Sunday, 31 July 2011

Little Boxes.

Today marks the end of our birthday month - Campaign Manager Carole has something to say, which we think you will want to read!  

"This week the Department of Work and Pensions Select Committee published its 6th report into Employment Support Allowance, which concluded:

The Government's aim of helping people with disabilities and long-term health conditions into employment is laudable but the scale of the challenge should not be underestimated. We know that a very large proportion of people who will be in the Work Programme will have previously claimed incapacity benefits or Employment and Support Allowance. For the Government to succeed in its objectives for the reassessment and the Work Programme it is therefore critical that it effectively links up the findings of the Work Capability Assessment with the support available under the Work Programme.

The report’s overall conclusion is that the assessment process is failing the vital task of accurately assessing the “employability and needs in the workplace” of disabled claimants and feeding that information to providers of employment support under the new Work Programme.

The report says this failure is the “cause of much of the confusion and anxiety” around the test used to assess disabled people’s “fitness for work”, the Work Capability Assessment (WCA).

For adults with autism the failure of the state to meet their complex and specific needs, often right throughout their childhood, must be taken into account. You cannot write off 20 plus years of ‘nothingness’ and expect adults who have been failed by the system to just pick themselves up, dust themselves down and make their way into meaningful employment.

The report also criticised disability charities who have campaigned for the WCA to be improved stating that:

...organisations which represent people on benefits shared some of the responsibility for the negative attitude to the IB reassessment and for fuelling anxiety amongst claimants about the process...

adding that charities:

...could contribute enormously to allaying the concerns about reassessments by giving equal weight to publicising the opportunities an effective assessment process could offer in addition to their important role in raising legitimate concerns.

Adults with autism will only be able to enjoy the “opportunities that an effective process could offer” if they were absolutely certain that the people who were carrying out the assessment had been correctly and sufficiently trained in autism and that the people who they would be putting their faith into if they were found to be fit for work had also been correctly and sufficiently trained.

The report’s overall conclusion is that the assessment process is failing the vital task of accurately assessing the “employability and needs in the workplace” of disabled claimants and feeding that information to providers of employment support under the new Work Programme. To accurately assess the “employability and needs in the workplace” of adults with autism it would require professionals who have been specifically and sufficiently trained in autism.

Services and provision for adults with autism are in short supply. Where I live (South of Tyne and Wear, covering South of Tyne, Gateshead and Sunderland ) has a population of approximately 623,000 people yet we have no specific health provision to meet the needs of adults with Aspergers Syndrome and High Functioning Autism. I am led to believe that the view of provision is pretty similar across the UK. 

An overall lack of services and provision across the UK must surely also equate to an overall lack of specially trained professional who are correctly and sufficiently trained to assess and support adults with autism?

Do we have people who have been specifically trained to assess the employability of adults with autism? If the answer to that question is yes, do we have people who have been specifically trained to support adults once they find suitable employment? 

While the DWP are concerned that our disability charities could be doing more to help adults with disabilities get into the right mind-set to look towards seeking and maintaining employment, one of my concerns is wrapped around the Work Capability Assessment Descriptors, which some of the national charities have been helping to rewrite. We will not know until Professor Harrington publishes his next report what the new descriptors will look like. However unless we have new descriptors that have been written especially to wrap around the autistic spectrum, I am not convinced they will meet the needs of adults with autism who are have a WCA. 

It is not politically correct to campaign for a group of people to be given what Parliament and Local Authorities consider to be ‘special treatment’ within disability. When campaigners do this we are always shouted down by those, and there are a great many of ‘those’, who believe that it is wrong to prioritise one disability above another. It has never been about propelling autism to the front of the disability queue. It has always been about trying to get people to understand, including Parliament and our Local Authorities, that autism is a unique disability that does not pigeon hole with any other disability.

Autism has been made to ‘fit into’ boxes, services and provision for years, autism will never  ‘fit into’ such systems. That is the crux of this matter and until this is accepted children and adults with autism are always going to struggle to get an education that fits their needs and to find employment. Their specific and complex needs need to be recognised and accepted as being just that - complex.

