Canadian Journal of Educational Administration and Policy, Issue #43, June 21, 2005. © by CJEAP and the author(s). Policy
and Practice: Acquired Brain Injury in Canadian Educational Systems
The existence of these laws would suggest that all students with exceptionalities should receive appropriate accommodations within Canadian educational systems. However, the connections between legislation, policy, and actual practice do not always translate into appropriate accommodations for students with exceptionalities. This paper will focus on students with acquired brain injury (ABI) and argue that this group is under-identified and under-serviced throughout most of Canada. What is Acquired Brain Injury? ABI is defined as any type of sudden injury that causes temporary or permanent damage to the brain. The damage may be the result of some kind of trauma to the head such as concussion or a motor vehicle accident or could be associated with other factors such as anoxia, toxicity, infection, or a cerebral vascular accident (Bennett, Good, Kumpf, 2003). It is a unique exceptionality for two main reasons: first, that it is acquired at some point during development; and second, that it alters the functioning of the brain in significant and highly individualized ways. While the pattern of deficits vary, difficulties include: maintaining attention, perceptual abilities, processing information, memory, initiating actions, inhibiting actions, decision-making, transferring learning between settings, agitation, emotional outbursts, social inappropriateness, difficulty reading verbal/nonverbal cues, self awareness, and cognitive fatigue (see Bloom, Nelson, & Lazerson, 2001; Glang, Singer, & Todis, 1997; Lezak, 1995; Savage, 2000; Wood, 1990; Yeates, Ris, & Taylor, 2000). These cognitive, emotional and behavioural difficulties are in addition to any physical difficulties a student may experience such as: disruptions in both the central and peripheral nervous systems; difficulty in any of the sensory areas, such as vision, hearing, olfaction, taste, and somatosensation; loss or deficits in fine and/or gross motor control; muscle spasticity; paralysis or paresis; orthopedic sequalae; and exhaustion (Snow & Hooper, 1994; Savage, 2000). The prognosis and outcome for children who experience ABI is more unpredictable than that of adults as the interruption of the nervous system’s development can have a profound effect (Lehr, 1990). Severe injuries can result in good outcomes while apparent mild injuries can translate into poor outcomes (Savage, 2000). Each student’s prognosis and outcome is variable due to factors such as point of injury, extent of injury, and age at which the injury occurred (Banich, 1997; Lehr, 1990). The child’s age at time of injury is a particularly important variable as it provides information about the state of the brain in terms of how much plasticity is available for the brain to compensate for the injury and by indicating what kinds of “sleeper” effects could be expected (Kolb & Wishshaw, 2001; Savage, 2000; Waaland & Kreutzer, 1988). For example, if a child experiences an injury to the frontal lobe area in kindergarten some of the associated deficits will not emerge until grade seven or eight. By and large, the special education policies that are in place in Canada’s educational systems, do not recognize ABI as a specific exceptionality that requires accommodation. While students with well recognized disorders such as autism or developmental delay are clearly delineated within the majority of educational jurisdictions, students with ABI and their families often have to depend on definitions that are vague and result in very little specific direction with regard to remediation. A review of legislation, policy and practice at the provincial and territorial levels will demonstrate that the legislation and policies that have been put into place to protect children’s right to education and ensure that every child receives appropriate accommodations are not working to protect the rights of students with ABI. Special Education in the Provinces and Territories Unlike the United States, education in Canada is legislated by each Province or Territory (Dworet & Bennett, 2002). Thus, with the exception of federal provisions made regarding the education of Aboriginal students (which are beyond the scope of this paper), Canada lacks any Federal legislation other than the Canadian Charter to govern how education is provided across Canada. While the ten provinces and three territories differ in terms of specific special education policies, they are remarkably similar in terms of having compulsory education laws that support the inclusion of special education students, the tendency to support inclusion or at least inclusion as the first choice, individualized education programming for students with identified needs, parental involvement in assessment and placement processes, and procedures for the appeal of special education decisions (Dworet & Bennett, 2002). A brief review of how the provinces and territories address the provision of special education will reveal key issues that affect the accommodation of individuals with ABI. Each province and territory has its own approach (see Table 1) but for the most part legislation, policy, and practice follow similar pathways. One of the important differences between the provinces and territories is the pattern of difficulties experienced in the pathway from legislation to policy to practice. Table 1. Summary of Provincial/Territorial “Special Needs” Legislation
