The project titled "DEVELOPMENT OF SUPPORTIVE PACKAGES FOR PARENTS AND TEACHERS OF CHILDREN WITH CEREBRAL PALSY (03-18 AGE GROUP)" is financed by the Lifelong Learning Programme (Grundtvig Multilateral Project) of the European Commision.
Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, behaviour, by epilepsy and by secondary musculoskeletal problems. (Rosenbaum, Peter et. Al. 2006 )
The prevalence of CP shows a variable rate, ranging from 1,5 to 3 per 1000 live births. Every year 10.000 children in the European Union are diagnosed with CP.
The ginger group, from Projects Coordination Team in Ankara Provincial Directorate for National Education, Turkey, behind the present project wished to investigate how parents and teachers of children with CP coped with this task. An internet search was carried on and the related research and literature were investigated. Meanwhile, discussion groups and face-to-face interviews were carried out as a preparation for the project. 20 teachers working at schools with CP pupils participated in the discussion groups once a week for 6 weeks. In addition, face to face interviews were conducted with 5 teachers and 15 parents at a school which mainly has pupils with Cerebral Palsy. According to these; it showed that parents as well as teachers lacked knowledge and competencies to assist the children at home and at school. Besides, they lacked information on services and possibilities of assistance. Parents also expressed the need to share their feelings, hopes and fears for their children as well as the need for leisure time and privacy. Furthermore, research illustrates that the Quality of Life (QoL) of children with CP in terms of participation, social, attitudinal and physical environments is poor and parental stress index is often high. It should be stressed, however, that the factor QoL is primarily contingent on the environment in which a CP child is raised and thereby involves access to services and resources at local and national level. Therefore, QoL is also directly linked to national and social infrastructure, which differs from country to country. In some EU countries, this infrastructure requires further development in order to support the CP population more adequately and effectively. The conclusion is that parents and teachers of children with cerebral palsy need support in many ways taking into account the adequacy of their environment.
As a result of these analyses, CP-PACK project was developed by communication, co-ordination and collaboration of 7 various institutions from 6 different countries in order to support parents and teachers of children with cerebral palsy in the scope of their needs.
AIM AND OBJECTIVES
The aim of 'Development of Supportive Packages for Parents and Teachers of Children with Cerebral Palsy (03-18 age group) (CP-PACK) project is to improve actual approaches in supporting parents and teachers to cope with children with CP.
Objectives of the project are;
- to obtain reliable data on the needs of parents and teachers regarding CP,
- to improve acceptance of CP children by family members and teachers, by taking into consideration their actual abilities, skills and problems,
- to be competent parents and teachers of children with CP, with the necessary knowledge and skills required to support the disabled child effectively at home and at school,
- to develop a web-based information platform to support teachers and parents of children with CP,
- to contribute to raise awareness among decision-makers in education, parents and educational staff.
Target group of the project is parents and teachers of children with CP (03-18).
- Training modules for parents and teachers of CP children in English and partners’ languages,
- Project Website,
- Web-based Information Tool,
- Leaflet, articles and e-newsletters.
The project is implemented between 01 November 2010 and 31 October 2012.
1. Ankara Provincial Directorate for National Education, Ankara -Turkey ( AMEM) is the second biggest local public authority in education, of 81, in Turkey. It is responsible for the planning, coordination and management of all kinds of educational and training activities at local level.
2. The School of Education at Polytechnic Institute of Porto, Digital Inclusive Support Unit (NAID ) for Assistive Technologies and Department of Special Education, Porto - Portugal (ESE/IPP) is a higher education institution mainly devoted to training and certification of education professionals (teachers and education related technicians) but also with courses in Cultural Heritage, Social Education, Arts and Crafts, Special Education, Supervision technologies, etc. It is the biggest Polytechnic institute of Portugal.
3. The Polo Europeo della Conoscenza,Verona-Italy ( EUROPOLE) is a network of schools, teachers, researchers, associations and educational institutions at national level. It works for the European social and educational integration. Its main fields of activity are to promote the European dimension and integration through European and extra - European workshops, seminars, conferences, partnerships and projects.
4. Cerebral Palsy Greece, Athens-Greece ( CPG) was founded in 1972, by a group of parents to provide care for people suffering from Cerebral Palsy in Greece. It is a non-profit NGO with nation-wide and acknowledged pioneering activities in the field of disability. It offers a wide range of services for diagnosis, medical care, therapy, treatment, rehabilitation, education, social integration, recreation and vocational training of children and adults with CP.
5. Hacettepe University, Faculty of Health Sciences, Cerebral Palsy Unit in Physiotherapy and Rehabilitation Department, Ankara-Turkey (H.U.) is a reference center for all Turkey. Cerebral Palsy Unit has a primary role in preparation of physiotherapy and rehabilitation programmes for children diagnosed as CP and their families, in referring them to appropriate locations and in regulation of physiotherapy and rehabilitation programmes helding in home.
6. Center of Professional Training in Culture, Bucharest-Romania ( CPPC) is one of the main training providers in Romania, especially in the cultural field. CPPC were involved in 12 EU projects as a coordinator and partner organisation. CPPC staff comprise people with a high level of expertise in coordination and collaboration in European projects (Socrates – G1 and G2, Leonardo, FP5).
7. Helene Elsass Center, Charlottenlund- Denmark (HEC) was established in 2007.The main objective of it is to initiate research and development on Cerebral Palsy (CP). The center is based on a partnership agreement with University of Copenhagen – especially the departments of neuroscience, sports and exercise science.