Monday, 8 April 2013
Letter to Esther McVey MP, Minister for Disabled People
Dear Ms McVey,
We are writing to you on behalf of our 12,000 supporters to share their concerns regarding adults with autism and the change from DLA to PIP.
We know that the vast majority of PIP assessments will be made no earlier than October 2015, which is why we are raising these serious concerns now, in the hope that you may look again at the assessment process. We want you to ensure adults with autism are not discriminated against because they do not possess the historical and medical data that will determine if they will need to have a face to face assessment and subsequently if they will qualify for PIP.
We would welcome the opportunity to meet with you to discuss this fully.
Autism is not a medical condition nor an illness so many adults are not seen routinely by any medical professionals. Adults with an IQ of over 70 often do not meet the criteria to be seen by the few professionals who are autism experts. There are often no services for adults with autism to access, this is despite many of our adults desperately needing to access services and provision. The historical and medical data that will decide whether or not they will have a face to face PIP assessment simply does not exist for many thousands of adults with autism.
The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has to date, done very little to improve access to services and provision for adults with Asperger Syndrome and High Functioning Autism.
Carole Rutherford, national coordinator for Act Now For Autism, raised concerns about the continued lack of services, advocacy and provision for adults with Asperger Syndrome and High Functioning Autism when she had the opportunity to speak to Norman Lamb at an All Party Parliamentary Group for Autism meeting last month.
Autism is a communication disability, so adults with autism who have no background evidence of how their condition impacts on them are going to be at a distinct disadvantage from the start of the process. Anyone who has been and is being seen regularly by doctors, consultants and social care professionals are able to supply evidence which will substantiate the impact that their condition has on their lives.
Many adults with autism already have to endure the Work Capability Assessment process without any support. Act Now For Autism has been campaigning for advocates for adults with autism from the first point of contact regarding ESA. We believe autism trained advocates should be offered at the first point of contact re applying for PIP.
It is unquestionably the case that adults with autism often find it difficult to fill in the forms that usually are required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired but also all other forms of communication including written.
There are many adults in our community who no longer have parents to support them. Who will these adults be able to access for support, advocacy and for additional evidence about their condition on their behalf? By their own admission 80% of GP's do not know enough about autism to help their patients or to signpost them to services that could help them.
There is no exact data as to how many adults with autism there are in the UK. Many adults with autism are hidden within our communities, and many of them only survive because of their DLA, which enables them to pay for the additional costs they face because of their condition.
Autism is a complex condition and the community of autistic adults across the UK are going to need a lot of support to navigate through all of the changes brought by the Welfare Act 2012.
We look forward to having the opportunity to discuss this further in person with you.
Regards
Act Now For Autism
Act Now for Autism is a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The Core Group members of Act Now for Autism and all of the Regional Coordinators live with autism.
On the 18th October 2010, 6 of our Founder Members handed over a petition at 10 Downing Street with over 6,000 signatures in support of the Act Now for Autism campaign.
This was preceded by the official launch of an Act Now for Autism Impact Assessment Report. The report contained the concerns and views of 2924 people who either live with autism or are autistic themselves. We had a greater response for input into our report than Brian Lamb did into his 18-month long Inquiry into the whole of special educational needs.
As well as the core group we have a group of coordinators who cover 13 regional areas in the UK including Scotland, Wales, and Northern Ireland.
We have active supporters on all of these groups who are keeping us informed about changes to provision and services in their area. We are also receiving information through our groups about the benefit assessments that adults with autism are having. We hear from adults with autism who are undergoing benefit assessments, and are suffering from extreme anxiety as a result of their assessment, on a daily basis.
We currently have more than 12,000 supporters and the number of supporters continues to grow on a daily basis.
Tuesday, 2 April 2013
Your Voice Counts.
If every child
with autism were able to access the speech and language therapy,
occupational therapy and sensory integration therapy (to name but a few)
that could make a difference to their lives, we would at least be giving
them the best possible chance to reach their full potential as adults.
If every adult with autism were able to access low level preventative
services as and when they needed to and advocates to enable them to
communicate effectively (especially when having their benefits assessed
or reassessed) we would be giving them the best possible chance to live
fulfilling, rewarding and independent lives.
Services and support have been removed from
our children and adults already and there are more cuts to come. We are extremely concerned that things for the autism community will become much harder. Parents, carers and adults
with autism are telling us they are very anxious, autism can often autism be a hidden disability so some children and
adults with autism will not be deemed to be severely disabled enough to
warrant support, services and provision.
Act Now for Autism is
in the process of updating the Impact Assessment Report first published in 2010. We need to
raise as much awareness about the impact that the cuts to services and
benefits are having on our lives as possible. To enable us to do this we
need our supporters to tell us how these cuts are impacting on their
lives.
Sitting back and doing nothing is not an option for us, we need your support. Together we can make our voice heard.
GIVE US A BREAK!
On World Autism Awareness Day, ‘Give us a break!’
Schools must take action so that children with autism feel safe at break times: Figures
released today, as part of a nation-wide survey, showed that a
staggering 97% of autistic children are seen by their parents and carers
as vulnerable to bullying, with 42.4% of children telling their parents
they are often bullied in school.The results come as part of an inspirational national campaign launched this month by the Anti-Bullying-Alliance (ABA) hosted by children’s charity the National Children’s Bureau and Tesco Mum of the Year 2013 Anna Kennedy OBE, who have joined forces to promote their collaborative campaign ‘Give us a break’ as part of Autism Awareness Month 2013.
The campaign calls on all schools and colleges to be particularly aware of the bullying that children with Autism experience at break times and to provide positive activities that keep them safe. This action will be welcomed by respondents of the survey; with over half citing that ‘structured activities’ are currently seriously lacking at break times in schools, alongside a vast 89% who said they would embrace positive activities as a constructive way of combating the bullying of autistic children.
