Written evidence submitted by Carole Rutherford |
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.
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
assessment process even before the process has officially begun
is having a negative and lasting impact on the emotional wellbeing
of adults with autism.
with autism require support from the first point of contact to
enable them to communicate effectively.
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.
little regard appears to have been paid to Section 20 of the Equalities
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
training and the content of the training received by the Atos
assessors is a huge cause for concern.
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.
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 10 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.
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 customers 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.
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
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
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
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.
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 "J", 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
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.
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.
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 six.
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?
part of the assessment for understanding and comprehension falls
under descriptor seven 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.
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. 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.
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.
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.
literature available through Jobcentre Plus must include adults
with autism who have a diagnosed communication impairment.
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.
Works Capability Assessment should cease until the Adults Autism
Strategy has had the opportunity to be taken on board and embedded
in Local Authorities.
assessment method which is assessing the capability of an adult
with autism must reflect the complex nature of autism.
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.
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.
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.
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.