described that one SEd program site within his state had a SAMHSA Healthy Transitions grant; Enhance OnTrack provided funding for two other sites through its block grant. A fourth site received a smaller amount of state reinvestment grant dollars to pay for SEd staff and training. The individual program site models were shaped by the various discretionary grant funding priorities.
Strategies to promote positive educational and employment outcomes for individuals with SMI can be supported through state VR agencies. State VR agencies are designed to promote the employment of people with disabilities. When creating an Individualized Plan for Employment, VR will consider providing any service needed to achieve an agreed-upon vocational goal. This service can include payment for education or training, including college tuition and related supplies. Consequently, VR funding can be one way to support SEd services. For example, Delaware's Department of Vocational Rehabilitation funds SEd-type services for all students with disabilities served by their technical college system. As a stakeholder from Delaware described, the students served by the Delaware program do not typically have a primary mental health diagnosis. However, she mentioned that several students have secondary mental health problems, but their SEd service model is not intrinsically designed for students with psychiatric disabilities. Funding for these services come exclusively from VR dollars. These dollars support both VR transition counselors (housed at the vocational-technical college) and college counselors.
One respondent indicated that VR dollars are very attractive to her program because they have a very high federal match rate, which is a "huge incentive to find ways to capitalize on these dollars." However, as another respondent described, VR funding is not intended to provide the longer-term educational services and supports often needed by individuals with psychiatric disabilities to truly attain an educational goal. He commented that VR-funded services have to be more geared toward education needs that are very explicitly directed at facilitating employment. A few respondents who discussed VR funding for SEd services appeared to recognize that these dollars would have to be supplemented by other funding sources, especially for those needing longer-term support, such as individuals with SMI.
College or University Support
SEd programs often function in partnership with technical colleges or other university systems. Many respondents noted that their college partners valued their services. They sometimes described colleges providing office space, for instance, for education specialists. One respondent did describe a shrinking budget climate for the higher education institutions in their state, making it a difficult fiscal climate for SEd program support. On the other hand, one program was directly funded by its college partner. This program had experienced more than 15 years of funding through community mental health; however, the funding ended. At that point, the program found a new home by integrating the SEd program into the college-based disability services program. Now the program manager's position was funded through the college, and the college paid for tutoring services. This program manager indicated that the college tried to reimburse itself for these services through discretionary grant funding.
Veterans Health Administration
Many veterans also have behavioral health conditions. Consequently, many GI Bill enrollees suffer from war-related traumas and other behavioral health problems that can create significant challenges in the pursuit of their education. To stay on track for achieving their educational goals, these veterans likely need appropriate and accessible supports such as those offered by SEd. Two different respondents noted a sense that the VHA is aware of this problem and is a promising funder for SEd services. One respondent noted that SE is nationally implemented in the VHA. Also, because the VHA has a strong history of incorporating SE into its health care services, it could be a platform for more widespread SEd implementation.
Many environmental scan respondents noted that their programs bill Medicaid to support relevant services wherever possible. However, as one respondent noted, billing Medicaid requires the successful defense of services as a "medical necessity." This criteria is not always a good fit with many SEd services. Respondents noted that their programs were most frequently able to bill Medicaid for the case management function involved within their SEd programs.
Many respondents noted the difference between SE Medicaid billing and that for SEd services. They were aware that Medicaid did have a specific SE billing code and often described SE funding as "well established." In fact, programs with a joint SE/SEd program described billing SE/SEd specialists under the Medicaid SE billing code. Meanwhile, several respondents stated that funding for SEd was unclear, largely because SEd had no Medicaid billing code. One respondent believed that it might be hard to get approval for a SEd Medicaid code. She suggested that most funders want to see evidence of direct program impact; however, demonstrating the most critical outcome for SEd programs (degree attainment) often takes multiple years. This respondent believed that it is hard to solicit funding for SEd when there is such a lengthy time lag between the preliminary SEd program intervention enrollment and its ultimate primary outcome of interest.
