Migration to ESA

ESA 11

Written evidence submitted by Carole Rutherford

1. Executive Summary

· The process of communicating with adults with autism is seriously flawed and no reasonable adjustments are being made to enable adults with autism to communicate effectively throughout the process.

· The literature provided by Jobcentre plus for adults with additional support and communication needs does not include anyone who has a diagnosis of autism therefore having diagnosed communication impairment.

· The assessment process even before the process has officially begun is having a negative and lasting impact on the emotional wellbeing of adults with autism.

· Adults with autism require support from the first point of contact to enable them to communicate effectively.

· The Works Capability Assessment was not designed with autism in mind. The assessment process is therefore flawed making it almost impossible for an informed decision regarding the capability of an adult with autism to seek or maintain employment to be made.

· Very little regard appears to have been paid to Section 20 of the Equalities Act.

· Correct and appropriate must be offered to any adult who is deemed to be either fit to work or who is placed in the Work Related Activity Group.

· The training and the content of the training received by the Atos assessors is a huge cause for concern.

· The roll out and continuation of these assessments should cease until Local Authorities and Health Authorities have had the time to appoint lead professionals and establish the groups that have been suggested they establish within the strategy.

Area of Interest

2.I am the mother of two autistic sons’ one adult and one child and I have been living with autism for 23 years. I am and have been a parental supporter, supporting families who are living with autism nationally and locally where I live for ten years. I have firsthand experience and awareness regarding the Works Capability Assessments process and how it is impacting on the lives of families and adults living with autism. I am an advisory group member of the All Party Parliamentary and I was a member of the External Reference Group who acted as an advisory group to the Department of Health while they were drafting the adult’s autism strategy. I was part of the Health Chapter.

I am willing and would welcome giving oral evidence to this committee as part of this Inquiry.

3.As the parent of an adult son with Aspergers Syndrome and Keratoconus which is a complex and degenerative eye condition I have many concerns about the assessment process. My son is at the moment in receipt of Incapacity Benefit I have tried to find out as much as I can about the Works Capability Assessment and the process leading up to the assessment. The only written material that I can find displayed on the Jobcentre plus website is a factsheet for c ustomers with additional support and communication needs. I had hoped that this factsheet would inform me what support was available for my son. The factsheet does not mention autism. I find it incredible that a factsheet that states that it has been produced for adults who have additional support and communication needs does not mention a condition that is diagnosed using a triad of impairments, two parts of which are communication and socialisation.

3.1 At the moment my son is only aware that he is going to have to have an assessment to see if he is fit to work through news articles that he has read and watched on TV. Many of the articles that are being printed in the papers are fairly negative and are painting people on benefits as being scroungers and people who want something for nothing. My son has become very distressed by the news articles which have added to his extreme stress and anxiety. My son is fully aware of his own limitations and his awareness of these limitations already impacts negatively on his self esteem and self worth.

3.2 Adults with autism do not cope well when they are in a continual state of flux not knowing what is going to happen to them and not knowing when. The anxiety of not knowing when or what will happen during an assessment is having a negative impact on my son’s emotional wellbeing and is exacerbating all of his other anxieties and his OCD tendencies. My son has asked me to find him someone to speak to about his increasing levels of anxiety. This is however not as easy as it might sound because my son has an IQ over 70 which have thus far ruled him out of services and provisions in our Local Authority.

3.3 My son requires help in all areas of communication both written and verbal and this support will need to be offered in advance of the whole assessment process.

4. I do not believe that the Works Capability Assessment was designed for adults who are on the autistic spectrum. I have huge concerns about the assessment which is by its design a tick box assessment from which the adult scores points towards their capability to seek and maintain employment. I do not believe that that Works Capability Assessment if fit for purpose to be used as a tool to measure the works capability of adults with autism.

4.1 Autism is not always a standalone condition. There are many co morbidities that go hand in hand with autism. Adults with autism can struggle to understand their own condition and any co morbidities that they have. My son is one such adult and despite his high IQ has huge problems communicating effectively. Stress and anxiety both impact on my son’s ability to communicate. His literal understanding of both written and spoken communication impairs and there is often a deficit of shared meaning and understanding between my son and the person who is trying to communicate with him.

4.2 Adults with autism may also have other none related medical conditions as well as their autism. My son has a serious visual impairment which greatly impacts on my son’s many sensory issues associated with his autism. We have been told that my son is one in one million people who will have a diagnosis of an Autistic Spectrum Condition and Keratoconus. The two conditions do not sit well together and have had a profound effect on my son’s life and seriously impact on my son’s capability to carry out basic life skills. To date we have found no one other than Mr Jordan, who as well as being an optician specialises in the perceptual problems experienced by those on the Autistic Spectrum, who understands the impact that having these two conditions have on my son’s life. Who will be able to provide supportive evidence detailing the impact that these two conditions have on my son’s life should he need to provide it?

4.3 There are huge question marks hanging over the training and the quality of the training that has been received by the Atos professionals who are carrying out the Works Capability Assessments. Autism is complex condition and one that requires a considerable amount of autism specific training over a long period of time before the complexities of the condition can be fully understood. It can take months and even years before a diagnosis of autism is given. The diagnosis is often given by a team of people who have all been specially trained in the field of autism. It is therefore difficult to believe that one distance learning module can in any way reflect the complex and specific nature of autism and enable an assessor to make an informed decision about the person they are assessing.

