1In 2013 we, a group of university lecturers, service providers and parents, involved in taking care of highly dependent children with multiple and severe disabilities, created a European consortium named “Enablin+ project” in order to develop an interprofessional in-service training, with the objective of improving their quality of life, inclusion and range of activities. Several reasons motivated our choice: our field experience that these children often lead passive and secluded lives, often far away from home when they grow older, they receive very little or inadequate education; there is hardly any inclusion; professionals as well as parents often have little belief in their potential. The European Disability Forum speaks about the “excluded from the excluded” (Faivre et al., 2000). They are, as Fornefeld (2014) remarked, the “forgotten fellow citizens.” This is at odds with the 2006 UN Convention for the Rights of People with Disability (UNCRPD), which puts an emphasis on the right to inclusion, non-discrimination, self-determination and quality of life. The contrast between the high ideals of the UN Convention and the experienced reality motivated us to design a training project where professionals of all kinds and parents could learn together. By going European, we wanted to bring together the experience of countries with a high degree of inclusion and those who were still at a starting stage/early stage/initial phase. The project was co-financed within the Leonardo Vocational Training section of the Life-Long Learning Programme of the European Commission.
2In this article, we will report the results of our development and a preliminary experimentation with this new training programme in eight EU countries.
3Children with multiple and severe disabilities are an ill-defined heterogeneous group, regarding aetiology, level of functioning and life course. They are seriously limited in mobility, learning, communication and self-care; they often have feeding difficulties, behavioural challenges, epilepsy or other medical problems (respiratory, gastrointestinal and others). Some have a degenerative neurological condition leading to premature death. Some are bedridden while others can only move with difficulty. In the English-language scientific literature, they are often referred to as having “PIMD” – Profound intellectual and multiple disability (Nakken & Vlaskamp, 2007). In French, they are called “polyhandicapés” (Zucman, 2011a). The French concept is wider than PIMD, because children with “polyhandicap” are not necessarily immobile nor do they necessarily have profound intellectual disability (Stiker, 2019). Although their IQ is unmeasurable or very low, this does not necessarily mean that there is no cognitive potential, as Pereira da Costa and Scelles (2012) demonstrated in their newly developed evaluation tool P2CJP. Nevertheless, both designations are based on a biomedical model of disabilities, which stresses deficiencies. Parents do not like this predominantly negative professional stance, because having their child labelled and considered “profoundly intellectually disabled” gives the impression that he/she does not understand anything and there is nothing that can be done. What parents really want above all is a more positive perspective, as has been beautifully described by the American philosopher Eva Feder Kittay (2015), who is also the mother of a daughter with severe cognitive disability: to be able to lead a life of quality, to be esteemed as a person belonging to society, to be loved, to “be included as a full citizen rather than being considered as an object of pity and charity.” She further writes “her life is not a tragedy, but is worth to be lived.”
4Nevertheless, for families, taking care of children with severe and multiple disabilities at home can be a heavy burden, physically as well as emotionally (Tadema & Vlaskamp, 2009). What these children share is that they have complex and intensive support needs, many of them needing 24-hour support (Faivre et al., 2000). In medical literature, the concept “complex care needs” has been used in a sense of medical and nursing care, encompassing children with acute and chronic illness (Brenner et al., 2018). In our Enablin+ project, we wanted to address all aspects of life for children in a situation of multiple and severe disabilities. Therefore, we would like to designate this group by the term “children with complex and intense support needs” (CISN); this term is more compatible with a social model of disability (Devlieger, Rusch & Pfeiffer, 2003; Buntinx & Schalock, 2010); it is needs-oriented rather than deficiency-oriented, and it leaves room for potential development.
5In many countries in the world, the needs of children and adolescents with CISN, their caregivers and supporters, are not fully met. The history of care giving is rather short: in the beginning of the 60’s, care giving was limited to ensuring basic physical wellbeing – if anything at all. Zucman (2011b) who was a pioneer in taking care of children with “polyhandicap” in France, stated that until the sixties physiotherapy was not even financed by the French state, because the idea was that it was money wasted. These children nowadays have more chances of survival and, therefore, they have increasing demands for support, in order to address their medical, educational, socio-emotional, communication and other needs. In the highest income countries, services for children with the most severe deficiencies and the highest needs have developed into sophisticated comprehensive support systems. In countries that have become member countries of the EU after 1990, there was hardly anything but basic institutional care giving until very recently.
