Introduction
Autism spectrum disorder (ASD) is a lifelong developmental disability that affects the way a person relates to people and the environment around them. It affects how they communicate and make sense of the world. As it is a spectrum condition, there are varying degrees of how it affects an individual. Aspergers Syndrome is one form of an autistic spectrum disorder and may be described as being more able. Their intellectual ability may be average or above.
The “triad of impairments” associated with autistic spectrum disorders means that three main areas are affected, each of which often links up with specific behavioural difficulties.
- Communication: everyone with an autistic spectrum disorder will have some problems with their receptive and expressive language,
- Social interaction: everyone with an autistic spectrum disorder will have difficulties engaging in two way social interaction
- Receptive and stereotyped behaviour: individuals with an autistic spectrum disorder may not have developed their ability to use their imagination, so are often driven by repetitive and familiar activities.
Some individuals with an autistic spectrum disorder have sensory problems, in that their brain is unable to process sensory information in a typical way, either being over-sensitive, under- sensitive or having inappropriate reaction to stimulation. Some people with autism are able to live relatively independent lives, where others could need lifelong specialist support.
. Research has shown that 1 in 100 children have autism. Very little is known about how many adults have autism, but by applying the 1 in 100 figure we estimate that over 300,000 adults in the UK have an autism spectrum disorder. Together with their families, they make up over one million people whose lives are touched by autism every single day.
(Source NAS Website 2009)
Background
In 2008 the Welsh Assembly Government published an action plan to explain how people with autism should be helped and supported. The plan talks about the needs of people of all ages. It talks about school, college and work, health and social care and the needs of families and carers.
What is each local authority area expected to do?
Local agencies, including local authorities (the Council) and local health boards, are expected to deliver the ASD strategic action plan through local health, social care and well-being strategies and Single Children and Young People's Plans
Local agencies have to deliver on a number of actions in the first three years, including the following key functions:
1.Identify a local ASD champion to support the implementation of the plan locally.
2.Set up databases to record numbers of children and adults with autism locally.
3.Map existing services for children and adults with autism, as well as family support services and use tracking data (above) to identify gaps and plan future services
4.Set up local ASD co-ordinating groups to lead planning and development in line with the plan (to include representation from people affected by autism)
5.Provide autism awareness training for professionals coming into contact with people with ASD.
“For the very first time within any of the UK countries we are now seeing in Wales the development of an ASD infrastructure at local, regional and national levels. This is being achieved through the identification of local ASD leads; development of the regional ASD development team within the SSIA; and at national level the post of WAG ASD Implementation Manager. The local action plans can and will act as the lynchpin for coordinated planning and delivery of services at regional as well as local levels.
At national level the important agendas relating to research, adult, and the development of a wide-range of easily accessible awareness-raising materials, are being actively pursued. “
Hugh Morgan
ASD Implementation Manager
Welsh Assembly Government
A Local Action Plan for Torfaen
This local action plan has been written in a style that supports involvement from service users and carers. It is intended to be a clear and readable document that sets out achievable objectives. The focus is on positive outcomes for people in Torfaen who are affected by autism and related spectrum disorders
ASD Lead
The lead / champion for ASD in Torfaen is Ruth Derrick, who is a Senior Manager in the Council’s Social Care and Housing Service Area.
Co ordination – Stakeholder Group
There is a local stakeholder group in place that will meet regularly to develop the action plan and take the actions forward.
The partners in our Stakeholder Group are from statutory agencies such as the local authority and the health service. HopeGB is a Torfaen based parent-run organisation that will provide the local co-ordinating role.
The members are as follows:
Ruth DerrickASD Lead / Social Care and Housing /
Ian Cutler / Social Care and Housing /
Cathy Marshall / Social Care and Housing / [email protected]
Andrea Smith / Social Care and Housing /
Dermot McChrystal / Local Education Authority /
Andrew Dean / Aneurin Bevan Health Board /
Cheryl Deneen / ASD Support Officer /
Sarah Robinson / Hope GB /
Pam Preece / Parent Rep/Gwent Autistic Society / Pam Preece
Ken Davies / Parent Rep / Ken Davies
We believe that it is essential that the stakeholder group is influenced by people affected by autism and professionalswho want to work in partnership with the group.
We hope to ensure this by having service user representation on the co ordination group and by canvassing the views of other service users via HopeGB.
We aim to develop a relationship of trust and productivity, but set in the heart and context of families who have a clear understanding of how they experience autism.