Federal participants in the environmental scan described the availability of 1915(c) waivers to support "employment and employment related services." According to the September 16, 2011, Center for Medicaid and CHIP Services (CMCS) Informational Bulletin, SE and "prevocational services may be furnished...under the provisions of §1915(c)(5)(C). They may be offered to any target group for whom the provision of these services would be beneficial in helping them to realize their goals of obtaining and maintaining community employment" (CMCS Informational Bulletin, September 16, 2011). Within this Medicaid provision, there is an SE-Individual Employment Support core service definition. SE-IES services are defined as "the ongoing supports to participants who, because of their disabilities, need intensive ongoing support to obtain and maintain an individual job in a competitive or customized employment, or self-employment, in an integrated work setting in the general workforce for which an individual is compensated at or above the minimum wage, but not less than the customary wage and level of benefits paid by the employer for the same or similar work performed by individuals without disabilities. The outcome of this service is sustained paid employment at or above the minimum wage in an integrated setting in the general workforce, in a job that meets personal and career goals." This is the SE Medicaid billing opportunity referred to by several SEd program managers who participated in the environmental scan. No comparable waiver or core service definition exists explicitly for SEd services.
Federal officials who participated in the environmental scan also described the possibility of using Medicaid reimbursement to cover the costs of educational services through the 1915(c) Home and Community-Based Services waiver option. However, CMS stakeholders also emphasized that Medicaid is intended to be the "payer of last resort." Medicaid dollars are intended for services that cannot be supported by other sources. So, consistent with that, the core definition of the Home and Community-Based Services waiver option states a requirement that "educational services consist of special education and related services [as defined within] the Individuals with Disabilities Education Improvement Act (IDEA), to the extent to which they are not available under a program funded by IDEA." For example, if transportation between a participant's home and an education services site is provided as a component of a 1915(c) request, and a state proposes the cost of this transportation to be included in the Medicaid rate paid to the providers of education services, the state has to include a statement indicating that these transportation costs are not already covered by IDEA.
Stakeholders from the U.S. Department of Education contacted through the environmental scan confirmed that IDEA supports education services for individuals up to 21 years of age. However, the SEd program managers did not describe use of Medicaid waivers to reimburse for educational services. It appears that SEd program stakeholders find funding for education services for individuals older than age 21 (and consequently outside the context of IDEA) more challenging.
4.3.5. Federal and State Policy Context
Several environmental scan respondents referenced the Americans with Disabilities Act (ADA) as the guiding and framing policy for SEd work. The ADA philosophy emphasizes respect for the privileges of all students and enables the provision of necessary education and workplace accommodations. Consequently, respondents felt that it is the ADA law that promotes a philosophy of inclusion for individuals with psychiatric disabilities. However, a few respondents also emphasized that ADA accommodations, particularly on college campuses, are still traditionally focused on physical disabilities (or maybe learning disabilities), with much less emphasis on psychiatric disabilities. These respondents noted that dealing with students with SMI is hard for the staff of disability service offices on college campuses. There was a sense among respondents that staff in these offices often lack a solid understanding of how to accommodate psychiatric disabilities. One respondent mentioned that the episodic nature of psychiatric disabilities is more difficult to accommodate than typical physical disabilities. Psychiatric disabilities often require inter-personal supports at various levels of intensity over time, rather than explicit and often more stable accommodations (e.g., ramps, allowance for animal support partners in buildings, computer support tools for physical impairments). So, although ADA may be the guiding policy for SEd work, some respondents sensed that its philosophy was not being fully embodied for all students with disabilities across typical college campuses.
A policy related to the ADA is IDEA, which is a law that ensures services for children, adolescents, and young adults with disabilities across the United States. IDEA governs how states provide special education and associated services to students aged 21 years or younger. IDEA Part B supports special education services for children and youth aged 3-21 years. Individuals who qualify for IDEA services receive an IEP that describes the types of public special education services that those individuals are eligible to receive. Progress toward meeting educational goals is assessed and measured routinely within the context of the IEP.
