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