In the province of Newfoundland and Labrador, the Schools Act (1997) and its later amendments defer all details associated with the planning and delivery of special education programming to the Province’s Special Education Manual (Philpott & Nesbit, 2001; Philpott, 2002). The Act requires the boards to follow guidelines and policies regarding special education that are issued by the Minister. Within those policies and guidelines, disabilities/exceptionalities are recognized as conditions requiring accommodation. The most striking difference in the province’s treatment of special needs is its’ policy of following a model of interdepartmental coordination of services that provides individuals with special needs a continuous service delivery. The province also subscribes to policies that emphasize the acceptance of student diversity, shared responsibility among educators, collaboration among stakeholders, and equal access to education (Philpott, 2002). The interdepartmental coordination of services provides residents of Newfoundland and Labrador with “cradle to grave” continuity of service. Thus, some special education provisions are associated with the Act Respecting Child, Youth and Family Services (1998) (Philpott & Nesbit, 2001). In terms of educational applications, this often translates into children entering schools with special needs already identified and interdepartmental teams well in place. When students are identified after entering school, the province has the infrastructure to establish a team and put the needed programming into place. Overall, there is improved communication between various governmental departments and consistent services for individuals. Within the school system, educational services are coordinated through “Individual Support Planning Services” (ISSP) that help educators design service and program plans that meet the needs of the individual. In New Brunswick, the linguistic duality of the province results in two distinct education sectors, anglophone and francophone, within the Ministry of Education (Goguen, 2001). Students with exceptionalities must be classified as “behavioural, communicational, intellectual, physical, perceptual, or multiple exceptionalities that contribute to delayed educational achievement” (Education Act, 1997). Those students who are identified within the set parameters of “exceptionality” are provided with special educational programming under the Act, however, the level of inclusion is at the discretion of the Superintendent. Support documents provided for educators stress the importance of inclusive classrooms and set criteria for when alternative education might be necessary. These support documents vary to some degree for each of the educational sectors (Goguen, 2001). All students receive individualized educational program plans. The province has clearly shifted towards a more inclusive model of special education delivery but still needs to strive towards improving educational services (Goguen, 2001). Nova Scotia’s Education Act (1995-96) mandates education for all students. In accordance with the directives and policies of the Minister of Education, any students identified as having a special need are entitled to receive programming and services, including an Individualized Program Plan (IPP). The special education policy supports the student’s right to inclusive schooling and appropriate education that is responsive to the individual student’s needs. Funding for special needs services is provided for those with cognitive impairments, emotional impairments, physical or health related difficulties, speech or language impairments, visual or auditory impairments, giftedness, and multiple disabilities. A review of special education has recommended a need to establish clear definitions and criteria leading to access to special education programming (Power, 2001). The review also addressed the need for more consistency in the implementation strategy across school boards. Prince Edward Island’s School Act (1993) and the Minister’s Directive on Special Education (MD 2001-08) is very vague with regard to how special needs are accommodated. What is clear is that the school boards are responsible for developing policies for referral of students who may need services and accommodations as well as policies to guide the development and implementation of Individualized Educational Plans (IEPs). A review of the province’s special education services recommended that PEI clarify its philosophy with regards to special education and implement an identification system that linked the definition of disabilities to eligibility for services (Timmons, 2001). While there are some problems with the consistency of implementation and practice