The document describes the E-SUNET project which aims to develop an e-learning network and support materials to help families of disabled people through distance learning courses and an interactive platform. It provides an overview of the project activities including researching existing family learning materials, developing e-learning courses on disability topics in multiple languages, and establishing networks to support families. National reports from several partner countries found a lack of training available for caregivers of disabled individuals and note this project will help address those needs.

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E-SUNET project has been funded with the support from the European Union under the Lifelong Learning Programme managed by the Education, Audiovisual and Culture Executive Agency. This publication reflects the views only to the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.
NEWSLETTER 1, MAY 2014
E-SUNET
Sustainable network for the families of disabled people through e-learning
540073-LLP-1-2013-1-CY-GRUNDTVIG-GMP
In many occasions all over Europe, the disabled people do not receive institutional care but they are treated informally in their houses by family members. However, these family members are usually not trained properly on how to treat a disabled person and many times they want to seek advice from a training material or from other people that are in the same situation. This is also true sometimes for the disabled people themselves who cannot guide the person that is taking care of them cor- rectly. The E-SUNET project, having considered all these issues, aims to develop a network and supporting mate- rials in order to support the families of the people with disability through distance learning courses and through an interactive communication platform.
The main activities of the project are the following:
 Research on the learning material that is already available for family learning
 Development of e-learning courses for family learning in the context of dis- ability. These courses will be available in all languages of the consortium part- ners and will include special courses for various types of disability (mobility problems, visual disability, hearing problems, etc.). The courses will be at the level necessary for family members who are not expert in medicine. The ma- terial will be rich in visual multimedia content (e.g. videos) in order to be more attractive and helpful.
 The courses will also be used for the training of the disabled people them- selves in order to be able to look better at themselves or to give better in- struction to the people that take care of them.
 Development of networking between relevant institutions in each country for the support of the families with disabled persons.
The impact envisaged is the significant increase of the support available for the families of the disabled people and, ultimately, the improvement of the care they receive.
Short introduction of the E-SUNET project

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RTD TALOS is a private research and development organisation from Cyprus specialized in the consultancy around areas of innovation and R&D and in management of European projects. TALOS has special expertise in the dis- semination and exploitation of project results.
Action Synergy S.A. is an ICT R&D, training and knowledge- based applica- tions organization which is actively involved in the development of education technologies, training methodologies and the development of e-learning training courses.
Muscular Dystrophy Association Cyprus was founded in 1986 with the aim of the reassurance and provision of medical and emotional support to its mem- bers and the promotion of measures for active support from the Cyprus Government and society for people with neuromuscular diseases.
FormAzione Co&So is located in Florence and its mission is the tutoring of persons with disabilities during their job insertion pathway, supporting them in companies in agreement with the Province of Florence. They are also a Training Agency accredited by the Tuscany Region and have a longstanding experience in the field of European Programmes especially in the framework of LLP Education, Culture and DAPHNE.
Asociatia “Fundatia H” - Association “H-Foundation” is a non-governmental, not for profit, apolitical organization, its mission is to assure equal chances of education and support for disadvantaged people, regardless of their form of disability (physically, ethnically, socially or geographically).
INVESLAN is a private research company, specialized in the fields of train- ing, employment and management. The main working fields are: training, especially professional training and adults educations; Gender Issues; Em- ployment; Knowledge Management; Disadvantaged collectives; Evaluation.
ZGURA–M is a consulting enterprise, having its activities fully directed to- wards people with disabilities and seniors (55+). They are active in the training of professionals working with people with disabilities in order to en- courage their independent living and also in mentoring and coaching people with disabilities.
JAW is a social services organisation which aims to create life perspectives, to offer adapted assistance and to take chances in the areas of care, self- determination and inclusion for persons with disabilities, training for young adults, employment, early intervention, and crisis intervention.
INS HEA is the National Higher Institute for Training and Research for Edu- cation of Young Disabled Persons and Adapted Teaching and its main activ- ity is the education and training of persons with special educational needs. INS HEA also runs researches, carries out masters and training programs aimed at persons working in educational area.
Short introduction of the project partners
www.talos-rtd.com
www.inveslan.com
www.fundatiah.ro
www.formazionenet.eu
www.mdacyprus.org
www.action.gr
www.zgura-m.eu
www.jaw.or.at
www.inshea.fr

