Research Into Employment Outcomes for Young People with Autistic Spectrum Disorders

Total Page:16

File Type:pdf, Size:1020Kb

Research Into Employment Outcomes for Young People with Autistic Spectrum Disorders Ymchwil gymdeithasol Social research Rhif/Number: 50/2014 Research into Employment Outcomes for Young People with Autistic Spectrum Disorders 1 Research into Employment Outcomes for Young People with Autistic Spectrum Disorders Ruth Townsley (Ruth Townsley Research) Carol Robinson (Carol Robinson Consulting) Val Williams (Norah Fry Research Centre, University of Bristol) Stephen Beyer (Welsh Centre for Learning Disabilities, Cardiff University) Ceri Christian-Jones (Bangor University) Views expressed in this report are those of the researchers and not necessarily those of the Welsh Government For further information please contact: Joanne Starkey Knowledge and Analytical Services Welsh Government Cathays Park Cardiff CF10 3NQ Tel: 0300 025 0377 Email: [email protected] Welsh Government Social Research, 2 June 2014 978-1-4734-1409-9 © Crown Copyright 2014 Table of contents Acknowledgements ......................................................................................... 4 Glossary of acronyms ..................................................................................... 5 1 Introduction to the research ......................................................... 7 2 Employment and young people with ASD .................................. 12 3 Employment support for young people with ASD living in Wales ......................................................................................... 43 4 Pathways to employment for young people with ASD living in Wales ..................................................................................... 71 5 Conclusions and recommendations ........................................... 92 Bibliography ................................................................................................ 101 Appendix A Research design and methodology .......................................... 109 Appendix B Employment support programmes or services potentially available to young people with ASD in Wales in 2013 ............. 126 Appendix C Some financial entitlements for disabled young people wishing to work ........................................................................ 139 Appendix D ASD-specific support for young people with ASD in Wales: current initiatives ...................................................................... 141 Appendix E Pathways to employment: case studies of a sample of the young people included in the research .................................... 151 Appendix F The ideal pathway to employment for young people with ASD ......................................................................................... 158 1 Figures and tables Figure 1: Geographical location and coverage of employment support programmes or services working with young people with ASD ..................... 48 Figure 2: Support to consider employment ................................................... 50 Figure 3: Support to seek employment ......................................................... 51 Figure 4: Support to keep employment ......................................................... 53 Figure 5: Other employment-related advice, training and support ................ 54 Figure 6: Confidence level by provider type .................................................. 55 Figure 7: Do ESPs have any competence gaps in terms of working with young people with ASD? ............................................................................... 58 Figure 8: Do employment support programmes provide or buy in training for their staff on working with young people with ASD? ................................ 59 Figure 9: What makes it hard to work with young people with ASD? ............ 64 Figure 10: Ben’s pathway to employment ................................................... 152 Figure 11: Tom’s pathway to employment .................................................. 153 Figure 12: Reg’s pathway to employment ................................................... 154 Figure 13: Elin’s pathway to employment.................................................... 155 Figure 14: Owen’s pathway to employment ................................................ 156 Figure 15: Dafydd’s pathway to employment .............................................. 157 Table 1: Number of pupils with ASD aged 16-19 attending maintained secondary and special schools in Wales in January 2012 ............................ 11 Table 2: Destinations of pupils with ASD aged 16-18, by year group, for the academic year 2011/12 ........................................................................... 15 Table 3: Destinations of all pupils aged 16-18, by year group, for the academic year 2011/12 ................................................................................. 16 Table 4: Destinations of FEI learners aged 16-24 who terminated a learning programme during 2011/12 ............................................................. 17 Table 5: Destinations of WBL learners aged 16-24 who terminated a learning programme during 2011/12 ............................................................. 19 Table 6: Destinations of HEI leavers amalgamated across three academic years 2008/9, 2009/10, 2010/11 ................................................... 21 Table 7: Numbers of employment-related programmes or services working with young people with ASD ............................................................ 45 Table 8: Numbers of WBL programmes who worked with young people with ASD ....................................................................................................... 