Intentional misdiagnosis of intellectual disability in the Czech Republic - a case study
During the past year, the Otevřená společnost, o.p.s. organization has performed a survey of lower primary education in the Czech Republic. That survey especially emphasized the way instructors view the education of majority-society boys and girls as compared to Romani boys and girls.
That survey identified the introduction of culturally-sensitive didactic methods into instruction as being one necessity. Another topic that came to the foreground during the survey was the diagnosis of children's intellectual capacities, which forms the basis of their being recommended for enrollment into the "practical primary schools".
Romani studies scholar Markéta Hajská has explored this topic by analyzing a case study. News server Romea.cz is publishing her work here in full translation.
Diagnosis: Mild Mental Retardation
The question of assigning Romani children into the "practical primary schools" has been a hot topic for some time now. The Czech Republic has long been criticized by activists, international institutions and nonprofit organizations for the fact that a disproportionately high percentage of Romani children (almost one-third of them) end up in "practical schools" with diagnoses of Mild Mental Disability or Mild Mental Retardation.
Given the importance attributed to the value of education in our society, these children are subsequently disadvantaged in their adult lives, not just on the labor market, but also across a broad spectrum of social areas. The system for diagnosing mental disability is to blame.
Many critics and experts agree that the disproportionately high percentage of Romani children in the "practical primary schools" is especially based on the problematic system of diagnosing these children. Some of the instruments used for these diagnoses have been called culturally biased.
A survey performed by the Czech Professional Society for Inclusive Education in 2014, led by Mgr. Jan Klusáček, came to the conclusion that mental disability is disproportionately identified as a diagnostic outcome in various regions of the Czech Republic. The conclusions of that survey and other findings by experts demonstrate that the system for diagnosing mental disability, which in the Czech Republic occupies an absolutely fundamental place in the process of recommending children for assignment to different types of schools, is problematic in many respects and less objective than has generally been presumed.
Amanda: Diagnosis "made to order" for a practical primary school
We can identify the various factors responsible for keeping Romani children in the "practical primary schools". On the one hand, we encounter the conviction of some Romani parents that their child will do better in such a school because they believe the teachers there will take a better approach toward them than mainstream teachers would, or because the child's friends, relatives and siblings also attend that specific "practical school".
These attitudes among Romani parents can sometimes be motivated by the actions of school staffs themselves. Higher enrollments guarantee the operation of any school facility.
The "practical primary schools" use different methods and strategies to maintain their enrollments. One of those methods can be, for example, taking advantage of the system for diagnosing mental disability in children.
The following is an example of a Romani family from Liberec, the true story of a girl we will call "Amanda". When these events occurred in 2013, she was living with her mother and stepfather in a residential hotel in Liberec.
During the preceding years the family had a big problem with finding an apartment and moved between three different cities in the region more than once. Amanda attended nursery school, where everyone praised her, but in the spring of 2012 she had to move and could no longer keep on attending.
In September 2012 Amanda enrolled into a mainstream primary school in Liberec. She never had any serious problems there.
She liked going to school and had a very good attendance record, but sometimes her teacher gave her parents the feedback that she should study more, and sometimes she had problems with reading. While Amanda was considered one of the weaker pupils, she was decidedly not the worst in the class, and the teacher praised her efforts and the way she did her homework.
In December 2012 the family moved again, to a village 30 kilometers away. Amanda transferred into a new primary school.
The move soon proved to have been a step in the wrong direction, so the family moved back to their original apartment after just one month. Amanda's mother brought her back to the mainstream school in Liberec, but an unpleasant surprise awaited her: The principal said they no longer had a place for her.
The mother went to the local Education Department for advice, where she was given a list of four other schools. She did not succeed in enrolling Amanda at any of them.
She returned to the Education Department. A staffer there asked how Amanda was doing in school, and her mother acknowledged that she did not read well and was slower.
The bureaucrat advised her to temporarily enroll Amanda into a "practical primary school", allegedly until a place could be found for her elsewhere. He assured her that it would just be a temporary measure ("After all, you have to put the girl in school, and we don't have room anywhere else right now!").
