Fund Better IEP's, not Better ISA!
The Ontario Coalition for Inclusive Education continues to affirm our objection to a model of funding that allocates dollars based on diagnosis and labeling. The previous member of MACSE who represented students with the label of Developmental Disability, Patrick Worth, spoke out at every opportunity about the harm done by funding this way, and submitted his thoughts, gathered from his constituents, to MACSE. Member groups of the Coalition have made several submissions to the Ministry of Education, the Provincial Auditors, PAAC, and MACSE, detailing our objections (eg. ISA funding harms Ontario students. STOP IT! October 2000 - Analysis and Recommendations). Members of PAAC on SEAC, in November,2000, jointly submitted "A proposal for amending the process for funding special education in Ontario", which outlined an alternative to the current funding model.
Whenever our objections are voiced about this process, we have been told to suggest a better profile that would "work" for students with developmental disabilities. Better profiles will not help this method of funding to improve! For the last three years, the Ministry of Education has gathered statistics about the incidence of students with particular disabilities throughout the province (see Spring 2001 ISA Guidelines). It is our position that enough data gathering has occurred for the Ministry of Education to provide additional special education funding to school boards, based on their overall numbers, SEPPA is such a "census-based" approach - as recommended by the International Organization for Economic Co-operation and Development, the U.S. National Association of State Boards of Education, and the American Institutes for Research. Money should not be an incentive to identify more students, promote segregation, or document the severity of their learning challenges. Accountability to students still depends on Individual Education Planning (IEPs).
The Ministry of Education has been undergoing yet another review of the ISA funding process, and in January of 2001, the ISA Working Group released its recommendations. One of the recommendations resulted in the establishment of an ISA Eligibility Group with the following mandate:
The mandate of the eligibility group is to improve eligibility for ISA claims by:
- developing more defined, clearer ISA eligibility criteria, (they would not be reviewing the ISA claim process itself);
- supplying boards with appropriate supports (e.g. models or examples, glossary of terms, rubric/way of laying out ISA eligibility criteria);
- ensuring ISA eligibility criteria are achievable and responsive to relevant characteristics of students;
- ensuring an edited, quality-controlled, French/English translation (including consistent use of terminology) of the ISA manual and implementation supports;
- articulating thresholds more clearly (for example, how many of eligibility criteria must be met for a student to qualify); and streamlining documentation requirements.
- As a first step, the eligibility group would seek input from provincial associations, special education administrators, and validators.
- The eligibility group would address the role and character of assessments when refining ISA eligibility criteria.
- The eligibility group would seek coherence with the program standards under development by the ministry, to the fullest extent possible
The draft Profiles were recently released in order to "seek input from provincial associations, special education administrators, and validators". There has been an overwhelming response from constituents throughout the province that the draft Profile, " Criteria for ISA Claims Submitted for Profiles 7.2/7.3 - Intellectual Disability", is much more damaging than its predecessor, and that it is impossible to determine its relevance to the education of students with intellectual disabilities.
The ISA Level 2 and 3 labels are, by nature, devastating because of their entirely negative, stereotyping approach. Since they are to be applied by the education system, they will remain with the student throughout her/his school years and will follow her/him through the transition years into adulthood. It is the lived experience of the majority of persons with intellectual disabilities that the label others have applied to them has caused them great harm (see Addendum, comments from Patrick Worth). This document will do only harm to the student identified and labeled by it. Hence its use would be unethical.
What follows is an analysis of why this is so, based on comments, calls, letters, and e-mails by parents, self-advocates, associations, and professionals. Many of them have already submitted, or will be submitting further comments. Sections that are enclosed in borders, are direct quotes from the draft Profile.
Claims that meet this profile demonstrate a student with an intellectual disability which results in a need for a program that is focused on the student's development of social skills, independent living skills, economic self support skills, and as appropriate, the acquisition of academic skills.
The first sentence in this document shows that it is based on precisely the kind of negative stereotyping that the Supreme Court of Canada has said more than once is unconstitutional when used against persons with disabilities (as in Eaton vs. Brant County Board of Education, for example). To assume that a student's "intellectual disability" (and nothing else about the student) "results in a need for a program that is focussed on the student's development of social skills, ...etc." (i.e. an education substantially different from that offered to students who do not have to bear the label "intellectual disability") is negative stereotyping based on ignorance and prejudice. As this sentence frames the whole document, the whole document may be unconstitutional. The statement, "as appropriate, the acquisition of academic skills", perpetuates an attitude of low, or even no academic expectations for students with this "profile".
