Below we have answered some of the questions that people with autism and parent/carers might have about the statutory guidance in England. We hope that it is helpful. If you have any other questions, you can email campaign@nas.org.uk or call 020 7923 5799.
What is the Autism Act statutory guidance?
The Autism Act set out that the Government had to publish statutory guidance for local councils and local health bodies by the end of 2010 on the actions they need to take to meet the needs of adults with autism living in their area.
As the guidance is statutory, local councils and local health bodies have a legal duty to implement it.
Where the guidance says that a local area should do something, this means that they will have to do it by law, unless they have a strong reason not to. Lack of money will not necessarily be a strong reason. If they do not follow it they can be challenged through the courts.
What does the guidance say?
- Assessment
The guidance is absolutely clear that on receiving a diagnosis of autism, adults with autism should expect to be offered a community care assessment, regardless of their IQ and where they are on the spectrum. It also says that carers can be expected to be informed of their right to a carer's assessment.
The guidance says: "Assessment of eligibility for care services cannot be denied on the grounds of the person's IQ."
- Training
The guidance sets out a number of key duties on local councils and NHS bodies on training.
The duties mean that adults with autism, their families and carers can expect that in the future, all staff working in health and social care have had some autism awareness training. You can also expect that staff in roles which have a direct impact on access to services for adults with autism – such as GPs, community care assessors and commissioners/service planners – have received specialist autism training.
The guidance also sets out that as much as possible adults with autism and parents/carers should be involved in the planning or commissioning of training.
- Local leadership
The guidance is clear that every local authority should ensure that there is a named joint commissioner/senior manager with responsibility for the commissioning of services for adults with autism.
This should help ensure that there is someone at a local level taking responsibility for developing services for all adults with autism across the spectrum and helping to ensure that adults with autism no longer 'fall through the gap' between services at a local level.
The guidance also reiterates the importance of autism partnership boards, which bring together people with autism, parents/carers, local authority staff and health staff to help plan and develop services locally.
- Diagnosis
The guidance says that there has to be a clear pathway to diagnosis in every local area.
This means that wherever you live, you should be able to access a diagnosis and you local NHS and your local authority should be able to tell you how you can access diagnosis.
The guidance also says that there has to be an appointed person in the local council leading on the development of diagnostic services.
- Development of services
The guidance says that local areas have to develop a plan for what services they provide for adults with autism. Adults with autism and parents/carers should be involved in the development of these plans.
This means that local areas now need to develop plans for the improvement of services for adults with autism.
When will things change?
Change will not happen straight away, but local councils and local NHS Trusts with need to demonstrate straight away that they are taking steps to implement the guidance.
We have launched a campaigner action, so that you can email your local council to let them know about the guidance and ask them when they will have implemented the actions it sets out. Email your council now.
What can I do if my local authority or health service is not doing what the statutory guidance says?
If councils and NHS bodies are not doing the things they should be, people will be able to challenge them in court. Challenging councils and NHS bodies through the court, however, can be extremely difficult and expensive.
Therefore, if you are concerned that your local authority or health service is not implementing the guidance, the first thing to do is complain to them directly. If you want more advice about how to complain about any of the help you get, please phone our Autism Helpline on 0808 800 4104.
If you don't want to complain, but you think that your local council or health service is not doing what the guidance says it should do, you might want to try to do something to change this by campaigning. You can email campaigns@nas.org.uk or call 020 7923 5799 for advice about what you could do.
If you have complained to the service and wish to challenge the decision, you may want to ask for some legal advice.
Unfortunately, the NAS does not have its own in-house legal department and cannot give specific legal information and/or advice to service users or members of the public. Details of where to seek specialist advice can be obtained from the Autism Helpline. Alternatively, the details of where to seek specialist advice can be obtained from the Law Society.
Is there new money to help adults with autism?
No, the statutory guidance does not come with any new money for services. There is £500,000 to pay for training materials for people who work with adults with autism.
If there is no money, why will things change?
Although there is no new money, we do expect services to change. This is because, if done correctly, local services can save money. If local services identified and supported just four per cent of adults with high functioning autism and Asperger syndrome, the outlay would become cost neutral over time. If they did the same for just eight per cent it could save the Government £67 million per year.
Although an initial cost with identification will be placed on the NHS – estimated to be around £28m for an eight per cent identification rate – the saving for local authorities would potentially be around £105m.
With health and social care being more closely integrated – because of the NHS reforms – this amounts to real savings for the NHS in the medium to long term.
What nations does it cover?
The statutory guidance only covers England.
Is there more information available?
If you would like more information regarding the statutory guidance, as well as the Autism Act and adult autism strategy, please visit www.autism.org.uk/autismstrategy