He told the family that in the "practical school" it was standard for children to undergo an educational/psychological examination, and that once Amanda had been so assessed she would be reassigned to a different school. After Amanda had been attending the "practical primary school" for about a week, her mother was asked to consent to her assessment.
The assessment took place at the school, in a classroom, without the mother there. Those assessing Amanda reported that she cried and was frightened.
When the assessment was over, the psychologist told the mother that she recommended Amanda remain at the "practical primary school". She added that Amanda was "very slow" and not eligible for normal school.
The mother accepted that outcome, as she considered such a result, coming from a person in a position of status, to be a matter of fact, something objective to which she had no choice but to submit. Today she regrets making such a hasty decision, because she was unable to estimate what its consequences would be.
Under the microscope: Amanda's diagnosis
Let's look at the words used to justify this diagnosis of Mild Mental Disability. The assessment report opens with a description of Amanda.
"A girl of average size, thin, with a short haircut and dirty hands." First of all, why the emphasis on dirty hands?
Does the report take any interest in how Amanda got her hands dirty, or where, or what the connection is between her mental capacity and dirt under her fingernails? The answer to all of these questions is the same: No, it does not.
The report never identifies Amanda as Romani. However, this description of "dirty" hands could be a hint, a way of indicating what used to be common in the reports written for this same purpose during the 1990s, which openly stated that the child being assessed was Romani (which was understood as meaning the same thing as "ineducable and socially vulnerable"), or in another kind of analogy, used to openly describe such children as "swarthy".
In other words, it seems that "dirty" fingernails are being mentioned here as an unequivocal indicator of socially substandard conditions in Amanda's family. When it comes to actually describing those conditions, the report states that "the frequent changes of schools are disadvantaging the girl, especially in the social arena - before she can make friends, she is moving to another school."
Yes, there is no doubt that is a problem. Who wants to be constantly arriving late to new groups that are already functioning?
The question, though, is whether assigning Amanda to the "practical primary school" contributes in any way to solving that problem. She will apparently keep changing schools frequently if she has no choice but to move from one town to another.
The even more burning question is whether frequent moves are any reason to enroll Amanda into this particular type of school, as the report indirectly hints. It is generally focused on listing her deficits but does also describe her educational potential.
The report states that when Amanda is "under motivation she gradually gets involved in the activity and fulfills the tasks", "she recognizes basic colors and claps out the syllables in words", "she counts to 12 with visual aid", "she is playful, learning games amuse her, she laughs, she doesn't want to stop performing the tasks", "with support she does her best to solve the task, she makes an effort", "she is calm, there are no displays of psycho-motor disorder". Yet despite these characterizations, the report accents her deficiencies and frequently links them to the positive attributes in the same sentence.
"Not capable of independent work", "constantly needs an individual approach and support during activity", "incorrect pronunciation of 'r'", "she follows instructions uncertainly, she doesn't know what some words in the assignment mean...", "she is not oriented when it comes to linear order - she doesn't know where the positions of first, last, or next-to-last are", "her phonemic hearing is absolutely undeveloped", "performs counting operations in the set up to five with mistakes", "small vocabulary prevents her expressing herself nicely", "gives up easily when she fails", "lacks work habits", "works at a very slow pace, has difficulty concentrating on activity," "attention span is brief and untrained". The report's conclusion is that Amanda is underdeveloped overall, with Mild Mental Retardation.
Specifically, the conclusion of the report reads: "A girl with mental capacity in the Mild Mental Retardation area of the scale. We recommend enrolling the pupil into the Mild Mental Disability program."
The psychologist's recommendation is that Amanda "remain at [this] practical primary school where she will receive the option of an individual approach and the opportunity to fully realize her potential." But are the conclusions drawn by this assessment at all justified?
What precisely has led to this diagnosis? Amanda is described as poorly pronouncing the "r" sound, as not counting well, and has not developed her phonemic hearing.
Those characteristics all occur quite frequently among six-year-old children in first grade. She is also described as having a small vocabulary and other difficulties with language.
In that context, it is startling that the report does not mention the fact that Amanda's family speaks Romanes, and that Czech is therefore not her mother tongue. Is the fact that a child is not a Czech native speaker any reason to enroll her into a "practical primary school"?