Evidence of: A formal written diagnosis of developmental disability (per DSM-IV code 318.0, 318.1, 318.2, or 319) by either a member of the College of Physicians and Surgeons or a member of the College of Psychologists;
The title of this draft Profile refers to "Intellectual Disability" but it requires a "formal written diagnosis of developmental disability". Do the authors believe that "developmental disability" and "intellectual disability" are always identical? If so, on the basis of what evidence and research? If not, how do they reconcile their use of the two terms? This creates some confusion and perhaps a decision should be made to use one descriptor, Intellectual Disability, for clarity and consistency.
The major problem with the statement of diagnosis is that neither "intellectual disability" nor "developmental disability" are diseases and do not fall within the proper purview of medical expertise; Intellectual Disability is certainly not a mental illness or psychosis to be identified by a psychiatrist. As well, there is nothing in the training of the great majority of members of the College of Physicians and Surgeons which qualifies them to give a "formal written diagnosis of developmental disability".
Alternatively, if a member of the College of Psychologists can diagnose students, another great concern arises. Educational psychologists are not necessarily on staff of school boards, and if they are employed by boards, there may be an ethical dilemma for them to make diagnoses that generate funding. If no staff psychologist is available, and assessment is required by a psychologist in private practice, who would pay for such assessments?
This Profile represents a regression of the present education system to one founded on a "medical model". It deals primarily with medical diagnoses: "DSM-IV" is the "Diagnostic and Statistical Manual" prepared to help those in the mental health system -- primarily psychiatrists -- make correct diagnoses. Even within the ranks of psychiatrists -- especially those who specialize in persons with intellectual disabilities -- there is controversy over the methods used to produce DSM-IV. The reliability and accuracy of its contents as they relate to intellectual disability, and the inadequacy and limited relevance of its conceptualization of what is here called "intellectual disability", challenge its place as a valid indicator for designating funding that is intended to assist such students in their learning. A "medical model" is fundamentally unsuited to, and inappropriate for, an education system.
Dr. Vikram Dua, a Child and Adolescent Psychiatrist based in Vancouver, wrote in a recent (2000) Autism B.C. Newsletter. She cautioned about the concerns and appropriateness of tying funding and service provision to diagnosis through DSM -IV, by saying "Far too often there is a wholesale misappropriation of systems such as DSM-IV into settings where it has no legitimacy." She goes on to say that, in the DSM, "Specific diagnostic criteria for a disorder are frequently not validated and often represent the best approximation of widely divergent points of view". Indeed, the preface of the DSM specifically cautions against use of the DSM "clinical and scientific" categories for "legal or other non-medical" purposes. It is specifically stated that DSM categories are not relevant for disability determination.
Compare the diagnostic, medical-model approach with an educational approach:
The diagnostic approach is based on deficiencies, inabilities, negative comparisons to "norms" and pathologies (as is clear from the language in this document). It involves "assessments" by others who typically do not know the individual but measure the individual's "deficiencies" in comparison to others. An education system should work from an individual's abilities and capacities to build on them and help the individual to learn. It involves getting to know and understand the student and helping her/him attain learning goals based on capacities. These two approaches are incompatible. It is clearly evident that nothing in this document, or any of the documents required to be completed, can contribute to positive educational outcomes for a student labeled as a result of the process. The results can only be negative.
- A formal written diagnosis of developmental disability (per DSM -IV code 318.0, 318.1, 318.2, or 319) by either a member of the College of Physicians and Surgeons or a member of the College of Psychologists;
- Assessments which demonstrate IQ at or below the first percentile; AND
A recent (within the past two years) professional assessment (e.g. Vineland Adaptive Behaviours Scale, Scales of Independent Behaviour - Revised, Adaptive Behaviour Scales) documenting severely low functioning (at or below the first percentile) in two or more areas of adaptive functioning as per DSM -IV (functional academics, communication; home living, use of community resources, health and safety, leisure, self-care, social skills, self-direction, work); OR
- A diagnosis by a member of the College of Physicians and Surgeons of a medical condition associated with intellectual disability (e.g. Down Syndrome) that is not covered by a separate ISA profile; AND
- A recent (within the past two years) professional assessment (e.g. Vineland Adaptive Behaviours Scale, Scales of Independent Behaviour - Revised, Adaptive Behaviour Scales) documenting severely low functioning (at or below the first percentile) in two or more areas of adaptive functioning as per DSM-IV (functional academics; communication; home living; use of community resources; health and safety; leisure; self-care; social skills; self-direction; work); AND
- An educational assessment within the past two years based on a combination of standardized assessments indicating functioning at or below the first percentile and curriculum-based measures* that demonstrate significant difficulties identified in comparison with expected age/grade placement in communication and basic academics (e.g. PPVT, diagnostic/achievement test results, WIAT, Brigance, Woodcock-Johnson, etc.).
* Some of this data may be provided in supporting documentation (e.g. multidisciplinary assessment, speech language assessment, etc.)
