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The following academic article was written by Phil Smith, Ed.D and Christie Routel, M.A. It was published in
Disability Studies Quarterly (DSM) and is available in its entirety at
http://www.dsq-sds.org/article/view/1012/1224.
Citation:
- Smith, Phil, and Christine Routel. "Transition Failure: The Cultural Bias of Self-Determination and the Journey to Adulthood for People with Disabilities." Disability Studies Quarterly 30.1 (2010): 175-82. Web. 24 Mar. 2010. < http://www.dsq-sds.org/article/view/1012/1224 >
Transition Failure: The Cultural Bias of Self-Determination and the Journey to Adulthood for People with Disabilities
Phil Smith, Ed.D.
Eastern Michigan University
Department of Special Education
E-mail: psmith16@emich.edu
Christie Routel, M.A.
Eastern Michigan University
Department of Special Education
Abstract
Like other social service and educational industry processes, the transition from special education services to supports received in community settings has been commodified and reified, controlled by educational and human service professionals, meeting the needs of the industries that they represent and capitalism in general, and serving to keep people with disabilities and their families segregated and isolated. Using critical theory and disability studies approaches, this paper explores ways in which the concept of self-determination, as normatively constructed by Anglo-European professional bureaucratic structures, fails to meet the needs and rights of marginalized, culturally diverse students with disabilities and their families. Policy, funding, and practice implications for schools are explored.
The topography of Western culture, dominated by positivist, modernist, and scientific geographies, portrays people with disabilities and their families as broken and needing to be fixed — qualities inherent in the medical model of disability (Aichroth, et al, 2002; Gabel 2005; Smith, 1999a; 2001a; 2001b; 2005; Taylor, 2006). Too often segregated into literal and metaphoric ghettos of disability (taking the form of institutional and separate educational systems, and as the result of labeling and stigma), people with disabilities are seen as requiring services to live — services created and commodified by educational and human service delivery industries, and not, all too often, by people with disabilities and their families (Smith, 1999b).
In the natural course of their lives, as people with disabilities migrate from one service industry landscape to another — for example, from education systems to community service systems — they are said by professionals to engage in a process of transition. Like other social service and educational industry processes, the transition from special education services to supports received in community settings has been commodified and reified, a process controlled by educational and human service professionals, meeting the needs of the industries that they represent, guarded and surrounded by the boundaries of normative landscapes, and serving to keep people with disabilities isolated within social geographies characterized by segregation, institutionalization, and poverty (Smith, 1999a). While hyper-professionalized service systems proudly announce the success of these movements, from the perspective of people with disabilities and their families, too often the migratory process of transitioning to adult living is outlined as another in a series of failures, in personal, economic, and social terms.
In spite of decades of work in education and human services, the magnitude of this failure remains huge. When compared to young adults without disabilities, children and adults with disabilities have increased rates of dropping out of high school, underemployment and unemployment, illiteracy, incarceration, and poverty (Illinois Interagency Coordinating Council, 2002; Newman, Wagner, Cameto, & Knokey, 2009). One in three young adults with disabilities live in households with annual incomes of $15,000 or less (Harris, 2000). People with disabilities are more likely to experience social isolation and segregation, leading to low self esteem (Aichroth, et al, 2002; Gaylord & Hayden, 1998; McGraw-Schuchman, 1994; Newman, et al, 2009; Smith, 1999a; 1999b). These outcomes appear to be more bleak for those with more significant disabilities, including people labeled as having intellectual or emotional disabilities (Newman, et al, 2009).
While transition services are designed to provide employment for young people with disabilities, to ensure that they are included in civic communities, and to coordinate the diverse set of services and supports they require in order to have meaningful lives, these outcomes indicate that services designed to transition students from educational supports to community supports have not met their needs. They remain impoverished, un- or under-employed, socially isolated, imprisoned, lacking necessary skills to obtain a positive quality of life, and spending their time engaged in day-wasting activities.
Students with disabilities from culturally diverse backgrounds face an even bleaker future, and are more likely to receive inadequate supports and services (Wilder, Jackson, & Smith, 2001). African-American, Latino, and Native American adults with disabilities who seek employment are even less likely to be employed than Anglo-European adults with disabilities, who already experience low levels of employment when compared with those without disabilities (Blackorby & Wagner, 1996). Anglo-American adults are more likely than those of other cultural and ethnic groups to use vocational rehabilitation services (National Council on Disability, 1993), perhaps because of racial privilege. Throughout the educational process, students from culturally diverse backgrounds are more likely to be misdiagnosed and over-represented in special education (Wilder et al., 2001; Dais, 1993; Ferri & Connor, 2006; Geenan, Power, & Lopez-Vasquez, 2001; Losen & Orfield, 2002; Smith, 2004). Racism — so clearly at the heart of American culture (Smith, 2004) — prevents students of color who also happen to have disabilities from accessing what most in the white, middle class take for granted. For them, the failure of transitional supports is even more dismal than for those in dominant culture, further evidence that foundational constructs on which transition services are based — self-determination and independence — are culturally created and mediated.