Lauren Seager-Smith, National Coordinator of ABA says “For children and young people with autism, break and lunch times in schools and colleges can be particularly daunting and can put them at risk of bullying.” “We feel privileged to work with Anna Kennedy to raise awareness of bullying of children with autism in our schools and colleges. Too often these children are seen as the problem; as not 'fitting in' or 'settling down'. We want to see all schools take decisive action to create environments and cultures where all children feel safe and supported without fear of bullying'’
Further figures revealed the heartbreaking reality that almost three quarters (73%) of children with an autistic spectrum condition (ASC) find break times extremely difficult and in some cases actually frightening, something Owen Cordwell, aged 10, knows only too well: "I have been bullied just because I was in special provision. I never want anyone else to go through that. It doesn't matter if you are autistic or not, you should not be bullied as we are all people with feelings and no child deserves to be bullied"
Anna Kennedy OBE, Director of Anna Kennedy Online says “I felt that a survey was needed to truly assess the extent of the problem due to the overwhelming amount of emails and messages I receive from families who are affected by this issue at grass-roots level every day; it became apparent that they needed a platform through which to voice their direct concerns. Partnering with the Anti-Bullying Alliance was the perfect opportunity to raise the profile of the problem and advise schools to take action on what is evidently an extremely serious issue.”
The national campaign has already gained support in the form of celebrated author and TV personality Kathy Lette, who has firsthand experience of the hurdles children with autism can face, following the diagnosis of her son Julius (now 21) with aspergers at age three:
"Most school kids strive to learn math and grammar. Aspergic children strive to make themselves invisible....Venturing into the school playground can feel as hazardous as Scott leaving his Antarctic base camp. 67% of children with aspergers report that they are taunted and bullied at school lunch time. There is no such thing as normal and abnormal. Just ordinary and extraordinary. It's time we recognized kids with Aspergers for the exceptional people they are. Bullying makes them runners up in the human race."
‘Give us a break’ also seeks to inspire schools and colleges to communicate examples of their success stories, through designated resource sharing on both the Anti-Bullying Alliance and Anna Kennedy Online websites. Encouraging an idea sharing culture where thoughts on break time activities, keeping children safe and improving social skills can be discussed and circulated.
For further information on the ‘Give us a Break’ campaign visit www.anti-bullyingalliance.org.
Sunday, 17 March 2013
Mum of the Year Anna Kennedy challenges PM David Cameron
Mum of the YearAwards 2013
Conversation with the
Prime Minister - transcript signed off by Downing Street
Anna: I feel an
awful lot of pressure from parents and the reason being, Facebook has
been fantastic for us parents. We’ve formed this almost virtual
autism community and we are supporting each other and parents are
very angry at this moment in time. I speak from grass roots level. I asked what I
should ask, within an hour there were 100 questions.
I feel this enormous
burden that I have to do it for them. What they are saying is: Why
does accessing services for simple education and care have to be a
constant battle. It’s bad enough getting a diagnosis. It seems like
you are almost being penalised because you have a child with autism.
Why is the system so
difficult? The parents are so anxious, they feel vulnerable, they are
worried about their children they are worried about them becoming
adults. It seems less and less services are there for them.
Cameron: Were most
of the questions about the process of getting a statement?
Anna: Statement of
special educational needs, you’ve got local authorities that write
these statements that are not worth the paper they are written on.
It’s woolly word bingo. You’ve got things on there that say
they’d benefit from, well I’d benefit from winning the lottery!
Anna:
What I say to you is, these parents that don’t really know anything
about the statementing process, they read these statements and they
think I’m going to get speech and language therapy regularly, but
as long as they get it once a year that’s regular. I have regular
Christmas dinner. It needs to be specified, it needs to be
quantified. I know that you’ve got the new care plan coming
together and you’re saying that health, social services and
education are going to be working together, I’ve seen no evidence
of that, so what actions are you going take.
Cameron: You are
absolutely right, I think the process of getting the statement of
special education needs have been much and it’s been very
confrontational and also it hasn’t taken into account enough health
need and social needs and that’s what this new reform… it’s not
in yet, we haven’t introduced it properly yet… should deliver.
That when you’re getting your statement, rather like the Passport
[to care] we were talking about, the person responsible for health
and education… they’ll all be sitting there together so when you
get the statement it should include everything. It’s not perfect
because in an ideal world you’d probably have the statement done by
someone completely different to the local authority because in the
end the local authority is both the provider of the statement and the
provider of the services. We can’t do that now, but I think this
new process of having health and social care more involved will be
better and I hope this new process is going to be more streamline.
Cameron: And also we
address something, which is more difficult, but nonetheless which
needs to be said. I think part of the problem in Britain is that we
have so many children who are specified as having special needs and
actually what we need to do is focus on the ones that really do have
a special need that have a learning disability and really making sure
we help them. I think we’ve been too slack at saying some children
who have got problems with reading for example have got a special
need, whereas sometimes they just haven’t been taught properly. So
I think the more you can focus on the most needy, the better you can
do for those people.
Anna: I’ve spoken
to parents where they’ve waited months and months for an
appointment and the consultant paediatrician says this child’s got
some autism traits. It’s like saying you’re a little bit
pregnant. You either are or you’re not.
Anna: You’ve got
parents who are waiting and because they don’t have the passport
with the diagnosis they are not getting the support they need. The
children are stressed at home, their parents are stressed, their
siblings are suffering. These parents need someone o sit down and
say, this is what autism is.
