Inclusive practice for students with neurodevelopmental disorders in Sweden

Measure

School staff completed the INCLUSIO questionnaire (17), composed of 61 Likert-scaled items on inclusion plus background items on prior NDD education, to map how schools work actively and systematically towards inclusion of students with NDDs. The questionnaire is a face and content valid scale, derived from long-term experience of KIND clinicians working with schools in Sweden on educational inclusion and avoidance of school absenteeism and based on a Delphi process and several revisions following piloting in collaborating schools. In the current sample, INCLUSIO had a Cronbach’s alpha of r_α = .87; its subscales had internal consistencies of r_α = .70-.89. INCLUSIO usually requires 25 minutes to fill-in and inquires about: being prepared to conduct inclusive practice/previous education in NDD inclusive praxis (background items), and eight subscales: Assessment of support needs (7 items), Use of individualized support (10 items), Implementation of a structured learning environment (8 items), Individual changes applied to schedule/teaching (7 items), Functional response to behavioral characteristics (6 items), Cooperation with parents (6 items), Consideration of peer-relations (8 items), and Staff education/professionalism (9 items). Items can be responded to with “yes” (indicating inclusive practice), “rather yes” (indicating moderate inclusive practice), “rather no” (indicating doubtful inclusive practice), “no” (indicating no inclusive practice), and “don’t know” (indicating no knowledge of inclusive practice). While items are directed to include all NDDs, it is important to note that in Swedish school context NDD is nowadays predominantly understood as a label summarizing ADHD and ASD, which also form by far the largest subgroup of NDDs diagnosed in Sweden (18). INCLUSIO is conceptionalized as a criterion-based instrument, expecting that in case of “good enough” inclusive practice, a large majority of items are responded to with “yes”. The INCLUSIO questionnaire was completed online and anonymously following informed consent and in collaboration with municipality and school authorities.

Analyses

Descriptive statistics (%) for all 61 INCLUSIO item response frequencies (yes, rather yes, rather no, no, don’t know) and medians (Md) and ranges (%) for its subscales are provided for the whole sample. In addition, chi² inference statistics were run on descriptive response differences for each item to examine Bonferroni corrected (5%/63) statistical significance levels applying an alpha of .00079. Differences in reply patterns between types of school staff are reported, too, if statistically significant.

Results

Overall, 5.8% replied ”yes” to the background item asking staff if their education had sufficiently prepared them for teaching students with NDDs; 13.5% replied “rather yes”, 36.9% ”rather no”, 32.3% ”no” and “8.4% ”don’t know”(p < .0001). Responses varied for different professionals. ”Yes” responses were highest for members of the school health team (nurses, social workers, psychologists, physicians) with 19.9% and lowest for primary/secondary school teachers with 3.4% (n.s.). In the whole sample, 14.2% indicated that they had received complementary education with focus on NDDs, and 82.3% that they had not (p < .00001). This figure was highest for special education teachers (53%) and lowest for primary/secondary school teachers (5%) (p < .0001). Regarding the subscale ‘Assessment of support needs’, the percentages of “yes” answers/item varied between 24.6 and 47.8% (Md =29.7%). These values were 10.9 to 47.4% (Md = 16.1%) for ‘Use of individualized support’; 15.5 to 50.5% (Md = 30.8%) for ‘Implementation of a structured learning environment’; 16.2 to 37.1% (Md = 27.6) for ‘Individual changes applied to schedule/teaching”; 15.1 to 47.1% (Md = 22.6%) for ‘Functional response to behavioral characteristics; 31.4 to 46.6% (Md = 42.7%) for ‘Cooperation with parents’, 3.4 to 47.1% (Md = 26.6 %) for ‘Consideration of peer relations’, and 8.9 to 65.9% (Md = 24.0 %) for ‘Staff education/professionalism’ (see Table 2 for a summary of findings). Principals/school leaders responded more positively than other professionals on the subscales ‘Assessment of support needs’, ‘Cooperation with parents’, and ‘Staff education/professionalism’ (p < .0003), while high-school teachers typically gave the least positive answers for ‘Functional response to behavioral characteristics’, ‘Cooperation with parents’, and ‘Staff education/professionalism’ (p < .0002).

