Friday, 9 September 2011

ACT NOW Report To Members Of The House Of Lords.

The Welfare Reform Bill is due to have it's 2nd Reading in the House of Lords on Tuesday 13th September. ACT NOW have compiled the following report and sent  it to as many members as possible:

ACT NOW (Autism Campaigners Together) (who are all parents, carers and adults living with autism) celebrated their first Birthday in July. The Core Group commenced in July 2010 and during the last 12 months ACT NOW has amassed 10,000 parents, carers and adults with autism who are actively supporting the campaign.  The campaign has also gained the support of some of the UK's leading autism professionals as well as some MPs and members of the House of Lords.

There are 13 Regional Groups on Facebook including a group in Scotland, Wales and Northern Ireland with 20 Regional Coordinators sharing the load of recording the cuts to services and provision and sharing local information. (ACT NOW website.)

One of the focal points of the ACT NOW Campaign remains the offer of an advocate or communication support for every adult with autism at the first point of contact by the Department of Work and Pensions. Being able to communicate effectively is a basic human right and it is essential that adults have an offer of support should they decide that they need it.

During the last 12 months ACT NOW have met with many politicians including Liam Byrne MP the Shadow Secretary of State for Work and Pensions, Margaret Curran MP and Jon Cruddas MP who became patron of the campaign.

If you would like to find out more about ACT NOW you can do this by contacting the administrator (Teresa Catto-Smith) via

Report for Members of House of Lords follows prior to 2nd Reading of Welfare Reform Bill:

ACT NOW (Autism Campaigners Together) believes that being able to communicate effectively is a basic human right. Anyone who has a diagnosis of autism has a communication and socialisation impairment regardless of how verbal they might appear to be.

ACT NOW has serious concerns about the Work Capability Assessment which, we believe fails to recognise all three parts of the triad of impairments which make up a diagnosis of autism. (The triad being communication, socialisation and imagination.)

Impairment: to lessen the quality, strength, or effectiveness of something.  (A communication impairment should not be confused with difficulty communicating.)

We also have serious concerns regarding the change over from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). Trials for the PIP assessments are currently being carried out. We believe that the PIP assessment requires substantial changes before its roll out in 2013/2014.

Adults with Aspergers Syndrome and High Functioning Autism have all too often had no service provision or support after leaving Children’s Services. If these adults are called upon to provide supportive evidence after an assessment they will have no evidence and no one to support their claim. * PIP trial assessment case history included.

The Autism Strategy for England ‘Fulfilling and Rewarding Lives’ acknowledges that adults with autism and their parents and carers have been badly let down by public services which have failed to recognise and respond to their needs.

“Despite the significant strides made over the last decade to reduce inequality across the UK, we know that adults with autism remain socially and economically excluded. They, and the people who care for them, have often been badly let down by public services which have failed to recognise or respond to their needs.”

The Strategy is in its infancy and it has not yet had the opportunity to fulfil any of its promises. The Strategy clearly states “change will be a long-term process”. The benefit reassessment process is being rushed into without enough thought about the long term implications for adults with autism, some of whom have had a lifetime being failed by the system. We would suggest that to continue with the assessments in their current form would be yet another example of the state failing to recognise and respond to their needs.

It is far harder to communicate effectively if your communication skills are impaired as opposed to difficult. Difficulties can be overcome, even though it might require a substantial amount of effort.  It is much harder to overcome impairment. When considering adults with an ASC, it must be remembered that it is far more difficult for the relevant professionals to address a communication disorder. The result of this means that anyone coming into contact with an adult with an ASC has to recognise their communication impairment as part of the condition they have. To respond by suggesting either the impairment doesn’t exist or is “intentional” only results in the person concerned not getting the necessary support. It is important to bear in mind that the effect of incorrect support through ignorance is the same as deliberate discrimination.

Effective Communication is vitally important when you are being asked to function in a working environment. Adults with autism have a recognised impairment in communicating. They are often unable to process non verbal communication and often fail to recognise or understand other people's emotions, as well as being unable to express their own and have substantial difficulties understanding and predicting other people's behaviour.

ACT NOW believes that the complex and specific needs of adults with autism are not being taken into consideration from the very start of the assessment process.

Reasonable adjustments must be made from the first point of contact especially as these assessments are not tailored depending on a person’s diagnosis but seek to assess the functionality of someone and whether or not they will be able to function in a workplace.

When your diagnosis underpins all forms of communication it is vitally important that effective communication is placed at the very core of every step of the Work Capability and Personal Independence Payment Assessment process. To do anything other than that is setting adults with autism up to fail and we believe is also in breach of the Equality Act 2010.

