E sunet newsletter 2 en

1

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 2, NOVEMBER

2014

E-SUNET

Sustainable network for the families of disabled people

through e-learning

E-sunet project aims to develop an e-learning training

material for the relatives of disabled persons in order to help them in their everyday interaction as well as to

contribute to the self-development of people with disa-bilities. Based on the field research performed in each

country (see page 3-4) project partners realized that the biggest gaps in the existing training materials are

within the field of self-determination. For the dimen-sions of self-determination see page 2.

Self-determination is broadly defined as having abilities and opportunities to steer one’s life in a direction that contributes to a personally satisfying life. People with

disabilities who consider themselves successful generally accept their disabilities as one aspect of who they are. They do not define themselves by their disabilities.

They recognize that they are not responsible for their disabilities, and they know that they are not inherently impaired. They do not blame others for their situation,

nor do they have a sense of entitlement. Instead, they take responsibility for their

own happiness and future.

Statements from interviewed persons:

Self-determination and its importance

“Relatives should learn how to make

people with disabilities feel responsi-

ble and how to stimulate them to set

concrete and feasible goals.” (family

member from Italy)

“I want my parents to be

more trustworthy to-

wards me.” (disabled

person from Bulgaria)

“There is a neces-

sity of education

of parents. They

consider us like

puppets, which

need of lot of

help.” (disabled

person from Ro-

mania)

“Self-determination is an important part

of the rehabilitation as it enables disa-

bled people to take control of their

‘new’ life .” (expert from Cyprus)

2

Self-determination is a set of attitudes and abilities that must be present if a person is to

be self-determined. An act or an event is self-determined if the individual’s action(s) re-

flected four essential characteristics: (1) the individual acted autonomously; (2) the be-

haviours were self-regulated; (3) the person initiated and responded to event(s) in a

“psychologically empowered” manner; and (4) the person acted in a self-realizing man-

ner.

Based on the above, self-determination is composed of the following four interconnected

dimensions:

* based on Michael L. Wehmeyer: The Arc’s Self-Determination Scale: Procedural Guide-

lines (1995)

The dimensions of self-determination*

Self regulation

The person acts according to his/

her own preferences, interests and/

or abilities

The person acts independently, free

from undue external influence or

interference.

Individual Autonomy

Self-management, including self-

monitoring, self-instruction, self-

evaluation and self-reinforcement

Goal setting and attainment of behav-

iours

Problem solving behaviours

Observational learning strategies: self

-observation, evaluation and rein-

forcement

Self-realization Psychological Empowerment

The person has control over circum-

stances that are important to him/her

Self-efficacy

Outcome expectations

Decision-making ability

Self-awareness

Self understanding

Self knowledge: knowledge of their

own strengths and limitations

Want to read more? You can find the full study here:

http://www.thearc.org/document.doc?id=3671

3

During the field research, consulting experts, people with

disabilities and relatives have provided an invaluable insight

for the E-Sunet project. Interviews were targeted towards

three target groups: relatives, disabled people and experts

in all participating partner countries (Austria, Bulgaria, Cy-

prus, France, Greece, Italy, Romania and Spain).

As regards the state-of-the-art of training for families of dis-

abled people, our research has found that this kind of train-

ing is scarce, informal and non-systemized. Moreover, there is no database which central-

izes the training offers and parents are often unaware of the courses that are available.

This leads to low rates of attendance in most countries. Furthermore, training aimed at in-

creasing the self-determination of disabled people through e-learning is even rarer, show-

ing that there is plenty of room for development in this field. Those very few parents who

have taken part in courses related to their children’s disabilities have spoken positively of

such trainings, highlighting the advantages that learning has brought to their lives. Ex-

perts and disabled individuals also appreciate the vital role that training can play in im-

proving the well-being and integration of the people with disabilities into the society.

Although some of the respondents were not familiar with self-determination in the first

place, most individuals seemed to be convinced of its importance after the concept had

been explained to them. Respondents, particularly experts and disabled individuals, are

enthusiastic about the improvements that free decision making and higher levels of auton-

omy can bring to their lives. They argue that being independent and trusted will not only

lead to higher levels of self-esteem and personal development, but also increase their

chances of successfully integration into society and the labour market. Relatives, although

agreeing to a great extent, are the ones showing more reservations, as they fear that

their disabled children would sometimes make decisions that could cause them harm. This

sentiment finds its counterweight in the claims of disabled individuals, who argue that

their families are too protective and don’t trust them sufficiently.

