ACT NOW (Autism Campaigners Together) are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. Everyone of the ACT NOW core group and our Area Coordinators live with autism 24/7.
ACT NOW is fighting the cuts to benefits, the benefit assessments, services and provision on the autistic community.
We currently have over 10,000 supporters for our campaign and the number continues to grow on a daily basis.
We have 14 Regional Groups, including a group in Scotland, Wales and Northern Ireland and 20 people coordinating those groups.
We are being supported by 44 autism groups and organisations all of whom support families living with autism and adults with autism here in the UK.
Our Campaign for advocate communicators/supporters for adults with autism who have to have a Work Capability or Personal Independence Payment, has the support of 20 MPs, 6 members of the House of Lords and several autism professionals.
ACT NOW asked users of Facebook groups, pages and our blog and website to share their experiences of the Work Capability assessment. All information was used with consent in order for us to submit our evidence, which was collated by the campaign manager (Carole Rutherford) and edited by the campaign administrator (Teresa Catto-Smith):
Question 1: Have you noticed changes to the WCA process as a result of the Year 1 recommendations? If so, what are these changes?
A. Process has improved
B. Process has broadly stayed the same
C. Process has got worse
D. Not noticed / not sure
Answer
A B C D (delete as appropriate) and provide any written comments …
The people who have contacted ACT NOW believe that despite the changes made to the WCA process as a result of the year one recommendation there has been very little (if any) improvements as a result. Although some people told us that the process has broadly stayed the same, others feel that it has become worse.
10 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review
Further work needed
The Year 2 review is engaged in a programme of work identified during the Year 1 review, but which that review did not have time to consider in detail.
If recommendations from Year 2 are accepted and implemented they, in combination with the Year 1 recommendations, should help further improve the WCA process. However, this is a continual process of improvement and there are three further opportunities after this year to make further positive changes.
Question 2: Are there further areas of work that you think should be added to the programme of work for Year 3? If so, what should these consider?
A. Major areas of work required
B. Minor areas of work required
C. No more areas of work required
D. Don’t know
Answer
A B C D (delete as appropriate) and provide any written comments …
The whole process of the WCA needs to be revised and reassessed for adults with autism.
While constantly changing the WCA may make it confusing for claimants, representative groups, those delivering the system (both Jobcentre Plus and Atos Healthcare) and policy makers, it is currently a nightmare for adults with autism. The process is confusing and does not work for adults with autism because they have a communication and socialisation impairment. The assessment process is often carried out be people who do not fully understand how these impairments impact on the adult’s ability to communicate with them no matter how verbal they might appear to be.
All forms of communication are affected by autism and that includes written communication. There is a lack of autism friendly information to help adults with autism to understand the process. They do not understand the intention behind the WCA and do not understand why they achieve a particular result because they find the whole process confusing and stressful.
Whoever guides an adult with autism through the WCA process must have a good understanding of autism and must be able to communicate effectively with that adult. This includes adults with Aspergers Syndrome who often present as being highly verbal but who can experience significant difficulties in both expressive and receptive communication and organisational memory.
All contact with an adult with autism must take place when there is someone present to help the adult to communicate effectively and to ensure that the adult has correctly understood the information being given to them.
Simply explaining any process to an adult with autism does not mean that they have understood what is being said to them, because of the problems with communication it is unlikely that an adult would say that they have misunderstood the information. Even if they were asked outright if they had understood what they had just been told and they did not, the likelihood is that they would say that they had understood. Such is the complex nature of autism.
Adults with autism can often find taking responsibility for something that is expected of them daunting and many adults with autism will require support to enable them to do so.
Many adults with Aspergers Syndrome and High Functioning autism have been failed by the system and a great number of these adults are living unsupported and hidden within our communities. Many have had no provision or services after leaving Children’s Services. Asking these adults to gather corroborative evidence to support their case will result in a significant rise in their levels of anxiety. Unless they have the support of an advocate communicator or a support worker these adults will have no idea who they need to approach to find supportive evidence.
It can also take months to access an autism specific professional and it is our understanding that it is not possible to put the WCA process on hold for months while an adult with autism sets about finding supportive evidence about their condition and how it impacts on their lives.
