Autism Act: frequently asked questions

What does the Autism Act do?

The Act puts a duty on the Secretary of State for Health to introduce a strategy for improving outcomes for adults with autism. This will be the first ever strategy for adults with autism and will cover a wide variety of issues including health, social care, employment and training.

Crucially, the Act also puts a duty on the Secretary of State for Health to introduce statutory guidance for local authorities and Primary Care Trusts, to accompany the strategy.
This means that there will be a legal obligation on these bodies to do certain things within the strategy.

The Autism Act sets in stone some of the areas that must be covered by the guidance. These are:
a) providing services for diagnosing autism in adults;

b) identifying adults with autism; c) carrying out needs assessments for adults with autism; d) planning appropriate services to young people with autism as they move from
children’s to adult services; e) local planning to provide appropriate services to adults with autism; f) training of staff who provide services to adults with autism; g) local leadership with regard to providing services to adults with autism.
So essentially, the Act introduces an adult autism strategy, and adds legal force to that strategy, putting new statutory duties on local bodies with the aim of improving outcomes for adults with autism.

When will the strategy and the guidance be published?
The Act commands that the strategy must be published no later than April 2010. The accompanying guidance must be published no later than December 2010.

What will the adult autism strategy say?
We cannot yet say with any certainty exactly what the adult autism strategy will say. The strategy went out for consultation over the summer of 2009. The consultation closed on 15th September 2009 and the Government received over 1,000 responses.
To read the National Autistic Society’s response and a summary of our key demands, click here.
The Department of Health are currently analysing the responses to the consultation and drafting the strategy. The NAS are involved in ongoing discussions with the Government over the content of the strategy.

Simultaneously, an External Reference Group of stakeholders, including adults with autism, parents, carers, experts and professionals, has also written a response to the consultation.
The group is chaired by Mark Lever, chief executive of the NAS, and is also in ongoing discussions with the Government regarding the strategy.
The content of the strategy is absolutely crucial to the success of the Bill. For this reason, we are working extremely hard to ensure that the Government drafts a strategy which will really achieve real and lasting improvements for adults with autism.

What will the statutory guidance say?
The statutory guidance will also be consulted upon at some time in 2010, at which point its content will be decided upon. The National Autistic Society has already proposed our vision for the statutory guidance, which you can find on page 26 of our strategy consultation response.
In the above section, entitled What does the Autism Act do?, you can see a list of all of the things that the statutory guidance will have to cover, from diagnosis and care assessments, to staff training and local leadership.

What the guidance will actually say in covering these issues is still open for negotiation. But whatever it does say will have legal force, so local authorities or Primary Care Trusts who do not comply can be challenged in court.

Why is the Autism Act for adults and transition only?
When the Autism Bill was first introduced, it was drafted to improve provision for both adults and children. However, following strong commitments from Ministers, regarding the data collection and provision for children with autism, we were happy for the clauses relating to children to be removed.

The Government has committed to amending the Children and Young People’s Plans (CYPPs), which are the key strategic planning tool for local authorities, as the Bill had suggested.

Through a different Bill, called the Apprenticeship, Children, Skills and Learners Bill, the Government will place a new legal duty to ensure that local areas collate and share data on disabled children as part of their CYPP needs assessments and include children with autism in their plans for children's services. Ministers also made a commitment that the statutory guidance that accompanies these duties will state that autism must be specified as a specific category on these registers.

For this reason, we were happy for the children’s elements of the Autism Act to be removed, as we were satisfied that they were being met in other ways.
What nations does the Autism Act cover?
The Autism Act is an England only legislation. However, there are policy initiatives taking place in the other UK nations including the ASD Action Plan in Wales and an Autism Bill in Northern Ireland.

What does the Autism Act mean for me, as an adult with autism, a parent or a carer?
The passing of the Autism Act will not mean immediate improvements for you as an adult with autism, a parent or a carer. As explained above, the Act serves to ensure that no matter what the outcome of the General Election, an adult autism strategy and statutory guidance will be published in 2010. You will begin to notice the effects of the legislation once the strategy and guidance have been introduced.

We are working hard and are determined to ensure that we get the best possible strategy and guidance, which will make a huge difference to the way in which services for adults with autism are delivered at a local level.

Once the strategy and guidance are published, local bodies will have new duties placed upon them to improve their autism services for adults with autism in various ways (outlined above). Local bodies who do not comply will be breaking the law and will therefore be able to be legally challenged.

It is important to point out, however, that the Autism Act does not give you new rights. Your right to have a diagnosis, an assessment or a service will not be changed by the Act. Instead, the law will work by giving new duties to the bodies that provide these services, thus ensuring that such services will be available to adults with autism.

Sandie

The Guys

Social care reform and the future of disability benefits

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The Government's Green Paper on social care reform, published last month, mentions the possibility of moving some disability benefits from being a cash benefit and incorporating it into social care funding, administered on a person's behalf by a local authority.

The NAS will be responding to the Green Paper. We will produce a summary of how the Green Paper proposals could affect people with autism.

Tell us what you think about the Green Paper proposals

We want to know what you think of the possibility of Disability Living Allowance (DLA) being integrated into social care funding. This will inform our official response to the Government.

