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

Written by Carole Rutherford (Act Now For Autism and AIM) and Sara Heath (Shropshire Autonomy