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5th International SOFT Assembly
NETWORKS AS SOURCES OF SOCIAL CAPITAL:
SOCIAL INCLUSION OF CHILDREN AND YOUNG PEOPLE WITH
DISABILITIES
2-3 octombrie 2006 în Ungvar Ucraina
Generously supported by Skanfonds, The Netherlands, the International
SOFT Federation (ISF) in co-operation with the Medical and Social
Rehabilitation Centre Way of Life
(MSRC), organises an
international conference on the creation of social capital to further the
social inclusion of children and young people with disabilities. The focus is
on Eastern Europe in general and on Ukraine in particular. This conference
takes place within the framework of the 5th international assembly
of ISF, the latter being an umbrella NGO of Dutch, Finnish, Hungarian, Romanian
and Ukrainian NGOs working in behalf of disabled children and youngsters in
Central Eastern and Eastern Europe. The previous international SOFT assemblies
have been held in Hungary and in Romania, encompassing conferences, workshops,
info markets and arts manifestations of disabled children and youngsters.
Aims
The 5th
international SOFT assembly (ISA) aims at the transfer of knowledge and
information in view of the furthering of the growth of social capital in the
region covered by ISF activities, particularly in Ukraine, which is considered
as a precondition of effective combating of social exclusion of the disabled in
general, and of children in particular. Within this framework special attention
will be paid to innovative community-based care strategies like the
establishment of day care centres, good practices of co-operation between NGOs,
local enterprises and governments, training parents of disabled children and
youngsters as well as the development and implementation of programs to answer
the educational needs of professionals and volunteers working with and/or in behalf
of disabled children and their parents. The 5th ISA also aims to
promote the social inclusion of disabled people by informing policy makers
about the special needs in the concerned sector of society and by attracting
mass media attention to societys responsibilities with regard to the disabled.
Backgrounds
In
Eastern Europe, particularly in Ukraine, life is very hard for people with
disabilities, since societys attitude has not changed much since Soviet times,
when the disabled were looked upon as inferior and defective. Disabled people
are often subject to stigmatization, excluded from school or the workplace, and
often end up depending on others in the family and community for physical,
social and economic support.
Due to
poverty and to the lack of social capital, combating social exclusion is
extremely difficult. In Ukraine, the majority of the population perceive
themselves as poor, and in fact has relatively low incomes. At the same time,
the States expenditures on public health, education and other social welfare
are well below European levels.
The
growth of social capital is a precondition to effective combating of social
exclusion. It consists of networks together with shared norms, values and
understanding which facilitate co-operation within or among groups. In OECD
surveys general trust in society, civic participation and participation in
adult education are considered as indicators of social capital. The outcomes
show a relatively high level of it in Nordic countries, whereas the post-communist
Czech Republic, Hungary and Poland show a significant shortage of social
capital. The latter is to be ascribed to a relatively small average radius of
trust of co-operative groups. Such societies are lacking in social trust
because in the totalitarian era the rulers deliberately targeted and sought to
undermine civil society. In the former Soviet republic Ukraine the totalitarian
area lasted much longer than in the so-called Soviet satellites. It is,
therefore, understandable that the shortage of social capital in Ukraine is
even more significant than in its Western neighbours Poland and Hungary.
The International SOFT Federation has accumulated
considerable experience in the building of social capital. It is rooted in
longstanding Dutch-Hungarian co-operation. Motivated by their alarming
experiences during a visit to a residential home for multiple handicapped
children in east Hungary, in 1991 Dutch professionals working in the field of
disabled children established the SOFT Tulip Foundation. Its aim was the
improvement of the health care and of the living conditions of handicapped
children in Hungary, particularly in its relatively underdeveloped and poor
eastern part that borders on Ukraine and Romania. The SOFT Tulip Foundation
worked together with its sister organisation, the Hungarian SOFT Foundation.
The two SOFT foundations co-operated in the realisation of
several projects, among which a Dutch-Hungarian-Romanian one that has been
implemented in 2000-2001 with the financial support of the European Union,
involving NGOs in both countries. The measure in which this project enhanced
the radius of trust is indicated by the decision to continue the co-operation
after its completion. In view of this, a Declaration of Intent has been issued
and subsequently signed by 28 NGOs from Hungary, the Netherlands, Romania and
Ukraine. The declaration envisaged the establishment of a federation of NGOs
working for or with disabled children and young adults. In 2002, an
International SOFT Federation (ISF) has been formally established. It works under Hungarian law and has an
international board moreover a secretariat in Debrecen, Hungary, near by the
Ukrainian border.