Another relevant policy associated with SEd program implementation and mentioned by respondents was SSI. Program manager responses differed in terms of how SSI influenced their SEd program implementation. For instance, one manager indicated that her program tries to steer participants away from getting SSI in order to keep them focused on employment or educational goals. Meanwhile, another program manager noted that one difficulty of program implementation was tracking participant hours worked to ensure that students did not work so much that they risked losing their SSI or Social Security Disability Insurance (SSDI) benefits. There are likely real tensions between the perceived risks of facilitating participants' long-term dependence on SSI for income versus the immediate financial needs that many SEd program participants face that might be eased by SSI/SSDI support.
Several respondents mentioned expanding federal and state interest in transition-age youth and early intervention services for individuals with SMI. For instance, a program manager from Oregon specifically mentioned this state's interest in transition-age youth and early intervention services for first-episode mental illness. Her program was trying to work with the state to consider various requirements for insurers to provide early intervention services along with potential regulations and service provision recommendations. This increasing emphasis on the transition-age population and early intervention can also be seen in recent changes to some federal funding priorities, including changes noted in the Workforce Innovation and Opportunities Act (WIOA) and SAMHSA's Community Mental Health Services Block Grant program.
Workforce Innovation and Opportunities Act
State departments of VR are funded by federal dollars that require a state match. These VR dollars can support some education-related costs for individuals with disabilities (e.g., tuition, books), provided that the education is necessary to achieve a longer-term vocational goal. The traditional VR service population has been mature adults (typically with schooling completed). However, the recent reauthorization of the WIOA changes how states are to spend VR dollars. The revised WIOA indicates that a portion of state VR dollars should be allocated for pre-employment services for transition-age individuals (specific ages are defined by states but are typically 15-21 years). Although this law does not reference SEd specifically and is not designed explicitly for SEd service support, one other stakeholder indicated that changes in the WIOA reauthorization may represent an opportunity for SEd service funding support by states in the future. This stakeholder indicated that her state is now thinking about how to serve students with disabilities earlier, before high school completion, with a renewed focus on career exploration, internships, self-determination counseling, and college preparation supports.
Serious Mental Illness Early Intervention Set-Aside in SAMHSA Community Mental Health Services Block Grants
A respondent noted one potential opportunity to expand SEd services: the new 2014 SAMHSA Community Mental Health Services Block Grant priority focused on early intervention for individuals with SMI. In 2014, Congress directed SAMHSA to require that states set-aside 5% of their Community Mental Health Services Block Grants to address the early intervention needs of individuals with SMI. A priority described by SAMHSA is for early intervention strategies to reduce the likelihood of long-term disability that people with SMI often experience. The block grant dollars are intended to help states supplement Medicaid, Medicare, and private insurance funding to provide prevention, treatment, and recovery support programs. States are encouraged to consider evidence-based practices such as Coordinated Specialty Care (a model supported by the NIMH-funded Recovery After an Initial Schizophrenia Episode [RAISE] research initiative) and OnTrackNY (one of the programs included in the environmental scan discussions). This block grant opportunity could support early intervention services including SEd or SE service components.
4.4. Supported Education Research and Evaluation
To supplement information gathered from the literature review (see Chapter 3), environmental scan respondents were asked to describe ongoing research and evaluation projects--the scope of these projects, early findings (when available), the types of data collected, challenges and solutions to data collection problems, and funding for SEd research and evaluation. This section describes some of these ongoing research projects and manuscripts noted as in press by authors. The list is not exhaustive; it represents only those studies explicitly mentioned by environmental scan respondents.
4.4.1. Ongoing Research Projects and Manuscripts in Press
SEd researchers were queried by email about ongoing research projects and manuscripts in press with a focus on SEd. In response to this email request, Drs. Smith-Osborne, Mueser, and Manthey sent information about work in progress, as well as papers in press or under review.
