WCA Year 2 Call For Evidence - The ACT NOW submission.

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)

ACT NOW response to events in the House of Lords today.

After a very lengthy and vocal debate during the 2nd Reading of the Welfare Reform Bill yesterday in the House of Lords, the Coalition Government have today proved that they are far more concerned about the passage of the Welfare Reform Bill and its journey through the House of Lords than campaigners had first thought. Many of the members who took part in yesterdays debate raised significant concerns and questions about the Welfare Reform Bill, including those who in principle support the bill.

The size and importance of a Bill usually dictates its passage through the House of Lords. As the Welfare Reform Bill heralds many major changes to the lives of millions of people this Bill should have had its spot reserved in the main chamber of the House Lords for committee stage. It is essential that any Bill which is attracting as much attention as the Welfare Reform Bill is heard in the main chamber to ensure that as many members as possible can have the opportunity to speak up, ask questions and air any concerns that they might have.

At 3.30pm today the Coalition Government tabled a motion to move the grand committee stage of the Welfare Reform Bill from the main chamber in the House of Lords into one of the smaller committee rooms.

The vote went in favour of the Bill being debating at committee stage in one of the smaller rooms, which are NOT accessible to people in wheelchairs. 

ACT NOW wonders how it is even possible for the Government to be able to make such a move? They must surely be breaking the Equalities Act (2010) by failing to make reasonable adjustments for members of the House of Lords who themselves have disabilities?

Presumably the government is hoping that by moving the Welfare Reform Bill into the committee rooms it will be harder to scrutinise and for people to continue to raise concerns. There simply won't be enough space in any of the committee rooms to allow for all the Lords to participate. It also rules out interested members of the public and media being able to attend in person.

In the run up to last year’s election David Cameron made a big deal out of the importance of talking to, including the views of and listening to his voters. On this subject Mr Cameron is on record as saying "Yes this is ambitious. Yes it is optimistic. But in the end all the Acts of Parliament, all the new measures, all the new policy initiatives, are just politicians’ words without you and your involvement."

It would appear that David Cameron is no longer interested in allowing even politicians to express an opinion nor listen to them.

ACT NOW is both dismayed and disgusted by the actions of the Coalition Government and we are left in little doubt that we do not have a government of the people, by the people or for the people.

ACT NOW Core Group

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead.

Lords Hansard 2nd Reading of the Welfare Reform Bill

Here is a link to Lords Hansard text of the 2nd Reading in the Lords yesterday of the Welfare Reform Bill. Baroness Healy of Primrose Hill (column 703, second page) spoke about the impact of the proposed reforms on autistic adults and families in a speech ACT NOW assisted in preparing:

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/110913-0001.htm#110913102000436

The Bill is now at Committee Stage (date to be announced) although at the time of publication the Government was due to table a motion to move the committee stage debate into a smaller committee room rather than grand committee. Lord Freud was to table a motion to keep the debate in grand committee - a tense time for all, the Government does seem to have been taken by surprise by the number of members of the HOL coming out with grave concerns about the Bill. If the next stage is moved into a smaller committee room it means there will be less room for members to be involved, harder for media coverage and no disability access.

We will keep you updated.

ACT NOW speech in House of Lords tomorrow.

12th September 2011

Tomorrow the Welfare Reform Bill has its second reading in the House of Lords. ACT NOW was contacted by Jonathan Rutherford (who has been working closely with Baroness Anna Healy) and asked if there were two amendments to the Bill that we felt would make a difference to adults living with autism. We were also asked if there was anything in particular relating to the Bill that we would like Baroness Healey to speak about during tomorrow’s debate. 

ACT NOW has helped to draft a speech which Baroness Healy intends to make in the House of Lords during the session tomorrow. We have grave concerns about Employment Support Allowance and in particular about "claimant responsibilities" as well as our ongoing concerns about the need for better, clearer communication from JobCentre Plus/DWP and advocacy.

We understand that due to the volume of people who have requested to participate in tomorrow’s debate that the speech might have to be shortened but we are delighted that Baroness Healy has agreed to raise some of the concerns that we have about Employment Support Allowance during tomorrow’s debate. 

ACT NOW (Autism Campaigners Together) Core Group

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 act.now@btinternet.com

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.”

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113405.pdf

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. * http://www.appga.org.uk/en-gb/Report/New-reports.aspx

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. * http://www.autismeducationtrust.org.uk/resources/transition%20toolkit.aspx

The importance of transition has been recognised by the Government and is included in the Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ * http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113405.pdf and the Implementation Strategy *  http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@pg/documents/digitalasset/dh_122908.pdf

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)

*TRIAL PIP ASSESSMENT CASE STUDY

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.