ACT NOW believes that every adult with a diagnosis of an Autistic Spectrum Condition who has to undertake a Work Capability or Personal Independence Assessment, should be offered a fully trained (autism specific)advocate at the first point of contact by the Department of Work and Pensions.

Campaigning for 'communication advocates' for all adults with an ASC is at the centre of the ACT NOW Campaign.

Both children and adults with autism can find it impossible to visualise or talk about something that they have not experienced or seen for themselves. They are unable to place themselves in shoes they have not walked in; this presents a substantial difficulty when answering questions during an assessment about fitness for work.

The Work Capability Assessment process and the assessment itself are placing adults with autism and their parents and carers under huge amounts of stress and anxiety. Adults with an ASC are being placed at a substantial disadvantage when compared to adults who do not have an ASC.

ACT NOW is being told that some ATOS healthcare professionals, who appear to have very little knowledge or understand of autism, are not allowing parents/carers to advocate for their adult children even though adults are often encouraged to take someone with them while the assessment is carried out. Whilst we would not like to speculate as to why these restrictions are being imposed, it is reasonable to conclude that they serve only to further disadvantage to adults with an ASC further.

If the aim of the assessment is to assess the functionality of a person, there is no question that the assessment must be designed to take into account the complexities of a condition like autism.  The functionality of a person with autism can alter not only from day to day but also from hour to hour. Environment plays a huge part in the ability of someone with autism to function because of the many and very significant sensory impairments that many people on the autistic spectrum struggle to overcome on a daily basis.

Just because an adult with autism might be able to make themselves a cup of tea at home does not mean that they can transfer those skills into a working environment. Children and adults with autism can find it extremely hard to transfer skills from one setting to another.  People with autism have a need for routine and can find it very difficult to cope with change, indeed change for a person with an ASC is often associated with stress and anxiety.

The need for an advocate or communication support is actually heightened if or when an adult with autism is deemed to be fit for work and placed into the Work Related Activity Group (WRAG) after completing a WCA.

The Work Related Activity Group:

‘If the DWP decide none of the ‘limited capability for work related activity’ descriptors apply to you, you will be placed in the work related activity group (WRAG).’
‘You will be expected to attend 6 work focused interviews as part of Pathways to Work. The first interview will be with a member of Jobcentre Plus staff.’
‘The purpose of the work focused interview is to discuss with you the type of work you think you could manage or would like to get into, what barriers to getting back to work there are for you and how they could be overcome.’

Adults with autism often have very rigid views of jobs which they believe that they might be able to do, without having any understanding as to what doing that job would actually mean.  Impaired imagination means that they are unable to imagine the reality of a job situation until they are actually in that situation.

Unless there is a trained advocate or communication supporter with an adult in this situation the likelihood is that an adult with autism will say that they would like to do or are able to do a job that is totally outside of the realms of their capability e.g. airline pilot. They might also agree with whatever suggestion the Jobcentre Plus staff makes thinking that this is the response the advisor wants. Further, jobs that suit people with an ASC often will require an employer to make reasonable adjustments to the role; jobs are often suggested without any regard to the possible issue of reasonable adjustments being addressed, either to what they should be or whether the potential employer would be prepared to make them.

‘Your personal adviser can look at different training courses you could go on. They may have links with employers in the area who are willing to make reasonable adjustments for someone with a mental health condition.’
‘They could help with CV writing and also advise you on any other financial benefits if you were to return to work. They can even put you forward for a condition management programme; however taking part in this is voluntary.’

It takes highly specialised people to be able to communicate effectively with adults with autism. This includes adults who have a diagnosis of Aspergers Syndrome or High Functioning Autism whose verbal abilities often mask the extent of their communication impairment.

ACT NOW has grave concerns about the mental health champions that we are hearing in place in some JobCentre Plus centres. The lack of training about autism that mental health professionals are currently receiving was a subject discussed by some of our most leading Psychiatrists and Clinical Psychologists. These professionals were part of an External Reference Group (ERG) who helped to inform the Department of Health when they were writing the Adults Autism Strategy. Their evidence strongly indicates that people supporting adults with an ASC need a thorough understanding of the condition if they are to perform their role effectively. We have no reason to believe that generic training in “mental health” is adequate for such an important role.

‘After your work focused interview you should be provided with a written action plan detailing what was discussed in the interview.’
‘Being in the WRAG is not the same as being on Jobseeker’s Allowance. If you do not get a job whilst in the WRAG your benefit will not be stopped.’
‘The next 5 interviews could either be with a personal adviser within Jobcentre Plus or with an adviser working for a charity or private company. This will depend on where you live in the country as the DWP have contracts with different agencies around the UK.’

A specialist autism advisor is necessary from the first point of contact and not once the process has started.

