Building on ‘Fulfilling and rewarding lives’
‘Think autism’ builds on the themes in the ‘Fulfilling and rewarding lives’ strategy from 2010. Here we set out why we are updating the strategy and what progress and changes have happened since then. We also look at the key themes in Fulfilling lives.
Some people with autism may manage well with the support of friends and family. Others – of all ages – may be struggling to manage and may need support from services. Everyone, whatever their support needs, should be “able to live fulfilling and rewarding lives within a society that accepts and understand them.” This overarching ambition was at the heart of the 2010 Adult Autism Strategy ‘Fulfilling and Rewarding Lives': treating people fairly so they are able to participate equally.
The clear vision is that:
“All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.”
We remain committed to the requirements for local areas from the 2010 Adult Autism Strategy and guidance. A summary of what this means for local authorities and the NHS is below.
This update to ‘Fulfilling and Rewarding Lives’ builds on rather than replaces these themes. It is issued pursuant to the Secretary of State for Health’s powers under section 1 of the Autism Act 2009. We will continue to monitor progress in an annual self-assessment exercise.
So, why are we updating the 2010 Adult Autism Strategy?
There are three reasons why we are publishing an update to the 2010 strategy now:
- Firstly, in line with the requirement in the Autism Act, we have undertaken a review of the Autism Strategy in 2013/14 and we need to reflect what we heard from people with autism, their families and from services in this update.
- Secondly, because a huge amount has been done to deliver the strategy and we need to take stock of this and then move forward.
- Thirdly, because many things have changed in key services since 2010. Widespread transformation programmes have been set in place across public services and new organisations have been set up who need to take action to improve the lives of people with autism. We need to take account of these reforms and how we can use them to improve people’s lives.
Progress since 2010
Since 2010, in line with commitments in ‘Fulfilling and Rewarding Lives‘, we have worked with a range of organisations to produce a comprehensive set of resources for staff in the health and care sector. These can be found in useful resources along with other related materials.
This update provides an opportunity to:
- re-state the importance of issues like health and care staff training and awareness-raising which were central to ‘Fulfilling and Rewarding Lives’ while recognising we still have further to go;
- highlight and update the resources that have been produced since 2010 which will help people to make a difference.
Changes since 2009/10
There have been major changes to many parts of the system since the 2009 Autism Act and the 2010 Autism Strategy as part of the important programme right across Government to reform public services. We need to ensure the autism strategy and statutory guidance are updated to take account of these reforms.
For example, locally, NHS commissioning is now led by Clinical Commissioning Groups (CCGs), supported nationally by NHS England. Local authorities have taken on important public health responsibilities for their local communities. Subject to Parliament, the Care Bill will make major transformations to local care and support. There is a much stronger focus on personalised care and on choice throughout health and care with the individual more in control of their own lives. At a local level the NHS and local government already come together through Health and Wellbeing boards to understand their local health and care needs and discuss together the priorities for their local communities. For young people, there are radical new provisions in the Children and Families Act 2014 for special educational needs and disability support and the health and social care support young people with special educational needs and disabilities (SEND) receive.
Many of these changes emphasise increased personalisation, choice and control for individuals. This is really significant for people with autism for whom personalised support that properly reflects what will make a difference to their lives is likely to be much more beneficial than one size fits all solutions designed in Whitehall.
Since ‘Fulflling and Rewarding Lives‘ was published in 2010, all public services have had to look at delivering transformational changes to improve efficiency and value for money for the taxpayer and local communities. This means new models of delivery, building new partnerships and using technology more effectively.
Reviewing the 2010 strategy
One of the requirements of the Autism Act is that we review the Autism Strategy, so, over the past year, we have run a comprehensive exercise to listen and learn about how the strategy is working. Nearly 2,000 people, including many people on the autism spectrum as well as those involved in planning, commissioning and providing services took part in focus groups, events and conferences. Over 1,100 people with autism took part in an on-line survey. Local authorities have also worked with their partners and local people to complete two annual self-evaluation exercises looking at the progress they are making for their local populations.
This update also brings renewed emphasis on involvement and awareness within the local community and on ways to look differently at support and engagement. Updated statutory guidance will follow later this year. (This is Action 1)
From this 2013/14 review, fifteen priority challenges for action have been identified by people with autism, carers, professionals and others who work with people with autism for this update.
Key themes from the 2010 Autism Strategy
These were published in 2010:
- ‘Fulfilling and rewarding lives: the strategy for adults with autism in England’
- ‘Implementing “Fulfilling and rewarding lives”’
- ‘Statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy’
These documents started the process of ensuring the needs of adults with autism were met in England and between them contained a series of fundamental building blocks for national Government, local government and the NHS. Four years on from the publication of these two documents, these building blocks remain as important as ever. The recent self assessment exercise identified that most local authorities either had these in place or had making significant progress towards implementing them. Whilst this update recognises the progress made, it remains crucial that these building blocks form the foundations of a fundamental improvement to the way in which adults with autism are supported. We continue to expect the following to be in place in every local area in England:
Autism awareness training should be available to all staff working in health and social care. Additionally, local areas should develop or provide specialist training for those in key roles such as GPs, community care assessors, personal assistants, occupational therapists or residential care workers. Organisations should seek to involve adults with autism, their families and carers and autism representative groups when planning or commissioning training.
Identification, diagnosis and assessment of need
We expect there to be a clear pathway to diagnosis in every area and local areas should appoint a lead professional to develop diagnostic and assessment services. The pathway should be from initial referral through to assessment of needs. Diagnosis should lead to a person-centred assessment of need and should be recognised as a catalyst for a carer’s assessment. Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ. Any assessment of needs should be carried out by a professional who has a good understanding of autism and reasonable adjustments made to the process to enable the adult with autism to take part fully. All NHS practitioners should be able to identify signs of autism and refer for assessment and diagnosis if necessary. They should also then be able to understand how to adapt their behaviour and communication for a patient with autism.
Local areas must follow statutory duties around transition for children with SEN, which will include most young people with autism. Protocols should be in place in every area for the transition of clinical mental health care for children with autism in receipt of CAMHS.
Local planning and leadership in the provision of services
Local areas should allocate responsibility to a named joint commissioner/senior manager to lead commissioning of community care services for adults with autism in the area. Local authorities, NHS bodies and NHS Foundation Trusts should develop local commissioning plans for services for adults with autism, and review them annually. To develop such plans, it will typically be necessary to gather information locally about:
- the number of adults known to have autism in the area
- the range of need for support to live independently
- the age profile of people with autism in the area – including those approaching 65 or above working age and the number of children approaching adulthood, to enable local partners to predict how need and numbers will change over time
Local commissioning plans should set out how the local authority will ensure that adults with autism are able to access personal budgets and benefit from the personalisation of social care. The strategy suggests that “local partners may also want to consider establishing a local autism partnership board that brings together different organisations, services and stakeholders locally and sets a clear direction for improved services.”