Autism Society Ontario

Transcription

1 Autism Society Ontario Submission to Ontario Human Rights Commission on Education & Disabilities October 7,

2 Introduction Autism is a complex developmental disability that typically appears during the first three years of life: it is the result of a neurological disorder that affects the functioning of the brain. Autism and its associated behaviours commonly referred to as Autism Spectrum Disorder (ASD), have been estimated to occur in as many as 1 in 500 individuals. (Current studies indicate this number may be as high as 1 in 200). Autism impacts the typical development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. They find it hard to communicate with others and relate to the outside world. In some cases, aggressive and/or self-injurious behaviour may be present. Understanding of autism has grown tremendously since it was first described by Dr. Leo Kanner in To cure means "to restore to health, soundness, or normality." In the medical sense, there is currently no known cure for the differences in the brain that result in autism. International research efforts are now focused on the biological, neurological and genetic factors associated with ASDs and on effective treatment and educational strategies. Better understanding of the disorder has led to the development of better coping mechanisms and strategies for the various manifestations of the disability. Some of these symptoms may lessen as the child ages; others may disappear altogether. With appropriate early and ongoing intervention, many of the associated behaviours can be positively changed, even to the point in some cases, that the child or adult may appear to the untrained person to no longer have autism. The majority of children and adults will, however, continue to exhibit some manifestations of autism to some degree throughout their entire lives. It is estimated that over 20,000 people in Ontario today have autism or some form of Autism Spectrum Disorder. It is one of the most common developmental disabilities. Yet most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how they can effectively work with individuals with autism. The mission of Autism Society Ontario is to ensure that each individual with an ASD is provided the means to achieve quality of life as a respected member of society. With ratification of the United Nations Convention on Rights of the Children and Declaration of the Rights of Disabled Persons Canada ushered in the new century with an era of equity. Ontarians take pride in living in an equitable society where individuals with special needs can effectively access the vast resources available to its citizens. Ontarians pride themselves in high standards for public education that ensures equity for all students. Unfortunately equity has not been achieved through provision of special education across the province of Ontario. This leaves the special needs students in general and students with ASD in particular in a vulnerable position. 2

3 1. Access to education What other barriers to education for persons with autism spectrum disorder are you aware of? 1. A major barrier is the Ministry of Education lack of accountability to the Human Rights Code. Children with disabilities are not accommodated in the same degree as disabled adults. This is most apparent in the elementary and secondary panels. If the code applies to children then the Ministry of Education must be made to comply. The Ministry of Education is failing to meet the standards of the code and the decisions from the Supreme Court of Canada. The OHRC has standards in place and must ensure that the school boards and Ministry are meeting the code in all current legislation. It is not acceptable to place the burden on families to prove their child needs specific services or accommodations. A significant barrier to parents is Regulation 181 and the subsequent Appeal process under the Education Act. The key issues are: Recommendations regarding programs and services cannot be appealed under the Education Act. The current legislation does not have a meaningful process in place for parents to resolve these types of concerns. The Education Act and Regulations do not define the term placement. The Special Education Appeal Committee decisions must remain in the context of the current special education plan for the school board. If the school boards special education plans are inadequate there is no avenue for appropriate resolution. The Appeal Committee is not empowered to order any recommendations that it makes be implemented by the school board. These recommendations are subject to the Board of Trustee s decision whether or not to implement them. From the beginning of the Appeal process, a parent is already disadvantaged as they are aware that decisions are at the discretion of the school board where the conflict has arisen. 3