‘The purpose of the work focused interview is to discuss with you the type of work you think you could manage or would like to get into, what barriers to getting back to work there are for you and how.’

This will again require specialist input from people who are highly trained and specialised in autism spectrum conditions.  If this does not happen we will have people advising people who they do not fully understand who are unable to effectively speak about themselves and how their condition might impact on their chances of both seeking and maintaining employment.

ACT NOW has been told that the training within JobCentre Plus is patchy and differs from centre to centre, meaning that we are in a postcode lottery situation.

Fulfilling and Rewarding Lives: Evaluating Progress

‘Jobcentre Plus is working in partnership with external medical professionals, disability specific organisations, and service users to improve the customer service experience for people facing complex barriers through the Hidden Impairments National Group (HING).’

Why does this matter?

If adults with autism are economically active, it may help to indicate whether:

• adults with autism are able to get the support they need, through Jobcentre Plus, local service providers and support networks and when in education, to develop their skills and prepare for employment (i.e. fair access to services, support and information)
• Jobcentre Plus and other key local service provider staff are making reasonable adjustments to their services to meet the needs of adults with autism
• adults with autism are succeeding in education – and whether that education is proving an effective route into employment
• employers are becoming more open to accepting adults with autism in the workplace
• sufficient support is available within the workplace, and reasonable adjustments are being made, to accommodate the needs of adults with autism.

The Importance of Transition Planning for Adults with autism:

Children and adults with autism find transitioning periods in their life very difficult to negotiate and requires a great deal of planning and support. There has been a great deal of work done recently emphasising the importance of transitional periods in the lives of children and young adults with autism but as yet there has been very little done to help adults with life changing transitions.

ACT NOW believes that the transition from not working to seeking and maintaining meaningful employment is as big a challenge for adults with autism as the transition from childhood to adulthood. This is especially so for adults who have never worked.  These adults will require the same level of planning and support that is now given to children and young adults during periods of change during their childhood and into adulthood.

The All Party Parliamentary Group for Autism published a report in 2009 Transition to adulthood following an Inquiry into transition to adulthood for young people with autism. *

The Autism and Education Trust have also produced a toolkit discussing transitional periods in the lives of children with autism which is now an online resource for every school in the UK to take advantage of. *

The importance of transition has been recognised by the Government and is included in the Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ * and the Implementation Strategy *

Research for the National Autistic Society’s ‘Don't Write Me Off’ campaign found a third of adults with autism - that's 100,000 - live without a job and without essential benefits. Over a third of people with autism said their Disability Employment Advisor’s knowledge of autism was ‘very bad' or ‘bad' and 82% needed some kind of help to apply for benefits but few were made aware of their right to an advocate. In the worst cases parents were actively blocked from helping.

It is estimated that there are about 332,600 people of working age in the UK with an ASC but NAS research has shown that only 6% of all people with an ASC have full-time paid employment, and only 12% of those with high-functioning autism or Aspergers syndrome have full-time jobs.

Forcing adults into the WRAG will not enhance their chances of securing employment.

Adults with autism need to be given an automatic offer, on the basis of their autism diagnosis, of access to a trained advocate or communication assistant. This should to apply to all people who have an autism diagnosis, irrespective of their ‘apparent’ communication abilities.  It is essential that their communication difficulties and differences, their communication ‘styles’ and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.

We still have grave concerns about the treatment adults with autism are facing via ATOS, we are receiving very worrying testimonies and inconsistencies about both the assessment process and the assessment itself. Right now there are families living in real fear across the country, not only of the impact such assessments will have on the health and wellbeing of their adult children but also of the poverty they may find themselves in.

Many carers are losing their carers allowance because of decisions made at assessment right now.

Changes to Benefits will make life harder for many families caring for a disabled child
ACT NOW is very concerned about the reduction in support for families living with autism and other disabilities when we change over to Universal Credit. This new system has the ability to severely impact on the income of families living with autism.

At the moment anyone who has a disabled child is entitled to the disability element of child tax credit. This support will change under Universal Credit and will be provided through a disability element as part of the benefit entitlement of the entire household.

Families with a child not getting high rate care component DLA will see the current rate of £54 per week drop to £27 per week, this adds up to £1400 per year but as the rate is paid per child a family with two or more disabled children will lose far greater amounts of financial support.

We are deeply concerned about the reduction of £27 per week for those whose children get middle or low rate care component of DLA because the vast majority of autistic children get those rates. A huge proportion of parent carers will face this cut whilst already struggling financially.