Finally, when it comes to the contents and features that

respondents would like to see included in the new training

material, there seems to be an across-the-board consen-

sus. The training should focus on reaching higher levels of

self-determination for individuals with disabilities, both in

practical and personal/emotional terms. Therefore, training

on emotional intelligence, conflict management, self-

esteem, interpersonal relationships, autonomy, sexual life,

ICTs, employability and related competences is a real ne-

cessity. Moreover, as this training will be based on e-learning, concerns have been voiced

around usability and accessibility. These concerns are linked to the low-to-intermediate

command of ICT skills that most respondents claim to have. On account of this factor, on-

line platforms should be kept simple and uncomplicated, and support should be provided

throughout the learning process.

Findings of the field research in the participating countries

4

Experts

We made interviews with five experts. Concerning e-learning three of them think that IT skills and IT

access depend a lot on the age of the user and on cognitive capacity of the user. In their mind there are

even relatives who are not interested in being trained. On the other side experts know parents from peo-

ple with disabilities who are acting like co-therapists. In some experts opinion many families are over-

protective, self-determination endangers their efforts to protect their relatives with disabilities.

The online course should be user-friendly in the way of easy reading and easy speaking. It should be a

communication platform, should increase knowledge and help to create networks. It should sustain fami-

lies in their decision making.

Relatives

We made ten interviews with family members of people with disability. Our interview partners had

knowledge about training offers but didn`t know any e-learning tools concerning their relatives with dis-

abilities. Some special behavioral trainings limit the opportunities to decide ( concerning special autism

training). Sometimes it`s very exhausting for the parents to give special training to their relatives with

disabilities, it takes much time and parents get more and more co-therapists. Parents who get coaching

and sustain in form of early childhood intervention as early as possible are aware of the importance of

self-determination.

Relatives would prefer knowledge support, a communication platform, pedagogical inputs, legal infor-

mation, services information and emotional support.

People with disabilities

Ten people with disabilities have been interview partners. The majority of people with disabilities had no

idea whether their parents followed any courses concerning their special needs by e-learning. Parents

should be more in a position to believe in their children and know more about their necessaries. Trained

parents are able to help them on the way to self-determination and help them to increase self-confidence.

People with disabilities want to live in their own pace tempo, they want to have more possibilities to de-

cide and need sustain in handling new situations.

Family members should not worry so much and should recognize the real needs of their people with dis-

abilities. Topics are to increase self-confidence of parents as well as lessons for parents and children to-

gether.

Field research—Austria

4

Field research was conducted in several stages around the summer of 2014.

First of all, we distributed questionnaires to 3 distinct groups: 12 social workers (representing the ex-

perts), 12 parents (representing the families), and 2 administrators of associations for persons with tri-

somy 21.

Concerning the experts, each one of them is familiar with the concept of self-determination, and knows

the dedicated training programs accessible to parents and to persons in a situation of disability. These

training programs, however, are conducted in the form of face-to-face courses (group work during 2

days). The experts are not aware of any e-learning program aimed at families. The idea of being able to

develop a platform of this type thus seems quite appropriate and meaningful to them.

When we ask them what subjects in particular they believe to be useful, they immediately answer the

question of the role of the family and close relatives in helping a person in a situation of disability to de-

velop capacities for self-determination so as to allow more space in that person's capacity to choose for

himself.

The experts believe that from a pedagogical point of view, practical cases must be privileged as well as

an easily accessible Internet interface. Lastly, experts stress the usefulness of proposing to families using

the platform the opportunity to meet from time to time in order to dialogue and share their experiences.

As for the families most of them (66%) are aware of and have participated in training programs on self-

determination and persons in a situation of disability. These are also group sessions during 2 days. The

strongly emphasized points are related to theoretical and practical knowledge making it possible to better

understand, on a day-to-day level, how to encourage self-determination starting at a very early age.

These training programs are nonetheless considered to be expensive, and this constitutes a real obstacle

for many families.

When parents are asked about the desirability of setting up an e-learning platform about self-

determination, they all answer that families are very much in favor of it. Families are seeking an easily

accessible interface, with short sessions and an attractive program enabling them to develop their every-

day skills while encouraging nonvirtual exchanges with other families.

Finally, we brought together (in 2 groups) 20 persons in a situation of disability, aged 16 to 42.

These were persons with trisomy 21 or with autistic disorders.

