Neurodevelopmental Disorders (NDDs) arise from alterations of the maturation, architecture or functioning of the developing brain. In DSM-5, NDDs comprise attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), communication disorders, specific learning disorder, motor disorders and intellectual disability. NDDs are common with an estimated prevalence of 16.2% to 17.8% (1). Child and adolescent psychiatry has a pivotal role in the clinical assessment and treatment of NDDs. However, as NDDs are currently incurable, not necessarily pathological, but often cause lifelong challenges, they are a societal responsibility and a multimodal approach to NDDs is recommended with players in diverse arenas of society being decisive for individual outcomes (2, 3). This is particularly true for educational settings, where scholastic failure, exclusion and absenteeism is a widespread concern (4-6).
A pivotal concept to achieve equity of opportunities and better outcomes for children and adolescents with NDDs in school is educational
The concept of inclusion is viewed somewhat differently depending on history, social factors and culture (10). For example, while a recent study showed that in France inclusion of autistic children and adolescents in regular classes depended on the presence of challenging behaviors, sensory processing, anxiety, adaptive and cognitive deficits (11), in Sweden, by school law, only pupils with intellectual disabilities can be excluded from mainstream schools. Inclusion is typically seen as education provided as a part of mainstream education that is put into practice by regular school staff, possibly supervised by specialists (12). It is also viewed as an approach that should focus on improving the learning environment, routines, procedures, pedagogy, staff behaviors and attitudes, not manipulating students, which would follow the concept of “integration”. However, the literature on specific inclusive educational actions is rather scare (13), and what inclusion should entail in practice for teachers and other school staff is often not specified and followed-up, or a matter of debate (14). Therefore, it is largely unknown, if and which concrete actions are currently implemented in mainstream schools by staff which could be subsumed as inclusive, although it has been hypothesized that inclusive practice remains poor for students with NDDs (15). The same is true for the status-quo of inclusion in educational settings in Scandinavian countries (16).
Therefore, the purpose of this study was to examine inclusive education practice for students with NDDs in Swedish schools, where the Swedish School Act that came into effect 2011 strictly reinforces inclusion by highlighting the rights of all students to receive a safe, supportive and motivating education that is characterized by individualization, inspiration and curiosity of learning and development of skills
N=4778 school staff (76% female) aged between 19 and 77 years (M= 46.0) with an average of 16 years in service participated in the study between February 2015 and June 2016. School staff consisted of principals/leaders, primary/secondary and high-school teachers, special educators, special education teachers, youth workers, personal assistants, and school health team members (Table 1), with about 60% of the participants working as regular teachers in primary, secondary or high school. The staff worked at 64 public and four private schools in six Region Stockholm municipalities (
School staff characteristics
Professions | All | Women | Men | Age | Years working in school |
---|---|---|---|---|---|
4778 | 3650 | 1128 | |||
N (%) | n (%) | n (%) | Mean (SD) | Mean (SD) | |
Primary school teacher | 1646 (34.4) | 1393 (29.2) | 253 (5.2) | 44.4 (11.0) | 15.3 (10.6) |
Secondary school teacher | 1219 (25.5) | 839 (17.6) | 380 (7.9) | 46.3 (10.3) | 16.7 (9,8) |
High school teacher | 19 (0.4) | 11 (0.2) | 8 (0.2) | 45.1 (10.7) | 14.0 (8.6) |
Principal/school leaders | 202 (4.2) | 142 (3.0) | 60 (1.2) | 51.0 (8.5) | 23.0 (9.3) |
Special educator | 204 (4.3) | 190 (4.0) | 14 (0.3) | 53.3 (8.4) | 23.1 (10.3) |
Special education teacher | 174 (3.6) | 151 (3.2) | 23 (0.4) | 51.9 (9.9) | 23.8 (11.5) |
Youth worker | 527 (11.0) | 344 (7.2) | 183 (3.8) | 43.0 (11.9) | 15.0 (10.9) |
Personal assistant | 199 (4.2) | 108 (2.3) | 91 (1.9) | 39.9 (13.6) | 10.4 (9.2) |
School health team | 161 (3.4) | 138 (2.9) | 23 (0.5) | 48,7 (10.5) | 12.4 (8.3) |
Other/not specified | 435 (9.0) | 334 (7.0) | 93 (2.0) | 47.8 (11.8) | 16.8 (11.1) |
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 rα = .87; its subscales had internal consistencies of rα = .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:
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.
