Friday, 25 March 2011


Join ACT NOW (Autism Campaigners Together) and take part in our 'virtual march' starting on Saturday 26th March at 11am all the way through to World Autism Awareness Day on Saturday 2nd April when we will launch our new 'Marching On' video!

ACT NOW are virtually marching as part of our campaign against the proposed Welfare Reforms and WCA. We are also campaigning to raise awareness of the impact the cuts at council level and other service sectors are having on the autism community all over the UK RIGHT NOW.

ACT NOW are a core group of people from across the UK who formed their own coalition against the government cuts in July 2010. We are campaigning against cuts to vital services, welfare and support for people and families living with autism 24/7.

Our website:

Please click 'attending' and then 'share' or click on 'invite friends' and invite all your friends!


Thursday, 17 March 2011

ACT NOW will meet with Liam Byrne

The Rt Hon Liam Byrne, Shadow Secretary of State for Work and Pensions
ACT NOW has been invited to attend a meeting with Liam Byrne and the shadow welfare team on Monday March 28th. Other campaign groups have also been invited to attend the meeting.

The meeting has been arranged by Jon Cruddas (ACT NOW’s Patron) and Jonathan Rutherford. The meeting will be carried out under Chatham House rules which we have been told will allow for an open discussion and will ensure trust.

Jonathan has asked us to e-mail 3/4 key points that we would like to discuss on the day. The meeting will last for an hour and a half. It is important that we make as big an impact as possible on the Labour Shadow Team in that short space of time.

For anyone who is not familiar with Chatham House rules here is an outline of what taking part in a discussion while this rule is in place means.

"When a meeting, or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed".

While this may appear to be restricting it is the way that Ministers and MPs are used to holding meetings. It is possible to report what has taken place at the meeting but not possible to say who said what. ACT NOW's Campaign Manager Carole has personally attended meetings that have taken place under the Chatham House rule on a number of occasions and felt that she was still able to give comprehensive feedback to her own group Autism-in-Mind after the meeting.

We believe it is important to have someone sitting round the meeting table who has a knowledge and understanding of autism who can express their concerns about the Welfare Reform Bill and how it is directly impacting on the lives of adults with autism.

It is vitally important that the Labour Party not only voice their opposition to the Welfare Reform Bill but also rethink their own policy regarding the WCA. It was after all the Labour Party who brought in this assessment.

Tuesday, 15 March 2011

What may happen if Disability Living Allowance is cut - Emma's Story

Today one of our supporters and mum of 3 Emma, all three of her children are on the autistic spectrum, told us of her disatisfaction with the Daily Mirror not covering her story accurately and in full of how losing DLA will affect her family. We quite agree! Her friend and blogger has kindly helped Emma to write her full story which can be found here along with the Mirror article.

Monday, 14 March 2011

Scotland - How Cuts Affect Real People

Carers Votes Count in this Election
Everywhere you look there are stories in the press about cuts to funding and services – but what does that mean to the people who use those services?

Cuts to local budgets are having a profound impact on the lives of unpaid carers, particularly parents of children with disabilities.  This is largely hidden from the electorate.  And many of the people affected are too tired – or too scared – to hold their heads up and fight for the support they need. 

Support enables families to stay together. Support prevents crises from developing and the need for statutory services to get involved in depth.  Bring into the mix the impact of welfare reform and the drive to reduce numbers claiming disability benefits – there is a tipping point for families and children affected and we are getting closer to it.

Carers’ charities and online campaigners are working together to ensure the voices of these unpaid carers and their families are being heard and responded to during the election campaign.

The Princess Royal Trust for Carers (The Trust) and ACT NOW (Autism Campaigners Together) want to raise the profile of families affected by autistic spectrum disorders. There are an estimated 50,000 people with autism in Scotland and their care is largely provided by unpaid carers, usually parents and siblings.  

The Princess Royal Trust for Carers work with parent carers across Scotland through the network of local Carers’ Centres. ACT NOW are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Disorder in the UK.  

With a live campaign on the internet and Facebook, ACT NOW are fighting the cuts to benefits, services and provision – particularly those being experienced by families affected by Autistic Spectrum Disorders.
Carers across Scotland save the Government millions – an estimated 1 in 8 people are caring for someone in Scotland. The Princess Royal Trust for Carers, ACT NOW and other campaigning groups want to highlight the horrific circumstances faced by parent carers across Scotland.  