6For children with CISN, access to education, learning, leisure and social life is seriously hampered (Schädler, Rohrmann & Schür, 2008; Arthur-Kelly et al., 2008). In many countries, these children are still taken care of in segregated institutions. The European Association of Service Providers for People with Disability (EASPD, 2013) has made de-institutionalisation a key goal. Countries, which signed the UN Convention, agreed to take measures against discrimination and to organize the possibility of including children with a disability in normal schools & life according to the principle of “reasonable accommodation.” We still need to reach this goal, because inclusive education is often reduced to a “procedural conception” of providing support, which continues to privilege more wealthy families. As long as the school system remains a competitive meritocracy, there will be no true inclusive education. To really participate with equal opportunities, a polysystemic change is needed, which transforms education into a vector for social affiliation, development of capabilities, with elaborated individual trajectories (Ebersold, 2015). For children with the most severe impairments and CISN, it is far from easy to operationalize what is “reasonable accommodation,” due to the high care needs, difficulties in communication and organization. Not surprisingly, there is very little inclusion (Slee, 2011). There is a need for a paradigmatic shift of attitudes, finances, training and opportunities (EASPD, 2018).
7In recent decades, a lot of effort has been put into improving the quality of life of people with CISN (Maes et al., 2007; Schädler, Rohrmann & Schür, 2008). This includes initiatives in research (Ronen & Rosenbaum, 2013) and staff training. Maes et al. (2007) stressed the need for staff training oriented at a person-centred approach, tuned in to shared attention, communication, active support and participation in community living. Except for special therapists (music, drama, arts, etc.), professionals receive basic knowledge and competence skills during higher or third level education (master and/or bachelor level). This means they have theoretical knowledge regarding disabilities in general (learning, visual and hearing impairments, intellectual and physical disabilities, autism/autistic spectrum, cerebral palsy, etc.) or have learnt to deal with specific topics like communication, behaviour, learning, or health care in a general sense. The complexity of supporting children with CISN, however, is often only a small part of a basic vocational training. Support professionals expressed their difficulties and their need for a more specialized training, mainly to better understand the behaviour of their patients and gain more insight/knowledge concerning specific difficulties and needs of the people they work with (Jansen, Poppes & Van der Putten, 2019).
8A number of evidence-based in-service training initiatives have been set up to prepare staff working with people with CISN regarding these aspects. Professional training networks have been created, e.g. Comité d’Études, d’Éducation et de Soins Auprès de Personnes Polyhandicapées (CESAP) in France, Multiplus at the University of Leuven in Belgium, Platform EMB in the Netherlands. A few training courses are being offered, such as the Individualized Support Programme (Vlaskamp & Vanderputten, 2009) and derived programmes in the Netherlands, the CAS-Polyhandicap at the University of Fribourg in Switzerland, a distance learning programme (complexneeds.org.uk) in the U.K. endorsed by the Ministry of Education. CESAP offers a wide range of training in different formats for a diversity of professionals taking care of people with polyhandicap. The study program for Special Medical Help has 100 % of a curriculum on a vocational level for people that have finished secondary education. It is based on supporting people with polyhandicap.
9Hardly any of these staff training programmes, however, prepare professionals for inclusive education and community participation in general. The reason might be that most children with CISN of the above-mentioned countries are in special schools, and/or in a residential placement. Another reason might be that there is a lack of intervention studies regarding quality-enhancing strategies in the domains of community participation and rights (Maes, 2007). To make inclusion and inclusive education a reality that corresponds to UNESCO’s inclusion policy, a quality of life approach should be the basis of individualized education plans (Lyons & Arthur-Kelly, 2014). Amaral and Celizic (2015) formulated four principles that should guide the education of children with CISN: the quality of life that the environment offers; the level of attention and engagement of children with CISN; opportunities for environmental control and the quality of interactions. Time to engage in interaction with children who are very slow in reacting, proves to be a crucial element in establishing communication (Neerinckx et al., 2013).
10To fill this gap, we wanted to design a training course, oriented towards a better quality of life, inclusion and a fortiori inclusive education.
11Participants in the Enablin+ course development were professionals and parents working with children (0-21 years old) with complex and intense support needs, because of severe impairments in three or more of the following areas: motor, sensory, cognitive, speech and language areas, behaviour and feeding problems, as well as additional chronic health needs. They came from seven European countries: Belgium (Flanders Region), the Netherlands, France, Romania (Transylvania), Bulgaria, Italy, Portugal (Alentejo Region) and the Island of Réunion (a French overseas department). We deliberately chose heterogeneity as regards inclusive practice and types of support, residential facilities and outpatient service providers; organisations providing direct support and academic or vocational institutions providing training courses. We also chose various types of professions, from people working in daily care to medical doctors and managers.
