In the United States, approximately one in every 68 children receives a diagnosis of Autism Spectrum Disorder (ASD) (CDC, 2016): this translates to approximately 2,400 high-school students in Connecticut (U.S. Department of Education’s National Center for Education Statistics, 2016). Each of these students has had a statement of needed transition services included in their Individualized Education Plans (IEP) since their 13th birthday, as required by the Individuals with Disabilities Education Act (IDEA, 2004). Measurable postsecondary goals are required to be developed with student and parental input and included in the IEP for transition-age students. The law emphasizes the importance of student and family involvement in establishing goals, objectives and coordination of activities to support post-secondary plans (Cavendish & Connor, 2018).
While IDEA includes language to describe the transition process for students with disabilities to post high school life, it does not formally define transition services (Greene & Landmark, 2019):
Transition services are a coordinated set of activities that promote movement from school to such postschool activities as post-secondary education, vocational training, employment, adult services, independent living and community participation. They must be based on the individual student’s needs, taking into account his or her preferences and interests. Transition services must include instruction, community experiences, and development of employment and other postschool adult living objectives. If appropriate, daily living skills and functional vocational evaluation may also be included. (IDEA, 20 U.S.C. §1401 (34); 34 C.F.R. §300.43).
While the purpose of the IEP is to best support the student in order to excel and transition in their formal secondary education, in reviewing the literature, there is an apparent gap when it comes to planning for and supporting students as they transition after finishing their academic education (Cavendish & Connor, 2018; Greene & Landmark, 2019). It is important to not only individualize a student’s program of study based on their academic capabilities, interests, and preferences, but also on their post K-12 schooling aspirations. Researchers have suggested that adolescents with ASD and/or intellectual disability and their families particularly struggle with the transition to adulthood. Gaining employment, living independently, and participating in community activities are a few of the challenges by which students with an intellectual disability or ASD are farther behind their peers (Blacher, Kraemer, & Howell, 2010; Neece, Kraemer, & Blacher, 2009).
Because special education services and modifications provided under the protection of an IEP are no longer available in post-secondary contexts, it is essential that students with ASD seeking transition to post-secondary environments begin to understand the protections afforded to them by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 (Adreon & Durocher, 2007). Students’ planning and broad communication skills must be developed adequately to support their being able to effectively self-identify, initiate requests for accommodations, monitor the effectiveness of accommodations provided to them, make decisions related to courses and plans of study, and navigate the campus environment sufficient to access a range of services (Hendricks & Wehman, 2009).
Despite years of mandated transition planning and a continued desire to prepare students with ASD for real life, many students continue to experience high drop-out rates, high unemployment, low wages, few job choices, limited relationships and restricted living options. In addition, many students with ASD leave school unprepared to handle simple daily routines such as paying bills, balancing a budget and maintaining an orderly living environment. Given the lack of preparedness among individuals living with ASDs to lead a productive and self-sufficient life, professionals involved in educating such students must systematically and seriously pursue effective transition planning as routine and imbedded practice in schools (Dente & Coles, 2012; Krell & Perusee, 2012; Pena & Kocur, 2013; VanBergeijk, Klin, & Volkmar, 2008).
As a result of the documented need for transition services for students with ASD, Fairfield University (Graduate Special Education Program) and The Kennedy Center have partnered to create a transition preparedness program to address a multitude of social challenges, independent living skills, and self-advocacy for young adults with ASD and/or Intellectual Disabilities (ID) 18 years and older. The purpose of the current article is to describe the structure of this university-community agency partnership including the initiation, structure, sustainability and the various research and practice components of the pilot program.
A team comprised of faculty members of the Special Education program at Fairfield University and Special Education graduate and undergraduate students from various majors, as well as, senior staff of The Kennedy Center partnered and co-led the development, implementation and assessment of this community-based social activity group, Transition Opportunities for Post-Secondary Success (TOPS). This group was established through a collaborative university and agency partnership in order to explore a new transition paradigm for young adults ages 18 to 23 of the greater Bridgeport, Connecticut area with high functioning ASD/ID. Collaboratively, each stakeholder contributed to the various needs of the program. The partnership offered special education graduate students and regular education undergraduate students the opportunity to gain valuable field experience through this unique program offered on the Fairfield University campus. A table outlining the program responsibilities of Fairfield University and The Kennedy Center can be found in Appendix A. In order to provide adequate background and context to the TOPS program, it is important to define each partner along with the rationale and motivation for this partnership.