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The first meeting of the E-SUNET project has been organized in Athens, Greece in the 27th and 28th of January 2014. In this meeting, the project partners had the chance to meet each other for the first time and they have organized all the activi- ties of the project with a special focus on the activities regarding the research for the identification of the existing situation and the needs of the target group.
Partners held short presentations describing the present situation in their countries and identifying the added value that the E-SUNET project will have in relation with the existing training opportunities offered. Partners concluded that there is a need to differentiate between the material that is relevant for caring disabled adults and the material that is relevant for caring disabled children. Also, the ICT skills of the learners should be taken into consideration when designing the e-learning content and platform.
Partners also agreed that the next phase of the development, which is the prepa- ration of the national research reports, will be divided into two distinct phases. In the first phase a desk research will be organized focusing on the issue of the train- ing offer available, training needs and best practices re- garding four different dimensions (individual auton- omy, self regulation, psychological em- powerment and self realization). The sec- ond phase of the re- search will include a field research when interviews will be conducted with per- sons with disabilities and their family members.
1st transnational meeting—Athens, Greece, 27-28 January 2014
All important information about the E-SUNET project but also about the field of the training for disabled people and their family members can be found on the project website: www.esunet.eu. The website is going to be available in 8 European languages (English, Greek, Italian, Romanian, Spanish, Bulgarian, German and French). All the main results of the project are going to be available through the website which will also include link to the e- learning platform.
LIKE US ON FACEBOOK: E-SUNET is also present on Facebook with the latest project news: https://www.facebook.com/action.gr
E-SUNET website & Facebook page

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A measure of the success of a society is the extent to which those requiring care because of disability or old age receive the care they need in a dignified way. The provision of proper care is among the main concerns of People with Disabilities and their families. This factor may determine the level of autonomy and social in- clusion they can achieve. Currently in Cyprus, families are major supporters of in- clusion and empowerment of children and adults with disabilities, due to the ab- sence of any centralized system that would provide care to people with disabilities.
There are no official data for the exact number of people with disabilities in Cyprus, however, during the European Health Research in 2008, 117.332 people (about 18% of the population) over 15 years old, reported that they are facing serious health problems which cause them limited functioning.
The responsibility for financing the provision of Care to the People with Disabili- ties in Cyprus lies on the Department for Social Inclusion of People with Disabili- ties. Care covers a broad range of specific services including institutional and home care services.
Among the main drawbacks of the current system of providing care to people with disabilities, is the lack of training courses, material or online platforms to the family members of the carers themselves which would familiarize them further with the needs and the scope of occupation. The government is not employing and not training the caregivers (either parents or professionals) therefore the responsibility of spotting and training falls on the disabled themselves. The proper training of caregivers is a necessity. Apart from the practical aspects of handing the care of the disabled, it is essential for the proper stress management which is a frequent outcome of this job. Currently, apart from the initial rehabilitation instructions given by the physiotherapists during the last stage of the treatment, there are not any training modules or material that would provide the necessary information to the interested parties. It is common phenomenon that family members or carers seek information on their own or train themselves through the practice method.
There is an obvious lack of professional and ongoing training for caregivers in basic skills of moving and handling, facilitation of activities of daily living and sim- ple nursing tasks which would reduce the burden of care and would improve the quality of life of patients and caregivers.
RTD TALOS Ltd and the Muscular Dystrophy Association of Cy- prus are participating in the project from Cyprus. For further information on the project activities please contact:
RTD Talos Ltd.: Mr. Stelios Stylianou, ss@talos-rtd.com, Tel.: 22-454333
MDA Cyprus: Ms. Maria Kyriakou, mda@cing.ac.cy, Tel.: 22-392610
National report / desk research - Cyprus

