ASD Services Improvement Review
Autism Spectrum Disorder Services Improvement Review
Autism Spectrum Disorder (ASD) is a common developmental condition. As awareness of ASD has grown among parents, teachers and health professionals, the number of children and young people referred to the health service with concerns about ASD has increased.
The number of referrals accepted by the Health and Social Care system for assessment for possible ASD is expected to reach 3,000 in 2015/16. The ASD assessment services are organised differently in each HSC Trust, and their systems were not designed to meet the current demand. We are concerned that the waiting times for assessment of most children and young people are unacceptably long.
As part of our commitment to reducing the number and length of time children and young people have to wait for an autism assessment the HSC Board, with support from the Public Health Agency, is carrying out a regional review of the development and delivery of Autism services. This consists of three stages:
- The HSC Board, with support from the PHA, has investigated the trends in demand, assessment and diagnosis across the areas covered by the five Health and Social Care Trusts and have identified a need to streamline and harmonise the assessment process so that children and young people receive an equitable assessment in a timely manner regardless of which part of Northern Ireland they live in. This work was completed in November 2015
- The Board and PHA launched the 10,000 Voices initiative on 29th January 2016 to give people an opportunity to provide feedback on their experiences of accessing Health and Social Care services especially if they have had experience of the following services in the last 12 months:
- Autism (children and young people up to age 18)
- Child and Adolescent Mental Health Services (CAMHS)
- The final stage of this review aims to explore options for redesigning the ASD assessment, diagnostic and intervention processes. We have engaged with national ASD experts who will work with Trust staff and the families of children with ASD to redesign services to create a regionally equitable model, with access to early intervention services, and significantly improved waiting times. This group, which consists of ASD experts, those who use the service, key decision-makers and medical professionals from all five Trusts and DHSSPS will meet on 22 February 2016.
Participants will hear about the experiences of parents and carers, and children and young people awaiting assessment for ASD and their experience of the diagnostic process. Experiences will be drawn from both those who use the service and from the 10,000 Voices Project. National ASD experts will share their knowledge and experience and help Northern Ireland’s healthcare practitioners and decision-makers to redesign the assessment process so the time taken from concerns first being raised to an ASD assessment being completed is greatly reduced.
Following the outcome of the event on 22 February 2016, we will work with all five Health and Social Care Trusts to implement a single, regionally equitable service model for ASD, and subject to resources, establish early support teams in each Trust.
We would encourage people who have experience of waiting for and taking part in assessment for ASD to take part in this process by sharing their experiences with us through our 10,000 Voices Project at: http://www.10000voices.info .
Panel of Autism Spectrum Disorder experts
Professor Terry Brugha MD(NUI), FRCPsych
Terry (Traolach) Brugha, MB MD FRCPsych, Professor of Psychiatry, University of Leicester and Consultant Psychiatrist, Leicester, trained in psychiatry and epidemiology at University College Dublin and at the Institute of Psychiatry and MRC Social Psychiatry Unit, Kings College London. His achievements include the development of the world’s most widely used measure of stressful life events, the List of Threatening Experiences, and the completion of the world’s first nationwide adult general population programme of surveys of the epidemiology of autism spectrum disorder in adults. He leads a long term programme of clinical trials on the prevention of perinatal depression. Terry is also the chair of the WHO advisory committee on the Schedules for Clinical Assessment in Neuropsychiatry (SCAN). He has served as Secretary General of the International Federation of Psychiatric Epidemiology.
Richard Mills has authored numerous published scientific papers, book chapters and articles on autism. He currently holds the following positions: Director of Research at Research Autism; Hon. Research Fellow, Department of Psychology, University of Bath; Senior Research Fellow, CASD, Bond University, QLD, Australia; Research Associate, Scottish Autism Centre for Practice Innovation; Committee member, Northern Ireland Autism Research Strategy (NIASRAC); Consultant, ARC Singapore; Advisor Inspire Foundation Malta; Expert member the National Autism Project; Associate Lecturer, Tizard Centre University of Kent; Associate Consultant AT-Autism; Associate Laskaridis Foundation, Piraeus, Greece; Autism Advisor, States of Jersey, Autism Advisor, Bailiwick of Guernsey. Editor, Autism, the International Journal of Research and Practice; Editor, Advances in Autism. He was formerly Director of Research at the Centre for Autism at the National Autistic Society UK (NAS) and Director of Services for the NAS. He is a member of the National Institute for Health and Care Excellence (NICE) Guideline Development Groups on autism in adults and on challenging behaviour in learning disabilities and autism. His interests include autism, ADHD, challenging behaviour, forensic aspects of autism, autism in women and girls, ethics, staff training, service evaluation and service design and in management coaching and mentoring.
Lorraine Scott is Head of the Learning Support and Assessment Service at Middletown Centre for Autism. In 2010, she was appointed as a member of the National Institute of Clinical Excellence (NICE) Guideline Development Group for Autism Screening and Diagnosis. Formerly, she was an Assistant Advisory Officer for Autism in the Southern Education and Library Board (SELB). Following this, Lorraine was a Psychoeducational Therapist employed by the University of North Carolina, Division TEACCH, before returning to a position as Team Leader for the Autism Diagnostic and Intervention Service in the Southern Health and Social Care Trust. Her previous experience is in teaching children with special educational needs. Lorraine has a MEd in Special Education (Autism, Children) from the University of Birmingham.
Timeline of Autism Services review and legislation