Fairfield University Special Education Graduate program. Fairfield University is a modern Jesuit university whose mission is based on social justice with strong values based on the appreciation of diversity and obligation to the wider community by educating its students to be socially aware and morally responsible persons. The complete mission can be found at: (https://www.fairfield.edu/about-fairfield/mission-values-history/). The program in Special Education is housed within the Graduate School of Education and Allied Professions (GSEAP). The primary objective of the GSEAP at Fairfield University is to educate and train professional educators to serve children and youth who have exceptional challenges and require specialized educational, social, cognitive, rehabilitative, and/or behavioral management approaches to attain their maximum learning potential. In line with this primary objective, the Special Education graduate program sees its role as contributing leadership in the areas of theory; assessment; understanding differences among children and youth with disabilities; the development and implementation of curriculum and intervention strategies; the improvement of teacher-teacher, teacher-child, and teacher-parent relationships; and the integration of special education into total school and community-based programs. In order to address these components, it is critical to expose pre-service educators to field work and experiences in schools, home and communities to adequately prepare them for their multifaceted roles in the field. The TOPS program not only aligns with the university and Graduate School’s shared mission of addressing populations who are diverse and/or at risk, it also offers a unique opportunity to graduate students studying to teach students with ASD/ID. The TOPS program also offers undergraduate students seeking community service and field-based opportunities to reach such populations on their university campus.
The Kennedy Center. The Kennedy Center is one of Connecticut’s leading non-profit rehabilitation agencies offering innovative and comprehensive program services to individuals with special needs and disabilities from birth through their senior years. On an annual basis nearly 2,400 individuals in 99 towns across the state receive extensive personalized educational, therapeutic, vocational, rehabilitation, recreational and residential services. The Kennedy Center’s mission promotes the empowerment of individuals with diverse abilities, disabilities, and experiences toward optimal participation and inclusion in the community. While The Kennedy center offers social opportunities to individuals with ASD ages 18 to 23, the agency was seeking to expand the transition options in an inclusive university setting. The TOPS program was initiated with the Special Education Graduate Program at Fairfield University in the Fall of 2017 in order to address this need and engage in a co-beneficial partnership.
Background and Program Initiation
The professional experience of The Kennedy Center indicated a need for an innovative transition program to support significant improvement in the development of critical life skills among young adults with ASD/ID. Additionally, based on feedback from graduate students enrolled in the Fairfield University’s Special Education program, it has been noted that pre-service special educators are not provided appropriate exposure and training in critical topics in the field, such as knowledge about transition services and hands-on experiences working with students with ASD/ID, especially those of transition age. Therefore, the TOPS program was created by faculty from Fairfield University’s Graduate Special Education program and administrators from The Kennedy Center to meet the needs that both partners deemed important and mutually beneficial. After a number of discussion based planning meetings the partners determined that the TOPS program aimed to address a multitude of social challenges and independent living skills for young adults with ASD/ID in order to provide increased self-sufficiency and self-advocacy. Building positive social interactions among peers in the TOPS group and individuals on campus were also central to the program. Collaboratively, each stakeholder contributed to the various needs of the program. Fairfield University focused on pre and post-assessment, data collection, consultation on program development and refinement, and logistical support. The Kennedy Center led curriculum development, implementation and evaluation, as well as critical recruitment of individuals with ASD/ID and the oversight and communication with their families, many of which were ongoing clients of the agency. In addition, Fairfield University offered graduate students in special education and undergraduate education minors to serve both as assistants and typical peer models for the students with ASD/ID. This inclusion component offered a valuable and much needed aspect to the program.
While the TOPS program had a number of successes, there were barriers throughout the first year of implementation. First, coordination among partners such as mutual meeting times to focus on scheduling and curriculum planning was difficult due to schedule conflicts and job demands. Additionally, there was turnover among The Kennedy Center staff after the initial semester. This impacted program planning and implementation of curriculum and the development of appropriate on-campus activities. Because the TOPS program was the first of its kind, outreach, communication, and coordination with campus offices was time-intensive. The faculty spent a considerable amount of time speaking with campus administration and staff for initial and continued buy-in of the mission of the program and logistical support. Therefore, planning time for the second year of implementation is expected to decrease.