Discussion

While inclusion of students with NDDs in school is an explicit goal of Scandinavian educational authorities and policies (9), its contemporary concrete implementation in mainstream school practice is basically unknown. It has been argued that “true” inclusion of pupils with ASD, ADHD and other NDDs, which is adaptation of the learning environment to their needs beyond just placing them in regular schools, is still far from being a reality (15). Unfortunately, our data investigating actions taken that are consistent with inclusion or a prerequisite for inclusion in a large sample of school staff in Sweden are mostly consistent with this claim. Generally, school staff reported that they were not well educated to teach students with NDDs and that their own actions or their schools implementation of inclusive practice was limited. Especially regular teachers, being the largest group of respondents and at the same time working most closely with students, reported restricted skills and inclusive practice applied. The largest gaps were observed for the absence of mentor systems, and information of and the coordination with outside school services. There was also a substantial minority of “don’t know” answers, indicating a lack of communication or orientation about inclusive practice strategies. As the survey collected data from the perspective of service providers (school staff) not receivers (students, caregivers), we hypothesize that the current results are rather optimistic, and voices of parents and students themselves might have led to a different, perhaps even less encouraging pattern of results. Findings may also vary depending on the operationalization of inclusion, of which possibly a multitude are legitimate owing to the shortage of a widely agreed-on definition in practice (16). We used INCLUSIO, a questionnaire derived from development and supervision of school staff performed by NDD clinicians, not a genuine educational or teaching perspective. Our data are not brand-new, and despite public service routines usually being slow in introducing change, some dimensions of inclusion assessed in our study (e.g. staff education/professionalism) might have improved to the better meanwhile.

In order to achieve implementation of inclusion in education, we presume that several actions are recommendable. First, evidence-based education of NDDs, both basic science and applied practice, should be included in teacher and other school staffs’ mandatory education. Recently, the Swedish government has launched an educational bill that makes five full-time weeks NDD education mandatory for school teachers during their university education, which will hopefully serve this recommendation 5. However, the contents, quality and effect of such teacher upskilling efforts needs to be followed-up and completed by hands-on supervision on the spot in classrooms on case-basis. Second, anti-psychiatry or anti-diagnoses attitudes may still be strong in some parts of university education in Scandinavia, why a paradigm-shift at pedagogical faculties is required, accepting NDDs both as existing entities and as an own research and education responsibility. Currently, a lack of adequate NDD awareness and knowledge in schools is still hampering fruitful collaboration between education, health care on other services as pointed out previously by the Swedish National Audit Office and the Swedish School Inspectorate6, 7. Third, politically endorsed and resourced scientifically-based implementation plans in order to bring the notion of inclusion from an abstract and ideological level to a actionable and pragmatic level. For the time being, it appears that commonly systematic inclusive actions in schools beyond placement of children and adolescent in mainstream school remain the exception, not the rule. Recently, in Sweden, political initiatives have been initiated that might also affect positively students with NDDs, especially those with learning disabilities, such as the so called “reading, writing and basic math guarantee”8. Still, they are largely driven by the idea of reaching educational targets, not inclusion.

In summary, to the best of our knowledge, we have for the first time and on a micro action level of inclusive practice shown that the majority of different school staff professionals in Sweden experience a great deal of potential to improve inclusive practice, as operationalized by the INCLUSIO questionnaire. The authors are not aware of any comparable study from Scandinavia or internationally examining inclusion implementation in NDDs in a comparable manner. We suggest several mostly top-down policy actions on state and municipality level to adequately address and develop mainstream school inclusion culture for this group. We think that for all of the proposed actions, child and adolescent psychiatric expertise and liaison will be important (19).