The project ENABLIN+ is addressed at the needs of children and youth with complex and intense support needs (CISN), and
the people who support them. It wants to develop a system of interdisciplinary in-service training, where professionals and parents of various professional backgrounds learn together, with the aim of enhancing quality of life of the children. It responds to urgent needs for training, signalled in richer as well poorer EU member states, to meet the increasing demands for supporting children with CISN and comply to the 2006 Convention of the United Nations on the rights of persons with disabilities, forcing countries to take measures of de-institutionalisation and to organize the possibility of including children with a disability in normal schools & life. Actual vocational training insufficiently prepares professionals to deal with these issues. There is a need of transdisciplinary collaboration of all concerned: parents, teachers, daily-life supporting staff, medical & rehabilitation staff and vocational training staff.
To that purpose, the project wants to do (1) a needs study, (2) search and describe examples of good practice, (3) develop a set of training modules in EN, NL, FR, IT, RO, HU and BG languages, oriented at support needs assessment, staff attitudes, beliefs and conceptual systems, enhancing children’s communication capacities, daily life activities, behaviour regulation, activation and participation in learning and inclusive schooling. (4) Modules can be on-line as well as in real meetings. (5) An international summer school will be organised. (6) Results will be disseminated in newsletters, professional articles, a white-book and DVD.
Duration: 1/1/2014-31/12/2016; 36 months
Children and young adults with complex and intense support needs (CISN), sometimes called “profound intellectual disability” or “polyhandicapés”, or “multiple disabilities”, are difficult to put into one project category. They have indeed multiple needs: they are difficult to include in regular schools, they need a lot of care and attention, staff is usually ill-prepared and parents have a lot of needs too. According to the 2006 Convention of the United Nations on the rights of persons with disabilities, countries that ratified this convention now have a duty of deinstitutionalising children and to organize the possibility of including children with a disability in normal schools, to promote social inclusion. This is not obvious, especially for youngsters who have severe and multiple difficulties in daily activities of self-care, learning, communication, mobility, as well as in participating in education or other activities.
First, these children often do not get adequate early intervention and parent support; later, they are often taken care of in separate environments. In some countries, education is very rudimentary. An often heard complaint is that there is never enough staff. Inclusion policy is still lacking. In most countries, except Italy and Norway, they are not usually integrated in regular environments. Dedicated professionals, who support or teach these children, do not necessarily know the means or ideas how to assist these children in mainstream schools or other inclusive settings. Parents are in need of help. Another problem reported is the lack of activation of many children with serious intellectual disability. Staff and children of mainstream schools are not accustomed nor prepared to accommodate these children.
The reason why these situations continue to exist can be found in a lack of belief that it is possible and worthwhile to activate children, even with severe intellectual impairment; that it is possible and worthwhile to take inclusive initiatives and that in the long run quality of life of everyone (including those who support) can be enhanced. Other reasons that the target group is usually neglected in training initiatives might be that they do not represent an economic power and it is easier to do passive caring than active involvement.
Deinstitutionalisation needs to be accompanied with training of all people involved, and on all levels. People, who work with children and youth with intensive caring needs, are insufficiently trained during their basic training. This happens at all levels: in vocational training, at university and colleges. Moreover, once at work, other needs of training arise while working. There is a need to develop ongoing training systems on the work floor.
People do learn various techniques in their basic training, but what is lacking is a basic attitude and belief system, that it is important to activate the children from early on to give them experiences, that one believes they can learn; that people have an inquisitive, explorative attitude to look for solutions which work, that it is important to participate in life’s opportunities as much as possible, including going to school, that the way you address these children matters, etc. Therefore, training needs to address attitudinal and ethical issues, as well as practical aspects. It needs to work at a shift in belief systems and conceptual systems, as well as provide hands-on practical advice.
To realize this goal of inclusion and activation, there is a need of transdisciplinary collaboration of all parties concerned: parents, teachers, daily-life supporting staff, medical & rehabilitation staff and vocational training staff.
Solutions which have proven their efficacy - inventions made by professionals or parents - remain often very local, because of language and organizational barriers. Local organizations could therefore benefit from an exchange at a European level. To achieve this goal, parents-professionals cooperation must be strengthened, and in-service training models should be developed which are of benefit to institutional supporting staff, regular school staff and parents, in approaches of intellectual activation and inclusion. Hence the name "ENABLIN +", which has two aspects (enabling = the opposite of disability; it means: to allow the person to function).
