Written evidence submitted by ACT NOW |
ACT NOW (Autism Campaigners Together) have many concerns
about the migration from Incapacity Benefit to Employment Support
Allowance including the Work Capability Assessment:
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.
support in the form of an advocate or communicator is being offered
at the first point of contact by Jobcentre Plus for claimants
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.
Work Capability Assessment descriptors do not reflect the complex
nature of autism.
with autism are being inappropriately subjected to an assessment
using a method that does not allow the complexity of autism to
be accurately assessed.
and carers are not being allowed to help their adult children
communicate during their assessment.
proposed changes to the descriptors will have a detrimental impact
on people with an autistic spectrum condition.
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.
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.
Centres are not meeting the sensory needs of adults with autism.
distance learning autism training received by the Atos assessors
is woefully inadequate.
with autism will only feel confident with the assessment process
when the method of assessment reflects their complex, specific
and individual needs.
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.
national roll-out for the migration process is we believe premature.
2. AREA OF
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
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 plus 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 six 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 1,300 people
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 6,000 people. The assessment included contributions
from 2,949 members of the autism community.
3. OUR CONCERNS
The Jobcentre Plus Factsheet "Reassessment of
Incapacity Benefits/Support offered by Jobcentre Plus for Customers
with additional support and communication needs" excludes
anyone who has a diagnosis of autism which is a recognised communication
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
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
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
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
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
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
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
contacted ACT NOW supported his questionnaire with 192 pages of
supplementary evidence which Jobcentre 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
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
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
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:
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.
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.
assessment which is used to decide if an adult with autism is
capable of working must reflect the complex nature of the condition.
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
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.
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.
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.