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
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
Anna Kennedy OBE
Act Now For Autism Core Team