Indirect target group
Children and young adults with complex and intensive dependency needs with multiple impairments and severe restrictions in activities and participation in the field of daily life self-care, education, communication, and mobility and leisure activities. Often these children are referred to in the English literature as “PMID” – Profound multiple intellectual disability” or “polyhandicapés” in French. We preferred to broaden the target group, more in terms of their needs of intense support, which has not so much to do with the medical situation, but more with the impairments. This project is thus oriented at children with multiple disabilities, who have a combination of marked limitations, which put at serious risk their development leading them to experience severe difficulties in the learning process and participation in the various contexts in which they live: education, family and community. These limitations and their level of functioning result from the interaction between their health conditions and the environmental factors. According to Orelove, Sobsey and Silberman (2004) and Saramago and colleagues, (2004, p.213), children with multiple disabilities:
"... exhibit marked limitations in the cognitive domain, associated to limitations in the motor domain and/or sensory domain (seeing or hearing), and may also need specific health care. These limitations prevent the natural interaction with the environment, putting at serious risk the access to development and learning. "
Children with multiple disabilities may exhibit very different characteristics, which are determined, essentially, by the combination and severity of the presented limitations, by the age in which they arise and by the lived experiences. Therefore, they are students with unique and exceptional learning needs. They also need ongoing support in most daily activities, such as feeding, hygiene, mobility, dressing and undressing.
Although it is a heterogeneous population, it is common to manifest pronounced limitations in terms of some mental functions, and display great difficulties in communication and language (such as difficulties in comprehension and production of spoken messages , verbal interaction with partners, in conversation and in accessing information) and on motor functions, particularly in mobility. They may also have limitations in seeing or hearing functions , and often coexist serious physical health problems , including epilepsy and respiratory problems.
Concerning activity and participation, the greatest difficulties of these students lie at the level of:
- the processes of interaction with the environment (with people and objects);
- understanding of the surrounding world (difficulty in accessing information);
- the selection of relevant stimuli;
- understanding and interpretation of the received information;
- skills acquisition;
- concentration and attention;
- of thought;
- decisions taking about their life;
- problem solving.
The barriers to their participation and learning are very significant, that’s why they require:
- intensive support in daily activities and in learning;
- partners who accept them as active participants;
- identical experiences in different environments;
- common environments where significant opportunities exist to participate in multiple diversified experiments;
- opportunities to interact with people and significant objects.
Consequently, these students need specific services support, in their natural settings, whenever it is possible, in order to respond to their specific needs. These supports must be embodied in their individual educational programmes.
Direct target group:
Mainstream and special education staff, personal assistants for daily living, support staff, parents, medical & rehabilitation staff, representative organizations for the disabled, vocational training staff at secondary and continuous professional development level.
- To promote quality of life of children and young adults with complex dependency needs by increasing social and educational participation, facilitating activities, learning and development; by raising awareness of those supporting them, that it is possible and worthwhile to activate them, and by creating a shift of mind in this sense;
- To enhance the quality of support as well as contribute to de-institutionalisation and inclusion, by increasing self-efficacy of parents and professionals working with children and young adults with complex dependency needs, in accompanying them towards a more inclusive and active life;
- To develop interdisciplinary in-service training modules for professionals and parents working with this target group, to enhance competencies in cognitive activation, increasing autonomy, activities in daily life, communication, behaviour regulation and in inclusive education;
- Professionalizing staff of mainstream schools in welcoming children with complex dependency needs;
- Strengthen parents-professionals cooperation;
- Empower parents and professionals.
- The transdisciplinary character and multi-level learning
- The valorisation of expert knowledge by different sources: parents, daily care professionals, researchers, teachers, medical/rehabilitation staff etc.
- Training parents and professionals together, different hierarchical levels together: carers, teachers, parents, doctors
- Complementarity to basic vocational training which is taking place separately, and in-field training which is really interdisciplinary
- The needs- based and not impairment-based approach
- The definition of the target groups as “complex and intensive needs & dependency”
- The stress on inclusion, not only in social life but also in education
- The construction of training modules based on real needs
- A common framework, based on the ICF, modifiability and inclusion paradigms