Not recognising and supporting these families could lead to:
  • Parents having to give up work to care for their children or just to enable them to take part in activities and events at school as numbers of personal assistants in school are cut.
  • Children not being supported in class and unable to take part and learn – leading to under achievement, behavioural issues, children being excluded from school and in turn moving into a life of unemployment and poverty.
  • Parents having lifelong caring responsibilities when young people do not achieve independence and the worry about what happens when they are no longer there to look after their adult children.
ACT NOW and The Princess Royal Trust for Carers are calling for the voice of these carers to be heard during the Scottish Election Campaign.  They are calling for existing MSPs and new candidates to lay out what they will do to ensure parents, like those outlined in the case studies below, are recognised and supported better and that children with autism have the same opportunities and life chances as their peers.

ACT NOW in Scotland have been recording the personal testimonies of people with autism and their carers who are being affected by cuts in service provision and by the Work Capability Assessment.  Part of the campaign focuses on challenging the lack of awareness that assessors from ATOS (contracted by DWP) have of autism. ACT NOW is campaigning for the rights of people with autism to have an advocate present from the first point of contact by the DWP.  They are also campaigning for greater input by carers and guardians during the assessment.

More widely, the proposed changes to DLA and the introduction of Personal Independence Payment (PIP) are sources of great concern.  Welfare reform will impact on these families in a hugely negative and life changing way.

ACT NOW are regularly hearing from parent carers who lie awake at night terrified because they don't know what will happen to their adult children, especially if their benefits and support provision is taken away, largely due to ignorance about autism. The health of carers when living with these pressures and strains daily is precarious, especially if they feel they and their children are being discriminated against and don't have a voice. Demand at Carers’ Centres across the country is increasing substantially as local cuts bite and the welfare reform agenda unfolds.  There are lots of warm words about the contribution that parent carers and unpaid carers make – this must be translated into firm commitments and actions.
Case studies

Parent in Edinburgh

Living with a very aggressive son (6). Child and Adolescent Mental Health Services have said they "don't have the resources to support them fully right now". This family is at crisis point and without help from a local charity, they probably couldn't have stayed together.

Parent in South Lanarkshire

Son's (23) Disability Living Allowance Care Component has been reduced from high to low upon review because review deems he doesn't need help to communicate, eat/drink and is not at risk of neglecting himself (amongst other things). None of that is in fact true and no professional who has had contact with this young man has been asked to verify any of his difficulties. This is despite his diagnosis and years of necessary support for these very issues. The parent is appealing but is really struggling financially to support her son as this reduction has meant the removal of her Carer’s Allowance.

Parent in Glasgow

Son (12) hasn't been in school (a specialist unit for children with communication disorders) since early February because there aren’t enough members of staff to ensure his safety. The education department has confirmed that new staff have been found, but can’t confirm when the child will start back in education again because those employees need to be trained. She has had to take legal advice because of poor communication and this has affected her ability to work.

Parent in Aberdeen

A single mum with three kids (one of whom has Additional Support Needs  and is in a special school). Her eldest boy who has Autistic Spectrum Disorder,  has been out of primary school (P6) for months because the school "can't cope" with him because of his challenging behaviour. They have had the police round nearly every day as neighbours complain and she has been advised to lock herself and her two other children away if her son "loses" it. She is at her wits end and has even asked Social Work to take her son into care. They refused as she has the support of her mum.

Friday, 11 March 2011

Friday Fun! time for a guessing game or a game of Simon Says!

Could the reply ACT NOW received below be a response to our letter to Chris Grayling about our concerns with the DWP factsheet ? how about you decide........let's hear YOUR thoughts!

Wednesday, 2 March 2011

DWP Factsheet: Support offered by Jobcentre Plus for customers with additional support and communication needs

Letter to Chris Grayling, Minister for Employment
Dear Mr Grayling

We are most concerned about the information that is being displayed on the DWP site for customers with additional support and communication needs

The Factsheet states that ‘Customers will receive a letter from Jobcentre Plus telling them that their benefit is being reassessed. Jobcentre Plus will then call the customer to discuss how this change will affect them and to answer any questions.’  Adults with autism will need to be offered support and the opportunity to access an advocate/communicator before the phone call takes place.