across the province, PEI is advancing towards inclusive education. The elementary schools have no segregated classrooms and the high schools are making advances towards a more inclusive system, it is the written policies that are lagging behind the practice (Timmons, 2001). Conversely, a review of special education in British Columbia has revealed that while there is an excellent policy framework in place, practice lags behind policy (Siegel & Ladyman, 2000). Currently, the provision of special education operates under a framework provided by the Ministry’s manual, “Special Education Services: A manual of Policies, Procedures, and Guidelines” (British Columbia Ministry of Education, 1995). British Columbia’s School Act (1996) contains a broad definition of special needs that includes “learning disabilities; disabilities that are intellectual, sensory, behavioural, emotional, or physical; exceptional gifts or talents”. The Act also includes a provision for the creation of an Individualized Education Plan (IEP) for any student identified as having special needs and supports inclusive schooling while allowing for exceptions to that policy. In Alberta under section 48 of Alberta’s Education Act (2000), accommodations are provided based on students’ “behavioural, communicational, intellectual, learning, physical characteristics, or some combination”. The Act also provides individual school boards with the ability to use discretion in the determination of a student’s need for accommodation as well as allowing for exceptions to inclusive schooling based on the board’s discretion. Special Education is also governed by Ministerial orders that must be implemented and adhered to by all school authorities (Lupart, 2001). A review of special education programming provided 66 recommendations for improvement, including a focus on how special education is accessed (Alberta, 2000). Saskatchewan’s Education Act (1995) provides for accommodation for students on the basis of handicap, disability or other disabling personal attributes. It also specifies accommodation as appropriate in the case of limitations due to physical, mental, behavioural, or communicational disorders. Those students who are identified as possessing special needs that require accommodation, receive Personal Program Plans that outline the needed accommodations and educational expectations. Furthermore, while the Act states that all students are to be provided with educational programming consistent with needs and abilities this provision is for special needs students and the school boards retain the right to exclude students from particular educational programming but not to deny educational services. The Ministry of Education has recognized the difficulty of putting policy into practice and is actively working towards a more inclusive model of education (Patterson & Hoium, 2001). Similarly, in Manitoba the provision of education falls under the Public Schools Act (1987) and the provision of appropriate educational programming falls under Bill 13 (2004). This Bill is not meant to be restricted to appropriate education for those students with identified needs but to support the provision of appropriate programming for all students. Bill 13 describes inclusion in a very broad sense and was written in response to criticisms that the Public School Act was not consistent with the Charter of Rights and Freedoms, particularly with regard to exceptional students’ right to access education. Lutfiyya and Walleghem (2001) argue that Manitoba has taken a “reactive stance” that has adversely influenced the development of policy and practice related to special education. An Individual Education Plan (IEP) is required for all students with special needs but funding for these students’ accommodations is organized under a three tier or level system. Each level of the system includes the description of specific special needs/disorders as well as more general descriptions. A review of special education programming in Manitoba has identified the need for more clarification of special education policies and more consistent support of the implementation and practice of the policies (Proactive Information Systems, 1998). Ontario’s Education Amendment Act (Bill 82, 1980) made clear the requirement that every child was to receive education despite having an exceptionality. While many of the provisions of Bill 82 have been changed or removed, the principle provisions around special education remain in the Education Act (1990). School boards were mandated to develop an Identification Placement Review Committee (IPRC) procedure to identify students as exceptional. Within the Act five specific categories of exceptionality (behaviour, communication, physical, intellectual, or multiple) are outlined. In Ontario, funding is linked to, but not exclusive to identification by the IPRC process. This categorical model of funding and providing access to special education services can be prohibitive for those students who do not fit neatly the province’s recognized categories and may also undermine the translation of policy into effective practice (Bennett, Dworet & Diagle, 