Ableism and racism, often working hand in hand, ensure that supports designed to allow young people with disabilities to transition successfully from education to community, will be nothing less than a failure, as currently constructed. If transition services are designed to create lives of long-lasting value and worth for people with disabilities, they have failed to do so in any real and meaningful way. Perhaps just as importantly, their failure points to the ways in which ableism is endemic in Western culture.
The purpose of this paper is to explore the failure of transition services for all students, particularly those with disabilities and from culturally diverse backgrounds. In it, we ask: what are the reasons for this failure, and can those issues be addressed to achieve a measure of success? Using critical theory and disability studies perspectives, we undertake an exploration of the geography of this question, to understand its meanings and implications.
Analysis used in this paper is founded in a critical theory approach. By critical theory, we mean an understanding and exploration of the complexity of social and cultural power structures. We believe critical theory to be an activist critique, seeking "…to empower the powerless and transform existing social inequalities and injustices" (McLaren, 2007, p. 186). It follows on the work of Horkheimer, Fromm, Marcuse, Adorno, Gadamer, and Habermas of the Frankfurt school, as well as more modern critical theorists such as Giroux, Apple, Kozol, McLaren, and Freire, who looked at new areas such as race, gender, and class, but only rarely disability (Danforth & Gabel, 2006; Danforth & Smith, 2005; Giroux, 1997; McLaren, 2007; Smith, 2005; 2008; Ware, 2009).
Giroux (2006) describes critical theory, as it is used in schools, as a way to understand how power works through the production, distribution, and consumption of knowledge within particular institutional contexts and seeks to constitute students as particular subjects and social agents. It is also invested in the practice of self-criticism about the values that inform our teaching and a critical self-consciousness regarding what it means to equip students with analytical skills to be self- reflective about the knowledge and values they confront in classrooms. (2006, p. 31)
Whether in theory, practice, or research, critical theory is about the "fundamental interruption of common sense" (Apple, 2004, p. 14). In the world of education, critical theory is often described as critical pedagogy. Kincheloe (2004) points out that critical pedagogy is "the educational articulation of critical theory buoyed by the work of feminist theorists and Brazilian educator, Paulo Freire…" and that through it, "…advocates have confronted the positivistic, decontextualized, and depoliticized education often found in mainstream teacher education and higher education in general, and elementary and secondary schools" in particular (p. 55).
Additionally, this paper relies on disability studies as a way of exploring and understanding issues of disability in cultural contexts (Gabel, 2005; Smith, 2001a; 2001b; 2004; 2006a; in press-a; in press-b). A disability studies view understands disability as a social construction (Taylor, 2006; Smith, 2001a; 2001b; 2006b), and it explores the meaning of disability across a variety of disciplines and perspectives (Gabel, 2005; Danforth & Gabel, 2006). In this paper, we are intentionally interdisciplinary, drawing on definitions and meanings of self-determination across psychology, political science, special education, social work, critical theory, and other fields.
As authors, between us, we have decades of experience working as professionals in educational and human service landscapes, focused on supporting people with disabilities. Individually, we have provided direct support to students and adults with developmental disabilities, managed group homes, worked to include students with disabilities in regular education classrooms, been a service coordinator, and managed grant projects, among a host of other roles. In addition, Phil describes himself as a person with a disability, and the parent of a person with a disability.
Outcomes for Students with Disabilities Transitioning to Adulthood
For all young adults and their families, moving from high school to post-secondary life can be a time of redefinition, conflict, and tension (Morningstar, Kleinhammer-Trammil, & Latin, 1999). How well do schools support students — both with and without disabilities — as they move from the world of education to the world of adult living? Poorly. Independent estimates put the high school dropout rate in the United States at nearly 1/3 of all students (Barton, 2004a; Greene & Winters, 2002; Swanson, 2004a; 2004b). High school dropout rates are highest for minority students, who also have the highest rate of suspension from school, and lowest levels of employment (Barton, 2005; Bennet, 2001; Livingston & Wirt, 2005; Swanson, 2004a; 2005). Ultimately, public education is doing a poor job at providing the most basic level of schooling, and providing the simplest transition to adult living, if a full third of students fail to complete high school, whether or not those students have a disability. The public education industry in the United States does not meet the needs, dreams, and interests of huge numbers of students — perhaps because its goal is to maintain a body of unemployed and unemployable workers necessary for the functioning of capitalism (Hahn, 1987).