The Factsheet continues ‘During this telephone call the customer will be asked if they have any additional communications needs.’ Without support an adult with autism may be unable to identify their own communication needs and being unable to identify and label how their disability impacts on their life is one of the problems that adults with autism face. Therefore it is absolutely essential that adults with autism require an advocate/communicator to be present with them when the phone call is made.

We acknowledge the fact that Jobcentre Plus will support a customer’s right to have representation but an adult with autism needs to be aware of this at the first point of contact. Arrangements then need to be put into place to ensure that support is offered in the form of either an independent trained advocate or someone who the person with autism is comfortable with and who they are happy to help them to communicate effectively.

The factsheet continues by giving specific information for customers for whom English is not their first language, customers who are visually impaired and customers with hearing and speech impairments. The factsheet excludes anyone who has a diagnosis of autism which is a recognised communication impairment.

The factsheet is totally inadequate and should be withdrawn until a proper system can be put in place before any contact is made by Jobcentre Plus.

Tuesday, 1 March 2011

Letter to Archbishop of Canterbury, CofE, The Most Reverend Vincent Nichols, Head of the Roman Catholic Church and The Right Reverend John Cairns Christie, Moderator, Church of Scotland

To the Most Reverend and Right Honourable
Dr Rowan Williams
Archbishop of Canterbury

To the Most Reverend Vincent Nichols
Roman Catholic Church
To the Right Reverend John Cairns Christie
The Moderator, Church of Scotland

I am writing to you on behalf of ACT NOW Autism Campaigners Together a group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The vast majority of the ACT NOW core group live with autism 24/7. We are all volunteers living with autism while trying to ensure that the needs of our children and adults with autism are met.

The ACT NOW Campaign currently has over 8,000 supporters. We have 13 regional groups which includes a group in Scotland, Wales and Northern Ireland. We have 25 Regional Co-ordinators and our support continues to grow on a daily basis. We are also being supported by autism groups and organisations that support families living with autism and adults with autism here in the UK.

The Welfare Reforms and the Works Capability Assessments (WCA) that are currently being rolled out across the UK are placing adults with autism at a huge disadvantage. These assessments are wrapped around the medical model of disability and are in effect discriminating against adults with autism who do not have a medical disability.

ACT NOW believes that it is both cruel and immoral to subject someone with autism to an assessment which does not in any way reflect the vastness of the autistic spectrum. 

ACT NOW does not believe that any reasonable adjustments are being made for adults with autism in line with section 20 of the Equalities Act part 5.
Section 20 of the Equalities ACT - The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid.

Adults with autism are not being provided with an auxiliary aid to help them to communicate effectively.

There are now several MPs and members of the House of Lords and leading autism professionals who are supporting our National Call for Advocate/Communicators for every adult with autism who has to have a benefit review. An Advocate/Communicator would be an auxiliary aid and would fulfil Section 20, part 5 of the Equalities Act.

The WCA have been built around a model of assessment that was first introduced in the United States of America by a group called Unum, who were at one time a leading US disability insurance company.
Autism is a complex condition which is made up of three separate but very significant impairments. Anyone who has a diagnosis of autism will suffer significant impairments with communication, socialisation and imagination (which often presents as fixed and rigid thought patterns and behaviour). This makes autism difficult to ‘fit into’ any of the boxes which are usually occupied by other disabilities.

We do not seek to minimise the impact that other disabilities have but simply to raise awareness of the current plight of those who reside on the autistic spectrum and other adults who also suffer from complex conditions.
While we understand that reform might be necessary, we believe that in its present format the WCA places people with autism and other complex disabilities at a substantial disadvantage. It is not always apparent that someone with autism has a disability because autism can be a hidden disability and the needs of the person with the condition can fluctuate on a daily basis depending on their environment and levels of anxiety.

ACT NOW believes that the WCA process is fundamentally flawed and unless the present method of assessment is completely overhauled, adults with autism and adults with other complex disabilities will continue to suffer and be punished for having a disability which does not fit into the current assessment framework.