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”(
INCLUSIO results by subscale/item in % in the whole sample (N=4778)
|
Yes | Rather Yes | Rather no | No | Don’t know |
---|---|---|---|---|---|
|
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Support plans are followed-up and evaluated* | 31.5 | 41.0 | 14.5 | 2.6 | 10.4 |
There is a specific and accessible support plan document* | 37.7 | 36.8 | 12.1 | 3.1 | 10.3 |
Staff involved in support plans meet regularly* | 24.6 | 37.2 | 20.8 | 6.3 | 11.1 |
It is clear who is responsible for the student’s support plan* | 28.0 | 37.6 | 18.8 | 7.1 | 8.5 |
School applies formal assessments of NDDb-difficultiesc* | 29.7 | 33.1 | 10.2 | 4.1 | 22.9 |
In case NDD suspicion, the school health team refers to clinical services* | 47.8 | 34.7 | 5.9 | 1.8 | 9.8 |
Recommendations from clinical services are used for support planning* | 27.9 | 41.1 | 9.3 | 2.3 | 19.4 |
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Transitions are prepared for with student’s participation* | 16.1 | 30.2 | 15.5 | 5.2 | 33.0 |
Transitions are prepared for individually and specifically* | 24.8 | 35.1 | 13.3 | 3.3 | 23.5 |
When a student with NDD starts in the school, prerequisites for adequate support are evaluated* | 12.1 | 25.4 | 20.6 | 12.3 | 29.6 |
Everyday individual adaptations in the classroom and schedule are provided* | 27.0 | 45.7 | 15.8 | 3.6 | 7.9 |
Support from of personal assistants/supervisors is provided | 10.9 | 29.9 | 26.7 | 13.8 | 18.7 |
Students receive the individual special education support needed* | 18.3 | 38.9 | 24.7 | 12.8 | 5.3 |
Teachers that fit the student are selected for teaching* | 10.7 | 27.7 | 19.5 | 29.1 | 13.0 |
School rules are adapted to student’s needsd* | 37.2 | 35.3 | 14.7 | 4.3 | 8.5 |
Students are offered alternative options to demonstrate knowledgee* | 47.4 | 33.8 | 5.7 | 1.1 | 12.0 |
School offers certain case managementf* | 14.2 | 26.7 | 19.3 | 8.4 | 31.4 |
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Rules are communicated clearly so that student with NDD understands | 41.2 | 42.1 | 6.3 | 1.2 | 9.2 |
Routines are an essential part of teaching | 50.5 | 39.3 | 5.4 | 1.0 | 3.8 |
Clarity and repetition are used in the communication with NDD students | 33.9 | 47.5 | 7.3 | 1.9 | 9.4 |
Changes to procedures are communicated to NDD student as early as possible | 30.5 | 44.4 | 10.3 | 2.3 | 12.5 |
School has distraction-free work stations | 15.8 | 25.9 | 32.7 | 18.8 | 6.8 |
Instructions are short, concrete and stepwise | 30.8 | 49.0 | 9.9 | 1.9 | 8.4 |
Students are offered organizational aidsg | 25.7 | 43.6 | 13.2 | 3.3 | 14.2 |
School uses visualization of schedules and timeh | 37.3 | 42.1 | 10.2 | 2.9 | 7.5 |
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Individual support is integrated into whole class teaching* | 24.1 | 43.1 | 12.4 | 3.8 | 16.6 |
Strategies for handling stressful situations are provided* | 16.2 | 40.3 | 19.7 | 3.7 | 20.1 |
Students’ interests are integrated in teaching* | 17.1 | 38.8 | 21.9 | 4.0 | 18.2 |
Development of students’ communication skills in individual and group context* | 31.3 | 39.9 | 10.0 | 2.7 | 16.1 |
Development of language/communication is always part of the support for students with NDD* | 27.6 | 41.1 | 11.5 | 2.8 | 17.0 |
Training of students’ social skills in individual and group context* | 37.1 | 36.9 | 9.8 | 3.7 | 12.5 |
Training of social signals and rules are part of the support for the NDD student* | 29.5 | 39.5 | 14.1 | 3.3 | 13.6 |