4 The members of the IPRC are often administrators of programs and funding allocation. This does not allow for unbiased decisions to be made in the best interest of the student. The current Tribunal process discriminates against parents. When a parent requests a Tribunal hearing, the school boards have unlimited financial resources available for legal representation. The parents of the disabled student must bear the financial burden of legal representation themselves, or present the case at the Tribunal on their own, without the advantage of legal counsel. Other parents are unable to pursue their case to the Tribunal level because of the prohibitive costs of legal representation and an inability to present the case themselves at the Tribunal. The Education Act states that the Tribunal s decision is final and binding on the parties. However if the Tribunal orders specific services or placement for the student, the school board may still opt to file a judicial review of the order. Allowing a school board to appeal the implementation of any Tribunal decisions indicates that Tribunal decisions are in fact not final and binding, and suggests that the only decisions that will be binding are those that are acceptable to the school boards. The Ministry of Education has set standards for IEPs and School Board Special Education Plans. The Ministry of Education has not held school boards accountable for those plans, and enforced compliance with its standards. While parents are told that standards are in place to ensure the quality of special education for their children, in practice that is not the case. Section 34 (1)(a) of the OHRC does not allow a parent to easily proceed with a human rights complaint. The OHRC requires a parent to follow the appeal process under the Education Act. 2. A second barrier to education for students with autism is discrimination against this particular disability. This discrimination may result, in part, from a lack of understanding of the disability and lack of current knowledge on how to effectively work with these students. Autism Spectrum Disorder is also a communication disorder. Approximately one third of people with ASD never learn to talk. Another one third have significant communication problems, resulting in limited functional communication. Yet the Ministry of Education and individual school boards fail to treat the communication needs of ASD students as a major factor in their education. Students who are deaf have access to specialized teachers of the deaf, and schools do not try to educate deaf children without ensuring that they can communicate in some way, either through sign or oral language. There are Provincial Schools for the deaf. Yet there is no specialized approach to communication for students with ASD, many of who have communication problems as severe as those of deaf children. The Ministry of Education does not mandate that schools provide specialized 4

5 communication programs developed for students with ASD, specialized staff, and staff trained in the communication needs of the ASD students. Schools routinely attempt to provide an education to students with ASD who have no means of communication, but without a means of communication it seems unlikely a child can have equal access to the education system. Students with Autism Spectrum Disorder also have severe social skills deficits. These deficits can lead to Asperger s students dropping out of high school because of the social stresses. Students with ASD may be suspended from schools because their social skills deficits lead to difficult and inappropriate behavior. It is these social skills deficits that will prevent many people with ASD, at all functioning levels, from participating fully in society as adults. The education system should address these social skills deficits. To not address these deficits, and to treat inappropriate behaviors of ASD students as if they were not an inherent part of their disability is to discriminate against these students. Research shows that people with ASD think and learn differently than others. Their brains process information differently than do people with typical development and with other developmental disorders. If students with ASD are to have equal access to education, then they must have access to curriculum materials designed for ASD students and specialized teaching staff that understands the unique learning style of students with ASD. Students who are blind are not expected to learn to read using the material that typical students use, yet students with ASD are routinely denied access to specialized reading programs and other curriculum material. There are specialized teachers for the blind and the deaf because of their unique learning needs, and the unique learning needs of the ASD student should be equally recognized. 3. A third barrier to education is a funding formula for special education that discriminates against students with ASD. The current funding formula for special education is inadequate to meet students needs. School boards do not have sufficient funding to provide students with ASD with specialized curriculum material, assistive technology, specialized staff such as autism teachers and speech and language therapists, and educational assistants. Typical students have access to appropriate curriculum material and qualified teachers. Given that the funding formula is inadequate to provide students with ASD equally appropriate curriculum material and staffing, the current funding formula is a barrier to education for students with ASD. 4. A fourth barrier to education is the enforced short and long-term absence from school for many students with ASD. Students with ASD often spend less time in school than other students. They may be routinely dismissed early, because there is not full time Teaching Assistant support for them, or because the schools send their special education students home early. They may be asked to stay home on days when there will be a 5