Cameron: That’s
true, you’re the expert, but isn’t it difficult with autism
because there is a spectrum. I’m always struck because when I see
parents with autistic children because if you’ve got a sever
learning disabled child, you’ll often find those parents in one
group saying we’ve got a special school, we’ve got to save this
excellent school. With children with autism, you have some who want
special schools for autistic children, some who want mainstream
provision with help for autistic children. The spectrum is quite big,
if don’t know whether you find this with your school, but that does
make it more complicated.
Anna: You have got
children who can cope in mainstream schools, then you’ve got
children like my own two sons and it just wasn’t working for them.
Angelo didn’t even get the chance, because they said we can’t
even meet his needs and that was when he was just starting school. I
shouldn’t have had to re-mortgage my house, I shouldn’t have had
to set up my own school. I’m glad I’ve done it because I’ve
discovered strengths I didn’t even know that I had.
Cameron: Did you
find that when you first had your children and you were looking at
where to go to school, did you find you got a good explanation of
what was on offer? I think this is a real problem
Anna: No. I was told
by Hillingdon the ball was in my court and it was up to me to find
the right type of school. At first I was told my kids were the only
kids in Hillingdon that had autism, which made me feel really
isolated.
Cameron: We have
changed the rules about this and this was based on my own experience.
You’ve got to make sure that parents are properly told about what
is available. The presumption should be choice. It should be the
choice for the parent, looking at the evidence, looking at what’s
available to make a choice about the child.
There used to be the
presumption heavily in favour of mainstream schools and that meant -
interpreted by some local authorities - that they didn’t tell you
about what was available. When Ivan was born they didn’t tell us
about the school that he ended up at. They didn’t even tell us that
it existed. We had to find out about it separately and that’s nuts.
Anna: The thing with
autism is that there are so many different strategies, I think I
counted about 17 of working with children with autism. Parents feel,
which one do I choose? What’s going to be the best one for my
child?
Cameron: Isn’t
that inevitable because we haven’t got to the bottom yet of some of
the cause and what the effects can be?
Anna: I think the
thing is training, consistency in training. I think that is what a
lot of mainstream schools are crying out for.
Cameron: The
Government is putting money into the National Autism Centres, so we
are funding this research, but there are different approaches and I
don’t think we can totally legislate for one while it’s still
uncertain.
Anna: What are the
Government’s priorities for children with autism? Parents need to
hear something because they can’t see the light at the end of the
tunnel.
Cameron: Help the
parents make the choices. The approach this Government is taking is
much more trusting of the parents, saying you should have more choice
in safe special schools, stop the closure programme which we did. And
then to put more power in the hands of parents whether it’s through
individual budgets and direct payments so you’re in command.
We are changing the
statementing process to make it more inclusive of the other things
other than education.
Anna: I think that
for some parents that’s too much pressure because you have to deal
with the diagnosis. To be honest with you I don’t know how I’m
not on the floor because I sleep three to four hours a night because
of my son Angelo.
Cameron: How old is
he now?
Anna: He’s 20.
I’ve had to set up everything, a vocational college for 45 adults.
I didn’t even go to university, I just about got ‘O’ Levels.
It’s the passion for my boys and listening to other parents that
drives me on.
I’d like to ask
one more question if I may, for adults. The disability living
allowance is going to be replaced by personal independent payment.
What’s the Government going to be doing to ensure that adults with
autism will not be at a disadvantage when being assessed, for things,
such as ATOS, work capability assessment, disability living
allowance, again parents of adults and adults themselves who are
affected are very anxious.
Cameron: I can
understand the concern about it. Basically, disability living
allowance has been a good benefit. It’s not means tested. it’s
based on your disability, not your earnings. and it has worked for
many people. I think the problem with disability living allowance is
that as you know, you've done it, I’ve done it, it’s an enormous
form you fill out (Anna – you need a degree to fill it out) you
need a degree to fill it out. and actually it isn’t really reviewed
and assessed properly and it isn’t really based on a proper medical
check. and so personal independence papers which we’ve put together
listing very carefully to all the disability and medical
organisations will be much more based on what your capabilities are,
what your medical diagnosis is, and will be properly reviewed. Now
this is not about cuts – the money - DLA and PIP, the money’s
going up, not going down. but there will be proper assessments.
Because sometimes people on DLA- they’ve got their DLA, and they’ve
just been left on it for year after year after year. so what I ‘d
say to people is of course change makes people anxious but actually
it’s better to have a system that properly assesses you and then
reassesses you on your need rather than a very very complicated form.
Anna: I’d just
like to give you a letter if that’s alright from 12,000 families of
adults with autism who all they’re asking for is an independent
autism advocate that when they go through this process of ATOS that
there’s somebody there. Because some of these adults come across as
more able than they are.
Cameron: What it’s
meant to be is checking out what you are capable of doing which
doesn't necessarily link to your medical condition. There are people
who have a physical disability but who are have incredibly fulfilling
work lives because they’re able to do all sorts of things. So we
should be looking at what people are capable of. I also think the
whole issue with ATOS and work capability assessments, because
someone is disabled or someone has stress or someone has other
conditions, we shouldn’t write them off, we should be asking what
can you do. Because actually even if you can only work for a few
hours a week or you’re only capable of some sorts of job, it’s
much more fulfilling to be able to do something than actually to be
written off that you can’t work .
Anna: I understand
what you’re saying, but have a read.
Cameron: But I will
have a read of the letter.
Anna: Thank you.
*Photo Copyright Tesco
Wednesday, 13 March 2013
I Would Walk 500 Miles.
Co-Founder and Act Now For Autism Campaign Manager Carole Rutherford was invited to attend the All Party Parliamentary Group for Autism, chaired by Robert Buckland MP today at the Houses of Parliament.
Carole was invited to talk about her own personal experiences and as she works very hard in the Sunderland autism community with her support group Autism-In-Mind as well as the Act Now For Autism campaign, she took the opportunity to raise the issues we're campaigning about. Issues affecting her own sons as well as the many families and autistic adults she supports in Sunderland and across England.