4.4 I feel that very little regard has been paid to the Equalities Act and in particular section 20 of the Act which speaks of making reasonable adjustments for anyone who has a disability. I have not heard of any reasonable adjustments being made for adults with autism who have a recognised communication and socialisation impairment. Although adults are in some areas are being advised to take someone with them for their assessment, the people who are accompanying the adult usually a parent or carer, is not being allowed to help the adult to communicate.

4.5 In order to qualify for ESA in a work-related activity group the adult being assessed has to gain more than 15 points. Making oneself understood is covered by a physical descriptor, descriptor 6. This makes no sense at all to me. The Guidance given to the assessor must include adults who have impaired communication due to a non-physical disability such as autism or a learning disability otherwise how are these needs going to be assessed?

4.6 The part of the assessment for understanding and comprehension falls under descriptor 7 which is again a physical descriptor and therefore in no way take into account anyone who had autism which is not diagnosed as a physical impairment.

4.7 If my son is going to be assessed for his capability to work I think that that assessment should reflect his condition and how it impacts on his life.

5.0 I find it difficult to accept that an informed decision can be reached regarding the capability of an adult with autism to seek and maintain employment using an assessment that does not have descriptors that reflect the condition. If my son is going to have his capability to work assessed it should be done using an assessment that was designed with autism in mind.

5.1 I believe that the assessment process must be taken into consideration the history of the person who is being assessed. Many adults with autism have been failed throughout their childhood and have never been able to access services and provision that might have enabled them to actively seek and maintain employment. My own son has not been seen by any autism specific professionals since being signed off by Children’s Services when he was 16 years old. My son will be 24 in July of this year. A failure by the system to meet the needs of children and adults with autism has resulted in limiting their capacity to do many things including seeking and maintaining employment.

6. I have grave concerns as to who will be able to support adults who find themselves in an appeal situation having had no access to support, services or provision for many years. Who will be able to provide supportive evidence for these adults?

7. The outcome of the migration process is likely to have a profound effect on some adults with autism who find themselves being declared fit to work or placed in the Works Related Activity Group. There is a dearth of understanding and qualified professionals nationally who can support adults with autism. Adults who are deemed to be fit to work or placed into the Works Related Activity Group will need a considerable amount of support to adapt to a significant change in their lives. Adults with autism often find change very difficult to negotiate and cope with. The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has yet to impact on the lives of adults with autism. Local Authorities are still getting to grips with the strategy and the implications that the strategy has for them. Cuts are being made right across the Local Authority and Health Authority spectrum and there is a sense of hopelessness within the autism community that the changes that were both much needed and long overdue will not now happen without some considerable lobbying from the community itself. Questions are being asked about what support if any is going to be available for adults with autism, especially those who have Aspergers Syndrome and High Functioning Autism if they are deemed to have the capability to work.

7. 1 Very little if any thought appears to have been given to adults who find it difficult to cope with uncertainty. When rolling out an assessment that is meant to be assessing the capability of a person to work, I would have thought it best practice to first of all take into consideration the nature of the condition that the disabled person has, and how they are likely to be affected by the news that they will have to have an assessment. No regard appears to have been given to the way in which an adult with autism in particular might react to this news and how it might affect their emotional wellbeing. Uncertainty creates anxiety and stress and the longer the uncertainty remains the greater the level of anxiety.

8. I believe that the roll out of the Works Capability Assessment has been very badly timed for adults with autism many of whom are isolated and unsupported within our communities, who have yet to be identified and added to the data which Local Authorities should now be collecting in line with the Autism Act. Given that Professor Harrington is in the process of completing his second review of the assessment process, and that many people have voiced their concerns about the assessment process being flawed. I also understand that three national charities that were assisting Professor Harrington with his review have now totally disassociated themselves with the review. I have many concerns that Local Authorities and Health Authorities have not had the time to appoint lead professionals and establish the groups that have been suggested they establish within the strategy.

9. Recommendations

· The literature available through Jobcentre Plus must include adults with autism who have a diagnosed communication impairment.

· Every adult with autism must be offered an independent advocate or communicator to enable them to communicate effectively thought the entire assessment process. This offer must include adults who have a diagnosis of Aspergers Syndrome or High Functioning Autism.

· The Works Capability Assessment should cease until the Adults Autism Strategy has had the opportunity to be taken on board and embedded in Local Authorities.

· Any assessment method which is assessing the capability of an adult with autism must reflect the complex nature of autism.

· All assessors must receive appropriate and on-going autism specific training which covers autism and its many co-morbidities, and how autism can present. The training should be delivered by an appropriate and accredited trainer.

· A past history and as much information about the adult as can possibly be obtained should be included in the assessment process to ensure than an informed decision about that adult is reached.

· Supportive evidence provided by parents and carers where an adult has not been in receipt of provision or serviced should be admissible and should be included in relevant information about the adult.

· A lack of service provision and support for an adult does not mean that that adult is without need. This is a more a reflection on the lack of services and provision available to adults with autism than the adult themselves. The lack of service provision and support for adults needs to be recorded.

April 2011