46 Table 9: Employment details of young people with ASD included in the research who were in paid or unpaid work .................................................... 82 2 Table 10: Summary of systematic searches conducted relating to employment and young people with ASD ................................................... 112 Table 11: Summary of data requests submitted .......................................... 114 Table 12: Education leaving points of young people with ASD included in the research ............................................................................................ 120 Table 13: Geographical location of young people with ASD included in the research ................................................................................................ 120 Table 14: Ages of the young people with ASD included in the research .... 120 Table 15: Place on autism spectrum of young people with ASD included in the research ............................................................................................ 121 Table 16: Overview of practice survey data collected and included in analysis ....................................................................................................... 124 Table 17: Work based learning programmes available in Wales in 2013 .... 126 Table 18: Mainstream employment support available in Wales in 2013 ..... 128 Table 19: Pan-disability employment support available in Wales in 2013 ... 134 Table 20: ASD-specific employment support available in Wales in 2013 .... 137 3 Acknowledgements We would like to express our gratitude to all the young people, families, professionals and employment support services, who contributed to this research by talking to us on the phone, or welcoming us into their homes or work places. We are very grateful for their positive response in responding to our numerous requests for information and for their willingness to participate in this research. The research project benefited hugely from the input of others involved in the research, policy, management or delivery of employment support for young people with autistic spectrum disorders, who provided advice, answered queries and offered practical assistance as the work developed. In particular, we are very grateful to all the external members of the research Steering Group: Sally Rees (Care Co-ordination Network Cymru), Andrew Kirby (Careers Wales), Jim Crowe (Learning Disability Wales), Johanna Manikiza (Social Services Improvement Agency), Hugh Morgan (Autism Cymru), Meleri Thomas (National Autistic Society Cymru) and Sue Leekam (Cardiff University’s Welsh Autism Research Centre). Thanks must also go to Andrea Meek at the Welsh Centre for Learning Disabilities (Cardiff University), Lynn Plimley (formerly of Autism Cymru, now with Mirus), Robert Lloyd-Griffiths (Institute of Directors), Rebecca Hobbs (Higher Education Statistics Agency), Emma Jenkins (National Training Federation for Wales), Dave Penk (Wales Council for Voluntary Action), Julie Annetts, Rachel Lloyd, Gareth Hopkins, Scott Clifford, Mel James, Bon Westcott, Rae Cornish, Carl Moruzzi, Cathy Mccaw, Ruth Brown, Huw Thomas and Marie Morley (all at the Welsh Government) and Alex Rees, for input and advice at specific stages of the work. Finally, we would like to thank Joanne Starkey, Launa Anderson and Bethan Cowan at the Welsh Government, for their support, encouragement and input throughout this project, and of course to the Welsh Government for commissioning and funding the research. 4 Glossary of acronyms ALN Additional learning needs ASD Autistic spectrum disorder ASC Autism spectrum condition ADHD Attention deficit hyperactivity disorder ALNCos Additional Learning Needs Co-ordinators CV Curriculum Vitae DLHE Destinations of leavers from higher education DEA Disability Employment Adviser DWP Department for Work and Pensions ESA Employment and Support Allowance ESP Employment support provider ESF European Social Fund FE Further education
Recommended publications
  • The Wrexham (Gas Fired Power Station) Order
    The Wrexham (Gas Fired Power Station) Order 6.4.3 Volume 4: Environmental Statement Appendix 8.3: Consultation Planning Act 2008 The Infrastructure Planning (Applications: Prescribed Forms and Procedure) Regulations 2009 PINS Reference Number: EN010055 Document Reference Number: 6.4.3 Regulation Number: 5(2) (a) Lead Author: Atkins Revision: Date: Description: 0 March 2016 Submission version SEC6.4-ES Appendix TABS.indd 16 10/03/2016 09:48 WREXHAM ENERGY CENTRE ENVIRONMENTAL STATEMENT Appendix 8.3 Air Quality Consultation CONSULTATION E-MAILS 8.1.1 Key e-mail correspondence follows between Atkins’ air quality specialists and statutory consultees: Natural Resources Wales –Khalid Aazem, Conservation Officer Natural Resources Wales – Anna Lewis, Principal Permitting Officer Wrexham County Borough Council – Paul Campini, Environmental Health Officer A8-1 WREXHAM ENERGY CENTRE ENVIRONMENTAL STATEMENT From: Paul Campini [mailto:[email protected]] Sent: 18 February 2016 14:03 To: Horrocks, Sarah <[email protected]> Cc: Spencer, Jenny <[email protected]> Subject: RE: Wrexham Power Hi Sarah I am still the air quality contact at WCBC. The only change of relevance is that the continuous monitoring site at Isycoed was closed on the 1st Jan. The diffusion tube network is still in operation and I’ve attached the results for 2016. These haven’t been ratified nor have they been BAF corrected as I am waiting for the national spreadsheet to be updated. The monitoring data for 2015 is on the Welsh Air Quality website but I’m not sure whether it’s been ratified yet. In terms of methodology, your proposal to use the new guidance documents would seem wise.
