Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK.
Act Now For Autism are campaigning against aspects of the Welfare Reform Bill, specifically the WCA, Work Programme and the impact of the changeover to Universal Credit and PIP. We are ardently campaigning for advocacy to be offered to anyone who has to have a face-to-face assessment.
In July 10th 2010 Act Now for Autism took the first steps of a campaign
journey that continues on into 2013. In this new year we will review
the Impact Assessment we produced in July 2010, we want to know
how and where the cuts and changes to benefits are impacting on lives
across the UK.
We continue to believe that the WCA is not fit for purpose and in
2013 we intend to add our voice to the campaign for a cumulative impact assessment
on the WCA and ESA.
We
will see the roll out of Universal Credit for new claimants, which will
see the disability element cut. Families will feel the impact of the
bedroom tax from April. People will begin to apply for PIP and move over from DLA, a new system and benefit that will include having a face to face assessment in addition to the face to face assessments that some adults
with autism are already enduring as part of the ESA Work Capability
Assessments.
Adults with autism must be offered access to an advocate at the first point of contact for both the WCA and a PIP assessment. Changes to funding means that parents continue to fight to prove that
their autistic children are disabled enough to warrant services and
provision. Act Now For Autism fears that the changeover from statements for
children with SEN to Education and Health Plans (England) will do nothing to
improve this situation. In Scotland the rollout of the Getting It Right For Every Child strategy is causing concern as is the change to Self Directed Support. 2013 will be the year we must double our efforts - we will need
your help. Autism continues to be misunderstood and under-represented.
Even within the disability forum at large, children and
adults with autism can be marginalised because autism can be a hidden
disability. The English Autism Strategy ‘Fulfilling and Rewarding Lives’ will be
reviewed this year and that is something that Act Now For Autism will
be taking a keen interest and hopefully an active part in. The All Party Parliamentary Group for Autism has written to Margaret Hodge MP, chair of the Commons' influential Public Accounts Committee,
expressing its concern about the limited progress being made in
implementing the Autism Act 2010. Act Now For Autism shares those
concerns. There is no level playing field and no national baseline for
the implementation of the strategy. It is therefore difficult to
measure any overall progress that has been made. We are concerned about
the accuracy of monitoring the progress of the strategy within Local
Authorities via a self assessment framework. Any assessment should
include both service users and the views of those who have been unable
to access services that they believe that they require. We will be pressing hard for autism specific advocates to be given a
high priority in the Strategy when it is updated. We believe that
having access advocates for adults with autism has become essential and
that need will increase again with the roll out of PIP. We would also like to see much more in the strategy that would move
progress towards the needs of adults with Asperger Syndrome and High
Functioning Autism being met. In Scotland the main focus will be the continuing
implementation of the Scottish Autism Strategy, we also want to make sure autistic adults of all abilities are catered for. £1.12 million was made
available to local authorities to develop strategies and action plans.
Local autism co-ordinators are mostly in post now and the strategy
continues to be monitored. We will be pressing for autism specific advocates in
Scotland too and more robust measures in place for transition into
adulthood across the country. We also would like to see better use of the Additional Support for Learning legislation and for the Getting It Right For Every Child ethos to provide better focus on the individual needs of autistic children. In Wales there was a consultation earlier in the year to further
implement the All-Wales Autism Strategic Action Plan strategy. Much
criticism was leveled at current support mechanisms like the Community
Care and Unified Assessments, as well as CAMHS, CMHT and social services
who were felt to have not had either the investment nor the proper
training (we know this is an issue across the wider UK too) to fully
support all people on the spectrum appropriately.
There has been some success in Wales but it's time to listen to the concerns of those on the spectrum, individuals
and families in Wales and to provide better basic support for life skills,
employment/self-employment opportunities - the same can be said across the UK. On December 3rd The Northern Ireland Government launched a document
for public consultation aimed at achieving improved outcomes, services
and support for people with autism, their families and carers. We hope
to be involved along with members of our NI regional group. There are major gaps in provision in NI and we need to increase pressure on the Government here. 2013 is going to a BIG year for the Autism Community in England,
Northern Ireland, Scotland and Wales. Act now For Autism is committed to
campaigning for the Autism Strategies across the UK to be improved and
above all, to be more inclusive of all people on the spectrum and to be
the very best strategies in the world! We are going to need YOU to help us march through this year and
continue our campaign work and update our impact assessment. Now is the time to be proactive, people
across the country will now start to feel the changes and
fully realise what is going to happen.
We have to stick together, work
together and shout together with one voice. March with us!