The first comment that many have made about the evidence required to validate a claim submitted under this profile is related to the immense confusion in this paragraph. It has been documented that not even the most enthusiastic supporters of IQ tests claim that such tests have validity at the extreme ends of the scale (for solid statistical reasons). "The first percentile" is the extreme end of the scale, so an "assessment which demonstrates IQ below the first percentile" cannot be valid.
If one was to continue to support the DSM-IV as some sort of authority in this process, then it must be noted that "The choice of testing instruments and interpretation of results should take into account factors that may limit test performance (e.g.. sociocultural background, native language, and associated communicative, motor, and sensory handicaps). When there is significant scatter in the subtest scores, the profile of strengths and weaknesses, rather than the mathematically derived full-scale IQ, will more accurately reflect the person's learning abilities" (pg. 40 DSM-IV).
Further, in reference to the use of measures of adaptive functioning or behaviour, "As in the assessment of intellectual functioning, consideration should be given to the suitability of the instrument to the person's sociocultural background, education, associated handicaps, motivation and cooperation. For instance, the presence of significant handicaps invalidates many adaptive scale norms. In addition, behaviours that would normally be considered maladaptive
may be evidence of good adaptation in the context of a particular individual's life" (pg. 40 DSM-IV). There is also much evidence to prove that the prevailing view links "difficult behaviour" to communication issues and lack of appropriate training for those who support such students in classrooms.
In discussions with several early childhood educators, psychiatrists and psychologists familiar with the use of such adaptive functioning assessments, we heard consensus that such assessments have nothing to do with what a school environment should be like or what an education system should be trying to do. Except for the tools mentioned in the later section on educational assessment, all those listed are diagnostic in nature, and have no relationship to program development, which is what schools are supposed to be doing. Parents have the right, and may wish to refuse any psychological or medical testing of their children, that would result in a score or label solely for the purpose of acquiring ISA funding. Will they then feel pressure to submit their children to such testing?
(ISA Level 3) Evidence of Related Difficulties: (May be found in any of the following: assessments, IEP, incident reports, supporting documentation.)
Difficulty, all or almost all of the time, with (ISA Level 3):
Basic living skills; and
Social interaction skills; and
Self-control relative to the student's age exhibited by one or more of the following:
inhibiting behaviour (e.g. inability to wait turn, running, wandering)
regulating behaviour (e.g. yelling, kicking, biting, punching)
initiating behaviour (e.g. overly passive or unresponsive)
The language and focus of the "evidence" gathering is on finding difficulty. "Frequent difficulty"; "Difficulty, all or most of the time"; "independent living skills"; "relative to the student's age"; "social interaction skills"; are all largely subjective concepts and cannot be made objective or reliable. Assessment should not unilaterally be a process of ferreting out deficiencies.
The "Self-control" section does not take into consideration the environment the student is in, or the actions or inactions of others that cause the apparent lack of "self-control". In other words, this section makes stereotypical assumptions about the responsibility of the student for what she/he does, thereby absolving the school of all responsibility. The self-control, behaviour categories come from a developmental model; however, when we look at children to see how they are doing with regulation, initiative, etc., a good clinician or teacher looks at what a student can do. This approach of seeking difficulty is negligent practice.
(ISA Level 3) Evidence of Needs as Indicated in IEP:
- Program is developed by, or in conjunction with, a qualified special education teacher; and
- Alternative curriculum expectations for 81 to 100% of the program to address the development of:
- daily living skills; and
- social interaction skills; and
- basic literacy and numeracy skills as appropriate;
- Programming to address severely limited (typically non-verbal) means of communication.
Under "Evidence of needs" the 80% divide between "Modified and/or alternative curriculum expectations" and "Alternative curriculum expectations" for ISA levels 2 and 3 encourages the provision of "alternative curriculum expectations" whether necessary or not. Teachers and schools have not traditionally been well prepared to teach in inclusive classrooms, and to modify existing curriculum. Therefore, alternative curriculum may tend to become the norm for students with this profile, when it is difficult to show the difference between modifying curriculum for 80 % of the "program", or providing alternative expectations for 81 to 100 % of the "program". Again, the authors of this document assume that certain students must have a curriculum based on "daily living skills and social interaction skills" (an alternative curriculum), prior to development of an Individual Education Plan (often confused with "program"). In fact, this document enforces such a curriculum because unless that curriculum is used, funding is denied. The assumption that certain students need such alternative curriculum is another example of negative stereotyping, and another reason why this document may well be unconstitutional.
An educational assessment within the past two years based on a combination of standardized assessments indicating functioning at or below the first percentile and curriculum-based measures* that demonstrate significant difficulties identified in comparison with expected age/grade placement in communication and basic academics (e.g. PPVT, diagnostic/achievement test results, WIAT, Brigance, Woodcock-Johnson, etc.).
