Rebecca Evans Minister for Social Services and Public Health
The Welsh Government is fully committed to working to improve the lives of children and adults with autism, their families and carers in Wales. We are aware of the challenges that people with autism and their families face every day and that it is crucial we ensure they have the support they need, when they need it.
We have today published a refreshed Autistic Spectrum Disorder (ASD) Strategic Action Plan. This responds to what people with autism, their families and carers have said is important to them. The aim is to ensure that adults and children with autism, along with their families and carers, have their needs understood in order to secure the support they require to achieve their own well-being outcomes and lead fulfilling lives. It clearly sets out the Welsh Government’s ambitions for both raising awareness of autism and ensuring public services work together to deliver effective care and support services for adults and children with autism.
Wales was the first country in the UK to take a national approach to autism, originally publishing a Strategic Action Plan in 2008. Since publishing that Strategic Action Plan we have made significant progress in delivering improvements to the lives of people with autism. One of the key achievements we have seen is the increased profile and awareness of ASD. We have made a significant range of material available through our ASD website. This includes information and resources for people with autism and their families or carers, as well as for professionals. The quality of our resources was recognised at the last Autism Europe conference in September and we have been approached by many countries for permission to use our materials.
We have also developed both national and local structures which includes establishment of a national co-ordinator and local ASD leads and co-ordinating groups. This has helped raise the profile as well as the development of improved services and the establishment of new services.
An independent evaluation undertaken in 2012 reported that the strategy had a positive impact on people and families, as well as professionals. There have been increased rates of identification as well as increased rates of diagnosis. There has also been improved support that children and young people can access in education, as well as improvement in transition services.
The revised Strategic Action Plan sets out three priority areas for action, based on what people told us. Firstly, timely access to assessment and diagnosis is vital so that people’s needs are understood and appropriate services are put in place to provide the support they need. An early diagnosis will also enable parents to understand their child’s needs and to seek appropriate support in their caring role. Many people with autism are not identified or diagnosed during childhood but may be helped by having access to assessment services as adults. We want to ensure there is a standardised assessment pathway and there will be a new 26 week waiting time for referral to first assessment appointment. There will also be improvements to adults diagnostic services through the National Integrated Autism Service.
Secondly, children, young people and adults with autism and their carers will have different support needs according to their age and abilities. For example, adults with autism can experience anxiety and social isolation, have difficulties in education, problems in finding and sustaining employment and difficulties in establishing and maintaining social relationships and friendships. The action plan seeks to support the needs of these groups to overcome everyday barriers in education, training, employment and in accessing services.
Finally, we will continue to work with our stakeholders to identify gaps in information, advice and training. We will ensure people with autism and their families and carers are aware of the resources available to them. Welsh Government will invest in further resource materials to raise awareness of autism and provide training resources across professional groups – particularly for those groups who people with autism told us needed greater awareness and training. We are building on our Learning with Autism programme for primary schools, developing new resources for early years, secondary schools and further education. We are also focusing on training for primary care and mental health professionals, people working in leisure services, and employers.
In April we began the roll-out of the new National Integrated Autism Service, marking a turning point in the way that care and support is delivered. This Programme for Government commitment will have a key role in achieving the ambitions of the Strategic Action Plan and is backed by £6 million of Welsh Government investment over three years.
This innovative integrated service will see new specialist teams in every region, providing adult diagnostic services. This will support the improvements we are delivering in children’s diagnosis, treatment and support services through the ‘Together for Children and Young People’ programme, which is supported by £2 million of funding a year. The service will also provide wider support and advice for children and adults, as well as their families or carers. It will also provide training and support for professionals.
The Welsh Government is taking action through new policies and legislation to make real advances in services and support for people with autism. The Social Services and Well-being (Wales) Act 2014 will transform the way that we meet the needs of all people with care and support needs in Wales, including people with autism and their carers. The Act puts the individual at its heart in terms of decisions about their care and support, gives individuals power to define their own outcomes and puts a special focus on autism.
Regional Partnership Boards established under that Act are responsible for ensuring that there are integrated care and support services to meet the need of people in their area. Autism has been identified as one of their priority areas for integration. Boards will need to report annually on progress, including in relation to the delivery of the National Integrated Autism Service.