Adults who are required to produce supportive evidence must be given access to a suitably qualified autism professional to enable them to provide any corroborative evidence about their condition that they are required to supply Atos with.
Constantly changing the WCA may make it confusing for claimants, representative groups, those delivering the system (both Jobcentre Plus and Atos Healthcare) and policy makers. Whilst there is a need to make things better if they are not working as well as they could, there is also a need to be able to assess the impact of the changes being made and ensure that their impact is positive and as envisaged.
Question 3: At what stage should we stop making changes to the system and let the changes already being made bed in to ensure they are having the desired impact?
A. Don’t stop making changes until the process is considered theoretically perfect
B. A few more changes are needed, but then pause to see their impact
C. After Year 2 changes it will be time to assess what impact changes to date have had before making more
D. Don’t know
Answer
A B C D (delete as appropriate) and provide any written comments …
Despite new scripts and letters having been designed to improve the telephone and written communications for WCA claimants, the leaflet that is currently available via Jobcentre Plus for anyone who has additional communication needs does not mention autism.
Anyone with a diagnosis of autism has a communication impairment. The lack of written information that is presented in a way that is easy to understand for adults with autism must be addressed.
Introductory telephone calls are not always a suitable medium for people with ASCs, many will not answer the telephone. Unexpected telephone calls can raise anxiety and stress levels if the adult is not expecting a call especially if there is no one with them to help them to communicate.
Autism affects all forms of communication verbal and none verbal the ESA50 and ESA50A questionnaires are proving to be extremely difficult for adults with autism to fill in without the support or someone who has a good understand of autism and the adult.
Adults with autism often take both verbal and written communications literally and are telling ACT NOW that the form does not allow them the space to go into the detail which they would like to be able to do about their condition. They feel that the questionnaire does not in any way reflect their condition and complex needs.
ACT NOW has heard from adults who have supplied detailed information with their questionnaires only to be told that the information they have supplied is inadmissible. This is why adults with autism must have the unconditional offer of an advocate at the first point of contact by JCP.
In the report that was published in November 2010 ‘An Independent Review of the WCA’ The report states that ‘46 per cent of claimants found the questionnaire difficult or impossible to complete, with this increasing to 57 percent for people with mental health conditions. Nearly half the claimants received help in completing the questionnaire, but around three in four people with problems speaking English or literacy problems needed help with it.’ Adults with autism do not fit into any of these categories - ACT NOW is being told on a daily basis how difficult adults are finding these questionnaires to fill in.
It is often left to the person with autism to ask for additional help and the fact that they have impaired communication skills means that they often have real issues communicating their need for assistance.
Adults with autism need to be given an automatic offer, on the basis of their autism diagnosis, of access to a trained advocate, supporter or “communication assistant” at the first point of contact by the Jobcentre Plus. This must 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. Without an automatic offer of support adults with autism are at risk of being discriminated against from the very beginning of the process.
The process is very much a postcode lottery at the moment with some areas and professionals having received more autism awareness training than others. The adults and parents and carers who have contacted ACT NOW have stated that even when the professional involved have had autism awareness training it would appear that the training has been basic autism awareness training. Autism is a complex condition that requires specialist training.
11 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review
The face-to-face assessment
1. Much of the criticism about the WCA seems to relate to the face-to-face assessment carried out by Atos Healthcare on behalf of DWP.
2. Critics of the face-to-face assessment argue that it is impersonal and mechanistic and that claimants do not recognise themselves in the reports generated at the assessment. The Year 1 review also highlighted how the face-to-face assessment often drives the process and influences Decision Maker’s thinking, rather than being seen as a composite part of the evidence supplied by the claimant.
3. The Year 1 review therefore quite rightly recommended putting the face-to-face assessment in its proper place in the WCA process by placing Jobcentre Plus Decision Makers back at the heart of the process and ensuring that they have a range of information with which to make independent and considered decisions.
Question 4: Does the Year 1 recommendation go far enough in placing the right emphasis on the face-to-face assessment?