    [Show full text]
  • AUTISTIC SPECTRUM DISORDERS a Guide to Services for Children
    the Foundation for People with Learning Disabilities AUTISTIC SPECTRUM DISORDERS A Guide to Services for Children with Autistic Spectrum Disorders for Commissioners and Providers Rita Jordan, Glenys Jones & Hugh Morgan The Mental Health Foundation is the UK’s leading charity working for the needs of people with mental health problems and those with learning disabilities. We aim to improve people’s lives, reduce stigma surrounding the issues and to promote understanding. We fund research and help develop community services. We provide information for the general public and health and social care professionals. We aim to maximise expertise and resources by creating partnerships between ourselves and others including Government, health and social services. Since October 1998, The Foundation’s work with people with learning disabilities has been carried out under the name, the Foundation for People with Learning Disabilities. It remains part of the Mental Health Foundation. The Foundation for People with Learning Disabilities would like to thank The Shirley Foundation for funding this publication. Contents Contents Introduction ___________________________________________________ 2 Section 1: Definition, Identification and Diagnosis ________________ 3 What is an Autistic Spectrum Disorder? _________________________ 3 The Triad of Impairments in Autistic Spectrum Disorders _________ 3 Levels of Explanation __________________________________________ 5 Individual Differences __________________________________________ 6 Associated Conditions __________________________________________
    [Show full text]
  • TGC-Barriers-To-BAME-Women Full
    1 Contents Acknowledgement .................................................................................................................................. 4 1. Introduction .................................................................................................................................... 5 2. Literature Review ............................................................................................................................ 7 2.1. Diversity within Black, Asian, and Minority Ethnic (BAME) groups ........................................ 7 2.2. Experiences of BAME women in (self)employment ............................................................. 11 2.2.1. In employment .............................................................................................................. 11 2.2.2. In self-employment ....................................................................................................... 13 2.2.3. Qualifications and promotion opportunities ................................................................ 15 2.3. Barriers to BAME women in employment ............................................................................ 17 2.3.1. Gender and Ethnicity Pay Gap ...................................................................................... 18 2.3.2. Bias, discrimination and racism .................................................................................... 19 2.3.3. Poverty and lack of resources ......................................................................................
    [Show full text]
  • The Repetitive Behaviour Questionnaires
    The Repetitive Behaviour Questionnaires Background information The information below is provided by the Wales Autism Research Centre, Cardiff University and Newcastle University. Each Repetitive Behaviour Questionnaire is listed and the reference and online link for the published validation studies are provided. Please see the published studies for information about psychometric properties. Repetitive Behaviour Questionnaire-2 (RBQ-2): A 20-item parent questionnaire designed to measure children’s restricted, repetitive and sensory behaviours. This was created by Prof Sue Leekam and Dr Michelle Turner at Durham University. Originally it was designed as a brief questionnaire for use in longitudinal studies. Subsequently it has been widely used for a range of different general and clinical populations. The items come from the from the original RBQ (Turner, 1995; Honey et al., 2012; see below) and the Diagnostic Interview for Social and Communication Disorders (DISCO; Wing, 2002). The RBQ-2 was first validated in a research collaboration between Durham and Newcastle University in 2007: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1469-7610.2007.01778.x Leekam, S, Tandos, J., McConachie, H., Meins, E., Parkinson, K., Wright, C.,Turner, M., Arnott, B., Vittorini, L., & Le Couteur, A. (2007). Repetitive behaviours in typically developing 2-year-olds. Journal of Child Psychology and Psychiatry, 48, 11, 1131-1138. doi: 10.1111/j.1469-7610.2007.01778.x Adult Repetitive Behaviour Questionnaire-2 (RBQ-2A): A 20-item self-report questionnaire designed to measure adults’ restricted, repetitive and sensory behaviours. This was created by Dr Sarah Barrett for her PhD at Cardiff University with Prof Sue Leekam and Dr Catherine Jones, Cardiff University.