12We opted for a mixed-methods qualitative research design with purposeful sampling, because we wanted to understand the real needs of parents and professionals, construct a training proposal based on these needs, evaluate and adjust the training. The project consisted of three phases: a needs analysis, a course development phase, a course-testing phase followed by a qualitative assessment.
13For the needs analysis we sent self-made questionnaires to regional service centres, parents’ organisations and schools that take care of children with CISN. The questionnaires asked background information about professionals and parents’ previous and main occupancies, the children’s age and impairments, their living conditions, educational placements, activities the children/youngsters practised, the most frequently encountered environmental barriers; perceived training needs and examples of good practices regarding quality and continuity of care, meaningful activation and inclusion (Table 1). It also contained free-answer text boxes. The questionnaire was translated into eight languages and sent to service providers and parents’ associations involved with children with CISN.
Table 1. Items of Needs Assessment Questionnaire
14We organized four face-to-face international partner meetings with a core team, consisting of ten educational psychologists, a speech therapist, a physical therapist, four medical doctors (one of whom was a parent), two occupational therapists, a sociologist, a teacher and two social workers. On each occasion, the local core team invited regional experts (parents, professional educators, teachers and people from other professions). We, thus, tried to ensure real interprofessional collaborative teamwork, constantly subjecting the development process into feedback. In between, we had a number of online or physical editorial meetings with a smaller team.
15The examples of good practice in supporting children with CISN, the answers (as suggested in the questionnaires), were further explored as to their suitability for training purposes and their authors were asked to make videos and to motivate the reason for selection of good practice. One partner (PT) organised a series of regional parents-professionals seminars. At each international partner meeting, the nominated and filmed examples were discussed in the group of core team developers and invited regional experts.
16Based on the answers on the needs’ study, on literature, and on feedback on good practice examples during the meetings, we drew up a common core training course: “Enabling Quality of Life through meaningful learning.” The course concept grew “organically” during and in-between the international partner meetings and each concept was subjected to extensive feedback.
17During 2015-17, we tried out pilot courses in the partner countries. The partners invited participants with an open procedure within their regional networks. Everyone involved in care and support of children with CISN, from different health, education or social professions, as well as parents, was eligible to take part. All partners were free to adapt format and contents according to local/regional needs. In September 2016, we organized a 2-day international train-the-trainers course in Milan for 50 participants from mixed professions, followed by a one-day conference for a larger public. Evaluation of the courses was done in two phases: immediately after the course, the regional organizers asked participants to fill out questionnaires, electronically or on paper, regarding their appreciation of the usefulness, relevance, practicability, novelty, didactic quality and duration of the course. Participants could also write down any suggestions they might have had. They were also given free-text options, as well as a 0-5 scale. About one year after the pilot courses and six months after the train-the-trainer’s course, a self-made, open-ended end-of-project questionnaire was sent by an independent evaluator, who did not belong to the partnership, to the project’s beneficiaries (professionals and parents), enquiring about the impact the project had had on them, the services received and the organisation.
18The answers to the needs’ assessment questionnaires were gathered in an excel database. Relevant training topics extracted from the database, notes regarding the regional-partner experts’ meeting discussions, videotapes and text descriptions of good practice examples were analysed by the core development team using thematic network analysis (Attride-Stirling, 2001). After the pilot courses and train-the-trainers course, the answers to the course evaluation questionnaires were analysed in a qualitative way and presented in the form of a SWOT (strengths-weaknesses-opportunities-threats) analysis. The independent evaluator also used the methodology of thematic network analysis in analysing the answers to the end-of-project evaluation questionnaires.
19254 professionals and 166 parents answered the questionnaires about training needs (Table 2). We can summarize the results as follows: there is a need to understand, create and share knowledge basis about the concept of profound and multiple disability and more specifically about the complex support needs for specific children in a specific context (home, institutons, school, etc.). This involves the combination of basic health and medical information about the child in daily life (feeding, toileting, sleeping, attention, pain management, etc.) and information about his/her basic skills, functioning or learning (social and cognitive development, play, etc.). There is need for (the sharing of) knowledge concerning practical, methodical and innovative ways of stimulating these children in the development of physical and sensorial activities; communicative, cognitive, adaptive and functional skills and the use of new technologies herein, as well as how to deal with challenging behaviour. Finally, a commonly expressed need is to understand how to organize inclusive education, finding out/figuring out what kind of mutual activities disabled children can share with non-disabled peers, how much and what kind of support is needed. The details of the needs’ assessment are reported elsewhere (Lebeer et al., 2015).