A. Does not go far enough – still too much emphasis on the face-to-face assessment
B. Balance between the face-to-face assessment and the rest of the process now about right
C. Goes too far – now too little emphasis on the face-to-face assessment
D. Don’t know
Answer
A B C D (delete as appropriate) and provide any written comments …
Face to face assessments in an alien environment are proving to be a terrifying experience for adults with autism. Communicating with people whom they are not familiar with can be extremely stressful for someone with autism. Adults with autism do not always behave in a manner which an untrained professional would accept as being someone who is stressed and anxious.
It is not unusual for a a person with autism to exhibit extreme stress and anxiety both before and after an event while not showing the extent of their anxiety during a stressful time for them. A stressed adult with autism could provide an assessor with an answer that they believe the person asking the question wants to hear. This does not mean that it will be an accurate answer to the question being asked.
A very important factor is that adults with autism do not always understand themselves how much their disability impacts on their lives and although we realise that this makes an accurate assessment even harder to obtain it is a factor that we believe should be duly noted.
The WCA is about functionality and not diagnosis or specific condition and disabilities. However unless an assessor is suitably and appropriately trained to understand autism they cannot hope to understand that the functionality of an adult with autism can fluctuate from hour to hour depending on the stresses in the life of that person.
We understand that the training the Atos Assessors receive in autism is in the form of a self directed module compromising of a DVD on autism and learning disability. We firmly believe that autism is such a complex condition that impacts so differently on every person that the training Atos assessors currently receive is highly inadequate.
Many adults have learned that the quickest way to escape from an experience or environment that is causing them great distress is to supply an answer to a question that will not lead to another question. Without having an advocate or someone who knows the adult well to facilitate communication the adult with autism could well be answering questions inaccurately simply because they want the questions to come to an end.
1. The Atos Healthcare face-to-face assessment still has a role to play in the process and so we need to ensure that this is operating as fairly and effectively as possible. To do this it would be helpful for the review to move beyond anecdotal evidence about individual bad experiences of the assessment to having more robust evidence about where any problems lie.
Question 5: Do you have any robust evidence about the face-to-face assessment processes and outcomes which will help us make recommendations for future improvements?
Answer
Please provide any written comments …
ACT NOW knows of 12 adults with Aspergers Syndrome from one Authority who were all deemed fit for work after having a WCA. We also know of 8 adults in another Authority who were also deemed fit for work after a WCA. We have also drawn on the experience of the face to face assessments that other adults with autism have supplied us with.
The people who support adults with autism and parents and carers have told ACT NOW how disgusted they were by the face to face interview process. There appears to be no consistent approach to the face to face interviews. It differs greatly from area to area. Some adults with autism have had to endure the WCA process twice in one year.
One adult told his parents that he would rather die than have to ever have another Atos assessment.
Some Atos assessors would not let parents and carers into the assessment room with their adult children.
Some assessors did allow parents and carers or supporter in with the adult but then refused to allow them to help the adult to communicate effectively.
Some assessors did allow the parent or carer to contribute to the process and allowed them to communicate or assist their adult child to communicate effectively.
Parents, carers and supporters from all over the UK have told ACT NOW that their assessor appeared to have a very limited knowledge and understanding of autism.
One assessor commented to an adult with autism that he ‘looked like a normal young lad’.
The one thing that we have been consistently told is that the assessors appear to doubt the validity of the disability because the adult does not look disabled.
One assessor became fixated by the way in which an adult with Aspergers Syndrome walked into the room that they spent much of the assessment time trying to undertake a physical examination to see why the adult was walking in that manner. It is not unusual for someone with Aspergers Syndrome to be poorly coordinated, or have an odd or bouncy gait or posture, poor handwriting, or problems with visual-motor integration. The assessor was clearly unaware of this.
One adult who was severely traumatised by the experience was told by the assessor that they could not be anxious because they were not rocking back or trembling during the interview.
One of the most popular questions that the adults were asked was if they have friends. Adults with autism often struggle with the concept of a friend. One adult answered yes that they did have a friend when in fact the person to whom they were referring is actually their paid support worker.
People with autism often interpret questions is a very literal way. Asked if they could go shopping one adult answered yes, however their parent intervened stating that her adult child was not able to go shopping alone. The parent told the assessor that even with someone with them her adult child would only go to shops where they sold items that were of interest to them. The assessor simply confirmed with the adult that they could go shopping.