Continuing our series My Life With Autism, our campaign manager Carole Rutherford wanted to share with you her experience of completing the ESA50 form for her son when he migrated from Incapacity Benefit to Employment Support Allowance:
"The Work Capability Assessment was the only thing that the eldest of
my two sons with autism could talk about. We had to endure question and
answer sessions about the assessment every time we sat down to eat our
evening meal. This started in 2 years ago when my son realised that he
would have to be migrated from Incapacity Benefit and onto ESA. Despite not having any idea about what questions he might be asked my
son had a practice run every day of what he would say in response to
any question that he would be asked.
My son has Aspergers Syndrome. He also has Keratoconus, which is a
degenerative visual impairment. He has OCD, multiple allergies, asthma,
he suffers from headaches on a daily basis and has 3 separate skin
conditions all of which become much worse when his levels of anxiety
increase. He also has extreme sleeping issues. His body no longer works
to a 24 hour cycle. My son has never worked. He stopped going to school after he was hit by a car while going to
school in an extremely distressed state when he was 11 years old. He
never returned after the accident. He never leaves the house on his own
and even when with someone I can probably count on my fingers how many
times he has left the house this year. After weeks of incessant talking about a Work Capability Assessment,
during which time his anxiety levels rose to a level that I could no
longer ignore, my son decided that he did not even want to hear those
words used in our house. He could no longer cope with even the thought
of a face to face assessment with a stranger in a strange environment
never mind talking about it. I spent a year trying to access someone in mental health who could
help to support my son. The fact that it took that long for me to find
someone who was willing to see my son only underlined how isolated
within our Local Authority my son is. There simply were no services that
were designed to meet my son’s complex needs. Had he been diagnosed
with autism we could have seen someone within a very short space of
time, but his Asperger Syndrome excluded him from any services that we
did have. It was one day back in July (2012) when we received the call from
JobCentre Plus. After checking that I was in fact my son’s appointee the
Jobcentre Plus adviser was happy to speak to me. I was informed that
the phone call was being made just to make sure that my son had received
a letter telling him that he was being migrated from Incapacity Benefit
to Employment Support Allowance. He had not. I was then read the
content of the letter. The letter was quite short and to the point; I
was feeling increasing sick and anxious with every word. I was told that an ESA 50 Questionnaire would follow our
conversation and I requested that everything for that point be addressed
to myself and not my son. I was assured that it would be. The ESA 50 arrived two weeks after the telephone call and even though
I knew exactly what to expect having read the ESA 50 on numerous
occasions on the internet, looking at it and knowing that every answer
on that Questionnaire counted raised my levels of anxiety. And so it
continued. I cannot remember feeling as anxious as I did at that point.
My every waking moment was taken up by the ESA50 questionnaire and it
was also the first thing I thought about the moment I woke up. Answering the ESA 50 was a nightmare. Even though I knew that the
questionnaire did not ask questions in a way that was going to make it
easy for me to reflect the difficulties that my son has on a daily
basis, trying to do just that was probably one of the hardest things I
have ever had to do. It took me three weeks to complete. This is
despite being able to access support and advice about the questionnaire.
My stress and anxiety levels rose on a daily basis. Just thinking about
the questionnaire made my heart race and I spent all day and every day
on a heightened state of alert. The questions simply did not allow for the complexities of autism and
I realised very quickly that they did not allow for the complexities of
his degenerative visual impairment either. Finding a way to clearly outline the problems that my son has
functioning on a minute to minute basis, never mind on a daily basis,
left me feeling mentally exhausted. I found myself thinking about my
answers to the questionnaire all of the time and going back and changing
and amending my answers. I became totally obsessed with the
questionnaire and found it difficult to focus on anything else. Eventually I decided that I could make no better of the answers that
we had given and so we sent the ESA50 to Atos. I had read that it could
take weeks to hear back following receipt of the questionnaire and it
was difficult to keep a lid on my ever growing sense of ill ease. My anxiety worsened because I knew that our wonderful GP was on
holiday at the time the questionnaire was received and then became ill
so the request from Jobcentre Plus to supply them with information about
my son and his medical conditions would lie in his in tray. I waited for the post every day and every day the sense of dread
increased. I am currently waiting for an operation and I decided to ask
if it could be postponed until we knew the outcome of my son’s transfer
from IB to ESA because I knew that there was no way that I could cope
with my son if he had to have a WCA post op. When news finally arrived it came via a small piece of paper that was
attached to an ESA 3 questionnaire. The slip of paper read: ‘Dear Sir/Madam As you have been placed in the ESA Support Group following
conversion from Incapacity Benefit, you may qualify for Income Related
ESA. To claim this complete and return the enclosed ESA3 form.' The words ‘support group’ jumped off the page at me but as there was
no letter with the questionnaire I was not sure that I dared hope that
this was really about my son. The new questionnaire was addressed to me. The day after the new
Questionnaire arrived we got a letter confirming that my son was in the
support group. It arrived on the same day as my youngest son’s DLA
renewal forms. It is safe to say that I personally heaved a sigh of relief but I
also expected to feel as if an huge weight had been lifted from my
shoulders, strangely I did not. Maybe because I know that it does not
end there. My son will have to be reassessed again at some point in the
future. I also know that he could never handle this process on his own.