All these persons know training programs in self-determination because they have participated in them!

What they particularly appreciated in these programs is the opportunity to be together, to have time to

exchange, to speak out, to tell their experiences, to talk about the role of parents. The amount of time

available, however, seemed short to them, and these persons would like to be able to benefit from oppor-

tunities like this more regularly.

When we ask for their opinion about setting up an e-learning platform for close relatives so that those

relatives can provide help in consolidating capacities for self-determination, their answers are highly mo-

tivated: "that will help our parents to have more confidence in us", "that will allow us to do more things

for ourselves because we are capable of doing them!"

All the results of this preliminary field research support the e-SUNET project. Indeed, the results high-

light the desire and the need of each of the persons involved to develop a platform truly dedicated to e-

learning making it possible to support and favor the building of self-determination skills in persons in a

situation of disability thanks to the persons around them.

Field research—France

4

Currently in Greece, no official or standard training is offered to caretakers of people with disabilities by

public institutions. The disabled and their caretakers often seek for support, comfort and training from

different organizations/associations for the disabled that exist in Greece. Depending the type of the disa-

bility, whether it’s Physical disability, Mental disability or Sensorial disability there are several Disabled

people’s organizations.

The type of training offered is mainly not official (not offered by public institutions) in the form of semi-

nars and face to face training. In addition up to date no eLearning training is offered. In other words

there are no e-learning courses available addressed to families of people with disabilities. Moreover,

there is no official institutional or national system to offer this type of training to the above mentioned

target group.

The disabled people would be happy to participate in eLearning courses, as they believe that the eLearn-

ing methodology could provide useful training to them and their caretakers since it is easily accessible.

More specifically:

EXPERTS & RELATIVES

Participation in the existing training activities depends on the individuals’ willingness, economic and social

situation. Attendance to training courses/sessions is proportional to age (the younger-the more trained and

informed compared to older relatives). In addition the more active the relatives are (referring to their partici-

pation/membership in an organization/association for the disabled), the more informed (trained) they tend to

be. An eLearning tool for families and relatives of people with special needs should be simple, user friendly,

easily accessible and could cover the topics below:

All the categories of disabilities (definitions, pictures, special characteristics, cure, etc)

Videos

Catalogues with services, organization for diagnosis, intervention, etc.

Foreign language training

Supportive technology used in training the disabled and their relatives

ICT skills training

Solutions to practical problems

How to facilitate everyday life of people with disabilities and their caretakers

Build healthier relationships (minimize conflicts, build trust, etc)

Minimize social isolation

PEOPLE WITH DISABILITIES

People with disabilities have the need to become autonomous and live their lives as “normal as possible” (go

shopping, go to the movies, have relationships, have access to education, work and public services, etc).

Receiving training with the use of eLearning methodology would be very beneficial to them and their rela-

tives as they would have easy access to training from the comfort of their house in order to fully achieve self-

determination and autonomy by becoming self-reliant.

They would also like to have group eLearning training in order to have access to the required IT equipment

and also to socialize amongst them. Their eLearning training should cover the topics below:

Tips / tactics for successfully achieving self-determination

How to achieve autonomy

Psychological support

How to avoid social exclusion (for both them and their relatives)

To be informed about public services (not only related to health issues- i.e.: legal issues, etc)

Acquisition of ICT skills

To learn foreign language in order to have easy access to information from the internet (for medical

issues, exchange of knowledge, social media, etc).

Field research—Greece

4

Hereby we summarize the main findings of the interviews carried out in Italy.

A. Experts

Public “standard” courses addressed to families of people with disabilities (PwD) are not available at national level. Nevertheless, many private local/national initiatives based on

local needs, promoted by families’ associations/cooperatives/volunteer associations exist. Usually these initiatives take the form of informative courses concerning the services aimed at PwD available on the territory. In general terms parents do not seem very moti-

vated to participate to existing training. One reason could be that courses are often for payment. As far as e-learning course are concerned, a lack of expertise in using ITC tech-

nology is an obstacle. According to experts’ opinion, in Italy families are generally over-protective, however it would be important for PwD to have the possibility and freedom to experiment different situations and to make mistakes. Therefore it’s crucial to “prepare

the ground”, to raise awareness on these issues. Families should learn to be “trainers” of the contexts that surround people with disabilities. It would important to address concrete

topics in the online course, such as: Sexuality, Personal hygiene and body care, Cleaning and organizing home, Healthy diet, How to manage one’s free time, How to move inde-pendently in the city. It is also important to prepare families how to recognize when a

step/an objective is reached, and also to gain more confidence in the PwD’s skills. Training should be based on tools such as short films, videos, comic strips and cartoons, funny ac-

tivities/games/quizzes, exercises that involve both the family member and the PwD. The online course should include very simple and practical exercises. The course should give relief to the families, help them to be more aware of their need and willingness to continue

collaborating with the social services.