The TOPS program was structured according to the Fairfield University semester calendar. Each session met at Fairfield University on Thursdays from 4:30–6:00 p.m. over the course of ten weeks for two sessions throughout the academic year. The program drew from the structured curriculum of The Autism Project developed by The Kennedy Center staff and was refined based on participant needs and input from Special Education faculty and graduate students. The program began with an intake interview for each participant referral to select a cohort of roughly twelve participants. Next, the strengths, abilities, needs, and priorities of the selected group members were reviewed in greater detail and the curriculum was further refined to meet both individual and group needs. Each participant then visited the university once prior to the start of the program. Each week a different campus facility was utilized (i.e. classrooms, gym, cafeteria, library, snack bar/common area, bookstore, and museum) to put learning into practice. These experiences were designed to help build competency in such areas as communication, decision-making, navigating a college campus, accessing resources, money management, time management, personal safety, and self-advocacy. A lesson plan was created for each session and included overall lesson goals, objectives, activities, and home communication. See Appendix B for Table 2 which displays an example of the pilot year fall semester calendars and Appendix C for Table 3 which displays a lesson plan example utilized during a session.
Each week the participants met with a group facilitator from the Kennedy Center as well as at least one Fairfield University faculty member from the Special Education program. In the fall semester, three Special Education graduate students assisted during each session of the program. In the spring semester, two graduate and three undergraduate students assisted in the program throughout the semester. These students assisted in lesson plan implementation as well as overall social interactions and peer modeling for the participants.
Upon initiation of the pilot year of the TOPS program, the following research question was designed: What are the potential barriers to successful post-secondary transition for students with high-functioning ASD/ID? In order to begin addressing this question, an immersive transition experience was developed based on best-practice indicators outlined in Connecticut’s Transition Training Manual and Resource Directory (Connecticut Interagency Transition Task Force, 2004). Perspectives were collected from TOPS participants and their parents. The following steps were taken to gather necessary information in order to address the research question stated above.
- Participants with ASD/ID completed the Perceptions of Educational Barriers Scale-Revised (PEB-R) (McWhirter, 2000) at the beginning of each program session.
- A parent focus group was conducted at the end of each ten-week session in order to gather parent perspectives on program experience, success, strengths and weaknesses.
The pilot program data collection was based on exploratory methods to gather TOPS participant and parent views on overall independence, interests and social competency in the context of post-secondary interests and activities. The PEB-R scale was administered to the TOPS participants at the start and end of the program. Additionally, parents participated in a focus group where they were asked questions about their interests and satisfaction with the program. Their verbal responses were recorded and documented.
Participants were recruited via email notifications and social media by The Kennedy Center. Interested participants had their parent or guardian fill out an application that lists information including: emergency contacts, school and agency contacts, medical and dietary information, cultural considerations, daily living skills, socialization and communication skills, behaviors, accomplishments and strengths, challenges, leisure and recreation interests, and goals that the family would like their child to work on. The Autism Project Manager then met with the applicant and their family for an intake interview. The intake interview included discussion of strengths, abilities, needs, future goals and priorities for each participant and his/her family, as well as a description of the TOPS program. A diagnosis of ASD and/or ID was confirmed by the parent/guardian with documentation. All of the participants have been actively involved in The Kennedy Center programs such as social groups, respite, and special interest activities. Twelve participants attended the TOPS program in Fall 2017 and ten participants attended in Spring 2018. Participants ranged from 18 to 23 years of age. Participants varied in their cognitive and communicative abilities and were challenged with aspects of executive function, social communication, and pragmatic language. Four students attended supported employment during the week while others attended high school transition and life skills programs in specialized schools for students with disabilities. All students either anticipated transition to post-secondary plans in the next 1–2 years or recently transitioned from school to post-secondary experiences 1–2 years prior to enrollment in the TOPS program. All participants live in the greater Bridgeport, Connecticut area. See Appendix D for Table 4 outlining participant demographics.
The PEB-R (McWhirter, 2000) was revised and adapted by the researchers prior to the start of the TOPS program in order to address the cognitive level of the participants. This survey asked participants to rate potential barriers they may face when going to college/training school after high school utilizing a Likert scale. Twelve TOPS participants completed the PEB-R survey. Participants read twelve statements and were asked to rate each statement as not likely at all (1), likely (2), or definitely (3), in regard to being a barrier he/she might face in going to college/training school after high school. For example, 50% of the participants rated not being smart enough as not likely at all. When asked about concern about feeling safe in school, 58.3% reported that it was likely to be a barrier. A complete list of statements and responses can be found in Appendix E, Table 5.