The Student Veteran Program involves ongoing research led by Dr. Alexa Smith-Osborne. One current project is a RCT of undergraduate student veterans. The Student Veteran Program is open to any veteran and offers free, specialized admissions and counseling services. Preliminary program data indicate that 50% of the sample has a diagnosis of PTSD. The primary goal of the program is dropout prevention. Support services last for two semesters and involve both face-to-face and distance support to veteran students. One unique component of the program is the use of teleherence as part of the case management model. Teleherence provides automated scheduled calls to program participants for appointment reminders, to broker external services, and to provide booster or motivational messages to support goals and encourage actions toward participant change. New veterans are being enrolled in the program through 2015. Outcome data have not yet been analyzed to determine whether the SEd intervention can be effectively adapted for veterans with mental health issues.
NIMH's RAISE initiative focuses on the development and evaluation of first-episode treatment programs designed for the United States health care system. The premise of the NIMH RAISE Early Treatment Program (ETP) was to combine state-of-the-art pharmacologic and psychosocial treatments delivered by a well-trained, multidisciplinary team to significantly improve the functional outcome and quality of life for first-episode psychosis patients. An article currently in press in the Journal of Clinical Psychiatry (lead author Dr. John Kane) presents information on the overall development of the core RAISE intervention and the design of the clinical trial to evaluate its effectiveness (Kane et al., 2015). The RAISE study enrolled patients 15-40 years old with a first episode of schizophrenia, schizoaffective disorder, schizophreniform disorder, psychotic disorder not otherwise specified, or brief psychotic disorder and a history of no more than 6 months of antipsychotic medication treatment. Patients were followed for a minimum of 2 years, with major assessments conducted by blinded, centralized raters using live, two-way video. Thirty-four clinical sites in 21 states were selected for participation; 17 were assigned to the experimental treatment and 17 to usual care. Enrollment began in July 2009 and ended in July 2011 with 404 total subjects enrolled. Results of the trial will be published separately at a later date.
Another paper in press in the journal Psychiatric Services (lead author Dr. Kim Mueser) describes the background, rationale, and nature of one intervention developed by the NIMH RAISE ETP project, the NAVIGATE program. This article has a particular focus on the psychosocial components of the NAVIGATE program. NAVIGATE is described as a team-based, multicomponent treatment program designed to be implemented in routine mental health treatment settings and aimed at guiding people with a first episode of psychosis (and their families) toward psychological and functional health. One component included in the approach is SEd. NAVIGATE is currently being compared in a cluster RCT with usual community care as part of the NIMH-funded RAISE research project.
Dr. Trevor Manthey and his colleagues have a paper under review that examines the characteristics of more than 1,500 clients with psychiatric disabilities receiving community mental health services. Logistic regression analyses were used to measure the impact of various sample demographic characteristics on higher education outcomes. Significant differences were found for gender, age, race/ethnicity, diagnosis, work history, and substance use. Clients with bipolar disorder or major depression had greater odds of having a higher education than those diagnosed with schizophrenia. Clients with a recent work history were five times more likely to have higher education. Individuals who do not use illegal substances were more likely to have higher education.
Dr. Manthey and his colleagues have a second paper under review that explores the educational goals of a small sample of individuals with psychiatric disabilities who did and did not want to return to school. Concerns about returning to school noted by both groups of students were teachers' lack of understanding of mental illness, lack of professional support, experiences with stigma, and financial burden. Individuals interested in returning to school were more likely to have a drive for education and love of learning, greater familial support, and greater perceived support from case managers than those without an interest in returning to school.
Other ongoing research projects were briefly described by the researchers who participated in the environmental scan telephone discussions or by the NIDRR project officer. These projects include the following:
A recently completed RCT of SEd led by Dr. Mark Salzer at Temple University, with Michelle Mullen at Rutgers University as a collaborator. This project was supported by NIDRR. Outcomes from the study have not yet been published.
A NIDRR/SAMHSA-funded research and training center (Transitions RTC) directed by Dr. Maryann Davis at the University of Massachusetts Medical School. The Transitions RTC activities are focused on developing knowledge for and about developmentally appropriate services that help transition-age youth and young adults with serious mental health conditions successfully complete their schooling and training and launch their adult working careers.