The Medical and Social Rehabilitation Centre Way of Life has been established in
1999 and since then it became the focus of activities aiming at the improvement
of the health care, well being and social integration of children and
youngsters in the Zakarpatska oblast. Its staff of 26 persons encompasses
medical specialists, therapists, teachers and nurses. MSRC is a member
organisation of ISF and is dedicated as well to the education of professionals
and volunteers working with or in behalf of its target groups. By furthering
the self-organisation of parents, for instance, it also contributes to the
strengthening of civil society. MSCR is financially supported by the local
government and it has obtained grants from, among others, the European Union
within the framework of its European Institution Building Partnership
Programme.
Conference venue
Zakarpattya (Transcarpathia) is one of the regions in
Ukraine with unique natural and recreational potential. Its climate is mild;
the mountains cover 80% of the territory. The region is famous by its mineral
springs, ancient historical monuments, folk traditions, cultural heritage and
warm hospitality of the people. It is known as Ukrainian Switzerland.
Uzhgorod, its administrative centre, is an ancient European city. It has been
founded in 893 and has 118 000 inhabitants of more than 70 ethnic groups (Ukrainians,
Russians, Hungarians, Slovaks, Roma, Jews, Germans, Poles, Armenians and
others).
The conference takes place in the City Hall and in the
hotels Uzhgorod and Zakarpattya. The participants will be accommodated in hotel
Uzhgorod.
Conference language
The conference language is Ukrainian. Translation into
English, Hungarian and Romanian is provided.
Preliminary programme
(The final programme is available at
the registration desk)
Sunday,
1 October
12.00 16.30 Arrival
16.30 18.00 Registration
18.00 Reception
Celebration
of the 15th anniversary of ISF multirateral co-operation
Monday,
2 October
09.00 -10.00 Welcome
Dr. J. Katus, President of ISF
Opening
Sergei Ratushnyak, Mayor of
Uzhgorod
Plenary session
Social inclusion of children and youth with special needs
Chair: Dr. Oleg Kyrylenko, Director of
MSCR
Invited representatives of the
Parents of Children with Special Needs, Uzhgorod
Zakarpatska Oblast State Administration, Uzhgorod
Ministry of Health, Kiev
Ministry of Labour and Social Policy, Kiev
10.00 -10.30 Coffee break
10.30
-11.45 Chair: Dr. Irina Roshkovich, MSCR/ISF
board
Dr. Oleg Kyrylenko, Director of
MSRC, Social inclusion of children and
young people with disabilities in everyday life
Dr. J. Katus, Networks as sources of social capital
Discussion
12.15 - 13.45 Lunch
14.15 - 15.45 Parallel sections
(Brief topical introductions by experts followed
by presentations of best practices in the countries involved and discussions).
1. Medical aspects of rehabilitation of
people with special needs
Chair:
Dr. Zsuzsa Vekerdy (H)
a) General aspects of spasticity
treatment (medications, physiotherapy and neurosurgical interventions) for
children with spastic cerebral palsy by: Zsuzsanna Vekerdy MD, PhD (National
Institute for Medical Rehabilitation, Dep Ped Rehab, Budapest)
b) Ortheses and orthopedic surgicalinterventions by Robert Mezo MD
(Délpest Hospital, Motor Rehabilitation Unit, Budapest)
c) Main elements of conductive education by Erika Medveczky MD, PhD
(International Pethő Institution, Budapest)
2. Problems of employment and housing
for people with special needs
Chair: John de
Rijk (NL)
3. Integration of children and
youngsters with special needs into the system of public education
Chair:
Dr. Ilona Darvas (Ro)
4. Sustainable development of NGOs
working in behalf of people with special needs
Chair:
Yakiv Rogalin (UA)
15.45 16.15 Tea
break
16.15 17.30 Parallel sections (continuation)
18.00 Dinner
Social evening
Tuesday,
3 October
09.00 10.30 Plenary session
Intersectoral
co-operation as a way to successful inclusion of children and youth with disabilities
Chair:
Dr. Zsuzsa Vekerdy, ISF vice-president
Invited EASPD*
speaker, European co-operation in
furthering social inclusion
Betty Dézsi, ISF regional co-ordinator, Educational needs in the region.
Presentation of the outcomes of explorative surveys.
Willem de Gooyer, chairman of the Steering
Committee of ISF Educational Centre, Development
of Learning Networks
Discussion
10.30 - 11.00 Coffee
break
11.00 - 12.30 Parallel workshops
1. Parents to parents
Chair: David van de Velde (NL)
2. Medical professions
Chair:
Dr. Oleg Kyrylenko (UA)
a) Practical training on two or three
children with spastic cerebral palsy (assessment and offer of an individual
therapy program)
3. Social work and education
Chair:
Betti Dézsi (H)
4. NGO professionals and volunteers
Chair:
Gaia Werner (USA)
12.30 - 13.30 Lunch
14.00 - 15.30 Plenary session
Chair: Dr. J. Katus, ISF president
Reports from the sections and workshops
Conclusions concerning future co-operation
Closing
Printable version
Preliminary programme
Registration form
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