Table 2. Respondents to questionnaire “Needs assessment for in-service training”
m = missing value.
20The development process resulted in a suggestion for a three-stage training process: (1) after the basic specific professional training, (2) insert a 2 to 6 days “common core” training in workshop format consisting of six modules, with heterogeneous small interprofessional groups (figure 1); stage 3 consists of a series of optional courses, adapted to specific professional needs. Here we will only deal with the interprofessional “common core” training, which is directed at people already working or preparing to start a new job.
21The overall objectives of a common core training course are: (1) to raise awareness that it is possible and worthwhile to stimulate and educate children with CISN; (2) to raise awareness of mind-sets (belief systems) regarding possibilities in learning and participation; (3) to train people in a supporting role in implementing a quality of life-framework, inclusive schooling, inclusive lifestyle and integration into society. By “supporting people,” we mean all kinds of people and professions: parents, teachers, teaching assistants, personal assistants, educators, psychologists, special needs psychologists, rehabilitation staff, medical doctors, social workers, managers, hence with a variety of basic training; (4) to promote interprofessional collaboration. Specific aims of the training concern introducing participants to approaches and methods that enhance children’s communication capacities, improve daily life activities, improve self-efficacy of staff and parents when dealing with challenging behaviour and activating cognitive and non-cognitive inner resources, enabling children with CISN to participate and learn.
22While the content of the common core training has common themes, we left its structure flexible, in order to adapt to local and national circumstances. The common core training makes participants familiar with several conceptual frameworks underpinning professional activities: (1) the UN Convention on the Rights of People with Disability (UNCRPD) stresses the principle of inclusion as a human right and the concept of “reasonable adaptation”; (2) the eight Quality of Life domains (Schalock & Verdugo, 2002); (3) the Capability approach (Nussbaum, 2006) states ten capabilities all human beings possess and should be allowed to express in order to live a life with human dignity; (4) the Supports Paradigm (Buntinx & Schalock, 2010) states that disability is not a characteristic of the person, but of the barriers in the environment, and that with proper support (technical, personal or otherwise), a person with disability can participate as a full citizen; (5) the ICF scheme offers a framework to classify functioning in terms of body functions, activities and participation, and external and personal factors which influence functioning (Maxwell, Granlund & Augustine, 2018).
23We have suggested six modules: A first module deals with the needs of children with CISN: who are they? A second module introduces the quality of life framework, the UN convention, the capability approach, inclusion and support paradigms. A third module focuses on learning and (inclusive) education. A fourth module deals with a quality of life plan including assistive tools and support. In a fifth module participants learn to understand and deal with challenging behaviours; and the subject of a sixth module is to design inclusive activities in daily life based on previous modules.
Figure 1: Training scheme for interprofessional and parents training dealing with children with complex and intensive support needs (Lebeer et al., 2017)
24The common core course is described in detail in a book with attached DVD, containing 13 filmed examples of good practice: a walk in the park; “to school together” classes; an inclusive nursery; a kindergarten welcoming a boy with complex cerebral palsy; an inclusive schooling project; an inclusive middle school welcoming a girl with Rett syndrome; an inclusive primary school welcoming a girl with Angelman syndrome; the operating of a home-based family-accompanying interdisciplinary service (in France called a “SESSAD”) – where speech-, occupational-, physical therapists, doctors, psychlogists and social workers work together; an inclusive theatre project, communication with eye tracking assistive technology and an early intervention project. The examples can also be seen online on a password-protected site (Lebeer et al., 2017).
25The teaching and learning methods rely essentially on problem-based and case-based learning, dialogue, reflective learning, analysing videos showing concrete examples of “best practice” and feedback on self-made video recordings.
26Based on the designed common core training, every partner proceeded in customizing the curriculum, according to region-specific needs and every partner’s organizational construct. This adaptation resulted in a variety of in- and out-door training sessions. Table 3 illustrates the overall picture of the pilot training. During 2015-17, 64 activities were organized in the partner countries within the pilot training sessions, led by 78 experts from various professions (as well as a few parents), for 688 participants. Thanks to a flexible, locally adaptable format, with emphasis on “low threshold” to participate, all targeted professions and parents participated. In addition to this, students in special education, psychology, medicine, social work, rehabilitation and occupational therapy participated. The three-day train-the-trainer course had 50 participants.
Table 3. Pilot trainings in the Enablin+ partner countries
*212 registered names to one or more activities during thematic week in Belgium; **15 registered names in the pilot course in January-February 2017; 120 registered names to one or more activities during 2015-2016 in preparation and dissemination of pilot course.