He simply could not cope. I am not sure that I did. I have spent the last two years campaigning for advocates to be
offered to every adult at the very beginning of the WCA process. I had
an inkling of how difficult this process was for adults with autism and
their families, from what I have heard and been told via Act Now for
Autism. But not until I took the phone call from JobCentre Plus did I
have any idea at all as to just how much the process was going to impact
on me and my emotional well being. If we had had a raft of medical evidence to draw on maybe I would not
have felt as stressed out and anxious by the process as I did. But my
son, like a great many other adults with autism, was cast adrift from
services and support when he was signed off from Children's Services
when he was just 16 years old. The whole process really brought it home
to me just how much we are failing adults who have recognised
communication and socialisation impairments. Autism is
not an illness but it sure as heck impacts on the lives of those living
with it, so WHY are we still having to fight for the support and
services that both children and adults need? WHY despite having an act
of parliament dedicated to autism are our vulnerable adults not being
protected and given the support that they desperately need when going
into a benefit assessment situation? As it stands at the moment the Autism Act and the Adults Autism
Strategy 'Fulfilling and Rewarding Lives' is not ensuring that adults
with autism are able to access the professionals and advocates they need
to be able to access at a time when they are in most need."
ESA WRAG is a ticket to nowhere. CarerWatch hope that Employment Support Allowance (ESA) will be put fully under the microscope for the first time in Pat’s Debate.
In particular that speakers will look at the Work Related Activity Group (WRAG) and tell the real truth about it.
The government should admit that the WRAG is not about finding work. The
WRAG is simply about moving sick and disabled people from an
unconditional benefit to a means tested benefit to save money. Four fifths of sick and disabled people will be allocated to the WRAG
on migration from IB. It’s becoming clear that ESA is an out of
work benefit like JSA. It wasn’t protected from the inflation cap in the
Autumn Statement. You are expected to find work.
It treats people as effectively fit and time limits them to a year
before means testing. The feature that terrifies most disabled people is
the coercion in the Work Programme with forced work placements and
sanctions for non compliance. It is unfair to force these decisions on
disabled people if you haven’t walked in their shoes.
The cover story is that these people are on their way to work when in
fact only 1.5% of sick and disabled people are finding work through the Work Programme in the WRAG.
The WRAG is a confidence trick for moving to means testing disability
support.
Can speakers in this debate be the first to be honest about
this?
The heart ache over the WCA tests is really located in what the future holds when you are allocated to the WRAG. ESA WRAG is a ticket to nowhere.
Already
people are saying that after testing, failing, appealing, succeeding,
retesting, failing, sanctions, Work Programme, when the means test is
looming and they know they will not get any more support – they give up
and drop out.
Don’t let the people who give up and walk away count as
people who disappeared and probably got jobs. They didn’t. They just gave up.
+ The WRAG is a JSA group
November 21st, 2012
Commenting on Professor Harrington’s latest report the Minister for Employment, Mark Hoban, said: “The WCA is the right process for determining who is able to work and
who needs support. It is in everyone’s interest to make sure the system
is as fair and as accurate as possible. ”
Once again the Minister is completely missing the point. The
government has decided that four fifths of people who used to receive
Incapacity Benefit are now fit for work. This has been decided not by
tests but as a matter of policy. The tests are a fig leaf to legitimise
this decision and present them with the news. The terms ‘fair’ and
‘accurate’ do not apply. People who are able to work go on to JSA. People who are sick or have
a disability are meant to go on to the Employment and Support Allowance
but they don’t except for a minority who go in to the small residual
ESA Support Group. Where do the others go? In to the ESA Work Related
Activity Group (WRAG). This is a trick. The WRAG is described as an ESA group but is in all
but name a JSA group. There they will be harried by forced activity and
sanctions and then timed out just like a JSA group. Effectively they are
being required to work. It would be more honest if the government stopped hiding behind a
testing system and just announced that in future four fifths of sick and
disabled people are now going to be treated as fit people. - http://www.guardian.co.uk/politics/2012/nov/30/sick-disabled-work-benefits-programme?INTCMP=SRCH