12.1% of students between the ages of 6 and 21 have some form of disability that impacts their learning sufficiently that they require an Individualized Education Program (IEP) (OSERS, 2003). As these students and their families make the transition to adult living, they face increased pressure due to support needs, the disruption of established routines, and the balance between ensuring safety while encouraging autonomy (Timmons, Whitney-Thomas, McIntyre, Butterworth, & Allen, 2004; Kim & Turnbull, 2004). Students with disabilities who transition to adult services face a confusing web of vocational rehabilitation agencies, supportive living services, and other adult disability supports (Certo, 1997).
It is clear that educational systems fail to keep students with disabilities in school long enough for them to transition appropriately to adult services and supports — more than half drop out of school before they graduate. The highest dropout rate is among students with emotional and behavioral disabilities. In 2000-2001, a discouraging 41% of students with disabilities over the age of 14 dropped out of school (OSERS, 2003). Even students with the highest need for transition supports drop out of school before they can access them: for example, the dropout rate for students with intellectual disabilities is 26% (President's Committee for People with Intellectual Disabilities, 2004). Even if appropriate transition supports and services are available to students with disabilities, they cannot access those supports if educational systems can't keep students in school.
Why do students drop out of school? One argument, founded in a critical theory and disability studies approach, argues that modernist educational systems are designed to ensure that they drop out — that is, they are specifically designed for those students to fail: "…schools legitimate the existence of an unequal social division of labor that locates the source of economic failure, not in the social and economic structures of capitalism, but in the individuals themselves" (Erevelles, 2005, p. 68). Educational systems — in particular, special education — are deeply imbued with a powerful eugenic ideology, one of whose goals is separating difference from normality.
Schools are one element that a capitalist society uses to create workers, and capitalism needs a set of unemployed workers in order to function properly. Special education in schools in a capitalist economy sorts students with disabilities from those who are portrayed as being successful in both school and work, in order to create a group of students more likely to dropout, that will then form a body of unemployed workers (Hahn, 1987; Smith, 2005; in press-b). The continued failure of some students in schools, particularly those with disabilities, is "the secondary effect of cultural capital and class- and gender-specific social practices… which attributes school failure to individual deficiencies on the part of a lazy, apathetic, and intellectually inferior underclass of students or to uncaring or selfish parents" (McLaren, 2007, p. 235).
Family, Disability, and Transition
Periods of transition are stressful times for young adults with disabilities and their families, and quality of life for both the family and person with a disability are highly correlated to successful transition (Kim & Turnbull, 2004). As with many young adults, the quality of life for people with disabilities is linked to the family and the family perception of desirable outcomes (McIntyre, Kraemer, Blacher, & Simmerman, 2004). Families and individuals look for stability and predictability in family life while expecting transition supports to meet changing needs (Thorin, Yovanoff, & Irvin, 1996).
The role of family members is essential to the transition success of students with disabilities, in both process and outcomes (Morningstar, Turnbull, & Turnbull, 1999). The perspective and input of parents and siblings is critical during transition planning (Chambers, et al., 2004). Students with disabilities appear more engaged in the transition planning process when families encourage involvement (Morningstar et al., 1995). Parental involvement also has a critical impact on the future success of young adults with disabilities from culturally diverse backgrounds. Positive academic and transition outcomes are directly related to the impact families have on the transition process (Geenan et al., 2001).
And yet professionals assert that only they can truly understand and create the kinds of curricula and supports needed by people with disabilities and their families (Lovett, 1996; Shapiro, 1993; Smith, 1999a). As a result, many parents report disengagement and dissatisfaction with the process and outcomes of transition, and difficulties in collaborating effectively with school personnel (Harry, Rueda, & Kalyanpur, 1999; Morningstar et al., 1995; Timmons et al., 2004). Parents describe schools that are unwilling and unable to meet their child's transition needs (Timmons et al., 2004). Culturally diverse families describe dissatisfaction and distrust of the transition planning process (Geenan et al., 2001; Rueda, Monzo, Shapiro, Gomez, & Blacher, 2005). This is likely founded in the tension between their own cultural experiences and those of a dominating, white, patriarchal hegemony.