To let us know your thoughts, email policy@nas.org.uk

What we think

DLA in its current form, or elements of it, is a crucial benefit for many people with autism and their families. Integrating DLA into local authority social care funding would have a profound effect on those people. We have serious concerns about the possibility of such a policy being introduced.

Many people with autism and their families rely on the money they receive from DLA, and to abolish DLA in its current form would have disastrous consequences for these groups. DLA is a non-means-tested, cash benefit, with no restrictions on use, introduced to help disabled people to cover the additional costs incurred by having a disability. Those additional costs still exist. The Green Paper does not make clear how people with disabilities would be expected to cover costs under an alternative system.

We also have concerns that people with autism and their families who have traditionally struggled to access local authority support would have similar problems accessing any new support paid for with DLA, but at the discretion of the local authority. We could experience a 'postcode lottery' based on local decision-making, and are concerned that some people with autism would miss out.

Furthermore, integrating DLA into local authority funding seems contrary to the Government's personalisation agenda, as it would be taking control over spending away from individuals.

The other side of the argument is that some people who receive Attendance Allowance and DLA are already financially well off. In an environment in which local authorities are cash-strapped and using eligibility criteria to provide care to only those with the very highest support needs, perhaps this money could be better spent on making sure that lower-level services are available to those who need them?

Further information

Here are some points to consider:

• This is a Green Paper at present. This means that it is a proposal by the Government which will be consulted upon and debated. It is not legislation. The consultation period runs until mid-November 2009. At the NAS, we understand that the way the Green Paper has been reported on some websites may lead people to assume that after the consultation period, their DLA will stop. This is not the case. If you get DLA or Attendance Allowance at the moment, we would seek to reassure you that there is no immediate threat to your entitlement within, or at the end of, the consultation period. Any changes, if any are made at all, could take years to come into force.
• The Green Paper refers to 'disability benefits'. This is often taken as referring to Attendance Allowance and the care component of DLA (the mobility component is usually left out of this definition). The focus of the Green Paper though, is far more on Attendance Allowance than DLA. The inclusion of DLA is hinted at rather than made explicit, but we will monitor the situation closely to establish any proposed changes to DLA.
• The Green Paper consultation ends in November 2009, and will be followed by a White Paper before it can begin the legislative process. Therefore, there is very little chance that we will see legislation before the next general election. A new government formed after the election may have different ideas.
• There is currently no legislation, or even guidance, about what DLA or AA should be spent on. It would, therefore, be a major U-turn by the Government if they were to stop DLA and Attendance Allowance being cash benefits. If Government attempted to make this change, it would undoubtedly face strong opposition from individuals, organisations, and some politicians. It could also be challenged in the higher courts, quite possibly the European courts.
• The Green Paper mentions protection for existing DLA/Attendance Allowance recipients and this is a characteristic of benefit changes. 'Transitional protection' is quite common and means that if a benefit is amended or phased out, existing recipients of that benefit retain their entitlement to it. Again, though, this is something we will monitor closely.

Apply for an e-befriender today

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If you or a member of your family has autism or Asperger syndrome, an e-befriender can provide you with regular online support and social contact.

Our e-befrienders exchange emails with you or another member of your family, chatting about things that interest or concern you and offering a friendly, supportive link with the wider community.

We take the time to match you with an e-befriender you have something in common with.

Apply for an e-befriender

Applying for an e-befriender is easy. Email e-befriending@nas.org.uk and we'll send you an application form by post or email. Please tell us your full name and address if you want to receive the application form by post. We can guide you through your application over the phone if you need us to.

Our e-befriending service is web-based, so you will need to be able to use the internet to make contact with your e-befriender. You can live anywhere in the UK as all correspondence is online.

Once you have completed an application form, we will send you a link to our e-befriending site where you can register your details, choosing your own username and password.

Befriending

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Who can have a befriender?

"Having a befriender has been brilliant. I get a chance to spend time with my other children, as well as a chance to get a precious few hours to myself."

Anyone who is affected by autism or Asperger syndrome can apply to have a befriender:

• adults and children with an autism spectrum disorder
• siblings
• mothers and fathers.

Although we cannot guarantee to find a befriender for everyone, if there is a scheme in your area we will do our best to match you with the right volunteer.

How does befriending work?

The National Autistic Society (NAS) recruits and trains volunteers to support people with autism or Asperger syndrome and their families. The volunteers are not experts, but they are friendly people who are willing to learn and who would like to do something to help.

If you have a befriender, the NAS will pay for the volunteer to travel to your home or wherever you decide to meet. Any other expenses are normally met by the family.

"It is such a relief to us that she has someone understanding who is more of her own age to talk to."

"His befriender is like a big brother to him, and they do fun things together that a teenager doesn't want to do with his mum."

What do befrienders do?

Befrienders spend a few hours a week with a person with autism or Asperger syndrome or their families. We match volunteers with people and their families who have something in common. A befriender might:

• be an extra pair of hands on a shopping trip
• take a child out to the park or for a walk
• go along with a teenager to a youth club or aerobics class
• meet up with an adult for lunch or to go and see a film
• spend time listening and talking to a member of the family
• offer the family a short break by spending time with a child in the home.

"I find I can relax and enjoy myself knowing that Amy is having fun with an understanding, responsible adult who is just for her."