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In Austria exists a wide ranged supporting system for people with disabilities from early childhood to elderly care and their families.
There are offers which are financed by public authorities, but it has a strong feder- alist component (provinces responsibilities). There are detailed strategies devel- oped by the relevant ministries (in the ministries of employment, ministry of social an d health, ministry of education). The NAP (national action plan for disability) brings these strategies and plans together and formulates aims and measures of disability policy.
The offers include financial support and subsidies just as personal support and training for parents. Early Childhood Intervention and Family Support Service is fi- nanced by authority in Steiermark, one of the provinces of Austria.
There is a growing awareness of the importance of family engagement and support in order to improve quality and meet the needs of families of people with disabili- ties.
Self help groups have been installed and non profit organizations acting in the field of people with disabilities, they often have been founded by concerned relatives. They represent the concern of the family and offer parent meetings, training on the type of disability, training on effects of disabilities, face to face training and training in access to support services.
Some of the social service providers are working very intensively on topics like self-determination and people-centered monitoring. People with disabilities should be enabled to get independent living and participation in society.
Nevertheless there are no well-known e-learning programs for families of people with disabilities.
Austria's geographical location implies small distances. Usually provincial- and dis- trict towns are easy to reach for families of people with disabilities within an hour, this fact seems to be one of the reasons why using and developing new media tools in this field have no authority until now.
Jugend am Werk Steiermark GmbH is participating in the project from Aus- tria, for further informations please contact
National report / desk research - Austria

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In Italy the Ministry of labor and social affaire is the most important public institution dealing with the disabled special services, but it is not the only one. In fact in Italy the law 328/2000 specifies the role of each public institution (state, region, province, mu- nicipality and public institution of assistance and charity) for the social service in the relative geographic area. The National Fund for Social Policies is the main source of funding for this field.
The families of people with disabilities have the main support by the public institutions, the “Distretto socio sanitario di base” (Basic social and health care district ser- vices) present in each region, but they can also benefit from the services of private as- sociations, cooperatives and volunteers associations. In fact according to the law 104/1992 the parents of people with disabilities in work or out of work age can benefit of the social service assistance in all its aspects: from the medical diagnosis to the physiological help, to the necessary information to make the family more aware of the handicap and the possibilities they have to improve the life of the person with disabil- ity.
There are different kinds of public support services for families, in Tuscany for exam- ple there is a didactic center managed by the City of Florence: CRED Ausilioteca di Firenze, that offers a series of meetings with the parents of people with disabilities to reflect on parenthood, especially regarding the everyday challenges of assisting their children with disabilities and on the topic of autonomy.
But, although families of people with disabilities benefit from a large scale of support services there is no institutional or national system to offer training to the families of people with disabilities, just sporadic examples all over the coun- try and just very few examples of online training.
In fact, in Italy training is offered mainly in the private sector, especially by associa- tions, social cooperatives, volunteer associations and some EU projects and mainly on the topics of autonomy and independent living of people with disabilities, how to deal with the “after us” issue (what will happen to people with disabilities after their par- ents’ death) and how to deal with emotions. Some examples are:
 Summer training camp for parents of people with Down syndrome (AIPD associa- tion)
 Courses on the sexuality of people with intellectual disabilities and on the their rights on the basis of the UN convention (ANFFAS ONLUS )
 Parent training to foster the wellbeing of parents and stress management (Gli Argonauti and EducAttivaMente)
 Parent training to guarantee them a psychological support and to transfer skills that will help them to manage better the educational relationship with their kids (Centro Socio-educativo Francesca)
Therefore, there is basically no training (face-to-face or online) available in the topic of self-determination. This is why the e-SuNet project is essential in Italy.
FormAzione Co&So Network is participating in the project from Italy. For further infor- mation on the project activities please contact:
Patrizia Giorio, giorio@formazionenet.eu, Tel.: +39 055 4222167
National report / desk research - Italy