A number of studies have found that families and individuals are concerned about social networks after transitions, adequate support for job success, coordination with adult service providers, living arrangements, and available post-school options (Chambers et al., 2004; Hughes & Carter, 2004; Kim & Turnbull, 2004; Lovitt & Cushing, 1999). But are these the goals of transitional supports? Although transition support systems give lip-service to them, we've outlined ways in which those goals are not being met, resulting in outcomes contrary to those desired by people with disabilities and their families. In spite of best intentions, transitional supports, whether in education or human service industry settings, continue to meet the goals of capitalism.
Beyond this, while many schools could certainly work harder to address the need for transition supports for students with disabilities, the problem with transition services is more complex than filling in the blanks on an IEP after each of these concerns. Family dissatisfaction is rooted in more fundamental issues than available services.
Self-Determination and Transition: Individually Relative Definitions
There is a strong link between post-school outcomes and self-determination, with enhanced self-determination playing a significant role in student education, employment, community involvement, and quality of life (Aichroth, et al., 2002; Carter, Lane, Pierson, & Glaeser, 2006; Zhang, 2005). Being able to choose for oneself the direction of one's life is a necessary component to having any kind of life at all. Teachers and parents play critical roles in promoting student self-determination. School and home environments can foster or inhibit the development, use, and refinement of self-determination skills (Carter et al., 2006).
One origin of family dissatisfaction with transition processes for students with disabilities may lie in ways in which self-determination and transition are constructed and understood by education and human service industries. While these concepts are commonly defined in different ways, choice and decision-making are shared threads in the literature.
In the field of education, although acknowledged to be complex, self-determination is portrayed as having "a high level of consistency across the definitions and conceptual frameworks" of the notion, and to embody a set of "skills and knowledge" (Wehmeyer, 2007). Yet when viewed outside the inbred topographies of education, funding policy, and human services philosophy, there is little consensus. Zhang (2005), for example, found seven completely different ways of conceptualizing it, with powerful differences across cultural lines. Others note that key terms describing the elements and outcomes of self-determination are defined in completely different ways, using differing language (Turnbull & Turnbull, 2006). A recent seminal review asks pointedly:
Does self-determination refer to a curriculum that teaches students with disabilities to be self-directed problem solvers, a technique for redirecting funding streams so that adults with disabilities can control the dollars allocated for their supports and services, or a philosophy grounded in democratic values and constitutional principles of autonomy and liberty? (Turnbull & Turnbull, 2006, p. 1)
One set of researchers defines self-determination as a process by which people "…experience quality of life consistent with their own values, preferences, strengths, and needs" (Turnbull & Turnbull, 2001, p. 56). Others insist that it is founded on key principles of freedom, authority, support, responsibility, and confirmation (Nerney, 2003). In the field of services for people with intellectual and developmental disabilities, self-determination often means what others refer to as consumer-directed supports, in which people with intellectual and developmental disabilities or their families control and direct funding that provides for the supports they need in order live their lives in community settings (Walker, Hewitt, Bogenschutz, & Hall-Lande, 2009). The Robert Wood Johnson Foundation, which funded self-determination projects for people with developmental disabilities in 18 states, found that implementation varied widely among the states partly because each state differed in its understanding of the idea (Sunderland, 2007).
We argue that the lack of consensus regarding the meaning of self-determination is not a result of a disagreement on terminology, but something more basic: who controls the definition. Almost a decade of qualitative research on self-determination as understood and created by people with disabilities and their families (avoiding, pointedly, constructions by professionals and service industries) has found that the idea literally means something different to each person, whether they have a disability or not (Aichroth, et al, 2002; Smith, 1999b; 2000; 2003; 2006b). This research outlines that, for some people with disabilities, self-determination is about being able to choose which clothes to wear, what food to eat, or what time to got to bed. For others, it is about having control over individualized budgets that enable them to receive the supports they need to live their lives in meaningful ways. Still others understand self-determination as being able to hire and fire people who work as personal care attendants. Other people people with disabilities might say self-determination means being able to tell their family that they won't be coming home for an important holiday because they have made other plans with friends. Self-determination, then, is individually relative for people with disabilities and their families (Aichroth, et al, 2002; Smith, 2003).