The very core of our campaign relates to how people with Autistic Spectrum Conditions will perform in assessments. Adults with Autistic Spectrum Conditions infrequently represent how their disability impacts on them accurately.

People with autism lack theory of mind which means that those with the condition lack the ability to understand how other people feel, believe, what their intentions might be, or what it might be like to be someone else. In other words they lack the ability to place themselves in someone else’s shoes. This means that the person with the condition cannot always relate to themselves having a disability and this is part of their disability. If asked what type of work they could do it is likely that an adult with autism will find it impossible to visualise themselves doing anything which they have not directly experienced. This will result in raised levels of stress and anxiety for that adult.

ACT NOW is already receiving cries for help from adults with autism who are living in fear about these assessments.

The problem is made worse by the fact that real understanding of the condition by the relevant persons is low. In some ways it is a nightmare scenario involving people who 'cannot say' talking to people 'who don’t understand'. With this mix what are the chances of getting the right result?  It is not correct that claims of understanding of ASC are high. If this was the case then 85% of people with Asperger syndrome would not be unemployed.

Works Capability Assessments are a huge concern to us because we believe that adults with autism are being denied a basic human right and that is the help and support that they require to communicate effectively.
If an adult with autism were caught up within the criminal justice system they would be given an advocate and yet adults are not guilty of any crime only that they have a unique disability which does not fit into the WCA framework.

We wrote to Chris Grayling asking him to clarify what is included in the autism training modules that have been developed by Atos Healthcare and the DWP.  We also asked Mr. Grayling if the DWP and Atos are now skills based organisations and accredited/licensed trainers?

The response that we have received from Mr. Grayling has failed to reassure us that adults with autism who are attending these assessments will be assessed by someone who understands their complex condition.
Mr. Grayling has stated in his response to us that any additional medical evidence that is presented to the Atos assessor by an adult with autism will be treated as purely secondary information. He states that clinicians do not routinely consider the impact that a disability a person has will impact on their ability to function.
Mr. Grayling states and it is unlikely that clinicians will have had any specific training in assessing disabilities in their medical training. He states that Atos assessors are specifically trained in the assessment of disability and that a medical disability analyst will be able to provide an accurate and consistent assessment of functional restrictions.

We find this statement very worrying.  Although clinicians may not have received any specific training in assessing disabilities, they are the people who often see the person with a disability on a regular basis. GPs and Consultants often know a great deal about a person which allows them to see how the disability is impacting on the life of that adult. It is also worrying that Mr. Grayling refers to medical analysts being able to assess the impact of a disability that is not a medical condition.

It is our understanding that the training that the Atos assessors have wrapped around autism is very limited and includes a DVD containing information about the condition. Autism is a vast spectrum and it requires a great deal of specialist training before the condition can be understood and accurately assessed.  It often takes years before it is possible to give a diagnosis of autism, such is the complexity of the condition. ACT NOW seriously doubts that the Atos assessors will have received in depth training that is essential before anyone can accurately assess someone with autism.

Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be seen by anyone who has expertise in autism. It is only now that it has been stated in the Guidance which accompanies the Adult Autism Strategy ‘Fulfilling and Rewarding Lives’ (December 2010) that IQ must not be used as a reason to deny an adult with autism an assessment for services or provision. Thus there are huge numbers of adults who have been denied access to assessments for services and provision, many of whom are hidden within our communities unsupported.

We believe that it is unlawful on human rights grounds to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged.  Furthermore the DWP need to be mindful of the fact that failure to provide appropriate support will further undermine self confidence and life chances of a group of people who are, without question, one of the most disadvantaged in our society.

ACT NOW believes that the welfare reform is breaking the covenant of care between people with disabilities and the welfare state, and that as a society the support that we have given to those with disabilities is being breeched.  We also believe that adults with autism are being treated less favourably because of their disability and this is a direct breech of the Equalities Act.

We would like to ask you to speak with the Coalition Government and ask them to give you an assurance that adults with autism will not be subjected to an assessment process which has not taken any of their complex and specific needs into consideration.

We look forward to hearing from you at your earliest convenience.

Yours sincerely

Carole Rutherford
Co-Founder & Campaign Manager