6 substitute teacher, or when there is a field trip. Students may be sent home on therapeutic leave and informal suspensions when their behavior is difficult. Many students with ASD are home on a long-term basis because school boards cannot find an acceptable placement for them. A student may be home for an entire school year or more. The student s behavior may have resulted in a suspension from school but there is no expectation that the student will return to school because it is generally recognized that the placement is not working. These long-term absences from school discriminate against students with ASD in their ability to equally access education. Applying the principles in the Policy and Guidelines, how can these barriers be addressed? 1. The OHRC must direct the Ministry of Education and school boards to operate under the strict policies and guidelines of the Ontario Human Rights Code. 2. In the event of non compliance, the OHRC should ensure that parents have a meaningful recourse to a remedy. A timely and just process that will not disadvantage the student s progression through the school system is required. 3. The Legislation and subsequent Regulations of the Education Act must adhere to the principles of accommodating for the disabled student. Necessary accommodations include: Specialized communication programming, designed by speech and language therapists knowledgeable about ASD, and implemented by trained staff, for all ASD students who require this Social Skills training courses for students with ASD, designed by specialized staff knowledgeable about ASD, and implemented by school boards across the province Curriculum material designed and appropriate for ASD students available across the province Specialized teachers in ASD, and professional development focused on teaching ASD students for teachers and educational assistants, available across the province Appropriate classroom placements for students who are on long term absence from school 4. The OHRC must direct the Ministry of Education to fund special education to a level such that school boards can provide students with ASD with the services and supports they require in order to have equal access to education 2. Disability and Other Forms of Discrimination 6

7 Can you provide examples in which students with disabilities are affected also by being members of other historically disadvantaged groups? Students with ASD who are French speaking face even greater challenges in receiving the specialized resources they may need. 3. Negative Attitudes and Stereotypes What best practices are you aware of for reducing negative attitudes, stereotypes and harassment directed towards students with disabilities in the education system? The demystification of disability through education has been and will continue to be the most effective way to dispel ignorance and negativity towards those who have disabilities, both physical and developmental. Typical persons or those without disabilities experience two kinds of anxiety when confronted by those with disabilities: existential and aesthetic. Existential anxiety refers to the threat of potential loss of functional capabilities by the non-disabled. Aesthetic anxiety is aroused by the differences in appearance by those with visible disabilities. When confronted with the concept of disability or a classmate who is disabled, other children want to know: Can I catch it? Does it hurt? These questions are universal and when they are answered, a level of comfort is established that allows for a more easy interchange. Providing school children with a Disabilities Curriculum would be an effective and do-able means by which to set about assuaging and even eliminating many of the anxieties experienced by the non-disabled. In the creation of such a curriculum, the following factors can be considered: The implementation of a Disabilities Curriculum may be most appropriate at the intermediate level (gr. 6-8) as students would be more able to understand some of the more complex medical issues related to disability and would perhaps carry more of the information into adulthood While the more in-depth study of disability would occur at the Intermediate level, there would be a curricular expectation and guidelines to include information and children s literature on disability throughout the grades The implementation of this unit would not be optional It would be a unit comparable in length and complexity to the other units outlined in the Ontario Curriculum, possibly under the general subject area of Social Studies or Health The creation of a Disabilities Curriculum would be a systematic approach to the demystification of disability in our society, thus enabling more meaningful and welcome inclusion of our citizens who have disabilities The creation of a Disabilities Curriculum has the potential to reach all students in this province and influence the attitudes of all its citizens towards the accommodation of persons with disabilities. 7