“I don’t understand what an action plan is. How will that help me? Please tell me about it so that I will know what you mean.”
(Adam age 14 who has a diagnosis of Aspergers)
“Services are important but as a parent I wanted to talk to other parents. I didn’t know where to start” (parent)
“We felt utterly lost when we first had our son’s diagnosis. It was a lot to take in. It would have helped us so much to have had some useful contact names for support and more information” (parents)
*“When they told me my child had Aspergers, on the one hand I felt relieved to have a diagnosis that explained some of his unusual behaviour, but at the same time I thought this is forever…..what happens now? Thankfully, I was put in touch with people who could help me (Parent)
Actions
Key local stakeholders, including service users and their families have identified a number of ways in which services could be improved or developed to make things better for those with ASD.
There are also a number of things we have to do within statutory services to get to this point.
The key changes and developments we would like to embark on in Torfaen are summarised in our action plan.
We have already achieved some of our targets and have begun to make progress towards others e.g.
- We have financially committed to the whole Gwent Aspergers Project
- We have participated in the SE Wales LEA Consortium Scoping project for Autistic Spectrum Disorder.
- We have facilitated a Parents and Carers Support Group in Cwmbran
- We have supported the development of a local charity who offer a range of support services for people affected by autism. I. A range of training has already been delivered by the ASD Support Officer and we plan to develop a rolling programme of training events.
We have to be realistic and we want to achieve our goals.
The public sector is working within a very tight financial settlement over the next twelve months and beyond. At this time, we do not know how much grant we will be allocated by the Welsh Assembly Government specifically for autism beyond this financial year. We do spend a significant amount of money on supporting people with autism and we would like to spend more. When we know what we have to invest, the local co-ordinating group can support the implementation of our plans further.
There are three things that we believe should be further developed as a priority:
- Post – diagnostic support. What happens after you are told your child has an ASD? What does it mean? How will it affect my child’s life? Who will help me if I can’t manage? These are the things that we have learnt from families. These families want to make this process much better for other families. This is so important. We want to help families make sense of things so that they do not feel isolated. This is part of the role of the ASD Support Officer who extends this through close working with staff/professionals involved with the person in their educational setting.
- Training and awareness - raising. We believe that it is crucial to develop a training programme so that people are well informed, skilled and have a better understanding of how autism impacts on individuals, families, in school and in all areas of life. Professionals and parents need to be trained in evidence based methods so that any intervention is tried and tested.
- Seamless transitions transition. Any changes in routine for people with an ASD can be very difficult. The changes that come between childhood and adulthood are probably the greatest challenge, particularly in terms of service provision. We want to develop services that support the current ASD Support Officer who is employed within the LEA. We will work with our partners in Action for Children to better support families at home. We will work closely with the Transition Project Team to ensure that we are not duplicating services. The ASD Support Worker will share her best practice work to ensure that expertise is available. We need to develop an autism care pathway that provides an overview of who does what where and when. This would reflect joint working across all disciplines and address the holistic needs of the family which reflects the changing needs of the child/adult with autism.
We know that there is a lot more work to do. We want to make best use of the resources we have so that we can make a difference to people’s lives.
Infrastructure, participation and service user involvementKey tasks / Lead / Completion date / Outcome measure / progress
Gathering and sharing information
Develop a system to record individuals with ASD in Torfaen / Explore systems in place and report to group / Ruth Derrick / Oct 09 / Information about individuals with ASD in Torfaen is accurate and up to date / 0ngoing
We are still unable to have access to health data
Complete mapping of services for individuals with ASD in Torfaen / Begin with mapping of statutory agencies
Focus group to carry out this work / Ruth Derrick / Complete information about services including eligibility criteria is available / As services develop this is an ongoing activity to meet identified need. As such this action is never truly completed.