We continue to fail children with autism in our schools daily - parents have to fight for basic therapies and interventions that could make a huge difference to the lives of those children when they become adults. These basic therapies, social support and interventions, like speech therapy, sensory integration therapy and occupational therapy are on offer to some children with autism simply because they are being educated in specialist provision. The great majority of children with autism are NOT in specialist provision and so the therapies, interventions and statements, have to be fought for by exhausted parents while their children continue to struggle and flounder.

If you build a house without solid foundations it will not stand the test of time. If we continue to force children through an education system that is not providing them with solid educational foundations and failing to supply then with the correct bricks to build on those foundations, we will have adults with autism who are never ready to seek and maintain employment. 15% of adults with autism are in fulltime employment as opposed to 48% of adults with other disabilities. Parents, carers and adults with autism could tell the Government why this is NOW, if they really wanted to know.

Children and adults with autism need to be taught the things that neurotypical and many other people with disabilities learn instinctively. They need to be taught effective communication; they need to be taught social communication. They need to be taught how to transfer their skills from one setting to another. They need to be taught about themselves and how their autism affects them. None of these subjects are included in our current curriculum. Despite knowing that these things need to be taught we continue to assume that sitting children with Aspergers Syndrome and High Functioning Autism in a mainstream classroom of some 25 plus neurotypical peers will enable them to will pick up enough of these skills to see them through life. WRONG. 

We are failing our children. Failed children will become failed adults.

Even though the Autism Strategy for Adults ‘Fulfilling and Rewarding Lives’ highlights the importance of the transition from childhood to adulthood far too many Local Authorities are doing the minimum that is required of them and failing to include children with Aspergers Syndrome and High Functioning Autism in transitional planning. These are the very children who, with the right person centred planning and transitional planning, might just be able to seek and maintain employment at a later date. You cannot fail a group of people throughout their childhood and then just expect to propel them into work through a Work Choice Programme. 

When are we going to wake up and smell the coffee here?

How many times does it need to be said that children and adults with autism have complex and specific needs before someone who can make things change listens?

"For too long in this country we have left people on welfare for year after year when those people, with help and with assistance, could work and so we're producing a much better system where we really put people through their paces and say that if you can work, you should work." David Cameron (July 2011)

For too long in this country we have actively allowed children and adults with autism to be failed by a system that has never been geared up to meet their complex and specific needs.
Many adults with autism could work. Many want to work. I do not believe however that we are producing a much better system where we can put people through their paces and say that if you can work, you should work. Putting people through their paces who have been failed by a system and stating that if they can work that they must, is not only cruel, it is immoral.

If the Government wants adults with autism to work then it must be prepared to find the money to fund sufficient and specific training for professionals who can help our adults to relay foundations and to teach them the skills they will require to seek and maintain employment.

ACT NOW is not a charity. We speak as 10,000 plus parents, carers and adults with autism. Parents, carers and adults with autism who tell us on a daily basis that the system is far from right and that even if we started now it would take years to make it so.

We would be more than happy to “contribute enormously to allaying the concerns about reassessments by giving equal weight to publicising the opportunities an effective assessment process could offer” if we were confident that the assessments were being carried out by professionals who have been specifically trained to assess the functionality of adults with autism and if we were confident that there were indeed opportunities than an effective assessment process could offer.

At the moment we have no confidence in the assessment – we consider it not fit for purpose.

ACT NOW is committed to continuing our campaign for the offer of an advocate for every adult who is facing a WCA. We are also committed to continuing our campaign for autism to be recognised for what it is - a disability that requires its own box to tick, its own assessment process, its own services and provision, professionals who have been specifically trained to understand autism and the respect that each and every disability should be given."

Carole Rutherford
Campaign Manager

Tuesday, 26 July 2011

ACT NOW response to DWP Select Committee Sixth Report into the WCA.

Work and Pensions Committee - Sixth Report

The role of incapacity benefit reassessment in helping claimants into employment - our response:

ACT NOW (Autism Campaigners Together) welcomes the report that was published today by the Department of Work and Pensions Select Committee. The committee have stated in their report that "It is widely accepted that the WCA was flawed, in the form in which it was introduced in 2008 for new ESA claimants." ACT NOW believes that WCA is not fit for purpose for adults with autism and does not allow for the complex and specific needs that adults with autism have.

