1. Presentation By: THE PARTICIPATION OF CHILDREN AND YOUNG PEOPLE Europe in Action Conference 2014 Patricia McNeilly and Teresa Stewart

2. Hello! My name is Patricia McNeilly I am a teacher at Queen’s University My job

3. Hello! My job My name is Teresa Stewart I am a Project Worker for Barnardo’s DCYPPP

4. Participation: the rights of children and young people

5. To explore the meaning, experience and outcomes of the participation of disabled children, young people and their parents in health and social care decisions and in decisions about service provision and policy from the perspectives of key stakeholders. AIM OF THE RESEARCH

6. The involvement of young people from the DCYPPP in the research

7. Methods

8. Creative methods of research with children and young people

9. Taking the lead For most children and young people decision making grounded in a family centred model where adults took the lead in decision making. Many children and young people recounted that professionals talked to them as well as their parent.

11. Not knowing Children and young people often did not know why professionals came to see them. Some parents did prepare their child for appointments and visits and advocate for their son or daughter: When I first took Suzanne there [to the hospital], she would sit with her head down and [the doctor] turned round to me an he goes ‘Can she understand that, can she talk?’ And I said ‘Yes!’. And I said to Suzanne ‘Say hello to the doctor’. Because the speech is actually very, very good. In fact too good sometimes! P17: Parent of a 15 year old.

13. However when children and young people were drawn into decision making processes, they were more likely to interact with professionals, make their views heard and expressed a desire to have more say.

14.  Professionals need to be more aware of the need to involve disabled children as they mature into young adults. Implications for policy, practice and services  Professionals and parents need to avoid a culture of acceptance that adults make all the decisions for young people, particularly when they experience cognitive and/or communication impairments.

15. Implications for policy, practice and services  The provision of information for children and young people needs urgent attention.  This research provides evidence for the value of participation groups such as the DCYPPP not only where services and policy are concerned but also for building confidence and self- determination in children and young people.

16. With kind permission of Geobra Brandstätter GmbH & Co. K G, Germany. PLAYMOBIL is a registered trademark of Geobra Brandstätter GmbH & Co. K G, for which also the displayed PLAYMOBIL toy figures are protected. The Picture Communication Symbols ©1981–2011 by Mayer-Johnson LLC. All Rights Reserved Worldwide. Used with permission. Boardmaker® is a trademark of Mayer-Johnson LLC Cameron, L and Murphy, J (2002) Enabling young people with a learning disability to make choices at the time of transition. British Journal of Learning Disabilities, 30, 105-112.