Two ongoing projects led by Michelle Mullen at Rutgers University: (1) a project to develop a cognitive remediation training manual to improve executive functioning in the context of an IPS approach; and (2) a NIDRR-funded project being conducted in collaboration with Dr. Marsha Ellison at the University of Massachusetts Medical School. This grant is examining a career development approach for transition-age young adults. The grant will involve a literature review, qualitative interviews, manual development, and program testing.
An ongoing NIDRR grant to Dr. E. Sally Rogers at Boston University examining participant employment and education outcomes resulting from a SEd/SE service model. One component of this project will be conducting qualitative interviews with providers. This grant is co-funded with SAMHSA.
4.4.2. Funders for Supported Education Research and Evaluation
Three funders for SEd research and evaluation were described by environmental scan respondents: NIDRR, SAMHSA, and NIMH. NIDRR was currently funding the most SEd research, sometimes with co-funding from SAMHSA. The NIDRR project officer indicated that her organization had supported grants focused on SEd since 1995. These grants are largely funded via the NIDRR "field-initiated research project" mechanism. This mechanism supports 3-year projects that are most typically investigator initiated but can sometimes be guided or directed by NIDDR.
Program managers who participated in the environmental scan also noted grant support from SAMHSA for SEd program evaluation through Now Is The Time Healthy Transitions grants. This grant program is designed to create access to treatment and support services for youth and young adults aged 16-25 who either have, or are at risk of developing, a serious mental health condition. Grantees are asked to increase service awareness, screening and detection, outreach and engagement, referrals to treatment, coordination of care, and evidence-informed treatment for this age group. All grantees are required to have a local evaluation.
The NIMH project officer who participated in the environmental scan indicated that NIMH has funded SEd research in the past but has no grants currently focused exclusively on SEd. NIMH is funding the RAISE initiative, which examines the impact of an early intervention approach that includes elements of SEd. The NIMH project officer noted her agency's specific interest in treatments to remediate symptoms associated with early psychosis.
4.4.3. Primary and Administrative Data Used in Research and Evaluation
According to researcher respondents in the environmental scan, data capturing the outcomes of SEd programs largely come from specific program evaluation measures and scales designed to capture project-specific outcomes. These measures generally capture educational outcomes, employment outcomes, and, depending on the program, mental illness symptomology and measures of wellness or life satisfaction and quality. Researchers noted indicators of educational and employment outcomes, along with standardized scales, such as the Quality of Life Scale, Recovery Achievement Scale, and the Brief Symptom Inventory.
College transcripts were mentioned as an administrative data source. They could be used to measure a number of academic milestones, including the number of classes in which a student is enrolled, GPA, course completion, and progress toward degree attainment.
Data Source Challenges and Solutions
There was not consensus about which sources of data are best suited to represent SEd program outcomes. Some respondents believed that this was due to the breadth of SEd program goals. One researcher commented that it is unclear whether the primary goals for SEd programs are educational attainment, employment, reduced psychological symptoms, increased life skills, or life enrichment. This presents a challenge to the use of central, standardized measurement protocols that might be used to assess SEd program impact across studies.
Respondents expressed a desire to collect objective, standard indicators of educational attainment, particularly information contained in student records and transcripts. Unfortunately, a few researchers described difficulties in collecting college transcripts. First, permission needs to be obtained directly from the student to collect this information (a third party cannot request it directly). Then, colleges sometimes hold transcripts until all of a student's outstanding fines are fully paid (i.e., parking tickets, library fines, tuition). One project has students complete transcript request forms at the point of program entry, and the project then directly submits these transcript requests. Finally, some college systems use clearing houses to process transcript requests. Respondents indicated that this third-party relationship makes access to student records and transcripts even more difficult.
Collecting data directly from the program participants can also be challenging, particularly when attempting to follow respondents several years after program involvement. To get around the barriers of collecting long-term follow-up data, one researcher noted using 5 years of retrospective data to capture information on educational, employment, and psychological history. This information was used to demonstrate how program participant outcomes had improved. Another approach described to increase participant response rates was to offer multiple modes of data collection administered outside of the SEd program. Some respondents noted that they collected data over the phone, using web-based instruments, and, in keeping with their community-based model, during meetings with participants in the field to complete outcome measures.