27The type of pilot courses varied widely according to local needs. Not only one format was applied. All partner countries organized, often on-site, seminars and presentations, thematic workshops or case presentations, critical case analysis and critical debates. Most partner countries organized one, two or three- day training seminars for small groups, which covered the basic common core-training content. One partner (BE) organized a thematic week with a plenary conference, on-site visits, workshops in various places and a theatre evening. The Dutch partner organized, next to a 2-day interprofessional pilot course, a new one-year training course, specifically targeted to low-schooled educators. CESAP (FR) organized a two-day interprofessional introductory course for staff members who had just started working with children with CISN, as well as a conference.
28Table 4 lists an inventory of the general themes and specific topics classified according to Schalock and Verdugo’s (2002) Quality of Life domains.
Table 4. Specific training topics for promoting interprofessional care and quality of life in children with complex and intense support needs, categorized according to Quality of Life domains
29Because not all project partners were able to give systematic evaluation data, a quantitative analysis of the effectiveness of the course was not possible. We were, nevertheless, able to make a qualitative analysis. We will present it in the form of a SWOT model (strengths, weaknesses, opportunities and threats).
30The developed course responded to a widely felt need of professionals and parents, as already expressed in the background section. The aims of the course were to create more awareness and knowledge on how to assess the needs of children with CISN in a broad, ecological way; how to enhance the children’s and the staff’s interactive, cognitive and communication skills; how to improve daily life activities; how to control and regulate problematic behaviour; to create a change of attitude and belief system and to promote inclusion in school, in the children’s lifestyle and integration in society. The course raised awareness of the complexity regarding needs and possibilities.
31Complexity is a main characteristic for this category of children. According to Ronen and Rosenbaum (2013) the term complexity better describes children with multiple impairments in body structure and function associated with restriction in activities and participation and concerns “the potential impact on parents and families of raising a child whose life situation is beset by complexity.” The term complexity refers to the level of organization of a system; the term of severity instead refers to the extent of a specific disorder. The approach to complexity means that any problem referring to the child needs to be analysed with a systemic approach to have a vision of the network and of all its (the network) possible interconnections.
32Each level of the system is a kind of brick on which one can build successive levels, in a kind of evaluative chain proceeding bottom-up. This is not characteristic only of children with CISN, but it is part of the fact of being human (Morin, 2008).
33The courses answered the need to increase interprofessional collaboration and communication. They succeeded in reaching out to all types of support staff. The interprofessional form of learning in heterogeneous groups (between different medical, educational, social, therapeutic, supportive, administrative, decision and policymaking professionals) which reflects the situation on the work floor, was highly valued, in a concrete way. This reflects the necessity of working in context, grounded in the real life of the children with CISN and in relation with their environment.
34Involving and training parents as equal partners in the teamwork to enhance the quality of life (QoL) of their children, opened a fruitful dialogue between the different professionals and the family. This created a feeling of equality for parents, a sense of not being left out from certain (professional or medical) decisions. It makes parents feel more involved, responsible, sharing and eager for knowledge and information. Self-advocacy and self-determination, which are part of the QoL domain as defined by Schalock and Verdugo (2002), might seem illusory concepts for people who literally don’t have a voice, and who are dependent on support for everything. However, raising awareness of parents and professionals together, by means of training courses, and giving “tools” on how to listen to the children’s true needs, is an important way to increase quality of life. It must be said that the parents who participated in the pilot training events were “biased” by already being advocates of co-constructive decision-making. Their presence was, in this sense, important because it created more awareness in the participating professionals. Involving parents as equal participants in research, training and action planning, is part of an emancipatory paradigm (Russell, 2004). In recent years, parent-professional alliances have taken the lead in pioneering innovative inclusive care projects, such as the “together to school classes” in the Netherlands and Italy or inclusive nurseries. Working with such “examples of good practice” shows that inclusive care and education is feasible. They are concrete utopia, which can serve as a contagious model for others. It is important to start at an early age.
35Another strong point was the variety and relevance of the topics (table 4), which participants rated highly. Everyone was able to find a content that corresponded to his/her perceived needs. Participation and activity and a fortiori, inclusive education, which are reputedly of low level in children with CISN, were key issues in this course. All domains of Quality of Life were dealt with in a concrete way.
36The flexibility of the course format was perceived as a strength, because it was tailored to local constraints and possibilities, which allowed a vast participation. People also highly valued exchange between peers, or between professionals of different backgrounds. Seminars of 1 or 2 days were positively valued because of their practical feasibility, but they regretted the lack of time to have more of such experiences. All courses were face-to-face meetings. People seem to value dialogue and meeting.