8 4. Labelling What examples exist of policies and procedures that avoid labels for students with disabilities? While labeling is generally considered to be negative, and places the emphasis on a group identity, rather than on the individual, ASO takes the position that labeling of students with ASD can be positive. Students with ASD, particularly those with better language skills, are often seen as exhibiting intentionally poor behavior. Other students may see them as weird. Once these students are identified as having ASD, a neurological disorder, there is often greater acceptance of them. The label has helped to identify them as disabled and not as rude, offensive, or weird. In terms of policies and procedures that avoid labels for students with disabilities we note that ASO has not taken the policy that the ISA funding process is automatically negative, since it focuses on the student s weaknesses, rather than his strengths. It is our view that the current ISA profiles for ASD are inadequate and do not recognize the needs of the individual students. 5. Appropriate Accommodation Given the principles set out in the Policy and Guidelines, what specific guidelines should inform the determination of the most appropriate accommodation in an educational setting? All guidelines for determining the most appropriate accommodations for students with ASD should derive from what is in the best interests of the child. Best interests of the child should be considered in the context of parental wishes, current knowledge of autism spectrum disorder, and the student s right, under the Education Act, to appropriate services and programs. When determining appropriate accommodations for students with ASD placement issues are a central issue. It is ASO s policy that all school boards offer a full range of placement options, ranging from full integration to full segregation, in order to meet the diverse needs of students with ASD. The Ministry of Education has stated that integration is the norm, when it is in the best interests of the child, and there is parental agreement. ASO supports integration for students with ASD. When there is adequate support for the student and a program to promote social interaction with the ASD student, integration can be successful, and allow for meaningful participation in the classroom. However ASO believes that many students with ASD, at various stages of development, across all functioning levels, may benefit from specialized, segregated classes. For example, high school students with Asperger s 8

9 Syndrome may experience extreme anxiety and not be able to cope in an integrated setting. For many of them a specialized Asperger s class is in their best interests. Some lower functioning students with ASD may be unable to participate in an integrated classroom in a meaningful way, and are better placed in a specialized autism class. An important goal of education for students with ASD, as for all students, is to produce adults who can meaningfully participate in the life of their community. For some students with ASD segregated classes can offer the opportunity to complete high school or learn skills that are not taught in typical classrooms but will allow them to function more fully in the community as adults. If integration during the school years is not the best way to produce adults who can meaningfully participate in the community, then it is not in the best interests of the child. Another important area of accommodation is the use of specially trained staff and curriculum material developed for ASD students. If students do not have access to staff that is trained in the unique learning style of ASD students, and curriculum material designed for their needs, then accommodations cannot be considered to provide them with equal opportunity for education. What tools could the OHRC provide to assist persons responsible for accommodating students with disabilities, as well as those seeking accommodation, to apply the principles for appropriate accommodation set out in the Policy and Guidelines in an educational setting? The OHRC could provide the Ministry of Education and individual school boards with copies of its publication Policy and Guidelines on Disability and the Duty to Accommodate. It seems probable that school boards do not consider their actions in terms of the Human Rights Code. 6. Accommodation Process What best practices are you aware of for accommodation policies and procedures in an educational setting? Processes for accommodation in the primary and secondary levels focus on the IPRC and IEP processes. The Government has introduced standards for IEPs and best practices should include compliance with those standards. However the school boards are often not in compliance, and the Ministry of Education has not enforced those standards. Similarly there are rules in place for the IPRC process, and school boards do not always comply with those rules. The Ministry of Education does not enforce its rules for the IPRC process. School boards are required to submit annually the Special Education Plan outlining how special education is delivered within the school board. However it is the Ministry of Education s responsibility to ensure that school boards have provided plans that meet the needs of all their disabled students. The Ministry of Education has 9

10 approved plans that do not adequately provide for the needs of special education students. 7. Roles and Responsibilities Based on the principles set out in the Policy and Guidelines, what should be the respective responsibilities of parents, students, educators, government and other parties for accommodation of students with disabilities? For many persons with disabilities, particularly physical, accommodation has meant access access to buildings, streets, transportation, education and opportunities, as well as the ordinary activities of daily living. For persons with developmental disabilities, accommodation has come to mean permission to attend - to be included in the environments in which typical citizens pass their lives. As a result of the work of many parents, advocates and legislators, accommodation has also come to mean education and inclusion in regular classrooms, as well as a range of other educational settings in order to meet the needs of the student through the stages of her/his development. The fact that we use the term accommodation to describe the inclusion of our citizens with disabilities in the fabric of our society points to the ongoing otherness with which these persons are regarded. While we share common social responsibility to include and care for all citizens regardless of ability, there are certain responsibilities that may be specifically addressed by persons concerned with the welfare of children: Parents: To the best of their ability, to become informed advocates for their children To educate themselves about the nature of their child s condition or disability To the best of their ability, provide a safe and nurturing environment To seek out medical/professional assistance to sustain and enhance the child s health and potential for learning Educators/School Boards: To provide a safe and welcoming environment for all students To enable access to all school buildings and to ensure that all new facilities are fully accessible To the extent possible, to provide a range of placement options to meet student needs To abide by the decisions of the IPRC process and ensure that all processes and procedures are duly acted upon To provide on-going opportunities for professional development on the spectrum of special education needs 10

