Overview

Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities

Modernizing Transition: A Social-Ecological Approach

Authors

Brian Abery is co-director of the Global Resource Center for Inclusive Education at the Institute on Community Integration, University of Minnesota, in Minneapolis. He may be reached at abery001@umn.edu.

Renáta Tichá is co-director of the Global Resource Center for Inclusive Education at the Institute on Community Integration, University of Minnesota, in Minneapolis. She may be reached at tich0018@umn.edu.

Jan Šiška is an associate professor at Charles University and University of West Bohemia, Czech Republic, and a Fulbright research scholar at the Institute on Community Integration at the University of Minnesota in Minneapolis. He may be reached at jan.siska@pedf.cuni.cz.

Roger J. Stancliffe is a senior research associate at the Institute on Community Integration, University of Minnesota, Minneapolis. He is professor emeritus of intellectual disability at the University of Sydney, Australia. He may be reached at stan0185@umn.edu.

Young adults with intellectual and developmental disabilities need better support as they leave high school. This should be a time of personal growth and discovery as they try out different careers, additional schooling, housing options, social opportunities, and community roles such as voting.

Support for this is very different depending on where you live. Some countries, like the United States, require schools to offer these transition services, and they provide money for them. Unfortunately, many still offer these services in separate schools, so that students with and without disabilities don’t have the chance to learn together. Other countries promise to provide job training, but true inclusion doesn’t always happen. Some students find jobs through family and friends, but they face a lot of discrimination because of their disabilities.

We need to modernize transition services around the world. We must make young adults with disabilities and their families more aware of real job opportunities, and we must work more closely with employers to make it easier for them to find and train workers. And we must do this during pandemics, natural disasters, wars, economic crises, and roadblocks to success that are caused by ableism, racism, and other barriers. There is a way of thinking about all these different steps and barriers, and it is called the social-ecological approach. It is a way of studying how people and events influence a young adult’s life path. Family, friends, teachers, school programs, laws, policies, attitudes, media, along with the temporary hazards mentioned earlier, all affect the future path of young people with disabilities.

A young man in a bright yellow hooded sweatshirt, sitting in a wheelchair, holds his hands in a prayer position with an open book on his lap. Behind him is a multi-colored cabinet. The picture is from Dreams of Birds Flying in the Sky, a film about the complexities of disability in education, training, work, culture, and religion in Bhutan.

Above: Dreams of Birds Flying in the Sky, a film about the complexities of disability in education, training, work, culture, and religion in Bhutan, was produced by Matthew Schuelka and Fora Education as part of a grant from the United Kingdom to a team that also includes authors Tichá and Abery.

The word “transition” is understood widely as both a noun and a verb. As a noun, the term refers to a change or shift from one state, place, or condition to a different one – an outcome. As a verb, transition is defined as the process of changing from one form or condition to another. Our conceptualization of transition focuses on both aspects of the word.

When transitioning from school to adult life, young adults, their families, and teachers typically focus on the outcome. Does the young adult successfully make the change from high school to college or high school to work? Although an emphasis on outcomes is important, positive outcomes cannot be achieved in the absence of efforts to improve what occurs during the period when youth are being prepared for life after school – or the transition process.

People make multiple transitions throughout their lives. To serve its intended purpose, transition needs to be understood as continuous, with the goal that young adults emerge with new abilities, opportunities, and perspectives having learned something about themselves and the world at large. As currently implemented in the United States and other countries, however, the process all too often places young adults with intellectual and development disabilities (IDD) in nothing more than a holding pattern. Our colleague Sally Sexton of the Minnesota Inclusive Higher Education Consortium (MIHEC) contends that a good metaphor for transition as experienced by many young adults with disabilities is a cul-de-sac, a street or path closed at one end, resulting in a route leading nowhere. Conversely, effective transition can be framed as a roundabout, a circular intersection in which traffic flows around a central island with multiple exits, permitting one to head in a variety of different directions. A roundabout supports users to choose their own path and maximizes their chances of getting to where they desire to go.

In far too many situations, young adults with IDD experience transition in a manner similar to that of youth 15 to 20 years ago. The focus is still on a singular outcome (typically work) and a student exiting the system, rather than on the transition process. Building capacities supportive of competitive inclusive employment, independent living, and postsecondary education are often not central features of programming. Critical linkages between youth and service systems and among these systems themselves are not nurtured. The result is that we have made little progress in supporting the inclusion of young adults with IDD in postsecondary education, employment, and community living and continue to have a fragmented service system.

Transition as a Roundabout

The transition of people with disabilities from high school to adulthood can be compared to a traffic roundabout. At the center is a person with disability, who is surrounded by his family, peers, teachers, and others who know him personally. Another circle depicts entities that may influence a person with disabilities, such as extended family, a school board, government agencies, and the media. A third, outer circle represents societal values and customs that can affect a person as they transition to adulthood. Hanging over the roundabout are drifting clouds depicting shifting world events that can affect the transition process, including war and pandemic.