    [Show full text]
  • Autism in the Workplace
    Employ Autism: From School to Work Autism in the Workplace Untold Stories Untapped Talent Edited by Jonathan Andrews FRSA Future Trainee Solicitor at Reed Smith 1 Introduction 1 Contents Morag Fraser - Autism and adjustments 2 Gareth - Autism in the workplace 3 Georgia Grainger 5 Jack Welch - Employment and disability 7 Craig - Working with autism 9 Becky 10 George Harvey 11 Fern Adams 13 Alex Lowery 15 Dami Benbow 17 Anonymous 19 Garry Burge 20 Conclusion 21 By Jonathan Andrews FRSA, editor Jonathan Andrews is a Future Trainee Solicitor Introduction at Reed Smith and an Ambitious about Autism Youth Patron It’s tempting to think that autism is not something employers need to worry about – that people with an autism spectrum disorder (ASD) are either super-smart and hyper-capable, able to excel in their “special interest” area (almost exclusively STEM-based) without any adjustments or understanding, or too “low-functioning” to work and not worth worrying about. It’s through this prism that autism is often viewed in the media – but it is far too simplistic, and most do not fit these extremes. Rather, autism is a spectrum, with differing levels of ability, and with autistic people being skilled in, and attracted to, many different roles. I felt it important to emphasise this wide range of talent and interest within the autistic spectrum because it’s something all employers need to look out for and be aware of – there really is no sector which someone with autism won’t be interested in. As such, this booklet is a collection of a diverse group of people throughout the UK, each from a different walk of life; all have an ASD, but no two could be called identical and all have worked in very variant industries to each other.
    [Show full text]
  • The Challenges of an Ageing Population
    No 5258 December 2012 English edition Autism - Europe The challenges of an ageing population New dental health program in France Autism in emergency situations Fitting in at a mainstream school Autism-Europe International Congress 2013: Keynote speakers announced Published by Autism-Europe Afgiftekantoor - Bureau de dépôt : Brussels - Ed. responsable : Z Szilvásy For Diversity Autism Europe aisbl Rue Montoyer, 39 • B - 1000 Brussels, Belgium Tel.:+32-2-675 75 05 - Fax:+32-2-675 72 70 Against Discrimination Email: [email protected] Website: www.autismeurope.org SUMMARY ActivitiEs - The challenges of an ageing population ................. 3 - European strategies for autism ............................. 6 Dear friends, NEWs AND FEAtUREs In this issue, you will find a special feature about ageing and - New dental health program in France ................... 8 autism. As 2012 was the European Year for Active Ageing - Autism in emergency situations .......................... 12 and Solidarity between Generations, it was important to - Fitting in at a mainstream school ........................ 14 raise awareness of the fact that people with autism grow old too. To most of us it sounds obvious, however, as the iNtERNAtioNAl AUtism-EURopE coNgREss condition of autism is still a relatively recent discovery and - Keynote speakers announced & other news .........18 the number of diagnoses has grown exponentially over the past 30 years, the general public often tend to associate NEWs iN BRiEF .................................................... 20 autism with children and younger people. At Autism- Europe, we felt it was important to use this European Year NEW mEmBERs as an opportunity to highlight the challenges faced by - Latvian Autism Association ................................ 21 people with autism and their families as they grow older.