ACT NOW has been campaigning for advocates for every adult who finds themselves in a benefit situation since October 2010. Dame Anne Begg (Chair of the Department of Work and Pensions Select Committee) supports our national campaign for advocates.

Today’s report highlighted the need for clear and precise communication, however it failed to acknowledge that effective communication is essential for adults with autism if they are not to be discriminated against during the WCA process.

"The Government needs to develop its communications strategy for the IB reassessment in a way which ensures clarity and minimises anxiety. Providing claimants with the right level of information at the time that is appropriate for each individual forms an important part of this, bearing in mind that the reassessment process as a whole will last three years. It also requires the Government to be clearer about what the word "support" means in the context of Employment and Support Allowance. Currently it is used to describe employment support on the one hand and financial support through benefits for those who cannot work on the other. These two different meanings in the context of one benefit can be very confusing."

It is vitally important that from the first point of contact effective communication takes place. The process as it is now is causing considerable distress and anxiety to adults with autism and their families.

ACT NOW maintain that adults with autism need to be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant” to enable them to communicate effectively. If assistive technology is required then this must be provided before any interview or assessment takes place. It takes highly specialised people to be able to communicate effectively with adults with autism; this includes adults who have a diagnosis of Aspergers Syndrome or High Functioning Autism whose verbal abilities often mask the extent of their communication impairment.

The committee report continues to stress the importance of effective communication:

"We believe that the language currently used to describe the outcome of the WCA is a barrier to the Government's objectives for the reassessment being properly communicated. The idea that a claimant has "failed" the assessment if they are found fully capable of work risks negating the positive messages which the Government is trying to convey. It needs to be addressed across the board and to include all communications between claimants and DWP staff, especially Jobcentre Plus staff who tell claimants the outcome of the process, and Atos Healthcare employees who may explain the process to claimants. We also believe that the communications need to explain clearly and at every stage of the process that, where someone is found not fit for work, they will be eligible to receive ESA at the support rate."

It is highly unlikely that Jobcentre Plus staff and Atos Healthcare employees will be suitably and specifically trained to explain clearly every stage of the process to claimants with autism. Lack of suitable and in-depth autism specific training is an area of great concern to ACT NOW.

We are delighted that the committee highlighted the way in which some sections of the media is portraying people with disabilities as work shy and scroungers. This portrayal is impacting negatively on some adults with autism.

"The committee criticises some sections of the media for the way they have reported the reassessment of incapacity benefit claimants, particularly the use of terms such as "work shy" and "scrounger". It says that portraying the reassessment as some sort of scheme to "weed out benefit cheats" shows a fundamental misunderstanding of the Government's objectives."

 The report also discusses accessibility:

"It is unacceptable that disabled people should be called to attend an assessment at a centre which is inappropriately located, inaccessible to them or where reasonable adjustments cannot be made to accommodate special requirements arising from their health condition. We note DWP's assurance that Atos Healthcare is "moving rapidly toward" a situation where this is no longer the case. We request that, in response to this Report, the Government sets out progress towards this aim. This should include options for the relocation of assessment centres where necessary, increasing disabled access, and improvements to the mechanisms for ensuring a claimant's needs are known to Atos Healthcare in advance of the WCA."

ACT NOW welcomes this recommendation (and believe this issue should have already been resolved), we are pleased that the committee recognised the accessibility needs of disabled adults and that it is unacceptable that disabled people should attend assessment centres which are inappropriately located, inaccessible to them or where reasonable adjustments can not be made to accommodate their special needs. However, it should be noted that 'accessibility' is not purely about mobility issues, often adults with autism have complex sensory needs and anxiety.

Sensory issues are now well recognised and accepted as being very much a part of autism and being assessed for suitability to work should not be taking place in environments that adults with autism find disabling. Waiting for a long period in a stressful environment whilst waiting for an 'interview' an autistic adult is dreading will increase the likelihood of poor communication and poor understanding of their status. An advocate in this situation is essential, not only to ensure effective communication and sharing of information about the claimants abilities but also to ensure the adult with autism is able to cope sufficiently throughout the experience and beyond.