Still, in the lives of people with disabilities, self-determination has common elements: it involves having choice, control, and power in one's life (Aichroth, et al, 2002; Harkins, Nerney, Smith, & Warner, 2000; Smith, 1999b; 2000; 2003; 2006b). Educators understand self-determination as something that can be taught to students, as if it were a skill or set of skills (Zhang, Wehmeyer, & Chen, 2005). Ultimately, however, self-determination is a basic human right (Moseley, Gettings, & Cooper, 2005; Wehmeyer, 1995), not a skill or curriculum (O'Brien, 2000; Smith, 1999b; 2000; 2006b). When self-determination is portrayed by schools and human service bureaucracies as something that can be taught to students with disabilities — a skill rather than a right — it becomes another way to reify and commodify the topography of supports for people with disabilities and their families, supports that should otherwise be due them as a right of being human.
Below, we put this idea of self-determination as a human right (rather than a skill to be taught or learned) into a larger political context, describing it from the perspective of indigenous groups who have all-too-often been controlled by colonialist (white, Eurocentric) cultures. Briefly, however, at the personal level, the notion that self-determination (having choice, control, and power in one's life) can be taught to others strikes us a uniquely colonialist idea — some in-group (teachers, people who describe themselves as not having disabilities, as being normal) has it, and can teach the out-group (students, people with disabilities, people who are by definition not-normal) how to get it. If such an out-group can be said to not have self-determination, it is because they have been actively denied access to processes enabling them to express their self-determination by the in-group. This is another way of expressing blaming-the-victim behavior.
The lack of consensus about a definition of self-determination is a function of who is asked, and who controls the definition. Education and human service providers, for the most part, see a definition that meets the needs of their industries — not the human and civil rights of people with disabilities and their families. There is clearly a deep disconnect between the beliefs of professionals providing supports and services, and the values held by people with disabilities and their families who receive those services.
The Cultural Relativity of Self-Determination and Transition
The principles of individualism, personal choice, and equality of opportunity are embedded in the normalization movement, which seeks to create professionally-developed services in order for people with disabilities to live in ways perceived as closer to the normal (Biklen, 1992; Nirje, 1969; Smith, 1999a; Taylor, 2006; Wolfensberger, 1977). These principles also serve as the driving force behind the transition focus on independent living and employment for persons with disabilities, itself deeply embedded in the movement towards normalization (Harry, Rueda, & Kalyanpur, 1999). Values associated with self-determination include personal control over the environment, future orientation, and competition (Zhang, 2005). Autonomy, individualism, and self-determination are moral principles deeply rooted in Western thinking and culture (Aichroth, et al, 2002; Clements, 2004).
However, these values and their manifestations are culturally relative, and the ideas of normalization and self-determination as constructed by Western education and human services can be viewed, in some contexts, as colonialist — in much the same way that current special education practice is portrayed as colonialist (Kliewer & Fitzgerald, 2001). With 90% of special education professionals coming from Anglo-European and middle-class backgrounds, those professionals turn to the dominant Western culture to measure what is normative and provide the reference point for services (Harry, Rueda, & Kalyanpur, 1999; Turnbull & Turnbull, 2001). As Taylor (2006) has pointed out, "normalization tended to… promote conformity and assimilation" (p. xix) — colonialist goals of a hegemonic discourse. Another disability studies scholar, Rice (2006), has describe normalization as one of several "techniques of subjugation" that operates by "ordering and classifying people hierarchically" (p.19). Normalization, then, meets the goals of dominant and dominating groups with Western, Anglo culture — and not necessarily the goals of groups constructed as living outside the social boundaries of normative cultural maps.
Different from the culturally normative, Western view of self-determination is the perspective of many so-called Third World, indigenous, and other groups who are culturally marginalized — including some who live in the United States — who see self-determination as a political principle, and who hotly assert their right to a destiny counter to the hegemony of dominant societies (Aichroth, et al, 2002; Clements, 2004). Such groups, typically off the maps of normate social geographies, do not always value Western traditions of individualism, independence, and autonomy (Aichroth, et al, 2002).
Instead, many so-called Third World and indigenous peoples frequently see self-determination as a process of ongoing decolonization, a process that may not yet be done (O'Sullivan, 2005). As with the disability rights movement, indigenous peoples understand self-determination as a human right (Dussias, 2004; Huff, 2005; Mello, 2004) — a right ill-perceived by professionals and support providers (however well-meaning). This right is codified in international law, though contested — and denied — by individual nation-states (Bradford, 2005). In a supposedly post-colonial world — recent incursions into Afghanistan, Iraq, and other countries aside — indigenous cultures continue to struggle with processes intent on destroying language and instating monoculture, perhaps most especially in and through educational industries (McCarty, Borgoiakova, Gilmore, Lomawaima, & Romero, 2005). From a materialist analytical position, public schools, "…rather than attempting to meet the needs of its citizens, have instead devised administrative, curricular, and pedagogical practices that reproduce subject positions which sustain exploitative class hierarchies" (Erevelles, 2005, p. 68).