Carole gave Norman Lamb (Minister for State and Care Services) a dossier of the work central to our campaign. This included our recent survey of autistic adults about advocacy, the letter Anna Kennedy gave to the Prime Minister last week and the piece written for us by one of our co-ordinators who has experienced struggles in employment.
Sadly the minister was due to attend for only 30 minutes (he was there for nearly an hour) so Carole was only given 5 minutes speaking time:
"I would walk 500 miles:
By the time I arrive home tonight I
will have traveled 500 miles, 500 miles to have 5 minutes of the
Minister’s time, for which I am most grateful. 500 miles is quite a
distance to travel for 5 minutes of your time. These are the actions
of desperate woman.
I am Carole Rutherford and I have two sons with
ASC. My eldest son David, who is 25 years old, has a diagnosis of
Asperger's Syndrome (AS). My youngest son Matthew is 15 and has a
diagnosis of High Functioning Autism (HFA)
David has been without services from
being signed off from Children’s Services when he was 17. This was
despite David suffering two breakdowns during his teen years.
David's diagnosis of AS has totally
prevented him from accessing any services or support.
Services Do Not Exist
The truth is that the low level
preventative services which my son desperately needs to access simply
do not exist.
Despite my sitting on my LA local
autism working group/autism partnership board, and despite there
being much talk about autism since the group was set up, nothing has
changed for adults with
AS/HFA where I live.
Since being without services from the
age of 17 David has developed a serious sleeping disorder. He also developed OCD
which impacts greatly on his life.
I tried unsuccessfully to access mental
health services for David for over two years. Because David does not
have a learning disability we could not access a mental health team
who had any knowledge or understanding of autism.
Although the adult mental health services team were willing to see
David, they did not feel that they were equipped to deal with his
complex needs.
A little bit of knowledge is a
dangerous thing
We need specifically trained
professionals right across the services, especially within mental
health, to support and advocate for adults with autism. Low level
preventative services can work and that can be evidenced.
Scrutiny
We need a mechanism, other than the
self assessment tool, to give us reliable information about the
implementation of the strategy. LA's are ticking boxes that are
totally empty. How can you be green for the training of front line
professionals when no training has ever been delivered?
Advocacy
The need for autism specific advocates
is increasing daily because of the benefit assessment and
reassessments that adults are having. This will increase again when
PIP is rolled out next month.
Advocacy for adults with autism is a
specialised form of advocacy: I advocate for adults who are seeking
employment through the Work Choice Programme, where their complex
communication needs are not understood and are therefore not taken
into account.
The failure of the provider to
communicate effectively with two adults led to them having to seek
help for their own levels of anxiety and mental health issues. My
support group was contacted by a health care provider to see if we
could offer any support/advocacy for the adults, which we did. The
waiting list to access support via MIND is 5 months long.
Employment
There is very little support available
for adults with AS/HFA, to help the adults to seek or maintain
employment. What support there is, is often supplied by professionals
with very little understanding of autism.
My own son who has HFA does not meet
the criteria to have a personalised transition. In fact he has so far
seen no one who has looked at his options.
Schools do not always inform
Connexions that the young person has a form of autism, thus meaning
that they receive no additional support at all during transition.
My local autism working group organised
an event aimed at raising the profile of autism in the work place.
The event was supported by the Mayor who also sent out invitations to
employers in and around Sunderland - the event had to be cancelled
because not one employer wanted to attend.
We need much more awareness in the work
place so that employers can understand the many benefits that can be
had for them by employing someone with autism.
Young people with AS and HFA would be
more able to seek and maintain employment if they were taught the
skills they are going to require to seek and maintain employment.
They require social skills and effective
communication skills. They need an environment in which to practice
those skills.
I have only been given 5 minutes and I'm aware I'm probably well over so I'll stop there. Thank you."
Monday, 4 March 2013
Ignored and Ineligible.
Anna Kennedy OBE is a founder member of Act Now For Autism and has been awarded Tesco Achieving Mum Of The Year 2013. Celebrities gathered at London’s Savoy Hotel to pay tribute to the
nation’s best inspiring mums, to be shown on Channel 5 on Mothers’ Day. (You can watch Anna talk more about her work and this award here.)
Anna went to No 10 Downing Street today as part of the Mum of the Year celebrations and put a letter from us directly into his hand, whilst challenging him: "Why does accessing services and suitable
education and care have to be a constant battle for parents? What are
the Governments priorities for autism? I then went to explain that
when I knew I was coming to visit him I posted on my facebook page 'what
would you ask the Prime Minister' and shared that within a couple of
hours a 100 questions appeared. I said
parents are anxious, worried , angry and some cannot see light at the
end of the tunnel. Why are our children being penalised for having a
diagnosis of autism? It would seem that local authorities are saying how
can we make their lives more difficult?"
Here is our letter to David Cameron; this is part of our ongoing campaign for autism-specific advocacy to be offered at the first point of contact by the DWP for ESA and PIP applications and assessments/reassessments:
Ignored, ineligible and unable to communicate effectively.
People with Asperger’ syndrome and High Functioning Autism (HFA) are amongst the most vulnerable and socially excluded in our society. Despite the Autism Act 2009 and the Adult’s Autism Strategy ‘Fulfilling and Rewarding Lives’ the majority adults with autism remain excluded from the care and work system. These adults are either ignored or ineligible and unable to access services, which often do not even exist, to support them and meet their
need.
They are also being discriminated against with many losing their benefits because they are unable to communicate effectively during benefit assessments and reassessments.
In 2001 the NAS reported that only 15% of adults had access to any sort of advocacy to help them express their own views about their choice of care, housing and activities.