Stakeholder group is aware of service gaps, and uses this information to develop the action plan further / Work to begin with statutory agency gaps / Gap analysis completed and shared with group / Ongoing. As such this action is never truly completed
Services being developed have a strong evidence base where possible / Services are regularly evaluated / All agencies
CYPP
Action for Children / ongoing / Strong evidence based practice in operation / ongoing
Assessment and diagnosis
action / tasks / Lead person / agency / resources / Completion date / Outcome measure / progress
Develop and define a clear assessment pathway for children and young people / Update from project via Jo M / CAMHS /
CALDS /
Paeds
Health / Unsure – to liaise with CAMHS
Pan Gwent approach / Clear assessment pathway in operation / ongoing
Develop an assessment pathway for adults with ASD / Torfaen to opt into Gwent Aspergers Project / Health Led
Pan Gwent / £5,000 ASD grant
Specific funding allocated by WAG for Adults / Adults with ASD are able to access appropriate services / ongoing
Keep up to date with national adults task and finish group outcomes
Develop clear understanding of procedure for referring for assessment / Liaise with assessment teams / Health Led / TBC / Referrals are made in an appropriate and timely manner / ongoing
Ensure practitioners in all agencies are aware of this
develop information leaflets explaining the assessment and diagnostic procedure and timescale for service users / Clarify information / Health Led / TBC / TBC / Service users are aware of assessment process and timescale / Unable to start until pathways are clarified
Develop leaflet and circulate
Ensure that service users are aware of how to access support and advice following diagnosis / Information pack given at time of diagnosis / Jo M / Jan 10 / Awaiting WAG regional info pack
Hope GB Website
ASD Support Officer already supporting families following diagnosis
Information available onHope GB website / Sarah Robinson / Cheryl Deneen
All newly diagnosed children and young people are signposted to Cheryl Deneen for advice and support / All practitioners / Cheryl Deneen
Needs assessments take into account the difficulties experienced by those with ASD / Professional Training is accessed / Ruth Derrick / Generic Training Budget
ASD Grant / Jan 11 / All staff undertaking needs assessments have a sound knowledge of ASD
Assessments take into account ASD specific needs / Ongoing
Pan Gwent Training
Training via Cheryl Deneen
Identified with TCBC staff through Worksmart
Access / services / support and interventions
action / tasks / Lead person / agency / resources / Completion date / Outcome measure / progress
Ensure children with ASD have access to social skills training / Children have access via schools and family centres / Cheryl Deneen
Action for Children
Outreach Service for older children / 5K / ongoing / Children with ASD have access to social skills training / Available through direct support in schools and outside school activities through play and voluntary groups
Staff training
Increase individuals with ASD ability to access services / Service mapping / Ruth Derrick / nil / ongoing / Increased early access to services / ongoing
Staff training
Influence senior management groups
Already have dedicated ASD sessions at Leisure centre
Awareness raising activities
Increase understanding of ASD in private sector e.g. high street, employers / Awareness raising activities / WAG
Regional Support Team / Part of National funding programme / Six information leaflets planned for October 2010 / For later action
Increase S< and OT provision in Torfaen / Referral pathway under reviewre multiagency OT / Health
Social Care / ongoing / Evaluate by September 2010 / Increased S< / OT support / Ongoing with an increase in Early Bird training in Health
Education and employment
action / tasks / Lead person / agency / resources / Completion date / Outcome measure / progress
ensure supported employment is accessible by those with ASD / Liaise with supported employment providers / National/Regional Team development / ASD National funding allocation / For later action
Deis Cyffle project with Autism Cymru
Support individuals with ASD to access employment / Make employers aware of positive aspects of employing individuals with ASD / National/Regional Team development / ASD National funding allocation / For later action
Training for careers and jobcentre advisors
Training re: job applications and writing CVs, attending interviews via above services to be developed for those with ASD
Training and awareness
action / tasks / Lead person / agency / resources / Completion date / Outcome measure / progress
Gain an understanding of training needs across agencies / Training needs analysis / Pan Gwent Steering Group / Pan Gwent / December 2010 / Completed training needs analysis / ongoing
Develop a Pan Gwent Training Plan / Plan to be informed by TNA / Pan Gwent Steering Group / TBC / December2010 / Cross agency training plan / Ongoing
Commissioning
action / tasks / Lead person / agency / resources / Completion date / Outcome measure / progress
Ensure all information regarding needs and numbers of those with ASD are recorded in order to estimate future demand / Need to develop database / Ruth Derrick / TBC / Awaiting Health information re shared database / Services are commissioned to meet the need of the population
Use info to inform service development
Explore budget pooling across agencies to develop ASD services / Explore via group / All agency leads / Regional Lead to inform / Group are aware of ways to pool budgets to meet ASD need / For later action
Develop ways to commission services on a regional basis to meet needs / Gain understanding of common areas for action across the region / National/Regional Team / April 2011 / Where valid ASD services are commissioned on a regional basis
Develop a regional commissioning strategy
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