Indigenous cultures do not always have internal consensus on the meaning or praxis of self-determination, and experience ongoing conflict with a dominant culture that holds conflicting understandings of self-determination (Puisto, 2004). And they mistrust projects encouraging self-determination in education when those projects are only possible because an otherwise colonialist, dominating culture gives permission for them (Lomawaima & McCarty, 2002; Manuelito, 2005). Perhaps partly as a result, some indigenous and other marginalized groups seek self-determination through practices of transformational resistance within educational institutions (Brayboy, 2005).
Culture can be viewed as a shared mental schema or normative understanding of how the world does or should work, including environmental interpretation, settings that are desired or avoided, and participants that are desired or avoided (Gallimore & Goldenberg, 2001). The culture of Western special education, focused as it is on the dominating discourse of Anglo-American beliefs, places value on certain settings, such as independent living and work environments, denying as it does so, all too often, the importance of interdependence, reciprocity, and inclusion.
With the overrepresentation of ethnic and racial minority students in special education, it can be particularly dangerous to use a middle-class, Anglo-European norm as the starting point for transition goals and services. Such norms, often resulting in a deficit, medical model approach, have resulted in practices that can only be described as exclusionary and alienating (Garcia, Perez, & Ortiz, 2000), in spite of best practice orientations that favor inclusion. In fact, some parents from ethnic or cultural minorities may not perceive their children to have disabilities at all, counter to professional opinion and belief (Garcia, Perez, & Ortiz, 2000).
African-American, Latina, and many non-Western cultures encourage values that are different from professionally-defined, Anglo-Western self-determination values (Frankland, Turnbull, Wehmeyer, & Blackmountain, 2004; Garcia, Perez, & Ortiz, 2000; Zhang, 2005). For example, contextual variables that effect self-determination values can include country of origin, school environment, family and individual beliefs, neighborhood, religious beliefs, socioeconomic status, group affiliations, and parent education (Wilder et al., 2001).
The special education bias that all partners in transition planning value normative guidelines is evident in educator attitudes and federal mandates emphasizing work and independent living (McIntyre et al., 2004; Rueda et al., 2005). The values that guide special education such as individualism and consumerism may seem inappropriate to those who are outside the boundaries of dominant, and dominating, Anglo-American middle-class cultural topographies (Trainor, 2005).
It is likely that this disconnect is a major source of transition failure in the United States, especially for students with disabilities and their families who lie outside the boundaries of normate geographies. Interpreted in this manner, the transition success of students with involved parents and enhanced self-determination abilities, as defined by the dominant culture, can be viewed as reflective of the level of assimilation of families and professionals into the hegemony of Anglo-European cultural geographies. Although research has largely found that students falling within dominant, Anglo-American, middle-class normative landscape are more likely to succeed (again, as that term is understood and constructed in Western terms and values), this may be attributable to the collaboration and coordination of families and professionals in otherwise Anglo-European school culture.
When that collaboration and coordination is not possible due to fundamental disagreement between families and professionals, goals are often created by professionals that are incompatible with many family and individual beliefs. Rueda et al. (2005) found that Latina mothers believed the concept of independent living after high school was completely inappropriate, since they believed that marriage marked young adult independence and movement from the family home. Within these families, employment was not considered particularly relevant, but a primary concern was that the young adult become self-sufficient in terms of meeting personal needs.
In many African-American, Asian, and Hispanic families, there is a strong cultural pattern of resisting out-of-home placement and permanency planning for their children based on a philosophy of family interdependence (Harry, Rueda, & Kalyanpur 1999). Frankland et al. (2004) found that among the Dine (Navajo) culture, self-determination was valued but implemented at different stages of life than in Anglo-American culture.
In addition to country of origin and ethnic cultural values, there are many other variables that affect parent perception of self-determination. For example, parents with college degrees and higher incomes encourage greater independence and allow children to make daily decisions with important life impacts, while lower income families tend to allow children to participate in everyday household decisions (Zhang, 2005). Since there is a higher incidence of children with disabilities among families of lower socioeconomic status and parents with a high school education or less, these differences result in a wide gap between professional and parent expectations of the transition process for significant numbers of students (Wells, Sandefur, & Hogan, 2003).