We know the WCA is causing high levels of anxiety before, during and after the assessment itself to those with autism and their carers.

In conclusion we don't believe the Select Committee has gone far enough, we remain committed to the view that:
  • The 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.    
  • The literature provided by Jobcentre Plus for adults with additional support and communication needs does not include anyone who has a diagnosis of autism.
  • The assessment process is having a negative and lasting impact on the emotional wellbeing of adults with autism and their carers.
  • Adults with autism require support from the first point of contact to enable them to communicate effectively.
  • Very little regard appears to have been paid to Section 20 of the Equalities Act.
  • Correct and appropriate transitional support must be offered to any adult who is deemed to be either fit to work or who is placed in the Work Related Activity Group.
  • The type of training and the material used to make assessors aware of autism is a major cause for concern as are the LiMA descriptors.
The roll-out/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 within the Autism Strategy.

There are currently only *15% of adults with autism in full time employment as opposed to 48% of adults with other disabilities. This means that even within the disabled community adults with autism are disadvantaged. Forcing vulnerable adults with autism into work, many of whom have been failed throughout their lives by the system, is not only immoral but cruel.

*DfH Autism External Reference Group

We need YOUR help!

Have you had a Work Capability Assessment or are you a carer for someone who is in or has been through the process? We are putting together evidence for the Department of Work and Pensions Year 2 Call for Evidence and need to hear from you about your experience of the assessment.

All information will be treated in confidence and you can remain anonymous. 
Email us at

Friday, 22 July 2011

DLA reform. (Anna and Sean Kennedy)

Anna Kennedy is a core founder of ACT NOW and in todays blog, she and her husband Sean have written this piece on DLA reform:

The coalition government have continued slowly turning the screws on adults on the autism spectrum, a task started by the previous government. Harsh cuts to existing benefits and services announced through an eager media have created a climate of fear for Britain’s adults with autism. PIP is supposed to be simpler than DLA, although much of the perceived complexity is due to a wider lack of understanding of the nature of autism. In this context, what simpler really means is cheaper – especially as the plans are to cut 20% of the DLA caseload. There is a clear indicator of intent to limit entitlement in the words ‘focusing on those with greatest and more complex support needs’

This change will be an unnecessary and expensive rebranding exercise. Although the caseload will be reduced PIP will still look very much like DLA albeit with a 21st century name at a time when government spending, is supposedly, being squeezed. The current system also allows for automatic entitlement to DLA for certain conditions. The new system will not; all claimants will be required to be reassessed every few years. This is not only unwise, but also costly as automatically entitled conditions are by nature the most severe and incurable. The only thing that will be achieved is extra cost of unnecessary assessment's, additional complication's instead of simplification and inconvenience for adults who are on the autism spectrum. Additional waste comes from ignoring the reality that people will remain on the autism spectrum and have needs even if they are no longer able to qualify for benefits. They will be ignored up to the point they become seriously ill and at crisis point and end up costing the NHS and local authorities more in terms of hospitals and residential care. Furthermore, the proposed reforms ignore the fact that some conditions are severe but acute. Not supporting short-term illness and disability makes it more likely this will become a costly long-term problem therefore increasing dependency.

The PIP proposals will see some current recipients of social care losing financial benefits now paid over at least in part to the local authorities for receipt of that care. This will force local authorities to make up the shortfall in funding likely achievable through cutting care packages. Another hole in the recommendations made is the impact of these plans on independent living, making that harder to achieve. Removing DLA from those who receive care packages, and especially recipients in residential care, will not promote independence.

This system will use independent assessment to form an objective assessment although it is not known why the DLA assessment is understood to not be objective. Current practice is to be assessed by a variety of resources; information from family or a carer, the persons GP, specialist consultant or physiotherapist are standard with face- to-face medical assessments if these and more do not provide enough evidence. What independent means is that a private company such as Atos will be contracted to run assessments and offered incentives to remove people from the system, as they already do with work related benefits. This process will include meeting with an independent healthcare professional not necessarily qualified as a doctor-working for the assessors similarly to the already problematic Employment Support Allowance (ESA) system. The objections to a private company (foreign-owned) using unqualified staff who know their jobs depend on keeping to strict targets with the sole goal being to reduce benefits are too many to count.