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Staffs get time to discuss NDD student’s behavior and support plans* | 22.1 | 36.4 | 24.9 | 8.1 | 8.5 |
NDDs student’s needs are known even outside of the classroom, in the rest of the schooli* | 18.5 | 33.9 | 22.3 | 7.5 | 17,8 |
School offers space for rest and withdrawal* | 24.5 | 35.5 | 23.3 | 8.8 | 7.9 |
There are individual crisis plans for challenging situations* | 15.1 | 29.2 | 22.3 | 13.2 | 20.2 |
Staff discusses how to avoid minor signs of difficulties* | 47.1 | 1.9 | 39.8 | 5.4 | 5.8 |
Self-regulation techniques, such as reward systems are used in the work with the student* | 22.6 | 37.5 | 17.3 | 5.6 | 17.0 |
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There is mutual exchange of knowledge about the student with NDD between home and school* | 38.9 | 40.4 | 6.1 | 1.1 | 13.5 |
School uses caregiver’s knowledge to optimize support* | 43.1 | 36.9 | 5.4 | 0.6 | 14.0 |
Caregivers have access to a specific responsible contact person* | 45.6 | 28.1 | 6.1 | 2.9 | 17.3 |
There are regular exchanges between caregivers are responsible staff around the student with NDD* | 46.4 | 35.6 | 5.9 | 2.2 | 9.9 |
Decisions taken around the student are taken together by parents and school* | 42.7 | 37.5 | 4.4 | 0.3 | 15.1 |
Parents are viewed as experts of their child* | 31.4 | 38.2 | 9.8 | 2.5 | 18.1 |
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The school applies programs to develop peer relations | 14.8 | 28.5 | 22.9 | 15.4 | 18.4 |
NDD students are prepared for unstructured social situations* | 26.6 | 40.2 | 15.5 | 4.0 | 13.7 |
In case of group-work, the composition of the group takes into account knowledge of the student with NDD* | 43.7 | 36.3 | 5.1 | 2.9 | 12.0 |
Peers are involved in the social support development for students with NDD* | 16.2 | 31.2 | 20.5 | 12.5 | 19.6 |
There are selected peers who students with NDD can refer to for help/advice (e.g. mentor systems)* | 3.4 | 8.0 | 24.1 | 46.2 | 18.3 |
Peers who regularly interact with NDD students are aware of their needs* | 29.0 | 46.2 | 10.3 | 1.5 | 13.0 |
The student with NDD is viewed an individual with strengths and weaknesses, not merely problems* | 46.9 | 37.1 | 9.5 | 0.9 | 6.5 |
Students at the school are used to handle diversity* | 47.0 | 41.4 | 8.0 | 0.8 | 2.8 |
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A support oriented view for students with NDDs is natural in our school* | 42.1 | 36.3 | 11.5 | 4.0 | 6.1 |
Staff understands that individualized support might be necessary for a given student with NDD* | 65.9 | 25.2 | 4.0 | 1.4 | 3.5 |
There is regular exchange with external NDD experts* | 17.4 | 29.0 | 20.2 | 10.1 | 23.3 |
School can provide information about support and treatment of NDDs outside of the school* | 8.9 | 17.0 | 16.9 | 15.5 | 41.7 |
Responsibilities around the support of NDD students are clear among the personnel* | 19.4 | 37.8 | 20.9 | 7.9 | 14.0 |
Based on the planned support for NDD students there is regular exchange with other involved professionals* | 18.1 | 32.0 | 16.9 | 5.5 | 27.5 |
The school staff has basic knowledge of NDDs* | 24.0 | 42.3 | 13.9 | 3.5 | 16.3 |
Various school staff has advanced knowledge of NDDs* | 28.1 | 31.5 | 16.1 | 4.3 | 20.0 |
A special education view and related support means are part of the school philosophy for NDD students* | 28.3 | 41.7 | 16.1 | 3.9 | 10.0 |
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
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).