The Strategic Action Plan will be accompanied by a delivery plan, which sets out in more detail the specific actions that will be taken, including how they will be measured and monitored. An Implementation Advisory Group will be established to monitor delivery and progress. Membership will include people with autism, including children, as well as their parents and carers. The group will also include representatives from statutory and third sector organisations.
An annual report will be published to provide an update on the progress being made. There will also be independent evaluation of the Strategic Action Plan and the National Integrated Autism Service.
We want to see a real difference in the services, care and support available to people with autism. We know that some of our improvements and actions will take time to deliver but we will be monitoring and reporting on progress.
We are committed to delivering this programme of work and will keep the need the need for autism specific legislation under review.
The following sets out how existing or planned legislation and policy meet the requirements and calls for an autism bill. This includes existing legislation in the Social Services and Well-being (Wales) Act, our plans for Additional Learning Needs reform and the work that will be taken forward through the refreshed Autistic Spectrum Disorder Strategic Action Plan and the National Integrated Autism Service.
In Wales, our legislation goes further than that provided for under England’s Autism Act as it is all-age, rather than adult only.
Duty to prepare and publish an Autism Strategy
- Whilst we do not have existing legislation in relation to establishing an autism strategy, Wales was the first country to develop a strategy in 2008 and we have just developed and issued the refreshed Autistic Spectrum Disorder Strategic Action Plan and Delivery Plan.
Duties on local authorities and NHS bodies to act under guidance
- As far as the proposed bill places duties on local authorities and NHS bodies to act under guidance, these do not go beyond the relevant duties in the Social Services and Well-being Wales Act 2014 and the NHS (Wales) Act 2006. Welsh Ministers have the power to issue a code on autism under the Social Services and Well-being (Wales) Act on the exercise of social services functions and local authorities are required to act in accordance with any relevant requirements contained in a code.
Diagnostic services and pathways
- The Strategic Action Plan includes a specific action to deliver improvements to children’s assessment and diagnostic services, this includes implementation of a national standardised assessment pathway. There will also be a new 26 week waiting target from referral to first assessment appointment.
- Improvements to adult diagnostic services will be delivered through the new National Integrated Autism Service. This includes the implementation of a national model across Wales.
Governance and Monitoring
- The Strategic Action Plan includes specific actions for monitoring delivery. These include the establishment of an Implementation Advisory Group to monitor progress and delivery. The publication of an annual report setting out progress in relation to specific actions. There will also be an independent evaluation of the integrated autism service.
- There will also be evaluation of the Social Services and Well-being (Wales) Act.
Assessment, eligibility and planning
- The Social Services and Well-being (Wales) Act places a duty on local authorities and local health boards to jointly assess the population’s care and support needs, including carers. They must identify the range and level of preventative services required to meet the needs identified. Our guidance to local authorities clearly states that autism must be a core theme of their population needs report.
- The Population Needs Reports will be published in March 2017 and regions will be required to develop an Area Plan. This will set out the range of preventative services which will be available, and this must include services for people with autism.
Training for staff who provide relevant services
- The Strategic Action Plan includes actions to develop and deliver training resources and material for professionals and others working with children or adults with autism. This includes people working in education, health, local authority services such as leisure and public transport.
- The National Integrated Autism Service will bring together specialist staff including psychology, speech and language therapy, occupational health and nursing. There will also be community teams who will provide one to one support, particularly for adults who are not eligible for social care services.
- Earlier this year we launched our Learning with Autism Programme for primary schools, which raises awareness across the whole school community. We are now working on programmes for early years, secondary schools and further education.
Register of persons with autism
- The Social Services and Well-being (Wales) Act already requires local authorities to establish and maintain voluntary registers of disabled children, they may also establish registers for disabled adults.
- From April 2017 we will be requiring local authorities to provide us with annual data on people with disabilities who have a care and support plan, this will be broken down by age and by disability and this will include autism.
Planning for transition between children and adult services
- The Social Services and Well-being (Wales) Act is an all-age Act so addresses issues relating to transition. The National Integrated Autism Service is also an all age service. The Regional Partnership Boards have responsibility for ensuring there are services, care and support to meet the needs of all people in their local area. They will ensure there is effective partnership working between health and local authorities.
- The Additional Learning Needs Reform will introduce a new system for children and young people which will ensure equity of rights and improved transition between settings.