A guide to The Autism Act 2009 and Statutory Guidance

Autism is...Seeing the world differently

This miniguide has been developed to help you understand the requirements of the Autism Act 2009 and related Statutory Guidance. It is a summary of Autism West Midlands’ interpretation of the guidance. We recommend you read the guidance in full. References to page numbers within the guidance have been provided.

Autism Act 2009The Act places two key duties on the Government:

• A duty to produce an adult autism strategy for England by the end of March 2010 • A duty to produce statutory guidance for local

authorities and local health bodies by the end of December 2010

Under the Act, an adult is someone who is 18 years and over.

Autism Strategy (March 2010)Fulfilling and rewarding lives

The strategy sets out the agenda for long-term change to achieve the goal of a society that accepts and understands autism. It also aims to create opportunities to help individuals on the autism spectrum to live fulfilling and rewarding lives. The strategy identifies five specific areas for action over the next three years. These are:

• Increasing awareness and understanding of autism among frontline professionals • Developing a clear, consistent pathway for diagnosis in every area, which is followed by

the offer of a personalised needs assessment • Improving access for adults with autism to the services and support they need to live

independently within the community • Helping adults with autism into work, and • Enabling local partners to plan and develop appropriate services for adults with autism

to meet identified needs and priorities.

The First Year Delivery Plan (April 2010)Towards fulfilling and rewarding lives

This sets timescales, deadlines and milestones for implementing the autism strategy. The most important steps towards delivering the strategy was creating governmental bodies which will help to steer the direction of the strategy as well as monitoring its delivery and progress. There are two key groups which govern the implementation of the strategy:

• The National Adult Autism Strategy Programme Board, providing overall programme governance • The Delivery Group, reporting to the National Adult Autism Strategy Programme Board

Autism Statutory Guidance (December 2010)Implementing fulfilling and rewarding lives

This guidance is structured into four sections:A. Training of staff who provide services to adults with autismB. Identification and diagnosis of autism in adults, leading to assessment of needs for relevant servicesC. Planning in relation to the provision of services to people with autism as they move from being children to adultsD. Local planning and leadership in relation to the provision of services for adults with autism

Key pointsThe guidance applies to England only

• This statutory guidance applies to Local authorities and NHS bodies.

Under the guidance the following are included as NHS bodies: a Strategic Health Authority, a Primary Care Trust, an NHS trust and Foundation Trusts. (pg 5)

• It has statutory status. This means that Local authorities and NHS bodies must take account of the guidance and follow the relevant sections or provide a good reason why they are not doing so (e.g. because they can prove they are providing an equivalent or better alternative). (pg 5)

• If Local Authorities and NHS bodies do not follow the guidance and cannot provide a good reason, they may be liable to judicial review or default action by the Secretary of State. (pg 5)

• Local Authorities and NHS bodies should also ensure ‘that the guidance is followed by other organisations that deliver services under contract for them. ‘

This includes organisations contracted to provide residential or day care on behalf of a local authority. (pg 8)

• The guidance emphasises that it is best practice for providers of other public services – such as employment services, police and probation - to follow it. By doing so these bodies can help improve the delivery of the services they provide. These bodies are not legally required to have regard to it. (pg 8)

• The term “autism” is used in the statutory guidance as an umbrella term for all autistic spectrum disorders, including Asperger Syndrome (pg. 10)

A. Training of staff who provide services to adults with autismGeneral autism awareness training should be available for everyone working in health and social care – not just those in frontline service delivery. The core aims of this training are that staff are able to identify potential signs of autism and understand how to make reasonable adjustments in their behaviour, communication and services for people who have a diagnosis of autism or who display these characteristics.

Specialised training for staff working in key roles – such as GPs, those responsible for conducting community care assessments, and those in leadership roles locally. The end goal of this specialist training is that, within each area, there are some staff who have clear expertise in autism. (pg 13)

B. Identification and diagnosis of autism in adults, leading to assessment of needs for relevant services

Diagnosis • Each local authority area should put in place a clear pathway for diagnosis of autism,

from initial referral through to assessment of needs. • When an adult is diagnosed with autism, the healthcare professionals making the

diagnosis should inform the adult diagnosed, and/or their carers, that they have the right to request a community care assessment. • The NHS body should inform, with the individual’s consent, the relevant local authority

adult services that a diagnosis has been made. • The individual and their family should also be signposted to information and support

about autism.

Assessment • Local authorities have a duty to assess a person who may be in need of community

care services. This assessment may be triggered either by the individual requesting it or if the local authority believes community care services may be necessary. This duty applies to people with autism • Adults who may not have a formal diagnosis of autism are still entitled to a needs

assessment • Community care assessment should be carried out by trained practitioners, and

where there are potential signs of autism, the assessment should take account of the communication needs of adults with autism. Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ. (pg14-15)

C. Planning in relation to the provision of services to people with autism as they move from being children to adults

• For young people with statements of SEN there is a statutory transition planning process which begins in Year 9 (when the young person is 13 or 14) and plans for the remainder of their school careers (often up to their 19th birthday) and their transition to adulthood

• Young people with autism who do not have a statement of SEN may instead have a Health Action Plan that covers not only medical management of their condition, but also can look at social skills and strategies to enable self-care and independent living

• Professionals working with a young person with autism approaching transition should inform the parent and young person of their right to a community care assessment and inform carers of the right to a carer’s assessment

• Professionals working with a child with autism approaching transition should inform social services that this individual is approaching adulthood and may need a community care assessment. The social services department should then formally contact the young person with autism, and their family, before the young person reaches adulthood, to invite them to receive a community care assessment

• Young people with autism – and their families and carers – should always be involved in transition planning

• For transitions to be effective, it is essential that information is passed on between children’s and adult services

• Local authorities and NHS bodies should ensure that all professionals involved in transitions for young people with autism have received autism training.

D. Local planning and leadership in relation to the provision of services for adults with autism

• Each local authority should appoint a lead professional to develop diagnostic and assessment services for adults with autism in their area. (pg 18)

• Local authorities, NHS bodies and NHS Foundation Trusts should develop local commissioning plans for services for adults with autism, and review them annually (pg24).

• 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.

• All local authorities, NHS bodies and NHS Foundation Trusts and organisations with whom they have contracted to provide services are expected to take into account the views of adults with autism and their families and carers in developing and commissioning services for adults with autism. In some cases, this may require the use of advocates to speak on behalf of adults with autism.

If you would like to speak with someone about the Statutory Guidance and how it affects you, please contact us. All contact information is on the reverse of this booklet.

About Autism West MidlandsThere are more than half a million people in the UK living with autism, an invisible, misunderstood and lonely disability. 60,000 live in the West Midlands.

We are the leading charity in the West Midlands for people affected by autism. We exist to enable all people with autism and those who love and care for them to lead fulfilling and rewarding lives.

Our passionate, expert staff and volunteers work across all age groups and abilities, providing direct support to people affected by autism.

Contact usAutism West MidlandsRegent CourtGeorge RoadEdgbastonBirminghamB15 1NU

Email:General enquiries: hello@autismwestmidlands.org.ukHelp and advice: info@autismwestmidlands.org.uk

Telephone:Main reception: 0121 450 7582Helpline: 0303 03 00 111 (Local rate number, including from mobile phones)

Website: www.autismwestmidlands.org.uk

Find us on Facebook: Search “Autism West Midlands”

Follow us on Twitter: @autismwestmids

Our vision is a world where all people on the autism spectrum have the specialist care and support they need to lead fulfilling and rewarding lives.

Registered Charity Number: 517077Registered Company Number: 1953344 (England and Wales)