In some cases, school professionals and service providers feel more comfortable dealing with the family perception of self-determination and normalization when there is equitable treatment among all members of a family, disabled and non-disabled (Zhang, 2005). Some professionals are able to accept cultural norms that differ from the mainstream as long as they are not applied to family members in a disparate manner (Harry et al., 1999). This belief is too often based on the assumption that equity is the same as equality, and holds culturally diverse families to a different standard than Anglo-American families. Adolescent decision-making, roles in household tasks, and expectations for the future often differ based on gender, perceived ability, and even birth order in many families (Stoneman, Brody, & McKinnon, 1986). Differential treatment of a child with a disability may be seen as an extension of a pattern of delineating sibling roles, and not an inequity to be corrected by professionals (Harry et al., 1999).
The lack of transition services that meet some family's definition of self-determination, and their perception of the needs of their children, sometimes negatively affects family and student participation in the transition planning process. As a result, families, children, and school professionals may end up at odds during the transition process, demonstrated openly or through detachment (Trainor, 2005). The resulting conflict does not allow for collaboration between families and school professionals.
Detachment may be more significant during the transition period than at any other point in a child's education because families are tired of the "long fight" during the school years (Lovitt & Cushing, 1999). Parent participation among culturally diverse students is perceived by educators to be particularly low during transition, as these parents face more impediments to involvement than Anglo-American families (Geenan et al., 2001). Prior negative experience with school system and processes designed to serve mainstream beliefs that conflict with their own culture dampens the motivation of parents to value the viewpoints of special educators (Shafer & Ramsey, 1997)
Rueda et al. (2005) found that the lack of a shared model for normalization and self-determination led to family confusion, misunderstanding, and isolation, as well as encouragement from professionals for the young adult to adopt the professional's view of independent living even when it contradicted family beliefs. Kalyanpur (1998) found that Native American students were encouraged to engage in self-advocacy and assertiveness training that parents perceived as developing rebelliousness.
As a result, the efforts of educators do not complement parent/family efforts toward transition planning and self-determination. Despite the more independence-based definition of self-determination advocated by professionals, Trainor (2005) found that culturally diverse young adults perceived their home environment, and not their schools, as being facilitative of self-determination. Students from all backgrounds were able to provide specific examples of how their parents promoted self-determination and goal setting.
In reality, the single-minded professional focus on independence and autonomy for young adults with disabilities does more than alienate families. It actually decreases student involvement in the process and obscures self-determination skills. If the professionals know the answers, and know what the student goals should be, there is little room for individualism. Trainor (2005) found that culturally diverse students saw themselves as recipients of school services, not as causal agents, and that student self-determination skills were thwarted in the school setting.
While there is a recognition that it is important to determine which post-school outcomes are valued by families and individuals with disabilities (Chambers et al., 2004), transition plans for all students too often contain goals that are not individualized and are at odds with a person's stated needs. An educational culture of deficit-oriented methods in addressing students and families, as well as planning driven by school personnel and required IEP forms, often results in transition goals that only match the professional viewpoint of success (Trainor, 2005). This unconnected and ineffective method of preparing students for the transition to adulthood is exceptionally damaging to students from culturally diverse backgrounds. Instead of receiving services that could have positive impacts on their lives, students receive IEP goals like obtaining their driver's license when they have no demonstrated or articulated desire to drive (Trainor, 2005).
Professionals who do not understand and express that the values of self-determination, normalization, and transition success are culturally relative and embedded in Western-dominating, Anglo-European-focused special education practice, may cause adolescents with disabilities to face significant challenges in their shift from school to adult life. Inability to acknowledge the values held by families produces distrust and disrespect, which renders supports less effective (Kalyanpur, 1998).
In practice, educators and transition planners must develop a pattern of examining the cultural underpinnings of specific beliefs from which ideals arise. Our focus on independence for persons with disabilities should be viewed as a cultural concentration on individual success, instead of group achievement. The emphasis on work is tied to the dominant Western belief that economic productivity is a measure of personal worth (Harry, 1999). Professional belief in a single set of correct beliefs discourages the partnerships with students and families that are so vital to transition success (Geenan, 2001). In fact, transition success should be better defined by meeting the needs of the family and individual and self-reported quality of life.
Improving the quality of life for all young adults with disabilities, including those from culturally diverse backgrounds, can be achieved through meeting families where they are and complementing family values (Trainor, 2005). While this does not mean that professionals should ignore the principles of self-determination, it does create an emphasis on examining self-determination within the context of different cultures and values (Frankland et al., 2004).