Additionally, participants answered six open ended questions focused on potential barriers to their future plans. When asked about their greatest dreams about the future, responses included: playing basketball, being a drummer in a band, traveling, being a science teacher, owning a store in the mall, participating in a day program somewhere, working, and being happy. A complete list of questions and responses can be found in Appendix F, Table 6.
Parent focus group questions and responses were collected at the end of Sessions 1 and 2. Some parents notes that they decided to enroll their son/daughter in the TOPS program to gain exposure to post-high school life on a university campus and to learn how to handle peer interactions. Parents reported that their son/daughter needed “something to do” and felt the TOPS program provided an opportunity to learn about post-secondary options in a safe and structured environment. One parent mentioned her interest in the opportunity to spend time in an inclusive environment and practice social and life skills. Many parents mentioned the “safe” and “stress free” environment that Fairfield University offered. When asked about which aspects of the TOPS program parents were most interested in seeing emphasized, parents reported the following: wanting the program to be “fun” and “not heavy” yet having “purpose” and not “fluff.” A complete summary of questions and responses can be found in Appendix G, Table 7.
There are a plethora of challenges associated with the transition to adulthood for adolescents with ASD/ID that warrant increased attention in the field of special education (Shogren & Plotner, 2012). Although mandates have been in place to prepare students with disabilities from an early age for their transition from school to post-secondary experiences, the opportunities and supports are limited upon transition from secondary to post-secondary work and academic experiences (Newman, 2007; Swedeen, Carter & Molfenter, 2010). In order to address the limited opportunities for teens and young adults with ASD/ID to practice social and readiness skills related to post-secondary experiences, the TOPS program was developed. The team hoped to observe increased confidence and competence among participants including an uptick in students’ voluntary participation, taking increasing initiative to interact with others, identifying and using resources effectively and on one’s own. Among graduate and undergraduate students, the TOPS program hoped to learn new ways to engage their field experience working on necessary skills for successful transitions for students with ASD/ID and to integrate these learnings into curricula. Additionally, the partnership intended to disseminate findings and make recommendations to support the field and inform program improvement. It was hoped that the program would have additional, broader benefits including raising disability awareness among university students and faculty.
The PEB-R (McWhirter, 2000) was revised and adapted by the researchers and administered to the TOPS participants at the start of the pilot year program. The researchers noted that over half of the participants rated not being smart enough, not feeling safe, and not feeling confident enough as barriers they may face. Therefore, the curriculum and teaching within future sessions plan to address these components by targeting safety through a visit to the campus safety office and staff. In addition, in order to address participant confidence in the ability to succeed academically, a visit and workshop with the office of accessibility on campus is planned for the second program year. While it was the researcher’s intention to administer a post-PEB-R at the end of the pilot year program, upon analyzing the data, a number of concerns were considered.
First, although the scale was revised and adapted to meet the needs of the TOPS program and fit into the context of the participant experiences, the Likert scale in relation to the statement barriers (things that might get in the way) that you might face in going to college/training school after high school may have been difficult for the participants to process and select the rating that best matched their understanding. During the fall session, it became increasingly apparent that the same may need to be further adapted to meet their cognitive needs. We plan to adapt the survey in year two and further consider additional research tools. However, the qualitative open-ended questions provided insights that were valuable for program research and development. When participants reported their greatest fears, many indicated lack or limited social opportunities and not being able to succeed at their dreams. Additionally, when asked about what kinds of support would be needed to accomplish their goals, the need for parent and staff support was an overall trend. We found it interesting that the participants did not mention specific supports such as needing help to understand how to do their job or what they need for school. Therefore, we speculate that the question was either not specific enough to warrant those kinds of responses, or, participants did not have enough experience to anticipate what specific supports they would need in post-secondary environments. Additionally, their limited experience in actively learning about these types of environments may have led to these responses as well. We plan to redesign these questions in year two of the TOPS program to link closer to the themes and activities throughout the TOPS sessions.