2001). Quebec’s Education Act (1999) stipulates that all students have a right to education and other services, including special education. Those students who are identified as handicapped or possessing social maladjustments or learning disabilities are entitled to Individual Education Plans (IEPs) and adaptations to educational services. The Minister of Education of Quebec is responsible for defining educational policies and putting those policies into practice. However, schools boards retain some autonomy in how those policies and implemented within their jurisdiction (Dore, Wagner, & Dore, 2001). Overall, the Ministry of Education has promoted a “mainstreaming” approach to special education and is showing some tendency to include elements that are more inclusionary in nature (Dore, Wagner & Dore, 2001). The Northwest Territories’ Education Act (1995) contains a broad definition of needs that require accommodation. If accommodation is needed then an Individualized Educational Plan is deigned to meet the student’s needs. The District Educational Authority (DEA) retains the right to require assessment of an individual to determine need. While every student has the right to education in his/her community, the DEA retains the right to make exceptions to this and provide programming in a location other than the community school. The situation in Nunavut is very similar to that of the Northwest Territories. This is not surprising as Nunavut inherited the Northwest Territories’ Education Act (1995) in 1999. According to the draft Nunavut Education Act (2004), all students have a right to inclusive schooling and the DEA provides supports as necessary to facilitate a student’s full participation in educational opportunities. The use of Individual Education Plans is also mandated in cases where a specific need for accommodation exists. There are no identified categories of need and the DEA retains the right to provide programming outside of the community school as it deems appropriate. Unlike the Northwest Territories and Nunavut, Yukon does have categories of exceptionalities. According to the Education Act (2002), all students are to be provided with educational programming that is consistent with their needs and abilities. Specifically, accommodations are allowed on the basis of disability, handicap, or other disabling physical attributes. The categories of need are as follows: physical, intellectual, communicative, behavioural, or multiple exceptionalities. If a student meets one of these categories of need then an Individualized Education Plan must be “provided in the most enabling, least restrictive environment to the extent that it is practicable”. Clearly, the provinces and territories differ in how special education is addressed in the legislation, conceptualized in policy, and implemented as practice. While some provinces like British Columbia have solid policy frameworks but difficulty with putting policy into practice, other provinces like Prince Edward Island have ambiguous policies that lag behind practice. The territories struggle to create educational systems that meet the needs of their diverse communities and face problems that are similar to the provinces but often more extreme. Each has committed to an inclusive model of schooling that is strengthened by its natural cultural fit and yet is hampered by geographic distances, funding issues, lack of specialized services, and lack of training opportunities (O’Donaghue, 2001). All of the regions of Canada struggle with the provision of special education services, and most have been formally reviewed and presented with a series of recommendations regarding how to improve provision. All of the reviews shared common themes and called for increased consistency between policy and practice combined with improved access and responsiveness. Acquired Brain Injury: The Unacknowledged Category In the case of students with ABI, access and responsiveness are key issues. Most of the education systems use a categorical model, which researchers have argued is outdated and may exclude individuals, such as students with ABI, who do not fit within the recognized categories (Bennett, Dworet & Diagle, 2001; Timmons, 2001). While the status of ABI in the Canadian educational system is best described by its lack of status or recognition as an exceptionality requiring accommodation, two of Canada’s provinces, Newfoundland and Labrador and British Columbia, recognize ABI to some extent. Newfoundland and Labrador specifically recognizes ABI as a distinct exceptionality that requires accommodation. In terms of legislation, there is no recognition of ABI as a category of exceptionality in the Schools Act (1997). However, within the policies and guidelines set by the Minister of Education ABI is recognized as a specific condition requiring accommodation. ABI also finds recognition in British Columbia, although it is not specifically identified in the School Act (1996). While ABI is formally recognized as falling under the exceptionality categories in Newfoundland and Labrador’s educational policy, British Columbia’s recognition is implied. British Columbia’s Ministry of Education has provided educators with “Teaching Students with Acquired Brain Injury: A Resource Guide for Schools” (2001), a manual that clearly validates ABI as an exceptionality. Table 2. Recognition of Acquired Brain Injury in the Canadian Education System