In 2013 the need for autism specific advocates is even greater as adults with autism struggle to account for their own disability during the Work Capability Assessment and from April the Personal Independence Payment Assessment.
Without the aid of an advocate from the first point of contact for the Work Capability Assessment, adults with autism are being placed at a substantial disadvantage compared to other people with disabilities who are in the same situation as them. Furthermore the reasonable adjustments required to move this disadvantage are not made.
Adults with autism can struggle to communicate effectively about themselves in benefit assessment situations for two reasons: they have a communication and socialisation impairment which impacts on every communication they make and many do not fully understand their own condition and how it impacts on their lives.
Act Now For Autism asked 208 adults with autism if they would want an advocate to support them and to help them to communicate effectively during the Work Capability Assessment and also during a Personal Independence Assessment:
People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.
It is often assumed that as people with Asperger’s Syndrome and HFA, who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger' Syndrome/HFA are in great need of advocacy because although they can talk they are not always able to communicate effectively or adequately express their intentions or emotions.
The ESA 50 Questionnaire is long and difficult for someone with autism to both interpret and answer. Because adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.
Many people with autism cannot work and most (according to research over 85%) of those even with Asperger’ Syndrome/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.
We believe and are campaigning for independent advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability.
Adults with Asperger’ Syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.
It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’ Syndrome/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.
It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’ Syndrome/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.
We would be grateful if you could respond to this appeal with some specifics on how the above problems can be addressed.
In anticipation of your response
Carole Rutherford
Anna Kennedy OBE
Teresa Catto-Smith
Mavourneen Moore
Act Now For Autism Core Team
Anna went to No 10 Downing Street today as part of the Mum of the Year celebrations and put a letter from us directly into his hand, whilst challenging him: "Why does accessing services and suitable
education and care have to be a constant battle for parents? What are
the Governments priorities for autism? I then went to explain that
when I knew I was coming to visit him I posted on my facebook page 'what
would you ask the Prime Minister' and shared that within a couple of
hours a 100 questions appeared. I said
parents are anxious, worried , angry and some cannot see light at the
end of the tunnel. Why are our children being penalised for having a
diagnosis of autism? It would seem that local authorities are saying how
can we make their lives more difficult?"Here is our letter to David Cameron; this is part of our ongoing campaign for autism-specific advocacy to be offered at the first point of contact by the DWP for ESA and PIP applications and assessments/reassessments:
Ignored, ineligible and unable to communicate effectively.
People with Asperger’ syndrome and High Functioning Autism (HFA) are amongst the most vulnerable and socially excluded in our society. Despite the Autism Act 2009 and the Adult’s Autism Strategy ‘Fulfilling and Rewarding Lives’ the majority adults with autism remain excluded from the care and work system. These adults are either ignored or ineligible and unable to access services, which often do not even exist, to support them and meet their
need.
They are also being discriminated against with many losing their benefits because they are unable to communicate effectively during benefit assessments and reassessments.
In 2001 the NAS reported that only 15% of adults had access to any sort of advocacy to help them express their own views about their choice of care, housing and activities.
In 2013 the need for autism specific advocates is even greater as adults with autism struggle to account for their own disability during the Work Capability Assessment and from April the Personal Independence Payment Assessment.
Without the aid of an advocate from the first point of contact for the Work Capability Assessment, adults with autism are being placed at a substantial disadvantage compared to other people with disabilities who are in the same situation as them. Furthermore the reasonable adjustments required to move this disadvantage are not made.
Adults with autism can struggle to communicate effectively about themselves in benefit assessment situations for two reasons: they have a communication and socialisation impairment which impacts on every communication they make and many do not fully understand their own condition and how it impacts on their lives.
Act Now For Autism asked 208 adults with autism if they would want an advocate to support them and to help them to communicate effectively during the Work Capability Assessment and also during a Personal Independence Assessment:
- 96% of these adults told us that they do want the support of an advocate to enable them to communicate effectively with a good understanding and knowledge of autism.
- 3% of adults said that they would want an advocate to support them to enable them communicate effectively.
- 1% said that they would not want an advocate.
People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.
It is often assumed that as people with Asperger’s Syndrome and HFA, who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger' Syndrome/HFA are in great need of advocacy because although they can talk they are not always able to communicate effectively or adequately express their intentions or emotions.
The ESA 50 Questionnaire is long and difficult for someone with autism to both interpret and answer. Because adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.
Many people with autism cannot work and most (according to research over 85%) of those even with Asperger’ Syndrome/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.
We believe and are campaigning for independent advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability.
Adults with Asperger’ Syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.
It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’ Syndrome/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.
It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’ Syndrome/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.
We would be grateful if you could respond to this appeal with some specifics on how the above problems can be addressed.
In anticipation of your response
Carole Rutherford
Anna Kennedy OBE
Teresa Catto-Smith
Mavourneen Moore
Act Now For Autism Core Team
Friday, 1 March 2013
My Life With Autism - Employment
As part of our ongoing My Life With Autism series, one of our co-ordinators, who wasn't diagnosed with an ASD until he was 30, wrote this piece about some of his experiences in education, of adult life and employment. He wishes to remain anonymous:
My years at school were not pleasant. I had always had difficulty interacting with my peers at school. I was well behaved on the whole but just didn’t seem to be the kind if guy people hung out with. Then just prior to starting secondary school the bullying started and it carried on and on and on and on.
I spent my most of my time in secondary school trying not to socialise in the hope that I would not attract too much attention and get living daylight kicked out of me. I did develop one or two safe friendships or at least to me they were but they turned out to be somewhat problematic. People change their minds very quickly they feared being made an outcast.
Why am I saying all this?
