Migration to ESA

ESA 24

Written evidence submitted by ACT NOW

1. Executive Summary:

ACT NOW (Autism Campaigners Together) have many concerns about the migration from Incapacity Benefit to Employment Support Allowance including the Work Capability Assessment:

· Reasonable adjustments are not being made for adults with autism who have a diagnosed communication and socialisation impairment in line with Section 20 Part 5 of the Equalities Act.

· No support in the form of an advocate or communicator is being offered at the first point of contact by Jobcentre Plus for claimants with autism.

· The Jobcentre Plus factsheet for adults who have additional support and communication needs excludes adults with a diagnosis of autism. No reference to autism is made in the factsheet.

· The Work Capability Assessment descriptors do not reflect the complex nature of autism.

· Adults with autism are being inappropriately subjected to an assessment using a method that does not allow the complexity of autism to be accurately assessed.

· Parents and carers are not being allowed to help their adult children communicate during their assessment.

· The proposed changes to the descriptors will have a detrimental impact on people with an autistic spectrum condition.

· It must be recognised that many adults with autism have been failed throughout their childhood by both education and health services, impacting on their ability to seek and maintain employment.

· Adults who have been cast adrift without provision and services since leaving Children’s Services will have no supportive evidence to produce if they are asked to do so.

· Assessment Centres are not meeting the sensory needs of adults with autism.

· The distance learning autism training received by the ATOS assessors is woefully inadequate.

· Adults with autism will only feel confident with the assessment process when the method of assessment reflects their complex, specific and individual needs.

· The DWP does not inform adults about the emergency rate which can be accessed if adult finds themselves in an appeal situation which we believe is neglectful.

· The national roll-out for the migration process is we believe premature.

2. Area of Interest:

ACT NOW (Autism Campaigners Together) is a campaign group which was formed specifically to raise awareness regarding the impact cuts to Local Authority budgets and the changes to benefits, including assessments, will have on the autism community throughout the UK. ACT NOW has 10,000 supporters who actively feed into the campaign via our 23 Regional Co-ordinators who oversee our 10 regional groups and our groups in Scotland, Wales and Northern Ireland.

The core group members of ACT NOW include:

Carole Rutherford (Campaign Manager) has two sons with autism and is an advisory group member of the All Party Parliamentary Group for Autism. Carole 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 Autism Strategy.

Anna Kennedy (PR) has two sons with autism, founded and runs Hillingdon Manor and Baston House School. Baston House School is a community college for people aged 16+ offering vocational training from two sites in west London, a residential home for those attending the college, a specialist support outreach service and a thriving social networking club for young people. Anna and her team have created the largest range of specialist facilities in Europe.

Teresa Catto-Smith (Administrator and Scotland Co-ordinator) is a full time mum to 6 children (one is autistic, one is dyslexic & dyspraxic) and is an autism campaigner. Teresa runs her own support networks, Autism in Scotland and Lothian Autism Network, which are used by nearly 1300 people via Facebook.

Mavourneen Moore (Information Officer) has a teenage son with autism, works full-time in a pharmaceutical company and is an autism campaigner. She also volunteers for Braintree Mencap as vice chair of the executive committee and for Mencap Senior Gateway club.

In October 2010 ACT NOW published an impact assessment supported by 6000 people. The assessment included contributions from 2949 members of the autism community.

ACT NOW would welcome the opportunity to give oral evidence to the committee.

3. Our concerns:

The Job Centre Plus Factsheet ‘Reassessment of Incapacity Benefits /Support offered by Job Centre Plus for Customers with additional support and communication needs’ excludes anyone who has a diagnosis of autism which is a recognised communication impairment:

3.1 The factsheet gives specific information for customers for whom English is not their first language, customers who are visually impaired and customers with hearing and speech impairments and was issues by JCP in February 2011. It fails to mention communication impairments.

3.2 The factsheet states ‘Customers will receive a letter from Jobcentre Plus telling them that their benefit is being reassessed. Jobcentre Plus will then call the customer to discuss how this change will affect them and to answer any questions.’ Adults with autism will need to be offered support and the opportunity to access an advocate/communicator before the phone call takes place. The offer of support should be made in writing and in advance of the phone call from Jobcentre Plus and questionnaire being sent to adult for completion.

