The Knowledge Exchange Seminar Series (KESS) is the first of its kind in the United Kingdom, formally partnering a legislative arm of government – the Northern Ireland Assembly – with academia. Aiming to encourage debate and improve understanding, KESS provides a forum to present and disseminate research findings in a straightforward format, making those findings easily accessible to decision-makers. Seminars are free and to register please email mailto:raise@niassembly.gov.uk

Agenda

1.30pm – Welcome

1.35pm – Assembly Committee Chair – Opening Remarks

1.45pm – Prof Karola Dillenburger, Dr Lyn McKerr and Dr Julie-Ann Jordan (QUB) – Preventing poverty and social exclusion for those affected by autism and their families

Autism rates in Northern Ireland are rising by 0.2% annually and now stand at 2.3% in the school population. The cost to society for autism is £34billion in the UK, more than cancer, strokes, and heart disease combined; 36% of this cost is for adult services. The NI government has invested heavily in autism diagnosis and autism services.  However, services are still not meeting the needs of those directly affected by autism and their families; and there is a feeling that the money is not always spent wisely. A major study was funded by OFMDFM (2012-2016) to explore poverty and social exclusion of children and adults affected by autism and their families, and to make policy and practice recommendations. In this presentation we will present data from all 4 phases of this study: (1) A thorough literature review exposed gaps in service provision; (2) An adult population survey (NILTS autism module) identified levels of autism awareness and attitudes; (3) A comprehensive secondary data analysis of existing data banks exposed levels of poverty and deprivation; and, (4) Detailed qualitative data analysis looked at staff training and gave voice to those on the autism spectrum and their families. Data from the research will be reported and recommendations outlined, including making cost-savings.

2.05pm – Prof Mickey Keenan (Ulster) – Evidence and Policy: How to help families of children diagnosed with autism in Northern Ireland

Currently in the USA, 44 States have introduced legislation to ensure that parents have access to Applied Behaviour Analysis (ABA) for the treatment of autism; hundreds of major companies have also made ABA available under their health insurance policies for workers. The supporting evidence to introduce this legislation will be outlined as well as the training standards for professionals trained in ABA. This information will provide a basis for contrasting how ABA is viewed in Northern Ireland and in the UK in general. I will show how misinformation by professionals with no training in ABA has resulted in misinformation influencing politicians charged with developing policy for helping families of children diagnosed with autism (http://theconversation.com/science-that-could-improve-the-lives-of-people-with-autism-is-being-ignored-39951).

2.25pm – Discussion

2.45pm – Comfort Break

2.55pm – Dr Ilona Roth (OU) –  Autism: a cross-cultural perspective on service provision and capacity building

Prevalence estimates for autism in the western world have risen substantially over recent years, most probably reflecting a combination of increasing public awareness, wider inclusion criteria and improved diagnostic services. Many gaps and inequalities of services and support remain, especially in relation to adults and to deprived and ethnic minority communities. There is growing recognition of these needs and of the political, practical and educational initiatives necessary to address them.  However, autism is now widely recognised to be a global problem. Many difficulties faced by individuals with autism and their families in Lower and Middle Income Countries (LAMIC) resemble those in the western world, but have strikingly greater scale and impact in these settings. Moreover, a western approach to resolving gaps in diagnosis, intervention and other forms of service provision often does not translate well to LAMIC situations and cultures.   A recent collaboration between academics at The Open University and the University of Addis Ababa sheds light on the situation in Ethiopia, where poor awareness of autism, together with high levels of stigma and extremely limited service provision serve as a stark example of the challenges to be addressed worldwide. This presentation will discuss findings from this research, and outline some of the initiatives undertaken as first steps in seeking to address these problems.

3.15pm – Prof Jonathan Rix (OU) – Global Challenges for Inclusive and Special Education – Exploring solutions within a Community of Provision

This seminar builds upon a study undertaken for the National Council for Special Education in the Republic of Ireland, examining the continuum of special education globally (Rix, Sheehy, Fletcher-Campbell, Crisp & Harper, 2013). This involved a systematic literature review of the multitude of continua associated with special education, followed by a review of policy in 50 countries, and then a further detailed examination of 11 administrations. Although this review did not include Northern Ireland, the seminar will present findings and a framework of analysis which will have direct relevance to the experiences of Northern Ireland’s policy-makers and practitioners. The Community of Provision (CoPro) was developed to explore the challenges of the systems in the study. It is defined by the settings and services that work together to provide a service within a locality. The nature of the CoPro will vary nationally and locally and be dependent upon the individuals concerned. It is intended to encapsulate complex societal support systems, assisting the thinking of decision-makers and researchers and underlining the need to focus their efforts across all arenas of practice. (Rix, J., Sheehy, K., Fletcher-Campbell, F., Crisp, M. & Harper, A. (2013) Continuum of Education Provision for Children with Special Educational Needs: Review of International Policies and Practices. (Volumes 1&2.) National Council for Special Education, Trim.)

3.35pm – Discussion

4.05pm – RaISe – Closing Remarks

4.10pm – Networking and Refreshments