By Marissa Desiree Pardo
This issue of NASET’s Severe Disabilities series was written by Marissa Desiree Pardo. The article is a literature review about facilitating the transition from school to adulthood for youth with mild to severe intellectual disabilities. The five articles being discussed will touch upon innovative solutions to ease the transition process for young adults, identifying various transition opportunities for youth with severe intellectual disabilities, roles of stakeholders in transition planning, and identity constructions for youth with mild intellectual disabilities. As a result of reading the literature, it was apparent that there are still many obstacles that create difficulties for parents and young adults who are transitioning from school to adult life, post-secondary school, or the workforce. Though many resources are cited in the articles to ease the transition, there is little implementation of these strategies in the real world. Through the use of these strategies, it is implied that improvements can be made for youth who are transitioning to adulthood.
Abstract
The following article is a literature review about facilitating the transition from school to adulthood for youth with mild to severe intellectual disabilities. The five articles being discussed will touch upon innovative solutions to ease the transition process for young adults, identifying various transition opportunities for youth with severe intellectual disabilities, roles of stakeholders in transition planning, and identity constructions for youth with mild intellectual disabilities. As a result of reading the literature, it was apparent that there are still many obstacles that create difficulties for parents and young adults who are transitioning from school to adult life, post-secondary school, or the workforce. Though many resources are cited in the articles to ease the transition, there is little implementation of these strategies in the real world. Through the use of these strategies, it is implied that improvements can be made for youth who are transitioning to adulthood.
Keywords: adult life, identity, inclusion, intellectual disability, postsecondary education, profound, profound intellectual disability, severe intellectual disability, stakeholders, transition
Introduction
Students and youth with an intellectual disability (ID), face a series of challenges when transitioning from high school to postsecondary education (PSE) and the workforce, including being more likely to remain in poverty compared to their peers without ID (Mock and Love, 2012). When youth with ID turn 21 years of age, specialized services that come from an Individualized Education Plan are significantly reduced or eradicated and solutions to ease the transition into adulthood are targeted towards youth who exhibit mild to moderate ID (Boudreault, Couture, & Gallagher, 2017). Little emphasis is placed on supporting the needs for students who have a profound or severe ID as a result of a greater need for support throughout the remainder of their lives (Jacobs, MacMahon, Quayle, 2018). Parents and caregivers seek and offer some realistic and innovative solutions to meet the unique needs of youth with profound or severe ID transitioning to adulthood or PSE (Boudreault, Couture, & Gallagher, 2017). There have also been significant advances in education offerings and options in PSE for students with more severe ID. These educational courses target academic growth, adjustment to transition, and the development of career goals (Cook, Regal, Wilczenski, 2017). This literature review discusses the existing challenges that occur during transitions into adulthood or PSE for students with profound ID, solutions to ease this transition period, as well as the roles that all stakeholders can assume in understanding and providing effective supports to meet the needs of students with ID who are faced with postsecondary transition.
Identity Constructions for Youth with Mild ID
In a study titled, “Identity constructions and transition to adulthood for young people with mild intellectual disabilities”, a qualitative analysis was conducted on four young adults with mild ID, five parents of young adults with mild ID, and five professionals who work within the adult service system. The interviews were scribed anonymously from a study done in Norway between 2012 and 2014. Professionals cited that they faced challenges when they worked through the transition process. The participants, youth with mild ID facing transition, discuss their daily lives and how their parents and other professionals help construct the lives
This article explores the self-constructions of young adults with mild intellectual disabilities. They discuss their everyday living and their own involvement in transition processes. As a result of these interviews, it was apparent that the youth defined themselves as “actors” in their own lives or choices (self-determination). The parents recognize the youth as actors in their own lives, however they see themselves as resources for their children in case they need assistance at any point.
Roles in Transition Planning for Students with ID
Roles for parents and caregivers of youth with ID are explicit, with the obstacles of the transitioning process clearly defined and expressed. The transition from school to the adult world is significant for all youth, but it is especially challenging for youth with ID. It requires the collaboration from many stakeholders: including parents, psychologists, therapists, and teachers for successful postsecondary transition planning (Wilczenski, Cook, Regal, 2017). In a study titled “Roles for School Psychologists in Transition Planning for Students with Intellectual Disability”, the article explores the role that school psychologists should assume during this time to ease the process from high school to PSE and employment.
In a study conducted by Migliore et al. (2009), the article cited that youth with ID that were included or participated in PSE were 26% more likely to leave a rehabilitation center and acquire a paid job earning a 73% higher weekly income. For students who have not been diagnosed with ID, PSE is a much more common practice, whereas youth with an ID tend to be subjected to a school-to-work transition or are limited to remaining in high school until the age of 22 (Kleinert et al., 2012). School psychologists play a role in this transition period and they will have to describe PSE programs to families, including suggestions for unique interventions for the transitioning youth, a guide with best practices, and implications for implementing the practice (Wilczenski, Cook, Regal, 2017).