Families of autistic children often face far greater costs than many; paying for therapies and interventions that are not freely available to our children, buying special food because of sensory issues and restricted diets, special clothing due to sensory issues as well as damage often caused by their meltdowns. There are all reasons why this cut will have a negative impact, it's like we are being told our children aren't quite disabled enough. Autism for many is a hidden disability, especially children and many families are close to breaking point.

ACT NOW (Autism Campaigners Together)


James is a 24 year old adult with Aspergers Syndrome, which is part of the autistic spectrum. James also suffers from Keratoconus which is a rare and degenerative eye condition.  James recently took part in a trial for the Personal Independent Payment (PIP) assessment.
The PIP welcome pack, which arrived before the assessment date, clearly stated that the assessment would last no more than an hour. What it did not state was that a 60 minute timer would be used while the assessment was being undertaken.  The assessor explained to James the test was being time managed to ensure that the professionals who will be undertaking these assessments when PIP goes live could not possibly spend an unspecified amount of time with every client.

James and his Mother explained to the assessor that when James was stressed and anxious, as he was at that time, he tended to talk for lengthy periods of time often finding it difficult to know when to stop talking.

Although it was agreed with James that if the assessor thought that they had enough information they would stop James, James found it very difficult to stop answering a question that he did not feel that he had successfully answered and to then move on to the next question. The level of James anxiety was raised considerably during the test because he was aware that he was trying to beat a clock. There are 15 areas covered by the PIP assessment. (4 mins per question).

Although the assessor did have an understanding of autism there was no understanding or awareness at all of Keratoconus so found it difficult to document how each disability impacts on James’s life. James found it hard to communicate effectively himself how both conditions impact on his life and struggled to put it into words that the two conditions overlap and have a collective impact on his life.

James’s Mother explained that James suffers from many sensory issues because of his Aspergers Syndrome and that an additional sensory impairment had made a big difference to James and the way in which he functions on a daily basis. She explained that it was almost impossible to separate the two conditions because they coexist side by side. There are many adults with autism who have a comorbid condition that exists in addition to their autism. Every comorbid will impact and interact with the autism and how that person functions.
Both James and his Mother felt that the assessment questions were often vague and the answers that were required were unable to fully reflect the complexity of an autistic spectrum condition.

Some of the questions made James feel uncomfortable because they required him to talk about things that he finds very difficult. James was asked about going out and about alone. James does not ever leave the house alone. James was asked why he never leaves the house alone and he did his best to explain that because of his added sensory impairment he finds it impossible to safely navigate himself from A to B. The assessor asked why this was. James said that he found it difficult to remember which way he had gotten to a destination and he also finds it difficult to negotiate people because he has problems with depth perception. The assessor asked why? James was unable to answer that question. He just knew that he can just never remember which way he went the last time and that people who were not around that time but who are the next time he attempts to make a journey confuses him.

James was pushed on more than one occasion to imagine doing something that he had never done before and then to tell the assessor how he would accomplish doing that thing. Lack of imagination is one third of the triad of impairments which is used to diagnose autism. James was asked if for example if he was asked to make a Journey to London how he would go about that.  This hugely raised his levels of anxiety and he started to babble and went back many years in his life in an attempt to explain where his difficulties going out alone started. James was asked to slow down his speech on several occasions.

James was asked if he understood money. James is particularly good at maths and he does understand money but James is unable to organise his own finances without a substantial amount of help from his parents. James was asked if he could balance the household finances and if he could make a list and successfully complete a family shop. James said that he always made a list before he goes shopping but that he always finds shopping difficult, although it was something that, with the help of his Mother, he was trying to do more often. The assessor said so you are able to complete a successful shop. James’s Mother said that just because James always takes a list with him it did not mean that he would have a successful shop. The assessor wanted to know why this was. James Mother explained that a successful shop depended on many factors. If the shop was busy James found it difficult to be in close proximity to other people and lots of people also raises the level of noise. Noise often resulted in a sensory overload for James. His Mother also pointed out that James was unable to push a shopping trolley because of his depth perception issues and because he had on more than one occasion managed to hit someone with the trolley. His Mother told the assessor that James actually needs a lot of support to enable him to shop at all.

There were some parts of the assessment where both James and his mother felt that if James could only try harder to do things that he found very problematic that he would be far more independent.

The physical examination could in no way demonstrate the mobility issues that James is faced with every time he leaves the house.

James’s Mother feels that had she not be on hand to help James to answer the majority of the questions James would have struggled greatly to give successful answers. Each time James realised that he was floundering his levels of anxiety were raise.

James’s Mother told ACT NOW that the assessor was particularly lovely with James throughout the assessment. This did not however diminish James’ levels of anxiety and stress and she felt that the questions were not the right questions for the assessor to establish just how James’ Aspergers Syndrome and Keratoconus impact on his daily life.

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