More important is the question of whether it is ever possible to make a truly objective assessment of a disability like autism. An autism spectrum condition is, by its very nature, as complex and variable as human beings and influenced by many different factors. What severely disables one person may not be such a significant barrier to another, yet both will require tailored support to enable them.

The focus on DLA as a disincentive to work is false and disingenuous. People who receive DLA do often have lower work expectations as the reform consultation paper suggests, and rightly so. Regardless of desire, many disabilities and conditions make work impossible. People with autism are often unable to compete equally in the labour market, even if there is work for them, which too often there is not. People with high rate awards have highest level of disabilities and are least likely to be able to work regardless of benefits. Those who do work and with lower awards are often only able to work because of the aids, support and adaptations DLA allows them to purchase. The focus on move to work has no place in a discussion about DLA other than to make the important clarification that DLA is not work related and exists to assist life with a disability such as autism. and it goes on...

Anna and Sean Kennedy

Monday, 18 July 2011

My Life With Autism

Continuing on with our series of videos and blog posts from supporters, here is testimony from Tracey in the North East. She and her sons have fought hard and here is a snippet of how difficult schooling has been. We are very grateful to Tracey for taking the time to write this piece and for being so open:

"I have two sons with autism.

Eldest son, Age 13.

Diagnosis: It took approx 2.5 yrs to get my eldest son diagnosed when he was age 6-7. We were passed from speech therapist to consultant to another consultant then another until a lovely consultant diagnosed our son with ASD & ADHD after a few home visits. It was extremely stressful we had to do own research to find people to help & support us especially after diagnosis. We felt really isolated. This went on for a few years and difficulties arise all the time.

There were major problems with school: primary school Head Teacher told us that our son would never be happy and we just had to live with that.

We moved him into a new school which was better but his behaviour was so difficult & impulsive. He had very little friends at home or school, never getting asked to birthday parties, sleepovers etc.. This impacted on our son’s self esteem and resulted in a few incidents of self-harm.

Transition to secondary school was the nightmare I was expecting and only lasted 6 weeks in mainstream with year managers telling us and our son that he had to meet them half way otherwise he would be bullied, would revert to self-harming and end up in detention all of the time, resulting in a very sad boy - horrendous!

Even when moved to main-steam secondary with Autism Unit it was still horrendous as nobody could cope with his behaviour ending in numerous suspensions.

We again felt really isolated and asked for help from Parent Partnership officer and Autism in Mind. We can't attend any groups because we both work. In the end, a few months ago, we felt really pressurised into putting him on medication (Ritalin) otherwise we were being told that we had to find an alternative school.

We have asked for years for therapy, psychology etc. but have got nothing. Eventually, last year, child & family stepped back in & now see our son once a week for a chat. His behaviour has improved and he has had a better year, long may it continue.

Although he has become more anxious now than he ever was. My son is still socially isolated, no friends at home or even at judo club. Neighbours are just awful, calling my son an alien, freak and brain-dead, parents and children alike.

My son excels at sporting activities such as judo, swimming, ice-skating, football etc..

My youngest son, age 8:

Was certainly more positive in terms of diagnosis. Fast-tracked through Autism Outreach team as he had a sibling with a diagnosis. We got play therapy through the PACT programme for a year & already had inside knowledge of help that was available & who to contact.

We have different problems with soiling but nobody seems to be able to offer solutions so that is ongoing. He is also very much isolated, no friends at home but good support at school, mainstream with classroom support.

For both boys it took over 2 years to gets statement for school and I had to apply on my own without the support of school.

There are many other problems with taking boys out, always in trouble at soft play areas and always on edge as know we would have parents and managers tapping on your shoulder to complain about son's behaviour.

Life is hard and we need support as do many other parents who are living similar lives to ours. That is why we need groups like ACT NOW to fight our corner and to speak for the thousands of us who so desperately need a voice."

Sunday, 17 July 2011

My Life With Autism.

Cat is a regional group co-ordinator for ACT NOW and talks passionately about how the cuts may affect her and her son. She is a carer for her 10-year-old son and here she discusses challenging behaviour, school exclusions and living on benefits.

