Educational Provision and Support for Persons with Autistic Spectrum Disorders: the Report of the Task Force on Autism October 2001 FOREWORD This report on the Educational Provision and Support for Persons with Autistic Spectrum Disorders could not have been produced without the assistance of many people. Firstly, I would like to acknowledge the commitment, dedication and expertise of the Members of the Task Force itself. The Task Force was composed of a combination of parents, education and health professionals, advocates and researchers. The Final Report represents the outcome of the synergy which arose from the debates and insights provided from these five perpectives. In terms of debate, drafting and editing the Report is truly a team effort. However, in particular, I would like to acknowledge the dedication of the Secretary to the Task Force, Mr. Micheál Ó Flannagáin, whose researches, perseverence, and meticulous attention to detail sustained the work of the Task Force throughout the development and finalisation of the Report. The support given to the members of the Task Force by their families and employers is also acknowledged with gratitude. Underlying this Report, providing an essential foundation for its analysis, were the submissions which were received from a wide range of individuals and groups. The Task Force is deeply grateful to all who took the time and trouble to make these submissions and also, in many cases, to provide very valuable supporting documentation. The Task Force appreciates very much the courtesy and hospitality of people in the schools and service providers in the Republic, in Northern Ireland and in Great Britain visited by members of the Task Force and who gave so generously of their time. The Task Force benefitted greatly from the insights of a number of experts from Ireland and from other jurisdictions. In particular, thanks are due to Dr. Philip Strain, Ms. Martha Ziegler and Ms. Patricia Guard of the United States and members of the Northern Ireland Task Force on Autism, chaired by Mr. Martin Clarke. The Task Force also gratefully acknowledges the advice so generously given on constitutional and legislative issues by Professor Gerard Quinn and Ms Shivaun Quinliven of the Disability Law and Policy Research Unit, Faculty of Law at the National University of Ireland, Galway. The Task Force was very much supported in its work by the quiet efficiency of Mr Martin Shiel of the Department of Education and Science who always facilitated but was never obtrusive. Invaluable support was also provided by Ms Ann Colgan who did the summary analysis of submissions with insight and empathy. Essential secretarial support was given by Ms Ailish Doyle and Ms Alice Byrne of the Education Department at University College Dublin with their usual calm and cheerful organisation and support. The wisdom and initiative of the Minister for Education and Science, Dr. Michael Woods, T.D. in establishing the Task Force on Autism has allowed the important issue of the education and support for persons with autistic spectrum disorders to be comprehensively explored for the first time in Ireland. His forbearance and facilitation of the extension of the original deadline, as the Task Force grappled with this complex and sensitive task, is also gratefully acknowledged. Finally, and above all, the value, contribution and needs of Irish citizens with autistic spectrum disorders is acknowledged and affirmed in this Report. It is my hope, and that of the Task Force, that this Report will provide a framework for the future development of a comprehensive and appropriate structure for education and support for this hitherto marginalised and misunderstood population. The completion of this Report represents not an end but a beginning. Professor Sheelagh Drudy CHAIRPERSON, TASK FORCE ON AUTISM October 2001 CONTENTS Executive Summary 1 Introduction 2 Autistic Spectrum Disorders 3 Parents as Partners 4 Identification, Referral and Assessment 5 General Issues 6 Educational Approaches 7 Early Education 8 Primary Education 9 Second-Level Education 10 Third-Level and Continuing Education 11 Clinical and Support Services 12 Education and training for teachers, other professionals and support staff 13 Implementation Structures 14 Education for children with an ASD - constitutional and legislative issues 15 Policy 16 Costs and Benefits 17 Recommendations Appendices EDUCATIONAL PROVISION AND SUPPORT FOR PERSONS WITH AUTISTIC SPECTRUM DISORDERS THE REPORT OF THE TASK FORCE ON AUTISM Executive Summary 1. Dr. Michael Woods, Minister for Education and Science, launched the Task Force on Autism on 16th October 2000. The terms of reference of the Task Force were as follows: · Having regard to the distinct needs of certain children with autism; · Having regard to the State’s commitment to ensuring that the special educational needs of children with autism are properly addressed within the educational system; · Having regard to the range of special educational provision and support services already made available to children with autism in special schools, special classes attached to ordinary schools and in integrated settings; · Having regard to the desirability of ensuring that the services made available to children with autism reflect best international practice. The Task Force will: · Review the current range of educational provision and the support services available to children with autism in Ireland; · Assess the adequacy of current educational provision and support services, having regard to the range of special needs which can arise and the need to address such needs either in integrated settings or by way of special dedicated provision; · Make such recommendations as are considered appropriate for the development or adjustment of existing policy approaches, educational provision and support services, in order to ensure the delivery of an appropriate, effective and efficient educational service to children with autism; · Make such further recommendations, as the Task Force considers appropriate to the above matters. 2. The Task Force held twenty meetings, some extending over two days, analysed documentation from 108 submissions, reviewed a wide collection of literature relating to autism spectrum disorder (ASD) and autism provision, and included visits to a number of schools and centres providing for children with ASDs in the Republic, in Northern Ireland and in England. A research paper, commissioned by the United States Department of Education, a meeting with leading American experts in autism and separately with the Northern Ireland Task Group on Autism assisted the work of the Task Force. Individual members of the Task Force also attended presentations by recognised practitioners in the field of autism in Dublin and Belfast and with representatatives of the Department of Health and Children and the legal services. 3. This report is the outcome of the work of the Task Force and in its conclusion makes wide-ranging recommendations for the development of services for children with ASDs in Ireland. In all its work, it was evident to the Task Force that the capacity of current provision and resources has been, and is critically unable to meet the needs of all children with ASDs in Ireland, and that extensive strategic and practical changes are necessary to secure a range of provision, to train relevant professionals and to establish appropriate arrangements to guarantee the effective delivery of services to children and students with ASDs, and their parents, throughout Ireland. 4. Underpinning the findings of the Task Group is the urgent need for the Department of Education and Science to create structural provision for: · Inter-departmental co-operation · Regional ASD Educational Planning and Advisory Service · Identification, Diagnosis and Recording · Assessment of Educational Needs · Statutory Statement of Educational Needs · Appeals System · Review of Progress · Range of Provision: Early and Pre-school, First Level, Second Level, Third Level and Continuing · Curriculum Development · Inspection and Evaluation · Advisory and Training Support Services · Administration and funding. 5. The Task Force findings make it imperative that a co-ordinated approach is implemented by statutory bodies, most importantly, the Department of Education and Science and the Department of Health and Children. Accordingly, the Task Force recommends, as central to the development of provision, that the Department of Education and Science introduces legislation, which can be applicable to all children and adults with special educational needs, to establish, in law, a system for the formal identification, assessment and intervention in respect of young children and students with ASDs; to provide such arrangements within a given timescale, to provide an appeals procedure, and further, to include the formal involvement of parents throughout the process. 6. The essential policy and practices, which this report embodies, are that: · The needs of children with autism spectrum disorders are identified as early as possible and assessed comprehensively to inform intervention; · A range of provision is created and available to support the individual and unique needs of all children and young persons with autism spectrum disorders; · Priority is given to enrolment of the child’s or young person in a mainstream school; · There must be close partnership with the parents and co-operation between all the agencies concerned with provision; · There is a multi-disciplinary