4.5. Perceived Gaps in the Supported Education Knowledge Base
Researchers, program managers, and other stakeholders all described perceived gaps in the SEd knowledge base. These gaps fell into three areas: gaps in agreed-upon definitions of SEd programs and goals, gaps in knowledge of how to implement and fund SEd programs, and unanswered research questions related to program outcomes. Comments from respondents to the environmental scan are summarized across these areas as follows. These comments set the stage for issues to be considered as future SEd program development, research, and evaluation work moves forward.
4.5.1. Supported Education Program Model Definition
Despite having common knowledge of SEd service components, almost every environmental scan respondent mentioned the need for increased SEd program definition. For example, when asked about unanswered research questions, one respondent replied, "Supported education--what exactly is it?" Respondents felt that there is no one commonly agreed-upon and well-validated SEd model. The development of such a model may have been hindered by the now limited relevance of early research on some types of SEd programs. Much early research on SEd focused on standalone classroom-based models; however, several respondents noted that this classroom-based model is now considered antiquated and is no longer consistent with current values around inclusion. Consequently, outcomes from this early line of research are now of only limited value.
Many respondents noted an increase in the use of integrated SE/SEd approaches in the field; however, a similar program definition limitation was noted here. Several respondents described the need to develop a truly integrated SE/SEd program model. Although many programs are attempting to integrate SEd into SE or IPS models, there are no guidelines for this practice that explain how this process should be managed most effectively. For example, one respondent commented that researchers and program managers increasingly have the sense that it is helpful to have separate staff in combined SEd/SE programs focused on education versus employment supports. Some lessons learned have indicated that shared responsibilities may lessen program effectiveness. However, this is largely based on anecdotal evidence in the absence of empirically derived program model guidelines.
Along with a lack of specificity in program definition, some respondents also perceived needs to make the goals of SEd more clear as well. As one researcher respondent commented, what is the ultimate goal of SEd programs--is it employment? Reducing psychological symptoms? Increasing life skills? This researcher pointed out that some in the field would argue that the goal of SEd is also to enrich participants' lives, not just to facilitate ultimate employment. Also, he mentioned that many participants comment about the fulfillment and personal growth associated with completing educational goals. But how do researchers measure and quantify this type of outcome, then integrate those findings into program definitions?
A final issue emerged during the environmental scan that also relates to program definition; this issue has to do with some perceived artificial separations that have developed over time between SEd and other specialty mental health treatments, as well as SEd and SE. Starting with SE, one program manager and researcher described a sentiment expressed by other respondents. She noted that the "artificial" separation between SE and SEd was an "artifact of our history" and a mistake. She went on to describe what is also summarized in the SEd literature; many participants have both education and employment goals and often move back and forth between these goals over time. This researcher/program manager indicated that a preferred model would be focused on career development in which educational and employment goals are tailored to a participant's age and developmental stage. However, definitions for this type of model would be even further from development than those for either SEd or SE separately.
Another "artificial" separation some respondents described was the consideration of SEd services as separate from other specialty mental health treatment. A few program managers expressed frustration that SEd programs and services were not routinely defined as core components of integrated specialty mental health treatment, particularly for individuals with SMI. This issue most often surfaced during discussions of SEd funding. One program manager explicitly stated that SEd services should not be considered (and funded) separate from other standard mental health services, but she noted that they are treated very separately in terms of billing. This same program manager commented that there is also a discrepancy in terms of funding longevity. SEd programs typically cover and support services for the participant's program participation for approximately 2 years, but many participants really need services for much longer. In that instance, programs face a situation in which SEd funds end, but traditional specialty mental health services continue to be reimbursed. There was a general sense among these respondents that considering SEd programs to operate outside of specialty mental health treatment might create inequities in terms of service availability and funding.