    [Show full text]
  • Antimicrobial Dispensing in Primary Care in Wales (2006 – 2008)
    National Public Health Service for Wales Antimicrobial Dispensing in Primary Care in Wales Antimicrobial Dispensing In Primary Care in Wales (2006 – 2008) Authors: Maggie Heginbothom Date: Status: Final Robin Howe 18/11/09 Report entitled ‘Antimicrobial Dispensing Welsh Antimicrobial Resistance Programme: in Primary Care in Wales’ Surveillance Unit Executive Summary This is the first report from the Welsh Antimicrobial Resistance Programme Surveillance Unit regarding antimicrobial usage in primary care, and is aimed at providing an overview of antimicrobial prescriptions prescribed by general practices and dispensed in primary care in Wales Key points of note are: Antimicrobial usage in primary care in Wales is common In 2008, there were 2,417,104 antimicrobial prescription items dispensed. This equates to almost 1 antibiotic for every member of the population. Antimicrobial use has increased from 2006 Between 2006 and 2007 antimicrobial dispensing increased from 538.9 to 570.2 prescriptions/1000 PUs* (5.8% increase). However, from 2007 to 2008 there was little change in the All-Wales dispensing rate. Antimicrobial use, in terms of amount, varies between Local Health Boards (LHBs) In 2008, dispensing varied from 487.9 prescriptions/1000 PUs per annum to 659.5 prescriptions/1000 PUs per annum. Antimicrobial use, in terms of agents selected, varies between Local Health Boards (LHBs) For example, the percentage use by LHBs of different oral tetracyclines was: oxytetracycline 20-49%, doxycycline 15-48%, lymecycline 5-33%, and minocycline 7-16%. The proportion of total dispensing of antimicrobials that are included in the “Top 9” (amoxicillin, clarithromycin, doxycycline, erythromycin, flucloxacillin, nitrofurantoin, oxytetracycline, penicillin V and trimethoprim) ranged from 70-79%.
    [Show full text]
  • Detection of Echinococcus Granulosus and Echinococcus Equinus in Dogs and Epidemiology of Canine Echinococcosis in the UK
    Detection of Echinococcus granulosus and Echinococcus equinus in Dogs and Epidemiology of Canine Echinococcosis in the UK WAI SAN LETT A thesis submitted for the partial requirement of the degree of Doctor of Philosophy (Ph.D.) University of Salford School of Environment and Life Sciences 2013 Abstract Echinococcus granulosus is a canid cestode species that causes hydatid disease or cystic echinococcosis (CE) in domestic animals or humans. Echinococcus equinus formerly recognised as the ‘horse strain’ (E.granulosus genotype G4) is not known to be zoonotic and predominantly involves equines as its intermediate host. The domestic dog is the main definitive host for both species, which are also both endemic in the UK but data is lacking especially for E.equinus. An E.equinus-specific PCR assay was designed to amplify a 299bp product within the ND2 gene and expressed 100% specificity against a panel of 14 other cestode species and showed detection sensitivity up to 48.8pg (approx. 6 eggs). Horse hydatid cyst isolates (n = 54) were obtained from 14 infected horse livers collected from an abattoir in Nantwich, Cheshire and hydatid cyst tissue was amplified using the ND2 PCR primers to confirm the presence of E.equinus and used to experimentally infect dogs in Tunisia from which serial post-infection faecal samples were collected for coproanalysis, and indicated Echinococcus coproantigen and E.equinus DNA was present in faeces by 7 and 10 days post infection, respectively. Canine echinococcosis due to E.granulosus appears to have re-emerged in South Powys (Wales) and in order to determine the prevalence of canine echinococcosis a coproantigen survey was undertaken.
    [Show full text]
  • Explanatory Memorandum to the Autism
    This Explanatory Memorandum has been prepared by Paul Davies AM and is laid before the National Assembly for Wales. Declaration of Legislative Competence In my view, the provisions of the Autism (Wales) Bill, introduced by me on 13 July 2018 would be within the legislative competence of the National Assembly for Wales. Paul Davies AM Member in charge of the Bill July 2018 Autism (Wales) Bill: Explanatory Memorandum Contents Declaration of Legislative Competence ......................................................... 1 Part 1: Background and purpose of the Bill .................................................. 9 1. Introduction ........................................................................................................... 9 2. Legislative powers............................................................................................ 10 2. 1. Introduction .................................................................................................................................................... 10 2. 2. Reservations .................................................................................................................................................. 10 2. 3. Welsh Public Authorities ..................................................................................................................... 13 2. 4. Jurisdiction and Compatibility ....................................................................................................... 14 3. Context and overall need for the Bill ........................................................