B. Relatives There is no widespread knowledge about training opportunities available on the territory,

neither face-to-face nor on-line, but relatives believe it’s crucial to increase self-determination of PwD and that all the opportunities aimed at this goal are extremely use-

ful and important. This highlights the need and the value of Esunet training course. Self-determination means that PwD should learn to work and live independently (manage the house from an economical and organizational point of view), have a relationship, get the

driving license. This would increase their self-confidence and reduce their social exclusion. Most of the relatives evaluated their IT skills at basic level. They are motivated to partici-

pate in case of online courses, but they might have some difficulty to manage the PC with self-confidence. Most of the relatives mentioned texts (lectures), videos, images, quizzes, games, slides and role plays as the most attractive characteristics of an online course.

C. People With Disabilities The majority of PwD have no idea if their relatives attended such courses. Regarding their needs, they would like to have more freedom and independence (ex: a driving licence, a

job, live independently, have a relationship, have children). Therefore parents should learn how to give more freedom to their sons with disabilities. Therefore the main topics of the

course could address Job autonomy, Relationships (especially with the other sex), Rela-tionship with the family members. A course based on interactive multimedia would be suitable and stimulating for everyone (with videos, images, music, cartoons, multiple

choice-based quiz, text). The course should stimulate PwD and help them becoming more self-sufficient, acquiring more self-esteem, self-confidence and awareness regarding one’s

own strong points (both for PwD and family), acquiring competences to overcome fears (PwD: of not being adequate, of new life situations; family: worrying for their sons). Fami-

ly members should be able to recognize the moments when the PwD needs support and help, learn to have more confidence in their skills and stop worrying too much.

Field research—Italy

4

In Spain, the disabled (especially elder people) dependent on informal support in more than 80% of these

cases, in spite of only 11.9% receiving formal support. There is a prevalence of informal care, focused

on “family-based conceptualization of care”, widespread in Spain. Some socio-demographical data show

that another representative feature of informal caregivers is that they do not have any occupation outside

of the care they provide to the disabled. This is particularly true of informal caregivers looking after el-

derly, disabled people: it is estimated that 75% of them do not have a job, as they are mostly housewives,

retirees or unemployed . The most representative informal carer’s profile is: a married women in her mid

-50s, with low academic qualifications and economically inactive. Regarding informal carer’s condi-

tions, it is stressed that the effort involved in taking care of disables for so long can be exhausting, both

physically and mentally. Some researches have pointed out the so called “caregiver’s syndrome”. Re-

garding training material available is aimed at the education of the target group of professional caregiv-

ers. There is plenty of material addressed at those who want to work in the sector, including official

training courses from vocational training sector and informal training options available for those profes-

sionals. National field research shows that it is imperative that the supporting materials and platforms

that will be part of this project suit the needs of these learners, designing not very highly complex e-

learning methods and online platforms, considering informal caregivers’ lack advanced ICT skills and

knowledge.

Experts

Experts agreed that there is no training course available tackling self-determination of people with disa-

bilities (PwD). The only alternative is psychological consultation. They all emphasized the importance of

such training both for the PwD and for the relatives mentioning that the lack of self-determination can

lead to depression and loss of motivation for PwD. Regarding the e-learning tool they underlined that it

should be an easy to use tool including videos and pictures and with continuous IT support from the or-

ganizers.

Relatives

Relatives were not aware of the existence of any training programme for PwD and usually the physio-

therapist advises them on different aspects related to the care of PwD. Relatives were not fully aware of

the meaning of an e-learning programme as they have never been engaged before in such training. They

expressed concerns about the computer skills that they will need in order to attend an e-learning course.

90% of the respondents indicated their willingness to participate in an e-learning programme if such one

existed. The majority of the relatives agreed that self-determination is an important step towards inde-

pendent living underlining its importance in relation to the PwD.