Well this view of relationships formed the basis for how I interacted at work later on and the problems I then had to overcome. What happens at this point in a child’s life affects how they will respond to situations that arise in the workplace. Anxiety is the autistic persons worst enemy, it will try and dominate their lives to the point of paralysis. More importantly the fear it produces will prevent them from achieving their potential in life and that is really is the point, isn’t it?
Between finishing school and starting college I took a summer job (my first full-time job). It was somewhat nerve racking as I had little or no idea what to expect. I discovered very quickly that relationships in the workplace were often quite complicated. Just because someone was being nice and polite, didn’t necessarily mean they liked you and more importantly I very little idea how to read people/situations and respond appropriately.
I struggled in college too, I was studying engineering and my maths wasn’t great. I had an interest in electronics, computers and I pursued it with vigour but all I really wanted to do was explore and experiment. As I’ve come to understand structured learning is a discipline and at that stage in my life I really hadn’t got it. When you can develop the discipline of structured learning it ceases to be an obstacle to your vision, your project, it becomes a tool to help you make things better. It can be a source of inspiration for ideas and the process of learning can become a pleasure rather than a pain. I look back on those years now, realise that it was one of the first pivotal point in terms of the journey I was on. The course tutor developed something of a dislike for me (he taught maths) and with my maths marks being low I was encourage to drop out after the first year. On reflection had I been persistent and perhaps re-sat the first year I might have had a much smoother ride but as it was I just rolled with it. And left feeling somewhat of a failure.
Many autistic people I have met over the years have told me similar stories. Autistic people usually think a little differently to most people, they focus only on what has value to them in terms of knowledge. It’s the project that’s important not simply knowledge for the sake of it. Many graduates come out of University with no idea what the really want to do. They have gone through the motions and met the requirements but where is the vision, the reason. Autistic people have vision they just don’t know how to get there, or they don’t believe they can. They are afraid to try.
I subsequently had a couple of different jobs. The second of these was as a Lab Tech. in a school which was really just code for a gimp (a sort of slave with no particular job description). As it turned out this particular school had an early RM network and very few members of staff who had any idea how it worked. I helped looking after it. I very quickly found myself being given all manner of technical equipment to figure out by staff who were not sure or didn’t have time. There was just one problem. I’d not been sanctioned to do it. This resulted due to my weak communication and conflict resolution skills, in me being bullied by an over zealous head teacher. I used the term bullied because it’s one thing to be told your in the wrong in some way and given chance to explain yourself. It’s another to be deliberately intimidated and unable to explain your actions. I don’t think I really understood what was going on at the time. I left with yet another failure under my belt. I had however managed to persuade my employer to give me day release to go back to college and try and converted my previous successful study to a different qualification. So I didn’t come away entirely empty handed.
Understanding the expectations of an employer is key to functioning well in a work place. Whether you choose to accept this or not, there is assumed knowledge and behaviour. Employers therefore don’t alway feel that need to explain how things should work, the chain of command, define responsibilities. To an autistic person this is a must. They need to know what is expected of them, the appropriate response when faced with uncertainty about what to do.
If there was one reason more than any other that autistic people find it difficult to hold down jobs it would be “lack of assumed knowledge”. If both the employer and employee have good clear method of communication (that works for both of them) and clearly defined and fully understood expectations from the outset there is no reason why an autistic person can not be valuable resource to their employer.
I shall resist giving a full CV here but I spent the subsequent 6 years working as an IT Technician moving between jobs building knowledge and learning, I had received no formal training thus far but by the time I left my final IT Technician role at Birmingham LEA’s Education IT in November of 1997 they had just recruited a team of IT Technicians for their Technician Service. When I arrived in December 1994 there was no LEA Technician Service. I was the first Technician and although I hadn’t realised the significance of it at the time. It was this innovative nature that would define my career.
This was the second key pivotal point in my career. By this time had begun studying with the Open University and I knew that I wanted to do something more than simply tech. support. I moved way from Birmingham to Northumberland, looking for some direction. Applied for Jobs but got no where. I was however spending most of my time exploring many internet related technologies which would form the basis of what I was to do later on.
It was at this point I made a decision. I wanted to be computer programmer. I had been programming as a hobby since I was 10 years old, I was 25 at this point. A chance online encounter with another OU student would give me that first step. He offered my the chance to code on a small project for a company he was contracting with in Birmingham. It was in a language I’d never worked with before but I didn’t care. Within a couple of months I was back in Birmingham working with them full-time. I really did enjoy it but it was to be short lived, they had financial problems and had not been paying my tax forward. I now knew what I needed to do, it was time to move on.
I managed to get a place on clearing in the August and by September I was at University on a 2 year full-time HND. In the 13 years since then I have worked as a Web Developer for a variety of different businesses been involved in some great projects and some great moments of innovation (firsts).
I say all this because many autistic people believe that the obstacles to their successes cannot be overcome. That they can not develop sufficient social skills to cope in the workplace even though that may have the intelligence and in some cases nothing short of a gift in their particular area. I did have a lot of difficultly and I have made it sound a lot easier than it actually was to cope with at the time but I firmly believe that many of these difficulties could have been eased simply by having the right support.
I wasn’t diagnosed with an ASD until after my first post-graduate job (I was 30).
I’ve hinted at many of the reasons of autistic people being unemployed or seen as unemployable already but many of the arguments are I have heard even from autism specialist organisations all seem to miss one key point which is this:
It’s about the person not the job or the education system. You can have the best education system in the world but if the person doesn’t believe in themselves and the system doesn’t come along side support them with encouragement then it brings them no hope. If an employer doesn’t believe in the capability of a person they are employing and the employee doesn’t believe in themselves either how can it ever be a truly productive relationship.
Success is relative.
As Einstein said, “Everyone is a genius.
But if you judge a fish on it's ability to climb a tree, it will live
it's life believing that it is stupid.”