3.3 The factsheet continues: ‘During this telephone call the customer will be asked if they have any additional communications needs.’ Adults with autism require an advocate/communicator to be present with them when the phone call is made as without the right support they may be unable to identify their own communication needs and share that information. Being unable to identify and label how their disability impacts on their lives is one of the problems that adults with autism face daily.

3.4 While we acknowledge that Jobcentre Plus will support a customer’s right to have representation an adult with autism has to be made aware of this at the first point of contact. Arrangements then need to be put into place to ensure that support is offered in the form of either an independent trained advocate or someone who the person with autism is comfortable with and who they are happy to help them to communicate effectively.

4. The WCA is based on medical and social models of disability and the descriptors in no way reflect the complexities of autism. Adults with autism are being inappropriately subjected to the WCA and the impact of their disability is being assessed by a model that does not allow the complexity of autism to be accurately assessed.

4.1 In order to qualify for ESA in a work-related activity group the adult being assessed has to gain more than 15 points. The way in which it is currently proposed to change the descriptors we believe will have a detrimental impact on people with an autistic spectrum condition. The descriptors take no account of communication difficulties, verbal or non-verbal, due to mental impairment. We believe this to be a critical error within the assessment. Communication and comprehension are essential in the workplace.

4.2 ACT NOW argues that autism does not fit into either model of disability given it is a neurological condition, often hidden and varies greatly in how aspects of the numerous traits can affect each individual. Children and adults with autism are often more disadvantaged as a group and presented with even greater barriers than most.

4.3 Adults with autism do not always have any specific medical complaints making it difficult to identify physical or social barriers unless a complete profile and history of the person is completed. This must include evidence from carers and guardians. We have been told by Chris Grayling that this information will be considered as "secondary evidence" because most medical people do not have the ability to assess the extent to which someone is disabled by their condition.

4.4 ACT NOW believes that an automatic offer of support for every adult with autism, on the basis of their diagnosis and access to an independent advocate, supporter or 'communication assistant' must be made at the first point of contact by JCP/DWP. This must apply to all adults who have a diagnosis of autism irrespective of their 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 reasonable adjustment made. (To meet Section 20 part 5 of the Equalities Act.)

4.5 Duty to make adjustments E+W+S(1): "Where this Act imposes a duty to make reasonable adjustments on a person, this section, sections 21 and 22 and the applicable Schedule apply; and for those purposes, a person on whom the duty is imposed is referred to as A.(2)The duty comprises the following three requirements.(3)The first requirement is a requirement, where a provision, criterion or practice of A's puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage. (4)The second requirement is a requirement, where a physical feature puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage. (5)The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid."

4.6 While we acknowledge that adults are sometimes encouraged to take someone with them during their assessment/interview parents, carers and relatives are feeding back to ACT NOW that they are not being allowed to help the adult with autism to communicate. Adults with autism require so much more than moral support at these interviews. We are aware that adults are extremely anxious in the build up to an assessment. Anxiety, sensory and behavioural issues can continue to impact on the adult for sometime after the assessment.

4.7 We are also hearing of people attending for assessment only to be told upon arrival (or after a wait) that their assessment is cancelled. Travelling and waiting are both areas of daily life that cause most people with autism massive anxieties.

4.8 One parent carer contacted ACT NOW to tell us that her daughter was very upset and crying during the assessment, the assessor then said "no, look me in the eye when I’m talking" – this is bullying/intimidating behaviour and very distressing for someone with autism. This young woman (and her mother) has not recovered emotionally despite being awarded ESA; she now lives in fear of the next assessment.

4.9 Assessment centres, and the rooms themselves, take no account of the sensory processing impairment a person with autism has, regardless of how able they appear to be. The environment is harsh and unfriendly – to all attendees. We are also hearing from people who have been kept waiting for at least an hour prior to an assessment – this is cruel and causing more anxiety.

4.10 The process of the WCA begins with a written questionnaire and because all forms of communication are impaired, adults with autism require support to enable them to fill it in. A literal interpretation and understanding, which is a part of the condition, is making the questionnaire (any questionnaire) very difficult for adults with autism to complete. One adult who contact ACT NOW supported his questionnaire with 192 pages of supplementary evidence which Job Centre Plus refused to read. This led to the adult becoming extremely stressed and medical help had to be sought for the adult.