People with Disabilities

People with Disabilities were not aware of any existing e-learning course that would help them in their

everyday life. The only training they have received was through the Cyprus Institute of Neurology and

Genetics and the State Hospital. This training mainly concerns practical issues in their everyday life and

not the aspects of self-determination. Regarding self-determination they expressed that it is the freedom

of the person to determine his/her way of living and the ability to live with dignity under good living

conditions. All respondents expressed a high interest of attending an e-learning course on self-

determination emphasizing that the e-learning tool should be simple and user friendly.

Field research—Spain

Field research—Cyprus

4

In the field research, have been participated 10 parents/relatives, 10 persons with disabilities and 5 ex-

perts. For the moment, most of the parents/relatives do not participate in any training. Most of the re-

spondents do not have any knowledge about these training opportunities. The respondents are motivated

to support the parents/relatives of persons with disabilities. All the respondents known that self-

determination is about the autonomy of a person with special needs. They consider that is really neces-

sary a training program focused on self-determination, which not exist for the moment. The parents con-

sider that they can learn how to improve their relation with their disabled child and how to help him/her

to become independent. Most of the parents consider that their child with special needs cannot decide for

himself/herself. It will be necessary that parents to have some information and meetings with experts

since the child with special needs is born (early intervention). Most of the respondents consider that are

necessary meetings between parents with the same situations in order to learn from each other and to

share their daily life experience and meetings between parents/relatives and persons with disabilities.

Regarding the new courses the parents/relatives mentioned: communication (with other parents/

relatives); stress management; dealing with everyday life situation; etc. The people with disabilities men-

tioned for new courses: how to deal with new situation; how to increase the self-confidence; how to live

alone; how to find a job, etc. The experts mentioned for the courses for parents: verbal and nonverbal

communication; interpersonal skills; methodologies and approaches analysis concerning disabled per-

sons; meet other parents with the same problem; training for counseling; time management; conflict res-

olution; how to solve daily problems; etc. All the respondents prefer the courses in blended learning for-

mat.

In the field research in Bulgaria 12 families of people with disabilities, 12 people with disabilities and 6

experts in the field of social policy, inclusion and disability have been participated.

More than 80% of the total respondents stated that they didn’t know such kind of structured trainings

although they strongly need them in order to provide better care and support of their relatives with disa-

bilities. The respondents generally are highly-motivated to support people with disabilities especially

their relatives. In most cases the participants consider that the disabled person needs someone to support

him/her in daily activities, at education, at workplace as well as in decision-making process. The majori-

ty of them are willing to support other parents of disabled people through sharing their experience and

practices as well as to give them hope and courage.

All respondents preferred blended learning (a combination between face to face and e-learning interac-

tion) as the most flexible and user-oriented approach. As potential benefits of such potential training

course they are expecting to be complement to other services and activities on health care for young chil-

dren, capacity-building and helping parents to prevent child abandonment. A gradual convergence of the

participants build confidence between them, ready for interaction have been observed. Some of the chil-

dren seeking contact with other children and volunteers. Many parents said they had received valuable

examples and guidelines for education of children at home. Apart of e-SUNET activities the respondents

are seeking for opportunities for establishment of sustainable peer support networks and to raise aware-

ness among different members of the society toward disability and inclusion.

Field research—Romania

Field research—Bulgaria

5

For further information please visit:

Website: www.esunet.eu

Facebook: www.facebook.com/action.gr

2nd transnational meeting—Florence, Italy, 3-4 July 2014

The second meeting of the E-SUNET project has been organized in Florence, Italy

on the 3rd and 4th of July 2014. In this meeting, the project partners presented their work progress during the first 6 months of the project and planned the next

steps for the upcoming 6 months. Partners presented the findings of the national reports regarding the desk research

as well as some preliminary results from the field research. An extensive discus-sion took place regarding the common findings and how the training material can

be built upon these findings. Partners also discussed the content of the training material identifying the main

modules and topics that the training material will cover. The modules will be A) In-dividual Autonomy B) Self-Regulation C) Psychological Empowerment and D) Self-

Realization. The topics will include among others the capacity to make choices, de-cision making, conflict management, self esteem, positive thinking, capacity to use

assistive technology, coping with prejudice, etc. Additionally, partners also discussed important issues related to dissemination and

evaluation of the project activities.

3rd transnational meeting—Paris,

France, 4-5 Decem-ber 2014

The third project meeting will be organized in Paris,

France and the partners will analyze the first version of the training material in order to schedule the next activ-

ities of the project. Based on these results the next pro-ject phase will be implemented which is the develop-

ment of the e-learning platform.