Current status of transition services

Transition from school to adulthood varies significantly across countries and cultures, but some common challenges and opportunities exist. Few countries have formally included the concept of transition for youth with disabilities into their educational or vocational legislation. For students not identified as having disabilities, there is an international network of Technical and Vocational Education and Training (TVET) programs designed to prepare students for life after school. These programs vary widely among nations, but can include services in the areas of employment, independent living, postsecondary learning, and becoming an active citizen. While TVET programs are focused on the period of transition from school to adulthood, very few, unfortunately, intentionally plan for including students with disabilities.

The United States is one of a few countries in the world to include funded transition planning, supports, and services in education and vocational laws (Individuals with Disabilities Education Act, Workforce Innovation and Opportunity Act). Students with disabilities and their families have legal rights to transition services from age 16 to 21, or a few years later in some states. For countries that ratified the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006), secondary transition is reflected in Article 27, which recognizes the right to work in an inclusive and accessible environment by taking steps to “enable persons with disabilities to have effective access to general technical and vocational guidance programmes, placement services, and vocational and continuing training.”

While we can argue that the United States and a few other Western countries have an established infrastructure to support youth with disabilities during secondary transition represented by legislation and funding, there appears to be a certain rigidity and complacency evident in the transition process. Many U.S. school districts, especially those in larger cities, have designated transition buildings in which transition programming and services are offered in a segregated setting. Students with IDD tend to be funnelled into activities that better prepare them for work in sheltered workshops than in competitive employment, such as assembly line tasks. Such in-house simulated work as the main form of vocational instruction is incompatible with empirically validated best practice for post-school employment success, which involves genuine work experience (Papay & Bambara, 2014).

When schools do find placements in the community, they typically entail work in fast-food restaurants, shops run by charitable organizations, or custodial settings. Students’ individual visions for the future take a back seat to what is available. In addition, rarely is postsecondary education considered for this group, despite current employment opportunities often requiring training beyond high school.

Teachers, who are critical in ensuring high-quality transition supports, often come ill-prepared for this work. Few pre-service training programs prepare educators with the specialized skills needed to deliver effective transition supports. Some states and countries have initiated in-service training for transition educators to address these issues, but such programs lack the ongoing access to working teachers that is necessary to fully prepare them for their complex roles. In addition, training opportunities for other educational staff, including educational assistants, remains quite limited.

Many countries in the Global South, such as India, Bhutan, and Ethiopia, do not have infrastructure in place to support youth with disabilities through the transition process, but they have retained many traditional and community-based practices that are often naturally supportive. Working in a family business or participating in village or temple activities, for example, are traditions with potential to support transition in an organic manner. They are often accompanied, however, by an intense sense of ableism that serves as a barrier to successful transitions.

People with disabilities, as everyone else, are first and foremost people with many talents and dreams. At this time of turmoil and change at a global level, there is an opportunity to re-conceptualize secondary transition not only as a set of services and supports for students with disabilities mandated by the special education law, but as a period during which all students could use support creatively. This support must transcend legal accommodations and modifications, and be fully inclusive and community focused. At the same time, we cannot assume that natural supports by a family or community members are going to be sufficient, especially for students with more significant disabilities.

A Social-Ecological Model

To modernize transition, we must adopt a framework that transcends traditional educational models. Bronfenbrenner (1986, 1992) and those who expanded on his early work on a social-ecological model (e.g., Cross Jr., 2017; Garbarino, 2017; Schoon & Heckhausen, 2019), contend that individuals actively participate in a set of interlocking ecological systems. At the most basic level are the physical and social environments in which we lead our daily lives including the family, peer group, and school. These immediate environments and the interactions that occur within them, such as instruction or work-based learning, have a profound effect on transition outcomes. We all, however, have social interactions within multiple contexts. One must therefore also take into consideration a person’s experiences between two or more of these nested settings and the connections that exist between the settings (for example, between family and school, or between transition program and work-based learning site). These linkages affect an individual’s life. If transition specialists do not have well-developed connections with local businesses, for example, it is unlikely that student work-based learning opportunities will adequately prepare them for competitive employment. Moving outward, the next level consists of the impact of larger institutions in which persons do not have formal roles, but nonetheless affect their lives. School board decisions that impact transition programming, and political decisions that influence the economy and public safety, for example, must all be taken into consideration.

A further step away from the individual is the larger culture or society that surrounds and influences other levels of the ecosystem. Sociocultural influences include attitudes, ideologies, and values. These can either be supportive of positive transition outcomes or serve as barriers to them. This ecological context is not static but changes over time in ways that are both expected, such as the maturation of a child into an adult, and unexpected, such as an economic recession, or a war. Such changes have an impact at each level of the ecosystem and on persons themselves.