4.5.2. Program Model Fidelity
Several respondents in the environmental scan mentioned gaps in the field's ability to track SEd program fidelity and a more general need for user-friendly fidelity measures on SEd. A few respondents mentioned the University of Kansas Supported Education Toolkit 3.0 (Manthey et al., 2012a) as a tool for measuring the fidelity of SEd. However, some respondents either did not know of this toolkit or thought that it did not capture the information necessary for measuring the fidelity of SEd program implementation, particularly with regard to program quality. Another researcher noted that the University of Kansas fidelity tool had not yet been widely tested across programs and that testing was needed. Such testing would allow the tool to be validated and ideally shortened to include essential predictive items.
Another respondent mentioned how helpful it would be to have something more like an "implementation" assessment, rather than a fidelity tool. In this respondent's mind, an implementation assessment would examine the degree to which various SEd program components have been implemented across target agencies and with what type of quality. This respondent thought that guiding program implementation recommendations were as critical to define and measure as core program characteristics.
A secondary issue related to SEd program fidelity that surfaced during the environmental scan was related to the integration of different models and how this might alter program composition and implementation. Different program models for SEd may all have their own core components; one respondent commented that mixing and integrating program models may lead to increased problems in measuring fidelity.
Several environmental scan respondents noted some gaps in knowledge about how best to implement SEd programs across a variety of settings. One researcher, in particular, provided a concise summary of some key implementation challenges experienced in SEd program implementation:
- Lack of clarity about the program model;
- Lack of service funding;
- Poor integration with other services received by the participant;
- Lack of effective mechanisms to provide consistent, ongoing support for participants across settings;
- Difficulties securing buy-in from college campuses; and
- Length of time necessary to demonstrate the achievement of educational outcomes.
Respondents discussed the advantages and disadvantages of various settings within which to embed SEd approaches, along with the types of knowledge needed to inform which settings might be best suited for which types of participants. Respondents had several thoughts about what might work best across settings, as well as unanswered questions that would provide helpful information to guide program implementation.
Vocational Rehabilitation: Many respondents described working with local VR departments and services. Some respondents commented that VR departments and programs are likely seeing more individuals diagnosed with mental health conditions. VR generally appeared to be perceived as a natural and important partner for implementing SEd services. However, some respondents commented that VR services may not be well positioned to provide longer-term support services; longer supports may be necessary for serving individuals with more SMI.
Campus-Based Disability Services: Respondents also described the importance of partnering with college campus-based disability offices. This service setting was perceived as a good nonstigmatizing way to engage students. Respondents described the advantages of combining SEd services under the umbrella of college disability services because students often have more than one disability. The team-oriented approach used within college disability service offices might enable better communication about the different services that each student may need. One program manager of a campus-based SEd program mentioned this location as a huge benefit. She believed that it reduced the redundancy of work conducted by campus personnel and increased the teamwork between on-campus programs and staff as they worked to provide comprehensive services for the student. One researcher mentioned that college campuses would be the ideal location for "pure" SEd-only programs (as opposed to those combined with SE). Meanwhile, that same respondent also indicated that a campus-based setting is likely not best suited to serve students with SMI.
Clubhouses: The clubhouse service setting is set up to focus on individuals with psychiatric disabilities, particularly those with SMI. This could be attractive in offering peer support to pursue educational goals. However, a few respondents indicated that some students might see clubhouse-based SEd services as stigmatizing because participants often want to identify themselves as "students" and not "patients" or persons with a psychiatric disability.
Community Mental Health: Community mental health treatment systems offer potential for a central, integrated model for providing comprehensive mental health treatment. One researcher believed that the community mental health setting is likely the best setting within which to implement a SEd/SE model. This location, in his opinion, is the best setting for managing and coordinating the diverse needs of individuals with SMI (such as supporting individuals with first-episode psychosis).
Some unanswered questions related to SEd program implementation that respondents described included issues related to SEd program participants, staffing, services, and collaboration:
- How long should participants be enrolled in SEd programs?
- What are the most appropriate populations to be targeted for receiving SEd services (e.g., specific diagnoses, functional severity, developmental life stage)? Should programs accept all interested persons or have explicit eligibility criteria?
- What types of staff are best suited to provide SEd services? What types of skills should be required?