Among the PSE program options for students with ID, there were beneficial suggestions that school psychologists can utilize to improve the transition from high school to PSE. Some of these options include (1) being funded for PSE through private payments, vocational rehabilitation centers, scholarships, outside agencies, student loans, Social Security tuition waivers, grants, and Medicaid waivers (Grigal et al. 2012) and (2) opportunities to enroll in college classes and college activities like clubs or sports. The existing PSE programs being offered currently fall under three types of models: The substantially separate model, the mixed/hybrid model, and the inclusive individual support model (Hart & Grigal, 2010; Neubert & Moon, 2006).
- Substantially Separate Model: The substantially separate model is the most restrictive model, offering coursework specifically for youth with ID. This implies that the students would not have access to the regular college classes, but through courses that meet their needs and are tailored to their abilities called “life skills” or “transition” programs (Hart & Grigal, 2010; Hart et al., 2006). These programs typically offer certificate of completion in place of degrees.
- Mixed/Hybrid Model: This model offers youth with ID the choice to attend college for credit, non-credit, or audit. The students can be involved in campus activities, clubs, and extracurricular activities, job training, unpaid work experiences, and internships with their non-disabled peers in their age-range (Hart & Grigal, 2010). There are life skills courses offered to students with ID who are participating under this model, alongside counseling and individual or small group instruction and opportunities for mentorship and employment options upon completion of the program (Hart & Grigal, 2010).
- Inclusive Individual Support Model: The inclusive individual support model is a program that is student-oriented and allows students with ID to be a part of the college community given explicit supports in place to accommodate to their needs (Folk et al., 2012). Students may enroll for credit given the possession of prerequisite academic skills needed to excel in a college course, otherwise they can audit courses.Upon being admitted to college, the students can participate in new student orientations, complete a variety of placement tests, meet with academic advisors, and live through a very similar college experience as their non-disabled peers. Individualized supports are provided through project-sponsored workshops that are available to all college students. These workshops focus on topics like, employability and study skills, technology use, managing money, and applicable life skills (Hart & Grigal, 2010).
Identifying Transition Opportunities
There are many existing strategies to increase participation among students with disabilities within the school, which in turn allows these students to pursue their strengths, interests, gain daily life skills, and create bonds with their non-disabled peers and staff members. This is not only important for students with disabilities in school, but it is pivotal for these students upon beginning the period of transitioning from high school to adult life.
In a study titled “Getting Everyone Involved: Identifying Transition Opportunities for Youth With Severe Disabilities” these strategies are discussed in detail to allow students with disabilities to participate within the school more frequently. During IEP meetings, activities, clubs, and different programs within the school can be discussed based on the child’s likes and dislikes. Concerns can be addressed regarding this level of extracurricular involvement (Sweden, Carter, & Molfenter, 2010).
The literature promotes moderate to complete inclusion of students with disabilities, citing that not only are they limited to specialized programs catered to youth with disabilities. Through these opportunities within the school setting, students diagnosed with ID can open the doors to determining their strengths, weaknesses, and what opportunities exist for them beyond schooling. This can ensure ease in the transition planning as the student will already know what their interests and strengths are (Sweden, Carter, & Molfenter, 2010). Implicitly, youth with mild ID take their identity seriously upon transition to adult life as it can further hinder their opportunities in PSE or the workplace.
Solutions from Parents of Young Adults with Severe ID
At the age of 21, youth with severe or profound ID graduating from high school have reduced access to specialized services they attain through IEP’s (Boudreaul, Couture, Gallagher, 2017). These services include a full evaluation to measure the strengths and weaknesses of the child. This evaluation can produce necessary accommodations in the classroom, assistive technology (AT), learning goals, and therapy services. In a study conducted by Boudreaul, Couture, and Gallagher (2017) titled “How to Facilitate Transition to Adulthood? Innovative Solutions From Parents of Young Adults with Profound Intellectual Disability” parental viewpoints are considered when discussing the reduction of these services and what potential solutions exist to make the transition from school to adulthood more simple for students for students with profound ID. The transition to postsecondary life is difficult for most youth, especially if the individual has an ID, which would make them more likely to live in poverty or remain unemployed in comparison to youth without disabilities (Mock & Love, 2012). Most solutions are aimed at students with less severe ID, however this study discusses the proposition of realistic solutions to adhere to the needs of youth with severe or profound ID and their families during and following their transition into adulthood (Boudreaul, Couture, Gallagher, 2017).
The methods utilized a qualitative approach, using two semi-structured interviews conducted individually with a group of 14 parents of young adults between the ages of 18 to 26 who were diagnosed with profound ID in Quebec, Canada. The parents were requested to complete a phone interview to discuss the abilities of the young adult and confirm that the adult was diagnosed with ID. Specific questions were asked during the phone interview covering daily living skills and communication skills. After the phone interview was completed, the parents were given an appointment date to conduct a face-to-face interview transcribed verbatim (Boudreaul, Couture, Gallagher, 2017).