An education system which claims "integration is the norm", as ours repeatedly does, cannot rationally use, "significant difficulties identified in comparison with expected age/grade placement" as an indicator for large amounts of extra funding. In an education system that promotes "integration", students with these difficulties are learning at their own level, in regular classes with other students who do not have these difficulties. They are not expected to learn exactly the same things at the same speed as other students, and the fact that they cannot is irrelevant.
Such students would have their curriculum expectations modified based on the present Ontario curriculum. This is the expectation for students who are included in regular classrooms, as designated on their IEP. These students would still need other types of support to be successful at school: an Educational Assistant, peer tutor, smaller class size, etc. On the other hand, alternative curriculum would occur in a segregated setting. The judgement call then becomes: will this student with the label of intellectual disability benefit from a modified curriculum in an inclusive setting? Or is it predetermined that they need alternative curriculum expectations to be delivered in a segregated setting? Since many educators do not have the skills to modify curriculum, then, it will be necessary to identify more students as ISA level 3, ultimately leading to more segregation of students with intellectual disabilities. For those school boards that have a policy of inclusion this will not be an issue, but for those that do not, which are most, then it will be more common practice to segregate.
An education system which promotes "integration" would also not be interested in comparing only the financial costs of integration vs. segregation, as one might suspect is the plan. On page 54 of the Spring 2001 ISA Manual on the Ministry of Education Web site one finds the reference, "It is not possible at this time to provide a comprehensive evaluation of the relative costs of these alternative program types", when referring to the costs related to supporting students who are integrated versus those in self-contained programs.
This document reflects an ideology that has roots in the eugenics movement. It is an attempt to provide a structural framework for the institutionalization of children with intellectual disabilities within the Ontario education system. In contents and emphasis it is little different from the processes used from 1912 onwards in Ontario to exclude those who were then called "defectives" and are now called "students with intellectual disabilities" from the company of their peers. In 1912, under legislation passed under pressure from eugenicists, the motivation
was "to protect the purity of the white race". It is not clear what motivates the negative stereotyping present in this document. It is unacceptable that in 2001 the ideology of the Ontario education system is still rooted in the misguided theories of eugenics.
The ISA system is fundamentally flawed and cannot reach the goal assigned to it. Funding must be based on accountability for educational outcomes for students, or at least on accountability for appropriate process. ISA can never do that. The time and money wasted harming students through the ISA process must be re-allocated to supporting students and teachers in classrooms, so that the students ultimately get the benefit.
The Ministry has said repeatedly that it is striving for consistency and fairness in funding; students with the same "level of need" should generate the same level of funding for a school board wherever the school board is situated in the province. That goal is impossible to attain even in theory because it ignores a student's individuality; everything about the student except the "level of need" (i.e. stereotyping); the type or nature of the "need"; the context in which the student operates; and the environment in the school she/he attends. However, even if the Ministry's goal was not impossible to attain, this document is not a step towards
that goal. Its wording makes it clear that its use will necessarily introduce such a high level of variability and subjectivity that the results must be unreliable.
Addendum: Comments from Patrick Worth, People First of Ontario
As a former member of MACSE, as a person who sat on the council for three years, as a person who has been labeled and segregated, as a person who has been speaking out against this kind of discrimination for a very long time, I find it appalling that money is being spent in such a way. This is just pure discrimination. We need profiles to concentrate on the dreams of the individual. Everybody has strengths, goals and ambitions. People want to be recognized for their gifts, not their disabilities.
We have to stop classifying people with disabilities as not being able to learn. We have to begin with the attitude that all people can learn, given the right support. If we don't learn to erase the "can't learn" stigma, the education system will never get to the point of understanding just what kind of meaningful support people with disabilities truly need in order to be fully included. We need strong IEPS that concentrate on the strengths of the individual, the idea of concentrating on problem solving with other students and a regular teacher in an inclusive integrated classroom. We need to explore best practices for education, and good education is about inclusion. That doesn't involve labeling, stereotyping and sending out messages about people with disabilities that just aren't true.
This is the group that I represented on MACSE so I ask the council to please stand against this discrimination and try to understand why these kind of profiles would not be good for anybody. All you really have to do is try to understand how you would feel if this kind of stereotype was all about you.
Isn't education supposed to be all about believing in each other and helping people to believe in themselves? Isn't that what its all about? We first have to have the belief that everybody can learn.
As a young boy, a teacher in a segregated system told me that I couldn't learn to read and write. She was wrong in her thinking and she was wrong to say such a thing. I feel that these profiles follow that same kind of thinking. I finally got a chance to learn how to read and write. When I was in my thirties I got a chance to attend a literacy program at Frontier College. I learned how to read and write because a teacher approached me with the attitude that I could do it. She taught me to believe in myself. That made all the difference in the world. That's what I call real education.