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Based on the research and interviews organised with project beneficiaries the team of ZGURA-M conclude on the following main problems and topics which they faced and which required dedicated training materials and blended support :
 Lack of personal life (especially for the mothers)
 Concerns about the future of their children with disabilities
 Concerns for their own behaviour
 Tension and anxiety
 Lonely, feisty and encapsulated about the illness of their child
 Fear to talk about the child's disability
 Frequent conflicts in the family
 Need of support and lack of updated information about the possibilities cause by the disability have been highlighted
 Society attitudes toward the people with disability including the attitude of other chil- dren in the class and the other parents of non-disabled children
The lack of new media and online structured courses for partners of people with disabilities is evidenced and this well justifies the need of E-Sunet project.
So far the team of ZGURA-M did not find available e-learning courses for families of people with disabilities.
During the last 4 years there are a few initiatives who provide training or support to families of people with disabilities like:
a. Early Intervention Programme by “Karin Dom” which offers a great opportu- nity for a problem-solving process that involves the parents. This mobile team of specialists includes social workers, physiotherapists, special pedagogues, and speech therapists. Consultants suggest ideas for activities, that are adapted to- wards the child's age and stage of development, which parents can easily use in day-to-day life, during meal times, sleeping, play time, and when the child is in- teracting with their siblings.
b. "Laboratory for parents" aims to support and assist the parents of children with special educational needs of Gabrovo Municipality seeking ways and ideas for adequate support to their children. The goal is practical advices to be pro- vided as support to parents of disabled children both as part of their education and social integration. There is no structured curriculum to provide such services and this depending on the work of the social workers, psychologists involved.
c. Therapeutic workshops for children and parents which consists of psycho- logical family counselling offered by a psychologist and speech therapist aims to establish the marital functioning of the project participants and the establishment of the interests of children to be included in the thematic workshops: "Art ther- apy" , “Occupational therapy " , “Game workshop”
As a conclusion we identified the lack of sustainable training materials or individual plans.; lack of availability of enough publicity materials online as well as lack of sus- tainability beyond the project lifetime.
ZGURA-M Ltd., Bulgaria, 4023 Plovdiv, JK. Trakya, 31, “Osvobozhdenie” avenue, Karina House, fl. 1, tel./fax: +359 32 62 88 90, email: zguraprojects@gmail.com
www.zgura-m.eu
National report / desk research - Bulgaria

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Focusing on programs promoting self-determination in France, it appears that a lot of ways can be used to get information about disabilities, like Internet, universities sources, associative net- works, families and colleagues discussions, documentary sources, etc. E-learning materials are nevertheless poorly developed and it is hard to find substantial information related to programs promoting self-determination for relatives and families.
The French Program focuses on French disabled people and their caregivers by promoting self-determination and self-advocacy for people with intellectual disability and guiding people with intellectual disabilities and training their parents and relatives. Disabled people can connect each time they need to get advices or solutions while encountering specific difficulties.
The principal goal is to help people with intellectual disabilities as well as their relatives to de- velop more and more social skills, this by supplying adapted guides. Those tutorials do not only refer to disability issues but also to everyday life, know-how, for themselves but also for the family members. People can for example access to guides explaining concretely how to man- age in a bank or how to vote. All those resources participate in facilitating full access to society also for people with disabilities.
Access to internet resources is unlimited as well as no specific level is required, anyone with a basic knowledge can get into the blog and increase his knowledge. Understanding is supported by using a lot of pictures and pictograms in order to make it accessible even for individuals who are not that familiar with reading.
However, this blog specialized for people with intellectual disabilities doesn’t aim to ensure a “real” progression as it only consists in resources in free access whenever needed.
Training courses constitute another type of helpful resource regarding the promotion of self- determination in relatives and families educative behaviors. The French Association for people with Down Syndrom developed 3 programs targeting either professionals, disabled people or their families and aiming to transmit the basic concepts of self-determination. These training courses allow the participants to become aware that they have numerous skills in the field of the self-determination and encourage them to develop real educational attitudes favoring the self-determination. Trainers use a face to face method mixing theoretical modules and practical issues in order to enhance people’s self-knowledge, autonomy, psychological empowerment and self-organization.
Although few programs can be identified we have nevertheless to recognize that no internet support specifically dedicated to families does yet exist. The e-SuNet project should allow us to open a new way in supporting families and relatives.
INS HEA, representing FRANCE, is involved in the e-SuNet project. For further information please contact:
INSHEA: M. Marc Blin, marcblin@yahoo.fr, Tél +33 (0)6 60 96 53 57
www.inshea..fr
National report / desk research - France