37Learning from each other to enhance quality of life and inclusion – was seen as one of the important effects of the project by the independent evaluator (Goldbart & Pierson, 2017).
38We were also able to identify some weaknesses of the pilot courses. Despite the UN Convention on the Rights of People with Disability, there are wide discrepancies between the member states of the EU regarding the application of the directives; there are also differences in the rapidity of their implementation. This implies also a difference in time and emphasis put on the aspect of rights, leaving much less time for other points. A two-day event is in this case not enough. Even though certain basic “modern” concepts in the domain of disability rights (e.g. quality of life, capability, inclusion, support paradigm, biopsychosocial model) may be shared and affirmed, they are not necessarily a well-rooted part of the conceptual system, nor practice, of all stakeholders engaged in the world of disability. The different speed at which a legislation is implemented leads to a different legal approach and to different financial resources. This inevitably influences dialogues in a common course: a discussion e.g., on “quality of life” could be stuck at the first point: “lack of material resources to be able to execute the right to inclusion.”
39Differences in legal and financial support systems between countries affect a number of course characteristics: the number, length and periodicity of courses/training that can be offered on CISN; the quality and quantity of the teaching staff on CISN topics; the mobility of training and of the training staff (only in-door training, in- and out-door training, visiting training, field trips included).
40Time constraints are a shortcoming of training. The short length of the course itself made in-depth learning difficult. Nobody succeeded in organizing a full six days training, only for pragmatic reasons. School principals and directors are reluctant to let their staff go on training during working hours, because that puts a stress on those who stay with the children. A way to overcome this is to organize several half- or one-day events, with breaks in-between, alternating with online interactive sessions, or a thematic week such as was done in Belgium. Similarly, lack of follow-up after the courses could weaken effectiveness.
41The limited project time did not allow to measure effectiveness as regards the inclusion of children with intensive and complex support needs. Our research was limited to the development and impact of a new kind of training. We were able to see that training raised motivation to take initiatives towards more inclusion. Future research should be conducted to look into the effect of training staff and parents in generic as well as specific approaches on the enhancement of quality of life, activity and participation of children with CISN.
42The pilot courses generated some interesting opportunities. For 5 out of 8 partners, it was the first time a course was organised on the subject “Supporting children with intense and complex support needs: enabling quality of life through meaningful learning” in their country. This allowed the creation of a learning network and possibly a learning community. For all partners, the courses also created an opportunity to reflect on conceptual paradigms such as quality of life, human rights, inclusion, human capabilities, which might look philosophical, but which have very concrete implications in daily life. Practice already exists, but certainly, regarding inclusive education for this target group, it remains rather rare and thus vulnerable. If a paradigm shift towards inclusion, such as advocated by UNESCO (Lyons & Arthur-Kelly, 2014), can spread on a wider scale, it needs to be polysystemic (Ebersold, 2015) and have target interventions on multiple systems: the microsystem of family and classroom, the meso-system of school and community, the connection between all involved systems and the macro-system of financing, laws and culture. In this way, an ecology is created where a child can develop to his/her maximal potential, whatever its biological impairments (Bronfenbrenner, 1997). International collaboration in our project allowed identifying a few examples, which managed to create such a developmental and inclusive ecology, and to share them beyond borders, thus creating opportunities for innovative projects. The good practices shown in the training illustrated how inclusion had a developmentally stimulating effect. Although the paradigm of quality of life is not so new, for some of the European partner countries who have a history of institutionalisation and basic “survival care,” its implementation is still new and challenging. Using video-based training materials with examples of good practices proved beneficial, and it helped research for such examples.
43An international course project merging academically oriented (research based) and practically oriented (experience-based) knowledge, boosts opportunities, thus helping proceed in the direction of a better quality of life and inclusion. Evidence-based knowledge often remains limited to an academic circle of people who understand English well. However, in Europe, most of the people working in an educator or therapeutic role, do not master English sufficiently to read English-language academic journals, which are dominant in the area of disability. A project such as Enablin+ allowed us to translate not only in different languages, but also to translate academic knowledge to hands-on experiential knowledge. It was also beneficial to notice a two-way exchange. It was enriching to involve partners outside the Anglo-Saxon culture, and to see that not all relevant research came from Anglo-Saxon sources. Paradoxically, the language of communication between the Enablin+ partners was English, as is the language of this article, though none of the partners are English native speakers.
44Everywhere, the courses created opportunities for dialogues between professionals of different backgrounds and parents, for which, in “normal” daily life, there is often little time.
