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, no different to any other member of the population.

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.

(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

data to identify gaps and plan future services

4.Set up local ASD co-ordinating groups to lead planning and development to include representation from people affected by autism.

5.Provide autism awareness training for professionals coming into contact with people with ASD.

Wales are leading the way!

Wales are leading the way in raising awareness of ASD and in developing services to meet the needs of those affected by autism.

The Welsh Government developed a range of awareness raising material in partnership with a range of professionals, organisations and service users and carers. These were launched in 2011.

Parents and Carers in Torfaen were part of this important work and the outcome of this improved collaboration has resulted in meaningful, better quality literature. We want families to have better diagnostic pathways and access to services should be at the right time.

This local action plan 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.

Torfaen Local Stakeholder Group want to promote the ASD Aware Scheme to as many people as possible. The scheme can be accessed at:

Co ordination – Stakeholder Group

There is a local stakeholder group in place who meet regularly to take the action plan 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 and provide the local co-ordinating role.

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. We believe that it is essential that the stakeholder group is influenced by people affected by autism and professionals who want to work in partnership with the group.

The members of the Torfaen Stakeholder Groupare:

Sarah Robinson HOPEGB/Parent (Chair); Ruth Derrick Social Care and Housing ASD Lead; Cheryl Deneen ASD Support Officer Education ServiceASD Lead; Andrea Smith Social Care and Housing; Pam Preece Parent Rep/Gwent Autistic Society; Ken Davies Parent Rep; Jim Wright Social Care and Housing; Joy White Aneurin Bevan Health Board; Alka Ahuja Aneurin Bevan Health Board

Priorities for 2012/13: to develop a social group for adults

and to set up a Stakeholder GroupFace book page

Key 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 to discuss withSian Millar / Ruth Derrick / December 2012 / Information about individuals with ASD in Torfaen is accurate and up to date / 0n-going
We are still unable to have access to health data
We have improved our data collection for children
We need to obtain accurate adult data
Complete mapping of services for individuals with ASD in Torfaen / Begin with mapping of statutory agencies
Focus group to carry out this work
Public info needs to be updated / Ruth Derrick / Disabled Children Newsletter we need to consider this in view of collaboration with Newport
Carers Newsletter / 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
Stakeholder Group develops a Facebook Page / Cheryl
Sarah / September 2012
March 2013 / Raise at National Group (LIN)
In place / Gap analysis completed and shared with group / On-going. As such this action is never truly completed
Services being developed have a strong evidence base where possible / Services are regularly evaluated / All agencies
Action for Children / Ongoing
Action for Children to present to Stakeholder Group / Strong evidence based practice in operation / On-going
Multi agency Transition Group / To inform stakeholder group of numbers issues etc to inform future planning / Multi Agency Mike Logan / Review December 2012 / Transition Protocol in place / on-going
Assessment and diagnosis
Develop and define a clear assessment pathway for children and young people / Update from project via Jo M / CAMHS /
CALDS /
Paeds
Health
For sharing / September 2012 / Unsure – to liaise with CAMHS
Pan Gwent approach / Clear assessment pathway in operation / On-going
Develop an assessment pathway for adults with ASD / Danny Atebi Health led Group / Health Led
Pan Gwent / Danny Atebi’s work / Pathway in place / Adults with ASD are able to access appropriate services / On-going
Keep up to date with national adults task and finish group outcomes / Joy White in post
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 / In place / Service users are aware of assessment process and timescale
Develop leaflet and circulate
Needs assessments take into account the difficulties experienced by those with ASD / Professional Training is accessed
On line training link / Ruth Derrick
Mary Murphy / Generic Training Budget
ASD Grant / Jan 12 / All staff undertaking needs assessments have a sound knowledge of ASD
Assessments take into account ASD specific needs / On-going
Pan Gwent Training
Training via Cheryl Deneen
Identified with TCBC staff through Worksmart
Access / services / support and interventions
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 / 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
Buddy Scheme to support with of school activities
Staff training
Increase individuals with ASD ability to access services / Service mapping / Ruth Derrick / ongoing / Increased early access to services / On-going
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 / Welsh Government
Regional Support Officer / Part of National funding programme / Employment Ambassador in place / Six information leaflets planned Robert Lloyd Griffiths appointed
Increase S&LT and OT provision in Torfaen / Referral pathway under reviewre multiagency OT / Health
Social Care / Recognition of no secondary school support in place / Raise at Joint SMT / Increased S&LT / OT support / Ongoing with an increase in Early Bird training in Health
Service users at risk of sexual offending / Helen Palmers work – des this fit? / Regional Work
Service users at risk of substance misuse / Pan Gwent task groups / Regional work
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
Deis Cyffle project with Autism Cymru
Support individuals with ASD to access employment
Transition into employment Project (convergence)
PrioryCollege Gap between this level of service and young people with a lesser need / Make employers aware of positive aspects of employing individuals with ASD / National/Regional Team development
Wendy West in post / ASD National funding allocation / Working group in place to look at a range of support for young adults
Crownbridge are leading but this should be rolled out nine authorities are involved) 3 year funding
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 / Regional Group / Pan Gwent / December 2012 / Completed training needs analysis / Raise with National Officer
Develop a Pan Gwent Training Plan / Plan to be informed by TNA / Regional Group / TBC / December2012 / Cross agency training plan / Raise with National Officer
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 / For later action
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
Education Service changes with Inclusion Service in 2014
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 / On going through regional work / Where valid ASD services are commissioned on a regional basis
Develop a regional commissioning strategy

We welcome feed back and commentsfrom members of the local community, particularly those affected by autism.

Contact the Stakeholder Group through any member or through the Chair, Sarah Robinson at HopeGB

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