The remaining eight provinces and three territories either fail to identify ABI in any way or provide very brief reference to it (see Table 2). Therefore, it is not surprising that one of the most common experiences of students with ABI is that of being mislabeled. All of the provinces and territories have broad definitions that may allow for the accommodation of students with ABI, but accommodation in this manner is often either the result of unintentional mislabeling or the necessity of fitting an individual into a category that provides access to special education funding. ABI in the Classroom The Sherk Consulting Group (1999) conducted a provincial review of services for youth and children with ABI in consultation with PABIAC (The Provinical Acquired Brain Injury Advisory Committee). This provincial review made recommendations that the Ministry of Education take steps to address a number of issues in relation to the provision of education for students with ABI. Those recommendations included increasing awareness and knowledge of ABI among school personnel, including curriculum models on ABI in basic teacher training and in additional qualification courses for special education teachers, establishing ABI as a category of exceptionality, and providing programming adaptations to meet the needs of students with ABI (Sherk Consulting Group, 1999). Many of these recommendations would apply to the other provinces and territories within Canada and help alleviate the challenges faced by students with ABI in Canada’s classrooms. In the classroom, individuals with ABI may not demonstrate patterns of disability that qualify them for accommodations under existing educational categories such as learning disabled or if they do qualify for accommodation under such categories, they often do not benefit from the associated accommodations (Bennett, Good, Zinga, & Kumpf, 2004; Waaland & Kreutzer, 1988; Savage, 2000). ABI has a unique sequelae in each affected individual, and the pattern of deficits demonstrated by any given student will vary across time and situations, requiring that strategies be implemented on a trial and error basis, with frequent reevaluation and alteration (Bennett, Good, & Kumpf, 2003; Good, Bennett, & Zinga, 2000; Glang, Singer, & Todis, 1997; Savage, 2000). In addition, the implementation of strategies can be complicated by the existence of previous expectations of ability and the student’s awareness of previous abilities (Bennett et al., 2003; Glang et al., 1997; Savage, 2000). If the student has returned to the same school setting, educators may have expectations based on previous experiences with the student and these expectations may no longer be valid given the student’s current abilities. Students with ABI may also be intentionally mislabeled due to bureaucracy. If funding can only be obtained for special education accommodations by assigning students into recognized funding categories, then educators may be forced to try and fit the square ABI peg into a round recognized exceptionality hole. This mislabeling of students with ABI may obtain funding for accommodations but often at a high price. It leads to the implementation of strategies that are based on operational assumptions about what is effective for the exceptionality that was used to label the student, and thus the programming fails to address the complex presentation of ABI (Bennett et al., 2004; Bennett et al., 2003; Clark, 1996; Cooley & Singer, 1991; McKerns & McKerns-Motchkavitz, 1993). The lack of adequate educator training and support further complicates the appropriate accommodation of students with ABI. The majority of educators within Canada are not provided with any specific training in regard to the needs of students with ABI either in pre-service programs or in-service courses. The delivery of special education services throughout Canada has been criticized as needing more comprehensive training for educators and more reliable supports to enhance the consistency between policy and practice. So even if a student with ABI can gain access to accommodations, those accommodations are very likely to fall far short of the needs of the student (Bennett et al., 2004; Waaland & Kreutzer, 1988). Challenges and Barriers to Educational Accommodation Clearly,
with the noted exception of Newfoundland and Labrador and British Columbia,
students with ABI have a difficult time being recognized as in need of
accommodation and being supported under the special education policies
within Canadian Educational systems. It is particularly striking that
this is common across the various educational systems within Canada and
not a problem specific only to one or two provinces or territories. While
the special education categories legitimized in each province or territory
differ, a majority agree in their exclusion of ABI as a category of exceptionality.
