(Carl Davidson, NICCY Youth Panel, introduced the Commissioner)
Thank you Carl, on behalf of myself and all the staff at NICCY, I would like to welcome you all here today for the launch of the Northern Ireland Based Review of Asperger Syndrome (AS) which was commissioned by NICCY and carried out between January and October 2006 by the Autism Team at the University of Birmingham.
I would like to extend a particular welcome to the children and young people and parents who took part in the Review and thank them for giving so freely of their time to tell us about their experiences and views on a range of issues. I would also like to welcome and thank those members of the NICCY Youth Panel who participated in the work of the Steering Group set up to advise the researchers at various stages of the Review.
Since our Office opened in 2004, the needs of children and young people with autistic spectrum disorder have been brought to NICCY’s attention from a number of different sources. They were issues, for example, that were highlighted within initial research on children’s rights carried out by the Queen’s University of Belfast on NICCY’s behalf and in our subsequent SHOUT consultation. They have also been the subject of a number of referrals to the Legal and Complaints Department at NICCY, the majority relating to inadequate provision of services or treatment for individual children or young people with an ASD.
The experiences of this particular group of children and young people caused NICCY concern in relation to the inadequate protection and fulfilment of these individuals’ rights. That their needs were not being suitably met was regarded as an area requiring further investigation. This was especially relevant given that the issues being raised fall directly within a few of the different priority areas in NICCY’s 2005-2008 Corporate Plan; most notably special educational needs, children and young people with disabilities and children’s rights. Indeed, under the guiding principles of the United Nations Convention on the Rights of the Child, upon which all NICCY’s work is based, children and young people with AS have the right to have their say in issues affecting them, a right to education, training and the highest attainable standard of healthcare services, (Articles 23 & 24); and education that is geared toward the development to the fullest potential of the child’s personality, talents and mental and physical abilities (Article 29).
NICCY’s main role is to protect the rights and best interests of children and young people and take action where it appears that provision of law, practice and services is inadequate. Therefore, in order to investigate the situation further as regards the provision of services for young people with AS, and to be able to inform future policy and practice development in this area, we decided it was necessary to commission a review that would identify two key things.
Firstly, what are the needs of young people with AS who are aged between 10 and 18 years and living in Northern Ireland; and secondly, what services are currently provided for these young people and their families and if necessary, how can they be improved. In addition to highlighting gaps in services, we also felt it was important to identify examples of good practice in service provision.
As well as reviewing current research literature and relevant policy, legislation and guidance within Northern Ireland, a key part of addressing the review questions was to ask children and young people with AS about their views, including their experiences of existing services and what could be done to make things better. The Review Team also obtained the views of their parents/carers and relevant professionals such as head teachers, social workers and key service providers.
While it is important to acknowledge recent developments and improvements in relation to AS services within the statutory sector, it was evident from the findings that there is a lack of co-ordination of services between health, social services and education. There are ongoing difficulties with the diagnostic process; there is not enough support or information for young people and their families, waiting times are too long, and policy and practice is not being consistently applied across Northern Ireland. Children and young people also reported there is ignorance amongst their peers about their condition and frequent experiences of being bullied was one of the most significant issues raised.
Ultimately, services need to be comprehensive and adaptable enough to meet the specific needs of allindividuals with AS at all stages of their lives. A copy of the report is available for each of you to read and take away. I urge those in the position to do so, to act upon the series of recommendations made within the Review and ensure that subsequent action is taken to begin effectively addressing them.
Again, I would like to thank you all very much for taking the time to come here today. Now to present the findings of the Review in more detail, I am very pleased to be able to welcome Dr Glenys Jones from the Autism Team at the University of Birmingham.