5. There must be some weight given to those adults who have for a number of years been without support and provision and so will not be able to produce any written evidence which documents the difficulties that the adult has because of their autism. Some adults have been totally unsupported since leaving Children’s Services and so have effectively been failed by the system. These adults are often isolated within our communities and are especially vulnerable. There is nothing within the current system that takes into account the fragility of these adults.

6. Training on Autistic Spectrum Conditions should be mandatory for all ATOS assessors not optional as it is at present – there are many stereotypical misconceptions about autism banded about by many, including professionals. The ability to access vital disability benefits should not be based on stereotypes. The subject of autism is covered within a self directed learning module ‘Learning Disabilities and Autism’ this module is presented as a DVD. Not everyone who has autism has an associated learning disability; this is something that is all too often overlooked when training is being carried out. Even where there is a learning disability present autism plays a large part in how that adult will present.

7. At the moment only 15% of adults with autism are in full time employment. This is opposed to 48% of adults with other disabilities being in full time employment. While some adults with autism do want to work and are capable of being in employment, it must be recognised that for some adults with autism living an independent life without employment will be a positive outcome too. Being able to live independently is something that should be a higher priority than employment for some adults with autism.

7.1 For this reason ACT NOW believe it is essential that adults with autism (and others with similar disabilities) who try to seek and maintain employment and for whatever reason fail are not penalised or given a ‘sanction’. Autism must be categorised as a high risk group, recognising that adults with this disability often find it difficult to seek and maintain employment – often because of the culture and social problems they face in the workplace.

8. Adults with autism will only be able to feel confident that the decision making process and the outcome of their assessment is a fair and transparent reflection of the capacity to work, when the method of assessment that is being used to assessment actually reflects their complex and specific needs.

9. Unless adults with autism have the necessary support, which they will require from the first point of contact by Jobcentre Plus, some adults are likely to be daunted/put off by the appeals process.

10. There is an emergency rate of Employment Support Allowance (or Income Support if this is an old claimant) that the DWP will give until their tribunal makes a decision. The payment is only slightly less per week than ESA/IS. If the adult wins their case they receive a full back payment. The DWP does not tell claimants about the emergency rate, which we believe is neglectful.

11. For those adults who have been continually failed by both education and health services throughout their childhood, the move to the Work Related Activity Group of the ESA could prove to be an extremely traumatic experience with the outcome being that those adults, many who are without services and provision, will reach crisis point.

12. ACT NOW does not agree with the decision to time-limit contribution ESA to a year and for those placed in the Support Group. This shows a failure to recognise that some adults will not be ready to seek or maintain employment within a year of being eligible to claim ESA. This is especially so for adults who have a lifelong condition like autism. There must be some method of separating people with disabilities who may recover from their disability/illness/injury who could well be ready to seek and maintain employment within a 12 months period and those for whom this will not be possible.

13. The timescale of the national roll-out for the migration process is we believe premature to say the least. It would appear to be imprudent to continue with a national roll out of a system that is at the moment under review for the second time and only weeks away from that report being published.

14. ACT NOW is extremely concerned that the charities who were working on the Harrington Review, one being the National Autistic Society have now unanimously dissociated themselves from the internal report.

15. ACT NOW Recommendations:

· Adults with autism will require support to enable them to communicate effectively throughout the whole process of assessment no matter how able they appear to be.

· Support must be offered to adults at the first point of contact which should be in advance of the commencement of the assessment process. Every adult with a diagnosis of autism should be offered an independent advocate communicator or access to a communication system that best meets their needs.

· Any assessment which is used to decide if an adult with autism is capable of working must reflect the complex nature of the condition.

· All of the needs of the adult must be taken into account including their specific sensory needs and reasonable adjustments must be made for that adult in line with section 20 of the Equalities Act.

· It must be recognised and documented that some adults will be unable to provide supportive evidence from professionals involved in their lives if required to do so. Many adults have been without provision and services and without any contact with professionals after being signed off from Children’s Services. This is especially so for adults with Aspergers Syndrome and High Functioning Autism.

· Supportive evidence from parents, carers and people who know the adult well must be deemed to be acceptable in situations where an adult has not been able to access professional support.

· It is essential that the history of adults with autism is taken into consideration. Many adults with autism were failed throughout their childhood by both education and health. The failure to meet the needs of children and adults with autism is now well documented and has been at the heart of several Government inquiries.

April 2011