Not being listened to even when they were allowed to speak is something that parents carers and supporters who have contacted ACT NOW have stated.
One adult was asked if they could cook a simple meal and said yes to the question when in fact they are only able to make prepare a snack where nothing needs to be cooked.
Other adults confirmed that they could also cook a meal when what they could actually do was to heat a microwave meal having been ‘trained’ to do so.
Some of the adults being assessed found the assessors difficult to understand. They also told us that they felt intimidated by the assessor and under pressure to say the right thing.
One parent told us that they were not allowed to help their adult child to communicate. Their child was so distressed in the interview room that they were unable to speak. Despite not saying a word the adult was found fit for work.
One parent was not allowed to speak for her non verbal child who was told to look at the assessor and answer the questions.
One adult with autism who was struggling to respond to the questions was told during an interview that other people with Aspergers Syndrome were able to answer the questions when they were asked so should they be able to answer the questions.
Another adult who has problems attending appointments and interviews on time because of difficulties with organisational skills and anxiety, which is a common problem for people on the spectrum, was told that other adults with Aspergers Syndrome could manage to turn up on time, so their excuse for not turning up for appointments was not valid.
Some of the adults who have contacted us have said that they had to leave the interview room during the interview because of their high levels of anxiety.
One adult was so severely stressed by the process that they had a series of absences (petit mal) during the process before having to leave the room in a highly distressed state.
Adults have told us that when they read the account of their assessment afterwards they felt that some of the answers that they had given had not been properly understood by the assessor.
Question 6: Are you aware of any concerns about the face-to-face assessment, and if so where have these been focused?
A. HCPs approach and the way they carry out assessments
B. HCPs understanding of conditions
C. The report created during the assessment and the IT supporting the assessment
D. All three of these
E. Don’t know
ACT NOW has heard numerous concerns about the way in which the assessments are being carried out.
Adults with autism have found the HCPs difficult to understand.
Some adults felt intimidated and under pressure to answer the questions
The adults themselves and their parents and carers felt that HCPs expected their adult children to answer the questions without hesitation and parents felt that this was because their children looked ‘normal'. Comments were made to parents about the ‘normal’ appearance of their adult children.
HCPs are not making reasonable adjustments for adults with autism. They do not try to alter the way in which they are questioning an adult.
HCPs are dismissive of high levels of anxiety and stress because the adult was not presenting in a way that they believe people who are anxious and stressed present.
There is very little if any understanding of the adult’s condition and very little if any understanding of the many comorbdities which can run alongside autism and how they interact and impact on autism.
Generalisations being made about adults with autism and their condition.
The report after the assessment does not always reflect the answered to the questions that the adults felt they had given during the process. Parents and carers also said this.
Answer
A B C D E (delete as appropriate) and provide any written comments … gutted
Question 7: If you have heard specific concerns about the IT supporting the assessment (i.e the Logic Integrated Medical Assessment or LiMA system), do you have any robust evidence about how this adversely affects the assessment or its outcome?
Answer
Please provide any written comments …
1. Many people still believe the Atos Healthcare face-to-face assessment will be a medical examination rather than an assessment of their functional capacity. In reality a physical examination (as carried out by a General Practitioner or similar)
13 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review
is not always carried out and criticisms have been raised about conclusions being reached despite this.
Question 8: Is there a need to present and explain the face-to-face assessment in a different way, making it very clear to claimants what it will involve and how a functional assessment relates to work capability?
A. Urgent need to present and explain the face-to-face assessment in a different way
B. A need to present and explain the face-to-face assessment in a different way
C. Not sure whether there’s a need to present and explain the face-to-face assessment in a different way
D. No need to present and explain the face-to-face assessment in a different way
E. Definitely no need to present and explain the face-to-face assessment in a different way
The face to face assessment for adults with autism is simply terrifying. It is difficult to successfully explain how distressed, anxious and in some cases suicidal these adults are feeling prior to the assessment.
Communicating successfully with people whom they have never met and whom they are not familiar with, in environments that are often inaccessible to the adults because of their many sensory issues, is disabling effective communication.
Adults with all forms of Autistic Spectrum Conditions (this includes Aspergers Syndrome) should have the option of having their face to face assessment by a professional who knows them personally.