Refusal to understand and respect the effect of culture on the transition to adulthood for persons with disability will only lead to the same failure already prevalent in the special education system (Harry et al., 1999). As transition outcomes for culturally diverse students demonstrate, forcing the dominant values of independence and autonomy upon all persons does not lead to great achievement. Additional research is needed to examine the potential of cultural identity to effect self-determination preferences (Trainor, 2005).
Transforming Practice, Transforming Culture: Not Quite Yet A Conclusion
Self-determination is individually and culturally relative. Given this, tools such as person-centered planning processes, circles of support, individualized funding, and support brokerage are essential elements in bringing choice, control, and power into the lives of people with disabilities and their families (Aichroth, et al, 2002; Smith, 2003).
Person-centered planning includes tools such as PATH's (Planning Alternative Tomorrows with Hope) (Pearpoint, O'Brien, & Forest, 1993), MAPS (Making Action Plans) (Pearpoint, Forest, & Snow, 1993), or COACH (Choosing Outcomes and Accommodations for Children) (Giangreco, Cloninger, & Iverson, 1998). When done with what O'Brien, O'Brien, & Mount (1998) call mindfulness (ways of avoiding dilution and traps of bureaucratic thinking, of ensuring that the focus is on relationships with people), person-centered planning can change people's lives, giving them real meaning and hope, while understanding that "people who are working for real change will find themselves in the midst of political conflict" (O'Brien & O'Brien, 1998, p. 36).
Circles of support go hand in hand with person-centered planning — in fact, such plans are often carried out by active, non-professional circles of support (Aichroth, et al, 2002; Falvey, Forest, Pearpoint, & Rosenberg, 1997). They are intentional, invited, facilitated groups of friends, neighbors, co-workers, family members, and support persons who gather to provide natural support, advice, and friendship for a focus person who does not otherwise have unpaid supports in their life (Carver, Lampman, & Smith, 2008). They have a long and deep history of success in changing both the quality of people's lives, and structure of services and supports (Aichroth, et al, 2002; Falvey, Forest, Pearpoint, & Rosenberg, 1997; O'Brien & O'Brien, 1996; Perske, 1988; Vermont Self-Determination Project, 1998).
There are two essential components to individualized funding. First, people with disabilities who need supports and serves to be fully included in civic and educational communities need individualized budgets that address their specific support needs. A second and often forgotten element essential to the success of individualized funding is the implicit need for direct control of individualized budgets by people with disabilities or their families. Individualized funding is empowering, cost effective, and reduce dependence on professionalized supports. It has the potential for disrupting and transforming support and service structures in powerful ways (Smith, 2003).
Independent support brokers help people with disabilities and their families obtain the supports they need in order to live the lives they want. They are independent from service providers in order to avoid conflicts of interest, working instead for those who receive services. They facilitate person-centered planning processes and circles of support, seek out and obtain resources, help create individualized budgets, and negotiate with providers. They are not case managers; the work of case managers is defined by support providers, while the work of support brokers is defined by people with disabilities and their families (Smith, 2003).
While these tools have begun to be used in human service geographies, their use as underlying policy constructs still lie outside of educational common and mindful practice. That is, while they are processes that have been around for a long while now, have been actively assimilated into (only some) systems of services, and are supported (by some) as best practices, they are still often under-used or used wrongly. O'Brien, O'Brien, & Mount (1998) noted almost a decade ago that without mindfulness, such practices come to assume the same meaningless as other human service practices: mandated, required, bureaucratic structures "…done in service settings that have not embraced the need for profound change" (p. 26) — often of the service system in which they are practiced.
Changing these underlying constructs will require, as will widespread inclusive education projects, "systemic transformative change" (Barton, 2007). Ultimately, to be successful, tools such as these must be placed in the hands of students with disabilities and their families, to create new practice discourses. Their utility is reflected by one parent: "I became more at ease when I discovered new lexicons" (van Hore, de Schauwer, & Stevens, 2007). To put this another way, when parents gain control of the language, praxis, and values surrounding the education of their children, they begin to feel as if they are heard and understood in ways in which they have not been before — that they are seen as experts, instead of second-class citizens.
Transition planning that is more responsive to culturally diverse families has the potential to positively impact individual students and all students with disabilities. If professionals are able to critically examine their roles in discouraging the collaboration between schools and culturally diverse families, they may discover ways to encourage greater collaboration with all families. In addition, professionals can benefit from learning the methods used by families to foster self-determination in their children in culturally-appropriate ways, and be able to design more inclusive transition services for all children (Geenan et al., 2001). Respecting cultural diversity in transition planning can lead to increased recognition of heterogeneity, which will benefit all students.
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