11 To provide appropriate programming, specialized personnel and materials to meet the learning needs of all children, including those who have disabilities Government: To enable the provision of adequate funding, either through direct dispensation or allowance for local taxation, for the appropriate education of children with disabilities To eliminate the ISA process, which is segregating, undignified and allocates the basic human needs of children who have disabilities to a monetary amount. The ISA process, in and of itself, contravenes the human rights of persons with disabilities and is an indictment of a government/society that puts a monetary value on the worth of its citizens who have disabilities. To create/provide a committee or body to monitor the implementation of the educational regulations of the province IPRC decisions, IEP creation, provision of appropriate programming, etc. To mandate the inclusion of disability-specific training in basic teacher education, e.g. this might consist of Special Education, Pt. 1 as a basic teacher requirement To mandate, through the College of Teachers, the creation of more disability specific Additional Qualification courses, e.g. courses on Autism Spectrum Disorders At the university level, to encourage and facilitate the creation of degree courses that are disability-specific (this would include Masters degree programs, such as a Masters degree in Autism Studies) To reinstate professional development days for the education system and make financial provision for boards to train teachers and teaching assistants in disability-specific methodologies 8. Undue Hardship Standard What specific issues need to be addressed in applying the OHRC S policies and guidelines on undue hardship in an educational setting? The undue hardship standard, as set out in the OHRC Policy and Guidelines must be enforced. ASO recognizes that providing appropriate education for students with ASD is expensive. However society has a duty to assist persons with disabilities, and the Education Act requires that students with disabilities receive a free appropriate education. When considering what is an appropriate education for students with ASD there is often a debate centered on what is education and what is treatment. It is our position that for students with ASD, treatment cannot be separated from education. Psychological assessments, speech and language therapy, social 11

12 skills training, occupational therapy and other treatments may all be necessary for the appropriate education of some students with ASD. Some of the costs for these services should be covered through health care and social service dollars. The Ministry of Education should not have sole financial responsibility for providing the services required for the appropriate education of students with ASD. However it is important that school boards not be able to claim undue hardship and thereby deny students with ASD an appropriate education, with the necessary accommodations and services. The OHRC should work with the Ministry of Education, and school boards, to ensure that they understand the undue hardship guidelines, and that they comply with the undue hardship standard. What mechanisms would you recommend be established to promote ongoing dialogue on issues related to education, disability and human rights. 1. Set up an advisory committee composed of representatives from disability organizations with the mandate to report all issues relative to its Policy and Guidelines on Disability and the Duty to Accommodate. This committee would report to the chief of the Ontario Human Rights Commission. 2. The OHRC should publish an annual report on the issues and concerns regarding disability and education the OHRC has gathered each year. The OHRC should have an annual meeting with the Ministry of Education to discuss resolution of these issues. 3. The OHRC should hold annual presentations for the non-profit sector and parents of special needs children to inform them of policies and procedures in regards to disabilities and education. Are there other issues related to the Ontario Human Rights Code, disability and education that you would like to raise? ASO supports an amendment to Section S.10 (1) of the Ontario Human Rights Code to include references to Autism Spectrum Disorder. Special skills/service dogs are being used as a form of accommodation for individuals with ASD. Children in the education system are being trained to use the service dogs for communication, socialization and anxiety therapies. For many students with ASD using a service dog in a school setting will allow for full participation and will remove emotional and social barriers. 12