It’s more important to help an autistic person find the right path for them and encourage them in it than to push them down a path they can never reach their potential on. It’s a waste of their time and doesn’t benefit society or the economy in anyway.
There are many things the Government can do to support an Autistic young person through education and work placement but in the end the greatest reform needs to happen in business. Business sees employing people with difficulties more as a risk management exercise than an opportunity and improve their company. You don’t get gains in business without risks. There are many examples of autistic people who brought about massive leaps in innovation and discovery, yet if no one had listened we would never have known.
My years at school were not pleasant. I had always had difficulty interacting with my peers at school. I was well behaved on the whole but just didn’t seem to be the kind if guy people hung out with. Then just prior to starting secondary school the bullying started and it carried on and on and on and on.
I spent my most of my time in secondary school trying not to socialise in the hope that I would not attract too much attention and get living daylight kicked out of me. I did develop one or two safe friendships or at least to me they were but they turned out to be somewhat problematic. People change their minds very quickly they feared being made an outcast.
Why am I saying all this?
Well this view of relationships formed the basis for how I interacted at work later on and the problems I then had to overcome. What happens at this point in a child’s life affects how they will respond to situations that arise in the workplace. Anxiety is the autistic persons worst enemy, it will try and dominate their lives to the point of paralysis. More importantly the fear it produces will prevent them from achieving their potential in life and that is really is the point, isn’t it?
Between finishing school and starting college I took a summer job (my first full-time job). It was somewhat nerve racking as I had little or no idea what to expect. I discovered very quickly that relationships in the workplace were often quite complicated. Just because someone was being nice and polite, didn’t necessarily mean they liked you and more importantly I very little idea how to read people/situations and respond appropriately.
I struggled in college too, I was studying engineering and my maths wasn’t great. I had an interest in electronics, computers and I pursued it with vigour but all I really wanted to do was explore and experiment. As I’ve come to understand structured learning is a discipline and at that stage in my life I really hadn’t got it. When you can develop the discipline of structured learning it ceases to be an obstacle to your vision, your project, it becomes a tool to help you make things better. It can be a source of inspiration for ideas and the process of learning can become a pleasure rather than a pain. I look back on those years now, realise that it was one of the first pivotal point in terms of the journey I was on. The course tutor developed something of a dislike for me (he taught maths) and with my maths marks being low I was encourage to drop out after the first year. On reflection had I been persistent and perhaps re-sat the first year I might have had a much smoother ride but as it was I just rolled with it. And left feeling somewhat of a failure.
Many autistic people I have met over the years have told me similar stories. Autistic people usually think a little differently to most people, they focus only on what has value to them in terms of knowledge. It’s the project that’s important not simply knowledge for the sake of it. Many graduates come out of University with no idea what the really want to do. They have gone through the motions and met the requirements but where is the vision, the reason. Autistic people have vision they just don’t know how to get there, or they don’t believe they can. They are afraid to try.
I subsequently had a couple of different jobs. The second of these was as a Lab Tech. in a school which was really just code for a gimp (a sort of slave with no particular job description). As it turned out this particular school had an early RM network and very few members of staff who had any idea how it worked. I helped looking after it. I very quickly found myself being given all manner of technical equipment to figure out by staff who were not sure or didn’t have time. There was just one problem. I’d not been sanctioned to do it. This resulted due to my weak communication and conflict resolution skills, in me being bullied by an over zealous head teacher. I used the term bullied because it’s one thing to be told your in the wrong in some way and given chance to explain yourself. It’s another to be deliberately intimidated and unable to explain your actions. I don’t think I really understood what was going on at the time. I left with yet another failure under my belt. I had however managed to persuade my employer to give me day release to go back to college and try and converted my previous successful study to a different qualification. So I didn’t come away entirely empty handed.
Understanding the expectations of an employer is key to functioning well in a work place. Whether you choose to accept this or not, there is assumed knowledge and behaviour. Employers therefore don’t alway feel that need to explain how things should work, the chain of command, define responsibilities. To an autistic person this is a must. They need to know what is expected of them, the appropriate response when faced with uncertainty about what to do.
If there was one reason more than any other that autistic people find it difficult to hold down jobs it would be “lack of assumed knowledge”. If both the employer and employee have good clear method of communication (that works for both of them) and clearly defined and fully understood expectations from the outset there is no reason why an autistic person can not be valuable resource to their employer.
I shall resist giving a full CV here but I spent the subsequent 6 years working as an IT Technician moving between jobs building knowledge and learning, I had received no formal training thus far but by the time I left my final IT Technician role at Birmingham LEA’s Education IT in November of 1997 they had just recruited a team of IT Technicians for their Technician Service. When I arrived in December 1994 there was no LEA Technician Service. I was the first Technician and although I hadn’t realised the significance of it at the time. It was this innovative nature that would define my career.
This was the second key pivotal point in my career. By this time had begun studying with the Open University and I knew that I wanted to do something more than simply tech. support. I moved way from Birmingham to Northumberland, looking for some direction. Applied for Jobs but got no where. I was however spending most of my time exploring many internet related technologies which would form the basis of what I was to do later on.
It was at this point I made a decision. I wanted to be computer programmer. I had been programming as a hobby since I was 10 years old, I was 25 at this point. A chance online encounter with another OU student would give me that first step. He offered my the chance to code on a small project for a company he was contracting with in Birmingham. It was in a language I’d never worked with before but I didn’t care. Within a couple of months I was back in Birmingham working with them full-time. I really did enjoy it but it was to be short lived, they had financial problems and had not been paying my tax forward. I now knew what I needed to do, it was time to move on.
I managed to get a place on clearing in the August and by September I was at University on a 2 year full-time HND. In the 13 years since then I have worked as a Web Developer for a variety of different businesses been involved in some great projects and some great moments of innovation (firsts).