Failing this adults should only be assessed by a professional who has been specifically and appropriately trained to understand autism and its many facets and who is able to communicate effectively with the adult.
Answer
A B C D E (delete as appropriate) and provide any written comments …
Other comments
1. As stated in paragraph 14 this call for evidence deliberately asks more specific questions than the call for evidence last year. However, people may still wish to submit more general evidence and suggest specific changes that would make a positive difference.
ACT NOW believes that the assessment process in its current form does not reflect the complex needs of adults with autism.
We are aware that there will soon be new descriptors for the assessment and we eagerly await the new descriptors and hope that they will go a long way nearer to reflecting the complexities of autism and how it can impact on the lives of adults with the condition.
Being fit for work is not the same as being ready for work. Because so many adults with autism have been failed by the state, often throughout their childhood, a large number of these adults will in no way be ready to work. There is now a great deal of evidence about the failure of the state education system and children with autism. Even for adults who do not have a learning disability the skills that they will require to actively seek and maintain employment will take a long time to learn and must be supplied to them by professionals who have the knowledge and expertise in autism to do so.
ACT NOW has been told by several people that the groups who have been charged to supply the work choice and work programme for people with autism have very little or no expertise in working with autism, with some of the groups involved having received no autism specific training. ACT NOW finds it difficult to imagine how any group can successfully work with adults with autism without a good overall understanding and knowledge of their condition.
Adults with autism will require a lengthy period of transition between not working and even seeking employment. Successful transitions have to be planned and the person with autism must be supported during the process of transition. The importance of transitional periods in the lives of children and adults with autism was the subject of an All Party Parliamentary Group for Autism report on the importance of transition and successful transitioning for children and adults with autism is also documented in the adults autism strategy ‘Fulfilling and Rewarding Lives’
If adults with autism are found to be fit for work they will almost certainly not be ready for work. Adults with autism and their parents are carers are telling ACT NOW that there is no process in place where support is given to adults who find themselves in the WRAG and in the position of having to record their efforts to find work and to actively seek employment. Many adults with autism are simply not able to do this. They do not possess the organisational skills or the effective communication skills to do so.
We are greatly concerned that many adults with autism will find themselves being subjected to sanctions because their disability impacts on their ability to carry out the procedures that being placed in the WRAG will require them to do.
ACT NOW has heard from adults with autism, parents and carers who have requested a home visit while the WCA is carried out. Despite providing supportive evidence from GPs, Consultants and Support Workers a home visit has not been allowed.
Adults have told us that despite including supportive evidence from a range of professionals with their ESA 50 questionnaire, following their assessment assessors are requesting more supportive evidence.
Question 9: What one thing would you change about the WCA to make it operate more fairly and effectively?
Answer
Please provide any written comments …
We asked our supporters What one thing would they change about the WCA to make it operate more fairly and effectively?
They were quite emphatic with their response which was that there are too many things wrong with the WCA to name just one that would make it fairer and more effective for adults with autism. However the vast majority did agree with the following suggestion that we put to them:
Adults with all forms of Autistic Spectrum Conditions (this includes Aspergers Syndrome) should have the option of having their face to face assessment undertaken by a professional who knows them personally. This would reduce the stress and anxiety of having to be seen by someone that the adult is not familiar with in an environment that is alien to them.
Failing this adults should only be assessed by a professional who has been specifically and appropriately trained to understand autism and its many facets and who is able to communicate effectively with the adult.
END
ACT NOW (Autism Campaigners Together) are supported by the North East Autism Consortium: “Having read the ACT NOW submission about the process of Work Capability Assessments for people with autism, I am writing to offer the support of the North East Autism Consortium and its members. I know that your campaigners have a mailing list of over 20,000 people and you have been collecting robust evidence over recent weeks. The NEAC membership of local authority/PCT managers, social care providers and families are aware of the repeated concerns about the process of assessment which seems to imply people are “fit to work”. As you know, the general consensus at our recent Regional Advisory Forum meeting was that being seen as “fit for work” does not necessarily mean “ready for work”. There is clearly a lot of work to be done in this area and the NEAC is more than happy to support groups of people who are as passionate about the future wellbeing of people with autism.” (Pam Lawrence Project Manager NEAC)