45Only one of the partners tried out an e-learning environment, as an extension of the real meeting time. Potentially an e-learning platform could be a good modality to learn techniques and approaches, and thus be a facilitator for enhancing the QoL of children with CISN. It could be a means and a communication channel between families and different specialists and/or the community, support or leisure groups, thus creating learning networks. In France, such a network already existed before Covid-19 pandemic times (e.g. Réseau Lucioles). Since the Covid-19 pandemic, people have become accustomed to forms of e-learning, either in real-time or self-learning. Some of the partners have in fact made use of the pandemic as an opportunity to consolidate on-line learning. It is however doubtful whether e-learning could replace face-to-face meetings. It is more likely to become an adjuvant modality to real meeting.
46Involving policy makers, even if only briefly present in some cases, could be a lever towards political (and financial) changes.
47In the partner countries, the courses generated some sustainable long-term developments after the project ended in 2017: e.g. in the Netherlands, several Quality of Life Expert Centres have been created specifically concerning children with CISN. In most of the partner countries, the innovative contents of the training have been “anchored” within existing specific training as e.g. in the training of medical students at the University of Antwerp (BE), who are doing apprenticeships with the CISN target group in their third year. At the Babes-Bolyai University in Romania, inclusive education became a compulsory subject for all participants is a pilot didactic master program. In the special school Kozmutza Flora, early intervention programmes have been set up for children with multiple disabilities with an objective of participation in mainstream schools. In Portugal, the University of Évora has incorporated the Enablin+ training in Master degrees courses in education and psychology. In Belgium, the training content has found its way in training bachelor students in special needs. More specifically, at the UCLL College, students in special needs bachelor programme study a reflective instrument “optimal school environment” (Vastmans et al., 2017). Also in Belgium, “Multiplus,” an in-service training centre specifically oriented at people with multiple and complex support needs, expanded to a sustainable training network funded by a consortium of service providers. In France, the common core training is repeated every year and is part of an in-service training trajectory. France has the advantage of its size and system of training, which allows operating a service such as CESAP that can be an example for other partners. In Bulgaria, Enablin+ partner Karin Dom Centre disseminates this knowledge through yearly in-service training of the staff of new community-based homes taking care of children with CISN who have been transferred from the large institutions. In this way deinstitutionalization is supported. Dissemination expands even beyond Europe through the partners’ partnerships, e.g. in Brazil, Ukraine, Bolivia and Cambodia.
48Other examples of impact on inclusion of children with CISN include the expansion of the “Together to school” projects in the Netherlands and the starting of an inclusion project in Belgium for children with CISN, who came from an inclusive nursery.
49The e-learning environment applied in the Netherlands has continued in a sustainable e-platform (Platform EMB), which works complementary to face-to-face learning modalities. It can act as a “window to the world.”
50When looking at the future of this “new” kind of training, sustainability is threatened by a lack of systematic follow-up. Funders such as the European Commission take subsequent financial sustainability after three years’ funding for granted. The Enablin+ project continued only in a virtual way.
51To create a real paradigmatic shift, however, more time is needed than a three-year project period. Processes of change are slow. The target group has little or no political power. Parents strive in the first place for a decent system of care allowing a dignified existence. Constraints in time and financing limit dissemination.
52To learn to work really interprofessionally – which is a step further than multidisciplinary working and it is also very different – requires time and a special way of working (Tsakitzidis et al., 2015). However, next to heterogeneous, interprofessional learning groups, a need to organize intra-professional in-depth learning (e.g. in medical issues, pharmaceutical approaches, assistive technology in communication) also emerged.
53Because the group of children with CISN is relatively small (as compared to the overall percentage of children with disability) and because of the complexity and specificity of their needs, training is dependent on experts in specific topics (e.g. communication, technology, behaviour management, medical aspects), who are scarce in some of the countries. This makes training more costly. Experts, certainly in the beginning, should be ready to teach at an international level. A way to disseminate new knowledge more rapidly is to organize an international Train-the-Trainer course.
54Inclusive living and learning appears to be very rare. In most of the partner countries, children with CISN are in special education and many are in residential placements. The topic of inclusive education was innovative and controversial. This is not necessarily a weakness of the course, but a source of controversy. Even in pioneering “inclusive countries” such as Portugal and Italy, there are children with CISN in private special schools and residential placements. A welcomed discussion during the training regarded “how to integrate inclusive education with high care needs.” Using the videotaped examples of good practice proved to be a good didactic method in this case. It is important to go beyond the discussion whether a special school or an inclusive school is better, and to focus on how inclusion can be made a reality. Inclusive education, according to the UNCRPD, is not only a right, but also a first choice.