By taking the social-ecological model perspective with respect to transition, we can reach beyond the limitations of the regional models described earlier to better address the needs, and dreams, of youth with disabilities. This approach also clarifies what needs to change at various levels of the ecosystem if we are going to significantly improve postsecondary outcomes.

Within the immediate settings in which they live, the extent to which young adults with IDD are encouraged by their families and teachers to find employment and/or take part in postsecondary education play a critical role in the outcomes they experience. To do this, however, families need to first be aware of these opportunities. Transition teachers must understand their students’ prospects for employment and postsecondary education as well as have the knowledge and skills to effectively create new opportunities and support them. Papay and Bambara, (2014) found that family expectations and family involvement in transition planning were both strongly positively associated with a range of desirable transition outcomes.

At the organizational level, in-service training for transition and vocational rehabilitation instructors and human resources professionals must avoid siloed instruction and embrace inter-professional collaboration. It must help these professionals learn how to build connections between youth, families, and staff, and within communities and workplaces. Addressing the lack of staff, particularly support staff, at the organizational level is critical, as is the need to widely share with the broader community what youth with disabilities can contribute to the workplace, particularly during this period of strong demand for workers.

International, national, and local laws, along with education and social service policies, can also influence transition outcomes, as can the general political climate. All of these affect the availability of jobs, affordable housing, transportation, and other important resources. Disparities also persist within countries, including the United States, where state funding for transition services in the educational system varies widely as individual states make decisions about prioritizing limited funds. When examining legislation, we must consider whether it can be enforced, in addition to whether it protects the human rights of young adults with disabilities. We must provide states with more incentives to adopt transition programs that are based on 21st century skills and knowledge.

Finally, we must acknowledge the broadest global trends and how they affect the various layers of transition. War, poverty, discrimination, and other social ills play a significant role in the lives of young adults. Students with disabilities from culturally, racially, linguistically, and gender diverse communities face added challenges in navigating systems that at best ignore their differences and at worst exclude them or suggest that they must conform to mainstream ideology. And transition programs that remain fixated on providing instruction and employment experiences in non-inclusive environments do nothing to advance the goal of inclusion in adult life.

Modernizing secondary transition for youth with disabilities will require viewing it as a process through which all young adults travel, not just those with disabilities. This time of change and exploration needs to be grounded in person-centered, inclusive practices that build bridges between school-based programs, relevant state agencies, local businesses, community support providers, two- and four-year colleges, and communities.

A truly inclusive transition process needs to be based on students with IDD having the same chance to explore their interests and discover postsecondary options that fit their dreams for the future as their peers without disabilities. Experiences restricted to, “what is available,” do not meet the intent of federal transition legislation (IDEA, 2004) or the guidelines laid out in the more recent WIOA (2014) and CRPD (United Nations, 2006).

During this time of wars, pandemic, and other major events that can often lead to large-scale global change, we have an opportunity to remove barriers for young people as they inherit the future. In turn, they will lead us to more inclusive and humanistic communities.

To return to our metaphor of the cul-de-sac and roundabout, we invite you to visualize a transition process in which well-trained educators, acting in a manner similar to traffic engineers, create a system for youth to build a set of life-long skills. They then choose, from among a myriad of different potential paths, the one that best reflects their personal vision for the future.

References

Bronfenbrenner, U. (1986). Recent advances in research on the ecology of human development. In: Silbereisen, R.K., Eyferth, K., Rudinger, G. (Eds.), Development as action in context (pp. 287-309). Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-02475-1_15

Bronfenbrenner, U. (1992). Ecological systems theory. In R. Vasta (Ed.), Six theories of child development: Revised formulations and current issues. Jessica Kingsley Publishers.

Cross Jr, W. E. (2017). Ecological factors in human development. Child Development, 88(3), 767-769. https://doi.org/10.1111/cdev.12784

Garbarino, J. (2017). Children and families in the social environment: Modern applications of social work. Routledge.

Individuals With Disabilities Education Act, 20 U.S.C. § 1400 (2004).

Papay C. K., & Bambara L. M. (2014). Best practices in transition to adult life for youth with intellectual disabilities. Career Development and Transition for Exceptional Individuals, 37(3), 136-148. https://doi.org/10.1177/2165143413486693

Schoon, I., & Heckhausen, J. (2019). Conceptualizing individual agency in the transition from school to work: A social-ecological developmental perspective. Adolescent Research Review, 4(2), 135-148.

United Nations General Assembly. (2006). Convention on the Rights of Persons with Disabilities (CRPD). GA Res, 61, 106.

Workforce Innovation and Opportunity Act of 2014, 29 U.S.C. §§ 3101-3174.