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Including the views of diabled children and young people in
decision making
Contents and introduction
CONTENTS
ACKNOWLEDGEMENTS
RECOMMENDATIONS
INTRODUCTION
1 What are the views and experiences of young disabled people
and their families in Bolton?
2 What are the current structures of decision-making in the
Bolton area?
3 What factors limit the ability of young disabled people to
influence the decision-making process?
4 What are the structures and skills required to include young
disabled people in the decision-making process?
5 What are the advocacy needs of young disabled people and
how might an advocacy service help?
6 What are the implications for organisations can U if young
disabled people are to be more involved in the decision-making
process?
APPENDICES
1.How the research was carried out
2.Definition of terms
3. Decision-making bodies in the Bolton area
4.questionnaire replies
5.Definitions advocacy
6.Advocacy services in the Bolton area
7. Communication systems
BIBLIOGRAPHY
INTRODUCTION
Although this report focuses on the needs of young disabled
people in the Bolton area, the issues raised have a wider
relevance and will be of interest to local authorities, health
authorities, and voluntary bodies nationally.
WHY THE RESEARCH WAS COMMISSIONED
Bolton Disability Research Project was set up to consider ways to
develop local advocacy and consultation services. This was in
response to a review of services for young disabled people and
their families that acknowledged the need to involve young
disabled people in the decision-making processes that affect their
lives.
UNITED NATIONS CONVENTION ON THE RIGHTS OF THE CHILD
Organisations in Bolton are in the process of adopting the UN
Convention on the Rights of the Child and are developing a
"Children and Young People Strategy". This is in the form of a
local summary of the Convention based on the "3 Ps" framework
of "participation", "provision" and "protection" of children. The
work undertaken in this research will help to highlight the needs
of young disabled people.
THE PROJECT MANAGEMENT GROUP
The membership of the Project Management Group reflects the
strong commitment of statutory and voluntary organisations in
the area to working in partnership with each other; it consists of
John Tempest (Social Services), Cameron Chisholm (Education
and Arts), Elizabeth Clayton (Community Healthcare Bolton NHS
Trust), Kate Harper (Save the Children), Jenni Gomes (NCH -
Action for Children, North West), Lorraine Gradwell (Greater
Manchester Coalition of Disabled People), Bridget Pettitt (Save
the Children) and Tracy Yankowska (Greater Manchester Coalition
of Disabled People).
THE RESEARCH BRIEF
The Project Management Group believe that the views of young
disabled people are both valid and valuable and are keen to
identify how to provide good consultation and advocacy services
in the Bolton area. They secured funding from Social Services and
Save the Children to commission research from Sue Whittles
Associates to answer the following questions:
· What are the skills and knowledge required to engage young
disabled people in discussions about their views?
· What are the advocacy needs of young disabled people?
· What are the views of parents of young disabled people?
· What are the current structures of decision-making in Bolton?
· What is the feasibility of involving young disabled people in the
process of decision-making?
· What are the implications for organisations if young disabled
people are to be more involved in decision-making?
ABOUT THE RESEARCH
Because the report had to be completed within a very tight
timescale of six months, it was only possible to include ten young
disabled people and their families in the research.
An attempt was made to ensure a broad range of views by
identifying people who have a range of physical disabilities and
learning difficulties, and to take into account the needs of people
who do not communicate by speech. Two individuals were from
minority ethnic backgrounds, and three were in placements away
from home.
It was decided to interview young people between the ages of
13 and 19 because they would be going through the transition
process of leaving school and accessing adult services. Decisions
taken at this stage will have an impact on the next few years of
their lives.
Names of the young disabled people interviewed have been
changed to protect their identity.
Details of how the research was carried out can be found in
Appendix 1.
TERMINOLOGY
The use of language is recognised as very important in the
disabled people's movement, and there is resistance to being
labelled by their disability. For the purposes of this research we
have used the definition of disability that is defined in the Social
Model of Disability. An explanation of the Social Model of Disability
and definitions of other terms can be found in Appendix 2.
Owner: Sue Whittles