We are so grateful to Cat for sharing her story.


Saturday, 9 July 2011

My Life With Autism

ACT NOW supporter Yvonne talks about some of the many battles she and her husband Bobby have gone through in order to secure the right support for her son Douglas who is 21 and autistic.

A very moving account, which will strike a chord with many of you - we are very grateful to Yvonne for taking the time to make this highly emotive video.

Friday, 8 July 2011

ACT NOW (Autism Campaigners Together) is ONE!

ACT NOW (Autism Campaigners Together) is ONE!

In a year we have amassed 10,000 supporters 
and are fighting hard along with them for the 
rights of the autism community across the UK. 

Tune in to our new You Tube channel for videos 
from our core group, from our Facebook regional 
group co-ordinators and of course our supporters. 

We will be posting new videos at regular intervals over 
July and will end the month with our new campaign video.

Our latest video lets you see the faces behind the names of the 
core ACT NOW group: Carole, Teresa, Anna and Mavourneen. 

"Social change is like a standing ovation -- at first 
only a few may stand up, then more, then everyone. 
Don't be afraid to stand up and clap for what is right.
Others will follow eventually." - Molly Melching.



Tonight we are launching our You Tube channel and video.
 Later in the month we will launch our new campaign video. 

It's not too late to get involved! if you want to make a short 
video get in touch for more information. 

We are looking for guest blog posts from our 
supporters too, so get writing and send it in!

"Social change is like a standing ovation -- at first only 
a few may stand up, then more, then everyone. 
Don’t be afraid to stand up and clap for what is right. 
Others will follow eventually." - Molly Melching.

Wednesday, 6 July 2011

Happy Birthday to us!

We are celebrating our first birthday 
at the end of this week! 

Look out for the launch of our You Tube channel, 
new campaign videos, guest videos and blogs 
by some of our supporters and area co-ordinators. 

 We are still looking for more blog posts and videos 
so email Teresa if you are interested in letting 
people know your story about life with autism and 
how the cuts are affecting you or your loved ones.

Sunday, 3 July 2011

One year on!

Over the last year, ACT NOW has amassed 10,000 supporters and we are very grateful for your ongoing support but we need your help to carry on with our campaign and submit our next report to Government: 
  • We need to know how you feel one year on from George Osborne's emergency budget; are you fighting the same battles or have you lost services as professionals have left their posts or due to LA cuts? 
  • How do you feel about the change from DLA to PIP?  
  • Are you still worried/more worried about the WCA?  
  • We also want to hear from those who will be affected if the proposal to reduce the disability premium in Universal Credit for those with children on middle or low rate DLA is approved - how will this affect you?  
  • Will the cap on benefits affect where you can live?  
We really need your comments or stories, you can stay anonymous if you prefer. We are looking for people to record videos or write a guest blog post. 

Please get in touch! You can leave a comment on our Facebook page or email Teresa for more information or to share your concerns or stories.  

ACT NOW is 'Marching on'
We're all in this together,
Standing up for Autism.
Will you stand up with us?
Keep up with us?
Join us?

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead.

Friday, 1 July 2011


We are celebrating our first birthday in July! We are so pleased to have amassed 10,000+ supporters in that time, gathered many MP supporters and spent time at the Houses of Parliament representing the voice of the autism community across the UK. Our work goes on and we are will continue to march on, campaigning on your behalf alongside you.

To celebrate the end of our first year and to celebrate YOU we are launching our You Tube channel and are looking to you our supporters for video contributions. Do you want people out there to know something about your life, how cuts have affected you, your experience at the hands of ATOS or JCP? Are you a carer struggling with little or no respite? Do you have a positive story about living with autism you want to share? Please contact Teresa for more information.

We would also love it if you would write a guest blog post (this can remain anonymous if you prefer) about any of the same topics. We aren't looking for a masterpiece of writing, something written from the heart is all it takes. (We will of course accept a masterpiece of writing too!) Send any contributions to Teresa or contact her for further information.
This month it's over to you - what do you want people 
out there to know about your life?

Come on! ACT NOW and help us celebrate the end of 
a busy, productive year and the start of the next one!