Saturday, 15 September 2012
Question 8 (Organisations)
Effective communication continues to be one of the biggest issues for adults with autism, who often have complex communication needs. For this reason Act Now For Autism is committed to campaigning for the offer of an advocate to be made to every adult with autism at the first point of contact from the DWP or JCP.
The assessment process and how effective communication with autistic adults is a postcode lottery. Some areas appear to be more understanding than others. Some of those who are making contact with the adult with autism are insisting on speak to the adult even when there is a parent or carer present who has been registered as the appointee of the adult. Refusing to speak to a parent or carer effectively denies the adult with autism the right to communicate effectively.
As we have stated before adults with autism often have a method of communication which is most effective for them. For some adults that method of communication will not be via the telephone. Adults with autism have told us that they feel under intense pressure once they realise that the call they are receiving is to confirm that the process of assessment has officialy commenced. Despite the fact that what is required of them is what could be considered to be basic communication skills, adults have told us that their levels of anxiety elevated very quickly.
One adult with autism told us that during the four years he has been communicating with the DWP they have never once done what has been asked of them. Despite him and his social care team informing the DWP in writing about the adult’s preferred method of communication the DWP continued to communicate with the adult by letter. He told us that from the moment he sees the brown envelope his levels of anxiety increase and this affects his ability to function.
One adult told us that they find ‘all such people confusing’. They no longer see doctors or anyone like a doctor or professional because of the extreme stress that having to answer question places them under.
One parent told us that JCP rang to speak to her son and asked if they had received a letter informing them that the process of migration from Incapacity Benefit to ESA had begun and that they should expect to receive the ESA50 questionnaire soon. The letter had not arrived. Fortunately the parent took the call and was therefore able to deal with the fact that the letter had not arrived in a calm manner. She told us that had her son taken the call they would have been living on red alert for days.
After receiving the ESA50 questionnaire one adult told us that they started wetting the bed and they started having seizures again, something that they had not experienced for some time. The amount of seizures increased during the time that the adult had to wait for a face to face assessment.
One adult whose social worker arranged to come and speak to them about their forth coming assessment had to cancel the meeting because the thought of having to talk about what was going to happen to them during the assessment was just too much for them.
Face to face assessment
The face to face assessment will always be difficult for adults with autism and also continues to be something of a postcode lottery.
We have heard from adults who have been allowed to have an advocate present and to help the adult to communicate effectively. We have also heard from adults who have been refused the support of an advocate during their assessment.
It is essential that adults who could have the support of an advocate during their face to face assessment are allowed to do so.
There appears to be no consistency in how long it takes for a decision to be reached following an assessment. We have heard from parents and carers who are having to contact the DWP themselves on behalf of their adult child to find out if a decision has been reached.
What one thing (if any) would you change about the WCA to make the system better for people claiming ESA?
Act Now For Autism does not believe that the WCA in its current format is fit for purpose for adults with autism. We do not believe that tweaking the descriptors will be enough to ensure that the complex nature of autism is accurately assessed.
We believe that there needs to be specific descriptors for adults with autism.
Effective communication must surely underpin the WCA otherwise how can an assessor be sure that they are making the right recommendation following their assessment of an adult with autism?
What adults with autism might say is not always what they mean. They may misunderstand questions that they are being asked. They find it hard to answer questions especially if they feel that they are under pressure to produce a response to a question. They will fail to pick up on inference and assumption and all non-verbal forms of communication. For example, when asked, “Can you travel to work on a bus?”, they may say yes, but not explain that they can use only one bus route, or that they can only travel to work by bus with the help of a support worker. (and that it may have taken years to be trained to do this task) They might not think to add that if the bus is late or if the bus is not the right colour, despite it having the right number, that they would continue to stand at the bus stop waiting for ‘the right bus’ to arrive.
People with autism face problems with communication that other people who do not have the right experience of the condition would not see.
If a WCA was being carried out on someone for whom English was not their first language they would be given access to an interpreter to ensure that they were able to communicate effectively throughout the process.
The communication impairment for someone on the autistic spectrum is even more complex than simply speaking in a different language. They require specialised skills in addition to those that would be expected from an interpreter. At the moment they are not even being offered the services of a specially trained advocate at any point during the process.
It is essential that the person who is carrying out the work capability assessment can communicate effectively with the adult they are assessing. Unless the person has been specifically trained to communicate with people with autism there needs to be either someone who has to advocate for the person or someone who knows the person well who can act as an advocate.
The time lapse between the first contact made by Job Centre Plus and the actual assessment is far too long for someone with autism. We understand that some people are having to wait up to 13 weeks for an assessment. This is placing people with autism under a huge amount of stress and raising their levels of anxiety to an almost unmanageable level. Some adults are simply not coping with their levels of anxiety and are having to seek professional help and support.
This in itself is unacceptable but Act Now For Autism has heard from several adults with autism who after finally completing the lengthy process of assessment have being informed that they will be reassessed again within 4 months of the final decision being made. This is simply cruel and intolerable and needs to be stopped now!
In July 2010 Carole Rutherford co-founder of Act Now for Autism asked Tony Attwood, who is considered to be one of the world’s leading experts on autism, questions about autism and mental health issues. Carole asked about the necessity for correctly trained professional to deal with people on the autistic spectrum and how anxiety could impact on the lives of people with autism. In his response to Carole Tony Attwood said
‘We now recognise that there are actually constitutional, that is neurological reasons, why those with autism spectrum disorders are prone to mental health issues, predominately anxiety. Constitutionally they are natural worriers who find it very hard not to catastrophise panic and worry about what things are going to occur.
Mental health issues can arise due to the frustration of not knowing how to solve a problem.
The experience and expression of emotions is a major problem for such individuals which are not simply caused by the environment. However the environment can make it worse. "
The WCA is being carried out in an alien environment and is presenting adults with autism with a very real problem, one which they feel is they have no control over whatsoever. This is resulting in extreme anxiety and frustration leading to mental health problems.
It is therefore essential that the WCA not only reflects the complexities of autism and how it can impact on the life of an adult with the condition, but also that it is carried out quickly keeping the time that an adult with autism has to 'catastrophise panic and worry' about the outcome of the assessment to a minimum.
The fact that there are neurological reasons for the extreme anxiety that adults with autism suffer from must taken account of when an adult with autism beings the assessment process. To actively ignore this must surely go against the Equalities Act (2010) which clearly states that reasonable adjustments must be made for people with disabilities. The Act also states that it is it is unlawful to discriminate against disabled people yet adults with autism are being discriminated against by not providing them with an auxiliary aid, which can either be mechanical or in the form or a person, to ensure that they can communicate effectively throughout the process.
At the moment adults with autism are telling Act Now For Autism that they feel as if they are being punished for having autism and that they would rather die than have to ever endure an assessment again.
Because autism is such a complex condition we believe that it is impossible to accurately assess a person with the condition without first fully understanding how that condition impacts on their lives. The only way in which to resolve the numerous issue with the WCA and autism would be to have a specially written descriptor(s) for autism. The WCA has to take into account the many facets of the condition and make the reasonable adjustments that are necessary when trying to assess the functionality of someone with autism.
Posted by Act Now For Autism at 4:40 pm