I say all this because many autistic people believe that the obstacles to their successes cannot be overcome. That they can not develop sufficient social skills to cope in the workplace even though that may have the intelligence and in some cases nothing short of a gift in their particular area. I did have a lot of difficultly and I have made it sound a lot easier than it actually was to cope with at the time but I firmly believe that many of these difficulties could have been eased simply by having the right support.
I wasn’t diagnosed with an ASD until after my first post-graduate job (I was 30).
I’ve hinted at many of the reasons of autistic people being unemployed or seen as unemployable already but many of the arguments are I have heard even from autism specialist organisations all seem to miss one key point which is this:
It’s about the person not the job or the education system. You can have the best education system in the world but if the person doesn’t believe in themselves and the system doesn’t come along side support them with encouragement then it brings them no hope. If an employer doesn’t believe in the capability of a person they are employing and the employee doesn’t believe in themselves either how can it ever be a truly productive relationship.
Success is relative.
As Einstein said, “Everyone is a genius.
But if you judge a fish on it's ability to climb a tree, it will live
it's life believing that it is stupid.” It’s more important to help an autistic person find the right path for them and encourage them in it than to push them down a path they can never reach their potential on. It’s a waste of their time and doesn’t benefit society or the economy in anyway.
There are many things the Government can do to support an Autistic young person through education and work placement but in the end the greatest reform needs to happen in business. Business sees employing people with difficulties more as a risk management exercise than an opportunity and improve their company. You don’t get gains in business without risks. There are many examples of autistic people who brought about massive leaps in innovation and discovery, yet if no one had listened we would never have known.
Monday, 4 February 2013
Call For Trained Advocates
Act Now For Autism supports the call for a Cumulative Impact Assessment of the Welfare Reform Act. The changes to benefits are falling disproportionately upon disabled communities across the UK and our particular concern is for those with hidden disabilities, like autism. We want to highlight our call for an autism-trained advocate to be offered to every adult with autism at their first point of contact with the Department of Work and Pensions:
When the changeover from DLA to PIP is rolled out in April adults with autism are looking at the prospect of having two face to face assessments. People with autism and Asperger's syndrome have difficulties with social communication and flexibility of thought. This includes how to understand and work out what another person is thinking or feeling by reading and interpreting body language, gesture and facial expression.People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.
It is often assumed that as people with Asperger’s and High Functioning Autism (HFA), who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger's/HFA are in great need of advocacy because although they can physically talk they are not always able to explain and express what they actually think or thought, intend or intended to do or emotionally feel or felt using the medium of speech.
Autism is a complex disability and anyone who acts as an advocate requires a good overall understanding of autism. There are very few advocacy services that are freely available to adults with Asperger's/HFA and even fewer advocacy services that have specifically trained advocates to support people with autism.
Most adults with Asperger’s/HFA are not eligible for statutory services and cannot access advocacy groups for a range of different reasons. An advocate with a background in autism can explain the condition of Asperger’s/HFA when attending a benefit assessment with the individual. They can also write reports and support letters as even if the person has intellectual capacity s/he may lack the insight into her/his condition that the advocate can provide.
We are extremely concerned by comments being made by Esther McVay that most adults transitioning from DLA to PIP will have historical evidence which can be used to decide if they would require a face to face assessment. There are thousands of adults with autism who have seen no one about their condition since being signed off from Children’s Services. This is because autism is not deemed to be a medical condition and these adults have never been eligible for services despite their lifelong need. Many adults with autism will simply have no evidence to provide, historical or otherwise. This means that once again adults with autism will be placed at a substantial disadvantage because their disability does not fit neatly into a box.
PIP will require an adult to complete a questionnaire similar in style to the ESA 50 Questionnaire which is long and difficult for someone with autism to both interpret and answer. Autistic adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.
Functionality is what matters, not what the specific condition the person has.
Case study:
Client B was found “fit for work” at an Employment and Support Allowance Work Capability Assessment; her benefits were stopped; amongst other statements she told the health care professional that she did “all her own cooking and meals”, so was assumed to be independent and work ready. B suffered needless anxiety and stress while waiting 6 months for the appeal and self-isolated during this period; she appealed the decision at tribunal with the help of an advocate’s report and presence where it was explained that her “independent cooking” was purely making toast and marmite for breakfast and microchips for her tea, as she ate little else. Due to her phobias no one else could touch her food. The advocate was essential for client B. ATOS Healthcare, DWP decision makers and the tribunal time and costs could have been saved plus the anxiety and stress endured by Client B if an advocate had been available at her Work Capability Assessment.
Many people with autism cannot work and most (over 85%) of those even with Asperger’s/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.
People with Asperger’s/HFA are now having their ESA re-assessed on a regular basis and it can be removed, without much notice, by professionals with little experience of Asperger’s /HFA. People with Asperger’s/HFA look normal as it is a hidden disability, and their intelligence and ability to speak can often be considered to be “fitness to work”. The fitness for employment of a person with Asperger’s syndrome is assessed by first answering questions on the ESA50 form which expect some insight into their condition, which they many often lack due and secondly measured in the WCA by questions about “a typical day”. Their capacity to live independently and use a washing machine are scored rather than the challenges they face due to their inability to understand and process instructions, cope with colleagues, deal with change and inconsistency in a work environment, and manage their anxiety and stress levels.
We believe and are campaigning for advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability. 95% of adults with autism we asked said they would prefer to be supported through the benefit process by an autism-trained advocate.
Adults with Asperger’s syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.
It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’s/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.
It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’s/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.
Act Now For Autism
www.actnowforautism.co.uk
Written by Carole Rutherford (Act Now For Autism and AIM) and Sara Heath (Shropshire Autonomy)
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