The responses from the parent focus group highlighted a number of themes that were interesting both from a research and program development perspective. The overall theme of “safety” was one that we were not expecting to find, yet was quite valuable to our research. Parents initially enrolled their son or daughter in the program because it was an opportunity to learn in a safe environment and one that felt protective. The second theme was based around the concept of inclusion. Fairfield University represents a safe and inclusive environment where their son or daughter can practice social skills and learn ways to interact that are age appropriate. The third theme extracted from the focus session included their desire to enroll their son or daughter in a “fun” and “stress free” program. They were not seeking an academic experience or one that necessarily had high expectations for specific results. They expressed wanting exposure to a college campus that would be informative and engaging yet did not represent the kinds of stressors present in their school environments. Finally, parents expressed their desire to have increased communication among the families included in the TOPS program. Therefore, we are working on implementing parent communication linking to the topics addressed each week in the TOPS program. Examples include information sessions with various offices on the Fairfield University campus and weekly notes home with resources for extended learning for parents and participants.
Within the pilot year of this initiative, the TOPS program has gained support and involvement from programs in the Graduate School of Education and Allied Professions (GSEAP), the Dean of GSEAP, as well as the university at large. All have agreed that the TOPS program advances the university’s mission to increase diversity on campus and exposes our students not only to a diverse population, but to a successful and collaborative partnership with a community stakeholder.
Based on the responses of the PEB-R and qualitative questions, the program plans to provide additional opportunities for social skills training through inclusive experiences with university students and a deeper exposure to both residential life and on-campus work environments. Opportunities for course participation will be explored in order to address academic skills. The TOPS program will continue to be connected to two graduate level Special Education courses by offering field observation and involvement to graduate students in the Special Education program. Graduate and undergraduate volunteers have provided written feedback which will be analyzed and used for program development and future improvement. In order to sustain this program, support and participation from Disability Services on campus to assist with planning and implementing particular activities with the young adults with ASD and their families on campus is required. Continued support and participation are also needed from personnel from a variety of sites on campus (library, cafeteria, Bellarmine Museum, snack bar/student center, gym, health center, campus safety and residential life). Most importantly it is critical for the TOPS program to have continued buy-in and participation from families and schools in the community seeking transition opportunities for young adults with ASD/ID. The faculty from Fairfield University and The Kennedy Center staff involved in the TOPS program, intend to collaboratively speak with transition coordinators/administrators at public schools in the surrounding towns about the program, not only as a way to recruit students, but also to seek their feedback about aspects of the program that can be altered and improved upon to best meet the needs of the individuals enrolled in the program.
We seek to expand the internship program for Fairfield University graduate and undergraduate students to gain firsthand experience in their field of study. This would provide graduate and undergraduate students the opportunity to also participate in data collection, analyzation, research presentations and writing. The TOPS program plans to increase participation and collaboration with other programs/departments across the university in order to develop volunteer and vocational opportunities on the university campus for young adults with ASD/ID. An additional future goal of the program is an intensive summer day or residential program for college bound students with ASD/ID to help their acclimation to a college campus including academic and social life skills in collaboration with The Kennedy Center and/or creating a year-round program designed for college students with ASD/ID offering a variety of supports in collaboration with Disability Services on campus and faculty from programs in each school. In order to offer suggestions for implementations to these potential programs, it is crucial to examine the experiences of the TOPS staff, program director, and faculty to make meaningful changes and to create program sustainability. We plan to gather this information via focus group and survey from TOPS participants, faculty, staff, volunteers and families.
As a result of our experience, we believe it would be beneficial for other universities that offer programs in Special Education at the undergraduate and/or graduate level to initiate similar partnerships with local agencies or schools to offer post-secondary campus exposure. Our hope is to serve as an example for such universities who are seeking to increase awareness of students with disabilities on campus and partner with community stakeholders to offer inclusive university-based opportunities to teens and young adults approaching the transition from secondary to post-secondary activities.
The additional files for this article can be found as follows:Appendix A
Table 1: Partnership Roles. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s1.pdfAppendix B
Table 2: Fall Semester Dates and Topics. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s2.pdfAppendix C
Table 3: Example Lesson Plan. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s3.pdfAppendix D
Table 4: Participant Demographics. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s4.pdfAppendix E
Table 5: The Perceptions of Educational Barriers Scale-Revised (PEB-R) (McWhirter, 2000). URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s5.pdfAppendix F
Table 6: Summary of TOPS Participant Responses. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s6.pdfAppendix G
Table 7: Summary of Parent Responses. URL: https://s3-eu-west-1.amazonaws.com/ubiquity-partner-network/up/journal/coll/coll-3-1-30-s7.pdf