Many would argue that there is enough flexibility within the categorical
or noncategorical models to allow students to receive excellent service
without specific identification criterion. While students with ABI may
benefit from strategies and resources provided, the idiosyncratic nature
of this injury requires a more knowledgeable and focused approach and
less reliance on serendipitously beneficial intervention. While there is a need both for accountability of the funds spent on accommodating special needs and some method for calculating the financial need of school board budgets based on the needs of all students, this close association between funding guidelines and special education categories is problematic. The close relation between funding categories and special education categories further legitimize some special needs, creating a system of “have” and “have not” students. Furthermore, the legitimizing of distinct special needs both through special education categories and funding guidelines also serves to direct the collection of data that is used to deploy training resources. For example, as ABI is not legitimized as a special need in most provinces and territories those educational systems do not collect data on the prevalence of ABI in the system. Thus, when decisions are made regarding where resources for additional training and supports are to be allocated, ABI is not seen as viable choice. It is evident that training opportunities and support for educators around the needs of students with ABI are insufficient and that it lack of recognition will continually place students with ABI in the “have not” group of students. Only one province/territory has devoted any significant resources to specifically supporting educators in the delivery of accommodations to students with ABI. British Columbia’s Ministry of Education has produced a manual that supports educators in addressing the needs of students with ABI in the classroom. While the other provinces and territories all have some form of special education manuals and support materials, ABI gets extremely brief mention and on occasion is inaccurately depicted as the underlying cause of a different special need. Within Canadian classrooms, students with ABI continue to face difficulties in becoming recognized as needing accommodation, a process that is made difficult both by the lack of awareness about ABI and the system of funding based on categorization of exceptionalities. What is particularly poignant about the situation faced by students with ABI is that accommodations within the educational system can be successfully accomplished. This has been demonstrated time and again by the existence within the same provincial or territorial educational systems of cases in which one student with ABI has appropriate and substantial accommodations while another does not. This is particularly prevalent when comparing cases in which an insurance company has accepted responsibility for the injury and associated accommodations with those cases in which an insurance company has no liability. For example, when an ABI is acquired due to a car accident the associated insurance company has a commitment to provide for the student’s needs as associated with the injury. Once the plan of treatment and accommodation has been agreed upon, the student may gain substantial accommodations that greatly improve his/her academic outcomes. While these accommodations are deemed to be necessary and approved by the insurance company’s strict regulations such accommodations would not be forthcoming for the student whose ABI was the result of an accident not covered by an insurance company. Conclusion Students with ABI face significant challenges as a result of their injuries, these challenges are compounded exponentially by the difficulties that they face in obtaining access to appropriate educational accommodations. Out of ten provinces and three territories, only two provinces recognize and make provisions for students with ABI. This is indicative of the fact that ABI is under-recognized and often poorly responded to in Canada’s educational systems. In reviewing the special education legislature, a number of issues around the provision of accommodations became evident. These issues included the lack of federal guidelines as to the definition of “exceptionalities”, the lack of awareness of ABI as an exceptionality requiring accommodation, the disturbing connection between the categorization of exceptionalities and funding, inconsistency between policies and practices, and the lack of training and support for educators. Substantial changes in Canada’s educational policies are required in order to adequately address the needs of students with ABI. One of the first steps towards making positive change would be the recognition of ABI as a category of exceptionality within provincial and territorial legislation. The deployment of resources and supports for educators both at the pre-service and in-service level of the profession are needed to adequately prepare educators for the challenges associated with ABI. These two actions would make significant positive changes in the recognition and awareness of students with ABI and their needs. Federal guidelines may be needed to address the issue of making special education policies more consistent across Canada and to address the issue of funding linked to special education categories. Each province and territory maintains control over its own educational systems but common elements such as federal guidelines or the reference and adherence to articles such as the United Nations Convention on the Rights of the Child (1990) would help ensure that the policies put in place to protect the rights of children do not become barriers that exclude children from appropriate accommodation within Canada’s educational systems. References Alberta.
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