VVAG Vlaamse Vereniging van Artsen in Gehandicaptenzorg ENABLIN+ Enabling and Including Young People with Complex and Intense Support Needs: A vocational education training project 2014-2016 Studiedag Genetica en verstandelijke beperking: stand van zaken en implicaties voor de zorg Vrijdag 29 januari 2016 Jo Lebeer, University of Antwerp Marina Rodocanachi, Vismara Rehabilitation Institute, Fondazione Don Gnocchi, Milano Supported by the European Commission s Life-Long Learning Programme (1/1/2014-31/12/2016). Contractn 541981-LLP-1-2013-1-BE-LEONARDO-LMP "ENABLIN + enabling = the opposite of disability; it means: to allow the person to function; the IN standing for inclusion ; the + standing for multiple disabilities or extra and multiple needs Enablin+ = to indicate we are focusing in this project on children with multiple disabilities 2016 Jo Lebeer, Universiteit Antwerpen 1
For whom? Children and young adults with complex and intensive support needs (CISN) (0-21 years) 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 PIMD Profound intellectual & multiple disability or polyhandicapés in French. Medical & rehabilitation staff and vocational training staff teachers, daily-life supporting staff, parents. Comité d'etudes, d'education et de Soins Auprès des Personnes Polyhandicapées Karin Dom Foundation Varna 2016 Jo Lebeer, Universiteit Antwerpen 2
What do we want to achieve? Promote quality of life of children and young adults with complex dependency needs by increasing social and educational participation, facilitating physical wellbeing, activities, communication, learning and development; Raise awareness and create a shift of mind in those supporting them, that it is possible and worthwhile to activate them; Enhance the quality and continuity of supporting children and young adults with complex dependency needs; Contribute to de-institutionalisation and inclusion; Develop interdisciplinary in-service training modules for professionals and parents working with this target group; Professionalizing staff of mainstream schools in welcoming children with complex dependency needs; Strengthen parents-professionalscooperation What s the project s strength? Professionals of various professional backgrounds and disciplines and parents learn together, within and from their practice The valorisation of expert knowledgeby different sources: parents, daily care professionals, researchers, teachers, medical/rehabilitation staff etc. A needs- based and not impairment-based approach Defining the target group not on the basis of their disability buton their needs: complex and intensive needs & dependency Accent not just on good care, but onactivity and inclusion, not only in social life but also in education A shared common conceptual framework: the UN Convention on the Rights of People with Disabilities 2016 Jo Lebeer, Universiteit Antwerpen 3
How? What are we going to do? Workpackage 1: Who are they? Needs of people with complex dependency needs (research) WP 2: Good practices of continuous support systems and inclusion (research) WP 3: Interdisciplinary In-Service Training Development (development) WP 4: Pilot in-service trainings (implementing) WP 5: Integrated Train-the-trainer course (training) WP 6: Dissemination & Valorisation WP 7: Quality Assurance, evaluation & reporting WP1: Methods of the needs assessment study Questionnaire for professionals and for parents enquiring about: - the experienced needs regarding care and education, home or institution-based care, - the used test and assessment batteries, - barriers to participation and activities, - training needs - examples of good practices. Literature research ICF (International Classification of Functioning) as a basis to describe difficulties and needs of people with complex dependency needs with regard to activities and participation in different domains of life 2016 Jo Lebeer, Universiteit Antwerpen 4
Conclusions of Needs Assessment Research1 1. The 8 domains of quality of life (Schalock et al.), represents best the essential goals to strive for, in policy making, planning services, education and other areas of life. 2. Measurement of functioning: static standardized test batteries are not suitable to determine real needs, actual and potential level of functioning. Alternatives: qualitative, observational, dynamic, interactive, timerepeated, methods, ICF, videoportfolio 3. Continuous support systems vary widely from country to country; most urgent issues are (lack of) availability of human resources, and sometimes of assistive technology as a support for inclusion. 4. Stress on family system: everywhere, but very high in countries with less material resources Conclusions of Needs Assessment Research2 6. Activity degree: low degree of activity is a problem in the case of children with CISN; lack of human resources + lack of belief in possibility and necessity 7. Degree of inclusion (participation in mainstream society, e.g. inclusive education, inclusive leisure activities) varies widely in Europe. Children with CISN are most included in IT and PT, but urgent necessity to train professionals in how it can be done. 8. Need to believe in possibilities: parents want to find people who (1) really believe in the child s possibilities to develop, to learn, to be active and to participate, and (2) take the time to interact and explore. This is an issue for training and for awareness raising 9. Need for training and sharing expertise 2016 Jo Lebeer, Universiteit Antwerpen 5
WP 2: Continuous support systems and inclusion Start:February 2014; End December 2016 meeting: Varna (BG) September2014 Klas-op-wielen, Alkmaar B-o-Z, Roosendaal 1. Needs assessment of in-service training of professionals 2. Define what is good practice in supporting CINS 3. Ex.of good practice regarding continuous support systems 4. research for approaches which have proven their success with the target group in the areas of daily activities and participation such as: mobility, toilet, sleep, hygiene, play, communication; difficultly understandable behaviour, cognitive activation and inclusion 5. make video samples of good practice, 6. construct an interactive website to the demands of the people working in the field & parents WP 3: Interdisciplinary In-Service Training Development start: April 2014; end March 2016 1. develop a set of modules of post-graduate training for staff of mainstream and special education, support (caring) staff and parents 2. make a set of teaching videos on each of the topics 3. define the kind of certification 4. talk to authorities to recognize the certification 2016 Jo Lebeer, Universiteit Antwerpen 6
WP 4: Test IST: Pilot training 1. Each country will organize a training with a 1 to 2 groups of professionals and parents BE: Thematische week Integratie zorg & onderwijs 17-21 mei 2016 Studiedag Leuven 17/5/16 workshops, bezoeken in alle provincies Poezieavond Gent met Ad Goos inter-disciplinaire case-conference Het Veer Sint- Niklaas 21/5/16 i.s.m. VVAG NL: MBO branche training - Wijhe NL WP 5: Integrated Train-the-trainer course Milano Conference 24 September 2016 Train-the-trainer course & workshops : 22-23 September 2016 2016 Jo Lebeer, Universiteit Antwerpen 7
colophon ENABLIN+ Enabling and Including Young People with Complex and Intense Support Needs www.enablinplus.eu Coordinator: Jo Lebeer Universiteit Antwerpen www.uantwerpen.be/nl/onderzoeksgroep/handicapstudies/ jo.lebeer@uantwerpen.be Campus Drie Eiken R3.13 Universiteitsplein 1 B-2610 Wilrijk Belgium Tel +32 3 265 25 29 Fax +323 265 25 26 Leer- en inclusiebevordering INCENA Inclusion & Enablement www.sclm.uantwerpen.be Disclaimer. Dit project krijgt financiële steun van de Europese Commissie binnen het Levenslang Leren Programma. Contractnr. 541981-LLP-1-2013-1-BE- LEONARDO-LMP. De inhoud van deze publicatie behoort tot de volledige verantwoordelijkheid van de redactie en de uitgever en de Europese Commissie kan niet verantwoordelijk gesteld worden voor welk gebruik dan ook van de informatie die hierin wordt weergegeven 2016 Jo Lebeer, Universiteit Antwerpen 8