Parents cite that there were needs that were not being met during the transition period, including a need for more informational support. They emphasised that transition plans were often late and lacked information that is appropriate for their transitioning child. Solutions proposed for this obstacle were transition plans that were implemented 3 years before school is completed, a support group that will assist the student after transition, and a coordinated navigator other than the parent. They also stated that stakeholders did not share knowledge about transitioning, citing that a transition planning document with steps including, calendars with important dates, a list of contacts, and a guide with a timetable would have been beneficial. Parents felt that they were navigating through their youth’s transition alone with no assistance. In addition, many caregivers in care centers did not know enough about the transitioning youth. This could have been resolved through organized visits to daily activities centers by teachers, parents, and the young adult, to integrate the youth gradually to ahead of time. These centers also lacked allowance of full-time attendance and interventions suited for the needs for youth with ID. Parents urged for (Boudreaul, Couture, Gallagher, 2017).
This study was aimed to propose innovative solutions for parents to meet the informational, material, intellectual, and emotional needs during the transition period of their young adult from school to adulthood. These solutions derived from the sharing personal knowledge, which helped some of the parents through emotional support, inter-institutional collaboration, and the social participation of the participating young adults. Many of these solutions could be implemented within current transition programs (Boudreaul, Couture, Gallagher, 2017).
Perspectives and Findings
As a result of the findings cited in each article, transitioning from high school to PSE or the workforce continues to pose many challenges and obstacles for families and youth diagnosed with mild to profound ID. Apart from limited options that exist for youth with ID, plans for transition continue to be vague, lacking explicivity, and lacking in opportunities for PSE access. While these articles express solutions that can be implemented prior to the transition period, it is implied that there is still an exceptionally underwhelming amount of support for students with moderate to profound ID. Through further research and implementation of some of the best practices discussed in some of the articles provided, there can be some implicit improvements in the way transition planning occurs for youth with mild to severe ID.
References
Folk, E. D. R., Yamamoto, K. K., & Stodden, R. A. (2012). Implementing inclusion and collaborative teaming in a model program of postsecondary education for young adults with intellectual disabilities. Journal of Policy and Practice
Gauthier-Boudreault, C., Couture, M., & Gallagher, F. (2018). How to facilitate transition to adulthood? Innovative solutions from parents of young adults with profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 31, 215-223. doi:http://dx.doi.org.ezproxy.fiu.edu/10.1111/jar.12394
Grigal, M., Hart, D., & Weir, C. (2012). A survey of postsecondary education programs for students with intellectual disabilities in the United States. Journal of Policy and Practice in Intellectual Disabilities, 9, 223–233. doi:10.1111/jppi.12012.
Hart, D., & Grigal, M. (2010). The spectrum of options—current practices. In M. Grigal & D. Hart (Eds.), Think college: postsecondary education options for students with intellectual disabilities (pp. 49– 86). Baltimore: Brookes Publishing.
Hart, D., Grigal, M., Sax, C., Martinez, D., & Will, M. (2006). Postsecondary education options for students with intellectual disabilities. Institute for Community Inclusion University of Massachusetts Boston. Retrieved from www. communityinclusion.org/article.php?article_id=178.
Jacobs, P., MacMahon, K., & Quayle, E. (2018). Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis. Journal of Applied Research in Intellectual Disabilities, 31(6), 962-982. doi:http://dx.doi.org.ezproxy.fiu.edu/10.1111/jar.12466
Kleinert, H. L., Jones, M. M., Sheppard-Jones, K., Harp, B., & Harrison, E. M. (2012). Students with intellectual disabilities. Going to college? Absolutely! Teaching Exceptional Children, 44(5), 26–35 Retrieved from tcx.sagepub.com.
Midjo, T., & Aune, K. E. (2018). Identity constructions and transition to adulthood for young people with mild intellectual disabilities. Journal of Intellectual Disabilities, 22(1), 33-48. Retrieved from ezproxy.fiu.edu/login com.ezproxy.fiu.edu/docview/232 6873?accountid=10901
Migliore, A., Butterworth, J., & Hart, D. (2009). Postsecondary education and employment outcomes for youth with intellectual disabilities. Retrieved from www.thinkcollege.net/images/stories/site_ images/pubs/FF_1.pdf.
Mock, M., & Love, K. (2012). One state’s initiative to increase access to higher education for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 9, 289–297. doi:10.1111/jppi.12006
Swedeen, B. L., Carter, E. W., & Molfenter, N. (2010). Getting everyone involved: Identifying transition opportunities for youth with severe disabilities. TEACHING Exceptional Children, 43(2), 38-49. Retrieved from ezproxy.fiu.edu/login 58687?accountid=10901
Wilczenski, F. L., Cook, A. L., & Regal, C. P. (2017). Rethinking college: Roles for school psychologists in transition planning for students with intellectual disability. Contemporary School Psychology, 21(1), 71-79. doi:http://dx.doi.org.ezproxy.fiu.edu/10.1007/s40688-016-0112-z
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