- Can SEd services be provided by any staff member on a service team, or should they be provided by a staff member dedicated for this purpose? Can that role be combined with the staff member who is also providing SE services?
- How many hours should an educational specialist work? Should they be full or part time? How many hours should they be in the office versus out in the community?
- What is the role of peer support in SEd programs? Can peers serve in an educational specialist role? For what roles are peer support paraprofessionals best suited?
- How should SEd services be integrated into other services that a participant may be receiving? Is there a particular order or sequence of treatment components in an integrated model that is most effective?
- What types of SEd programs are best suited for implementation in which types of service settings?
Community partnerships and collaboration:
- What types of partnerships are needed to successfully support participants in reaching their educational goals?
- How can SEd programs work within communities to create more opportunities for skilled part-time employment? One respondent mentioned that many of her program's graduates would be intellectually capable of holding positions in a career field like biotechnology, but that maintaining full-time (as opposed to part-time) employment would be very difficult.
4.5.4. Research and Evaluation Challenges and Needs
In the midst of the unstructured discussions, environmental scan respondents described several challenges to research and evaluation on SEd programs. The largest challenges to research and evaluation related to problems with the SEd program definition and the more general need for researchers interested in this area of study:
Problems defining and measuring core outcomes of interest:
- Research respondents noted that many studies do not go beyond examining the number of participants involved to really understand whether programs affect any "real educational endeavor."
- There is no clear consensus on how to calibrate achieving an educational goal. Acquiring a GED? 2-year degree? 4-year degree?
- Educational goals and their purpose vary by individual. How do you distinguish and evaluate educational courses taken for the purpose of self-improvement versus those required to define a particular career path?
- Getting good data on the attainment of educational milestones is difficult; academic records are often hard to acquire.
Need for field leadership and champions to push the line of SEd research and evaluation forward.
Need for new, emerging investigators focused on designing rigorous experiments on the impact of various SEd program models.
Some individuals specifically mentioned what they perceived to be missing in the SEd research and evaluation field as well as what specific types of studies they think are needed in the future. The research studies and topics described by environmental scan participants were very diverse and not comprehensive. The recommendations below represent points explicitly mentioned by individuals during the environmental scan unstructured discussions. Individuals noted the need for:
- Studies that follow individuals with mental health problems for several years as they enter school and the workforce. What factors are associated with staying in school through degree attainment and staying in the workforce?
- SEd intervention outcome trials that follow program participants for well over 5 years. One researcher mentioned the potential need to follow SEd program participants potentially for 15 years to truly see employment and mental health service impact. She pointed out that it takes a long time even for successful SEd program participants to finish. Many SEd participants come in and out of services over the course of 5-7 years as they complete their educational goals. In her opinion, it should not be seen as failure that these students take longer than their peers to complete educational goals, but research designs have to accommodate this reality before concluding that SEd programs are ineffective.
- A longitudinal multisite study of SEd programs' impact.
Research on specific SEd models:
- A progressive series of studies to refine one particular promising SEd model. This series would start with a study of smaller scope to test the outcomes of a well-defined SEd model with an emphasis on also developing a strong fidelity scale. Based on the results of this study, the SEd model would be tweaked and refined. Then, the improved model would need to be tested in a larger RCT.
- Research that capitalizes on the progress that has been made in understanding how to implement integrated early intervention programs (that include components of both SEd and SE) for first-episode psychosis. One researcher wondered if there was a way to capitalize on the new funding priority to serve individuals with SMI in SAMHSA Community Mental Health Services Block Grants. Will there be the opportunity to track the type of services supported by this funding (e.g., SE, SE/SEd) and observe outcomes for individuals served by these dollars consistently across states?
- Research on integrating SEd programs into psychiatric hospitals, with a particular focus on pre-college skill building.
Research on program participants:
- Studies that identify what kinds of problems colleges have with keeping these students with mental illness engaged and succeeding in their programs.
- Studies that help illustrate which types of participants can benefit from what type of program emphasis. Do younger participants in their teens and early 20s benefit more from a stronger educational focus, whereas older participants benefit more from a stronger employment focus?