55Another threat lies in a strict application of a competence-based model, which is increasingly required by training institutions and funding agencies (Voorhees, 2001). The competence framework is based on descriptions of parts that simplify the complexity of a professional context. Critics view the movement towards competency-based systems, especially in general education areas, as reductionist and prescriptive (Betts & Smith, 1998). Professional competencies tend to be no more than measurable descriptions of visible behaviour. Not every aspect of professionalism can be described in terms of competences. Professional practice then turns into a technical performance debilitating creativity and imagination necessary in the interaction with today’s reality. When a professional has to fit into a competence model, the result is rather conformism and uniformity instead of innovation. A professional approach disempowers from acting authentically in response to particular situations (Goudie cited in Moore, 2000). The challenges of the 21st century in the field of social practice and education need an opposite approach: reflective practitioners in search of an expertise, the greater the expertise the greater the individuality (and not uniformity or conformism). A risk of a competence-based focus is that learning processes are narrowed down to “performing” and “practical knowledge”; it becomes a product rather than a process (Grant, 1999) or just “procedures” (Ebersold, 2015). The connections between tasks, the attributes that underlie performance; the meaning and intention, or disposition to act; the context of performance; and the effect of interpersonal and ethical aspects are ignored. In education, there must be a free space of critical thinking and personal growth.
56Inclusion – the opposite of exclusion and discrimination – embraces diversity. It is based on the right to belong, on equal rights to participate and to take part in society. It should become a big issue in training and education of social professionals and teachers. The urge to design competency-based training programmes with an inclusive perspective, raises the following reflective questions: what are the critical competencies needed in an inclusive organisation, competencies that support inclusion? How do you teach someone (who thinks himself to be competent already) an inclusive approach he does not believe in? How do you perform in an inclusive way in an exclusive context? How do you deal with resistance against inclusion in professional settings?
57The more we dig into these questions, the more we encounter the limits of a competence model and we experience its counteracting effect on learning towards inclusion. Thinking about a competence model that fits the inclusion paradigm either ends up in concrete descriptions of care and education (e.g. how to lift, to feed, to interact or to communicate in a proper way with someone with severe and complex disability) or ends up in vague language (work in an open, respectful, empathic, equal way, etc.).
58When asked about transversal competences needed by people working with children with CISN, we ended up with the following list: communication skills with children and with parents; empathy for the child and for parents; patience, passion for the work, flexibility, belief in modifiability, readiness to look for solutions, creativity, team player, ready to learn (life-long learner), ethical awareness. All professionals said they believe that all these competencies, necessary to work with children, were lacking in basic training. Few developed them during specialization courses or acquired them mainly on the job. These are not really competencies, but they are rather elements of a new perspective on care and education and a value system that helps to develop existing competencies that can support inclusion.
59Organizing interprofessional training oriented towards quality of life and inclusion, has been shown to respond to a growing need to offer comprehensive care, activities and participation opportunities to children with the most severe and multiple disabilities, who have complex and intensive care needs. Complexity is a keyword: complexity of needs, approaches and services constitute a huge challenge for organisation, staff training, and cooperation frameworks. We prefer suggesting the term “Children with complex and intensive support needs,” as it focuses on the word needs, which best defines the problem, rather than a deficiency-oriented term “profound intellectual and multiple disabilities.” The designated term: “needs-oriented” is also subscribed by advocacy organisations such as the European Disability Forum (Faivre et al., 2000) and Inclusion International (Freyhoff, Schädler & Schür, 2008). It also proved to be a more productive concept in training.
60As this target group is marked by a lack of activity, education, participation in ordinary life and inclusion, staff training is, in many respects, innovative. A training built around the framework of “quality of life” and “inclusion” allows putting the principles of the UN Convention on the Rights of People with Disability into practice, giving it a concrete operationalization. Key characteristics of effective training are interprofessional, interactive learning groups; parent-professional cooperative learning, empowerment, case-based reflective learning and good practice sampling. Enhancing sharing and inter-activity to an international level has proven to be enriching. Sharing not only knowledge, but values, beliefs, thoughts, fears, nightmares, worries, but also possibilities, options, expertise and attitudes is more effective. Providing flexible training formats for a common content is important to lower the threshold of participation. Various forms of e-learning can complement face-to-face meetings and allow in-service training without interrupting work schedules. Regular national conferences sharing practice experience, not only boost motivation but also innovations. Such initiatives will help to enhance awareness and put the “forgotten group of citizens” with the most severe disabilities in the spotlight.
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