CONTENT
SUPPORT OF SOCIAL PARTICIPATION OF PEOPLE WITH DISABILITIES
PhDr. Lucie Procházková, Ph.D. 5c. Lenka Kratochvílová Masaryk University, Faculty of Education, Srno (Czech Republic)
aims and activities of EUCERD (European Union Committee of Experts on Rare Diseases
x research - conclusion from interviews with young people with Williams Syndrome
social services supporting the social participation of people with disabilities
„European Williams Syndrome Conference {EVVSQ" Budapest, 21-23th November 2014
AIMS AND ACTIVITIES OF EUCERD
x to facilitate access to information on specific social services for RD patients and their families;
x to define guiding principles for Member States and stakeholders on why and how to develop training sessions for social services providers;
« to promote the integration of RD into social policies and services
to implement the plans and strategies for rare diseases at national and international level
and...
AIMS AND ACTIVITIES^ EUCERD
x to identify and to map the existing specialised social services and to identify good practices
x Specialised Social Services identified at EU level:
+ Therapeutic Recreation Programmes (TRP) ■i Respite Care Services (RCS)
Adapted Housing (AH)
Resource Centres (RC)
SPECIALISED SOCIAL SERVICES IN EUROPE
■9-
at
j3L
Therapeutic Recreation Programmes (TRP) ■ blue
Respite Care Services (RCS) - green
Adapted Housing {AH) -red
Resource Centres (RC) -yellow
www.eucerd.eu
REPORTS ON THE STATE OF THE ART - 2014
x Reports on the state of the art of rare disease activities in Europe - 2014 edition, 5 parts
x Individual reports on the activities in each country
online available: * *
www.eucerd.eu ' ~£ ^
---------F=H» *
RESEARCH ON PEOPLE WITH WS
AREAS OF INTEREST
x Main aim: to analyse the extent of participation of people with WS in society
Family and relationships - own family, independent living
x Focus on adults with WS x Interviews with people with WS Modified to intellectual disability
Productive activities - education, job, volunteering
Social activities - free time, hobbies, leisure time activities, dreams
RESPONDENTS
x Czech Republic - 3 respondents (M21, W22, M23)
Slovak Republic - 3 respondents (W34, M23, W30)
m Germany - 3 respondents (M30, W20, M43)
FAMILY AND RELATIONSHIPS
+ Good relationships with close and distant family + Two of them live alone (sheltered living) ■i Three of them have a partner
Most of them want a partner, perhaps to get
married
None wants a child
FAMILY AND RELATION!
* No, definitely not. I wouidn't manage it, because I need to be taken care of, no I wouidn't manage it. (SK, W 34)
x / can't live alone. Because I bought an apartment with my mum and I live with her. (SK, M 23)
FAMILY AND RELATIONSHIPS
> Maybe we would have the same kids as we are. {CZ, M 21)
Because he has the WS, so my mum said that we can't. It.could be disabled and I wouidn't manage to take care of it at all. (CZ, W 22)
x / can t have a boyfriend, nor relationships, nor children, unfortunately. (SK, W 30)
Z
FAMILY AND RELATIONSHIPS
Sometimes I even miss it when I see somebody holding hands with a boyfriend but I say what a pity I can have just friends. But friend is better than boyfriend. (SK, W 30)
Because I would like to have a friend or girlfriend and go out for cola with her. Then for example concerts and so, listening to music. (SK, M 23)
FAMILY AND RELATIONSHIPS-
x My father died three years ago. He was 51. He was severely ill and he had a stroke. (G, M 30)
It was a shock. I didn't even know that she wouldn't have hair. So I started to cry when they told me.
Later. They knew it in the family that she will loose hair but they didn t want to tell me because I would freak out. (CZ, W 22)
PRODUCTIVE ACTIVITIES
PRODUCTIVE ACTIVITIES
+ Three of them have a job (sheltered labour market},
one has a part-time job + Three of them still visit the school -:- Two of them have volunteered
x / would like to have a job. My mum asked a friend if there is some sheltered work, where I could work but there are not any in my area. {SK, M 23)
No, I would rather be at home. I am used to be at home and I wouldnt tike if I had to go somewhere far away. (SK, W 34)
PRODUCTIVE ACTIVITIES
SOCIAL ACTIVITIES
x Right now I visit one woman, I am a volunteer.
x / go to the senior centre. She can t move her body, just her head. So we talk and I ride the wheelchair and it is great. (CZ, W 22)
+ Activities on internet + Going out with friends + Music + Travelling -4 Sport
SOCIAL ACTIVITIES
SOCIAL ACTIVITIES
x / rather sit at the computer and write to my friends and play games, am on Facebook, Skype, everywhere. (SK, W 34)
x / visit art school and I play drums there and I 'm good at it. (SK, M 23)
A lot. I am away. Mondays I go to an adult club, which is Monday from 16:45 till 19:30. Meanwhile I leave earlier from the club because on Mondays evening I sing in a choir. That s why I have to go earlier. Tuesdays I have skittle (bowling) every four weeks. Wednesdays I am either at home or sometimes I also go out. Thursdays I am out with the adult club. We go on trips or we go to the pub or we go bowling or play miniature golf or for a walk to the city, shopping and so on. (G, M 34)
SOCIAL ACTIVITIES
x / like to go to the playground, outside, cycling. Visiting friends and so on.
x Then swimming and i play the piano. (G, W 20)
CONCLUSION AND RECOMMENDATIONS
x Music, reading, travelling. (G, M 43)
Situation (not only) in the Czech Republic
(EPUBLIC
SITUATIÍ
Czech Association for Rare Diseases - 2002 x The Act of Social Services Nr. 108/2006
+ Social counselling
+ Services of social prevention
+ Services of social care x Non-profit-organisations essential
i Občanské sdružení Wilfík
THÉRt
)ULD BE...
x Support of people with disabilities
gaining of independence + education - preparing for adult life - There is life
after school... but it doesn't begin after school.
job - transition programme
+ living, leisure time, partnership, money...
+ social skills and competencies (plan-decide-organise-find-support)
social services - obtainable, available
THERE IS..,    THERE SHOULD BE...
Support of the parents and families -.- information - rights, possibilities (school, support...) + letting to become independent * „everlasting child"
social services - obtainable, available n Awareness of the society
Jet them participate on everyday life"
THANK YOU FOR YOUR ATTENTION!
PhDr. Lucie Procházkové, Ph.D.
prochazkova.lucle®ped.m uni.cz Be. Lenka Kratochvílova kr3tochvilova.le11@seznam.cz
m
PEDAGOGICKÁ FAKULTA Masarykovy univerzity
VIVí