    [Show full text]
  • Government and Autism: Opportunities and Solutions (2006)
    02306 PAPA Resources A4 3/21/06 12:36 PM Page 1 Government and Autism: Opportunities and Solutions CHALLENGING NEED 02306 PAPA Resources A4 3/21/06 12:36 PM Page 2 Government and Autism: Opportunities and Solutions CHALLENGING NEED Government and Autism: Opportunities and Solutions A Partnership Approach by the National Autism Charities of Northern Ireland and Wales Launched by the Rt Hon Peter Hain MP, Secretary for State for Wales and Northern Ireland in the House of Commons 29th March 2006 March 2006 02306 PAPA Resources A4 3/21/06 12:36 PM Page 1 Government and Autism: Opportunities and Solutions A joint initiative from Autism Northern Ireland and Autism Cymru Foreword Partnership work between organisations is very much part of today's modern agenda for the social care sector. This report, “Government and Autism: Opportunities and Solutions” is a prime example of two national autism charities working constructively together in a clearly defined and highly positive manner. The message of this Northern Ireland/Wales Partnership is clear - by thinking, sharing and working together at a national level the potential for achieving major strategic impact can be realised. The emphasis of this report by Autism NI (PAPA) and Autism Cymru is the very real need for government to establish clear policies and specific strategies for Autistic Spectrum Disorders, which as a condition currently places huge demands upon social care budgets but is also a tremendous call upon the resilience of families and practitioners. In Wales, for example, over 2% of the total population are directly or indirectly involved in autism.
    [Show full text]
  • A History of Autism Conversations with the Pioneers
    A History of Autism Conversations with the Pioneers Adam Feinstein A John Wiley & Sons, Ltd., Publication Praise for A History of Autism “No one has attempted to write the history of autism so comprehen- sively before. Adam Feinstein’s highly readable but remarkably thorough book contains a treasure-trove of conversations with the scientists, clin- icians, lobbyists, and parents who have shaped the development of autism in both research and policy. The timing of this book is opportune, as the pioneer generation becomes ‘emeritus.’ History-telling is never wholly objective, but Feinstein (the science-writer, parent, and international con- ference organizer) is better placed than almost anyone to document the extraordinary changes that have happened to the autism community world- wide since the 1940s onwards. This book is an important contribution to the history of medicine and a unique resource for future generations who will build on their predecessors.” Simon Baron-Cohen, Director, Autism Research Centre, Cambridge University “The material in A History of Autism is selected and worded with such enthusiasm, such personal engagement, that it is contagious. I couldn’t stop reading. This book is a monument; a milestone that we all owe to autism’s history.” Theo Peeters, Centre for Training in Autism, Belgium “From the many years before Kanner’s 1943 description when the condition was known by other names, through all that has happened to the present time, along with a glimpse of the future, Feinstein explores the evolutionary journey of autism in an enlightened, educational, and entertaining fashion. Nowhere will you find a more comprehensive, care- fully documented and eminently readable account of the history of autism than this book.” Darold A.
    [Show full text]
  • Communication • Social and Emotional Understanding and Social Interaction • Flexibility of Thinking and Behaviour
    NES - Autism Learning Resource - Topic1 - Section A - Page 2 l http://www.nes.scot.nhs.uk/asd/index.htm Topic One : The Patient with an ASD A: How an ASD might impact on the individual B: Sensory differences and how they can impact on behaviour C: Understanding the meaning of behaviour This Resource is designed for any professional who is working in the health care system at the primary care level (eg General Practitioner); Allied Health Professionals (eg dieticians, occupational therapists, physiotherapists, podiatrists and speech and language therapists); Dentists, Opticians, Public Health Nurses; District Nurses; Practice Nurses; and Dental nurses). A: How an ASD might impact on the individual A heterogeneous disorder (Page 2/19) The person with an Autism Spectrum Disorder (ASD) will have major impairments in three areas of development and will show a different developmental profile from the general population. Nevertheless, there are no ‘typical’ cases in this field. People with ASD are individuals. Differences rather than similarities prevail in spite of a common triad. Some impairments can be quite subtle. ’People with autism come in as many shapes and sizes as ‘people with pneumonia’. They have different races, social circumstances, intellectual levels, personalities and associated disorders. They should not be expected to conform to a highly specific prototype or to benefit from exactly the same kind of intervention, treatment or training. First and foremost they are people. It so happens that they are affected by the same (or similar) disorder but this does not make them blueprints of each other.’ - (Peeters, & Gillberg, 1999) pp14-15 The Triad of Impairments (Page 3/19) The framework of the Triad of Impairments (Wing 1996) gives common areas of development that are affected in people with ASD and has facilitated the development of clearer diagnostic criteria.
    [Show full text]