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GENERAL INFORMATION
The number of people with disabilities in the European Union, is 37 million people. This represents 10% of the population. According to the World Health Organization (W.H.O.) and to Greek state organizations the number of people with disabilities in Greece is approximately 1 million.
Nowadays in Greece, the relevant policy being enforced is based on and follows the international developments and advances. However, it is characterized by long de- lays and huge gaps in infrastructures. Appropriate training and effective integration of people with disabilities in society should be the state’s ultimate goal and effort. The state should support them and their families and improve their quality of life. This is not the case in general. Many steps must be taken in order to improve the disabled peoples’ and their families’ everyday life.
CURRENT SITUATION in GREECE
According to the National Confederation of Disabled People, people with disabilities living in Greece often face social exclusion in the following areas: • Education: it is rather difficult for people with disabilities to smoothly and equal-ly participate in the educational process. • Accessibility: despite existing legislation easy accessi- bility is not always a given (i.e: public transportation). • Culture and entertain- ment: for participation in related activities specific con-ditions are required. • Health: difficult access to hospitals or other public health care institutions, insuf- ficient health & social insurance. • Welfare and social care: Obvious deficiencies in the welfare state system exist. As a result of this current situation the families or related residential institutions bear the full care of people with disabilities. • Em- ployment status: According to studies, 84% of people with disabilities are not employed.
Regarding the training available to families of people with disabilities, the desk re- search showed that it is informal and usually organized by the different disabled people’s organizations that currently exist in Greece. The type of training is face to face (usually in the forms of seminars) using traditional methods and in most cases it is more theoretical rather than practical.
In addition, information sessions or training seminars are also organized and pro- moted by Universities, such as the University of Athens. Apart from a certificate of attendance, the participants/trainees do not receive any official certification or ac- creditation.
Finally, the desk research showed that so far there are no e-learning courses avail- able addressed to families of people with disabilities and that there is no official in- stitutional or national system to offer this type pf training to the above mentioned target group.
Action Synergy is participating in the project from Greece. For further information on the project activities please contact:
Kostas Diamantis– Balaskas, euprograms@action.gr, tel: +30 2106822606
National report / desk research - Greece

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GENERAL INFORMATION:
In June 2013, in Romania there are 700,736 persons with disabilities (physical, so- matic, visual, mental, psychic, auditory, associated, HIV/AIDS, rare disease and deaf), which means 3.48% of the total of Romania population.
683921 from persons with disabilities are living with their family.
According with the statistics, in June 2013, 140,593 is the number of persons with physical disability who live with the family. 7,754 from them are living in Bucharest.
CURRENT SITUATION
In Romania, many parents are aware of their child disability and they are also knowledgeable of his/her specific needs related to health, medication, care, their child rights, etc.
They are informed about their rights as a caretaker of the disabled child, about the financial and support services their child may avail of.
The information is accessible mostly through non-governmental association and through meetings between the parents (formal or informal exchanges of information).
Regarding the existing support services for people with disabilities and their parents we found that health, transport and therapy related services are ranked among the best.
Like the information, the training it is made usually through NGOs, parents associations, family doctors, etc. Although the Romanian legislation allows such type of education the governmental institutions have not put it into practice to the necessary extent. Only the non-governmental organizations provide for this service to the extent they may raise funds to sustain such projects.
Courses required by parents: alternative communication systems; anger manage- ment; how to become a mentor to my child; confidence building and assertiveness; independent living; computer courses; dealing with the child changing needs (e.g. sexual awareness) etc.
Asociația FUNDAȚIA H is participating in the project from Romania.
National report / desk research - Romania