The answer is no, it most certainly is not. From a diagnostic perspective, the most serious offenses here concern the assessment methods that have been used for Amanda - or rather, those that have not been used.
The psychologist at this facility has diagnosed Amanda with Mild Mental Retardation without ever stating in her report whether she actually tested Amanda's intellectual capacity or how she tested it. The standard practice is to use tests such as the WISC-III, the Weschler Intelligence Scale for Children, or the SON-R 2 ½ – 7.
The administration of these tests takes rather a long time (approximately 90 minutes). Such assessments are the necessary precondition for establishing a serious diagnosis such as that of Mild Mental Retardation.
A detailed interview and a follow-up assessment are also absolutely essential. One cannot rely on just an "orientational" assessment like the one this particular psychologist chose to do.
The other conclusions drawn from Amanda's assessment seem to have been drawn rather quickly. The question is whether some of the conclusions can even be drawn from a single assessment that was not very extensive in terms of methodology or time spent - especially the conclusions about Amanda's alleged "lack of work habits" or "incapacity for independent work".
Moreover, the findings here have been skewed by the fact that Amanda was observed in an unnatural situation where she was afraid and crying, which the report itself even mentions. I am personally of the opinion that none of the deficits described for Amanda constitute an unequivocal reason to remove her from mainstream education.
There is nothing left but to believe that the main reason for the creation of this report, with its recommendation of education in a Mild Mental Disability program, was purely a "practical" one indeed: The Education Department of the City of Liberec did not have room anywhere in the City of Liberec at the end of January 2013 for Amanda, and the "practical primary school" to which she was reassigned had an interest in justifying her enrollment there. Her mother summarizes the entire case in her own words as follows: "They saw a Gypsy girl, so they put her into special school".
It has now been three years since Amanda was "diagnosed". What happened after that?
According to her family, Amanda has encountered bullying and violence from her fellow pupils and older children ever since she began attending this "practical primary school". From her very first days at the new school, she came home crying, with bruises, and begged her parents not to send her back because she was afraid there.
The last straw for Amanda's parents was when they learned that her teacher has been inspecting her scalp for lice twice a week. It is apparent that the family's overall motivation to see Amanda succeed in this education system is rapidly declining.
Amanda's absence rate has grown enormously, and both her parents support her when she says she doesn't want to go to school. The family moved to another town last year, so it was necessary to change schools again; with a "diagnosis" of Mild Mental Disability, Amanda has not been able to access mainstream education again.
Are better times ahead?
Amanda's story is neither an exceptional nor an isolated one. It is just one story from the thousands of children now attending "practical primary schools" with alleged diagnoses of Mild Mental Retardation.
This state of affairs is absolutely disturbing. The great hope of all the children who have not yet been labeled with such a "diagnosis" is that various systemic measures are now being designed to improve this situation.
These measures should ensure disadvantaged children receive adequate support in mainstream schools without any diagnosis of mental disability ever being sought for them. For example, the amendment to the Schools Act counts on mainstream primary schools providing support measures for the education of pupils with special educational needs.
There are also plans to abolish the curriculum program for the education of pupils with Mild Mental Disability, a step that has sometimes been erroneously interpreted as one that will lead directly to the closure of the "practical primary schools". The amendment should also make it easier for mainstream schools to work with children who have been correctly diagnosed with Mild Mental Disability.
The introduction of high-quality diagnostic materials into the system was mentioned in the opening of the Romani Integration Strategy adopted by the Czech Government in 2015. Improving the diagnostic system and the quality of the counseling system is also an integral component of the Action Plan for Inclusive Education 2016-2018.
One aim of that plan will be momentous in terms of its impact in practice on children's educational careers: The aim is to move away from using diagnostic processes focused on ascertaining a specific diagnosis, and toward processes focused on ascertaining the degree of support children need with their education, then proposing specific support measures for them. The focus will shift to supporting their potential instead of identifying their deficits, since it has been repeatedly demonstrated that merely identifying deficits does not develop anyone's motivation for education.
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