Autistic Scots face threat to benefits

By CRAIG BROWN
Published on Sunday 12 February 2012 00:00

THOUSANDS of Scots with autism will be forced to undergo personal assessments that could deprive them of vital cash payments under plans to reform the benefits system.

The UK government aims to replace the Disability Living Allowance (DLA) with Personal Independence Payments (PIP) as part of a crackdown on fraud. But campaigning group the National Autism Society Scotland (NAS) fears the changes will have a huge impact on around 34,000 Scots aged 16-64 with some form of autism who want to live independently.

The concern centres on the planned shift from the DLA’s document-based assessment – including medical and social care reports – to face-to-face evaluation, which will be repeated despite the condition, which affects communications and social skills, being lifelong and incurable.

NAS says autism is extremely difficult to gauge through such face-to-face assessments.

Anna Nicholson, NAS Policy and Campaigns Officer, said the DLA system, which can lead to payments of up to £125 a week, was working for people with autism: “The DLA is often the only benefit that lots of people with autism – particularly those with Asperger and high-functioning autism – can get, because they often don’t qualify for social care funding from their local authority and benefits like that.”

Nicholson said the flexibility of DLA suited the complex, varied nature of autism, paying for the diverse needs of sufferers, such as travel training, a support worker to teach social skills or for special clothing for various sensitivities.

The NAS said a trial run of the scheme, carried out by the government last year involving 60 autism sufferers, highlighted severe shortcomings. Many of the assessed said little attention was paid to their communication abilities or the nature of their condition.

Jane Hook’s daughter Rachel, 25, receives the higher rate of DLA and has severe autism, making her uncommunicative and challenging in the wrong environment. She is also wary of small dogs and children. Rachel, a talented artist, lives in a flat with a carer in Alloa where she is able to use a special Art Opportunities centre, for people with autism to develop their creative skills.

Hook fears the new assessment could jeopardise this. She said: “The DLA allows Rachel extra money to live on. Everything costs more for her, even haircuts cost more because of sensory issues. Shoes cost more because she has very narrow feet – something I only discovered after she’d broken her toe-nails and damaged her feet, because she doesn’t complain about pain –and the special shoes are really expensive. The DLA is a lifesaver for us.”

Laura Alexander’s son Kyle, who is nearly 16, has autism and learning disabilities and she is now seeking DLA. “We’re at the stage where he needs this support. He has a lot of sensory issues, changes in lighting, bright light can throw him. He’s sensitive to noise and is quite scared of dogs and small children, so he does get startled in places if he doesn’t have his family around him.” She said the PIP assessment would be a challenge for Kyle, who is non-verbal – that is, has difficulty speaking – as in the past even sitting in waiting rooms has proved difficult.

Kyle is at a school for children with autism, but his mother is now looking to a future place for him at a college or work experience. She said: “The DLA is important because it will give him the opportunities to do things and contribute. He definitely thrives on feeling useful and being busy, because idle time for people with autism is real down time. They can get very stressed and anxious.”

Dr Robert Moffat, national director of NAS Scotland warned the new assessment for PIP would make a difficult situation worse. He added:“We know the government is under pressure to cut costs, however they risk creating a false economy, as the loss of crucial benefits leaves people struggling and needing greater levels of support in the longer term.”

A spokeswoman for the Department for Work and Pensions said PIP would “better recognise the needs of people with severe mental health conditions and learning disabilities”. She added: “Most individuals will have a face-to-face consultation as part of their claim. This will provide an opportunity to explain how their impairment affects their everyday lives, rather than trying to self-assess through an over-complicated application form.”

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JennyAllan

Saturday, February 18, 2012 at 09:46 PM

My now adult grandson is on the autistic spectrum, but is high functioning. Persons like him tend to be categorised as having 'Asperger's Syndrome', but unfortunately there is as yet NO proper definition of this condition. Sufferers are often simply dismissed as 'weirdos' or eccentrics or worse-GEEKS!! Persons with conditions like Tourette's Syndrome and ADHT are now acknowledged to be 'on the autistic spectrum', but again they are 'brats' as children and 'hooligans' as young adults. Our jails are full of them, often because they simply do not have the verbal and communication skills to 'argue their corner' and often end up getting the blame for other persons' misdemeanors. For these persons, imprisonment simply serves to worsen their already fragile emotional condition, and referral for psychiatric treatment inevitably results in them being prescribed powerful anti psychotic drugs, very often to their deteriment. Young children are prescribed 'chemical coshes' like Ritalin, in order to make their behaviour manageable in schools, but these drugs have powerful, often permanent side effects. As Autism Rights asserts above, there are no meaningful collated statistics for the numbers of autistic persons, but everyone involved with education, healthcare and social work KNOWS there has been a recent explosion in autistic spectrum disorders and that this is costing huge amounts of public money, unsustainable in the present economic climate. The inevitable result is attempts by Governments to redefine autism disorders in order to remove some persons from elligibility to benefits. Those persons with profound disabilities will retain their benefits, but what will happen to those persons whose disabilities are less obvious? My grandson looks normal and is quite articulate, in a stilted rather 'old fashioned' sounding way, but he has very poor physical coordination and still cannot tie his shoelaces. He has other purely physical problems too, and has special dietary needs. It all costs money. Lots of it!! Autistic persons are very 'vulnerable' and my grandson's benefit presently includes a small mobility component to keep him safe. He will NEVER be 'streetwise', and although we hope one day he might obtain gainful employment enabling him to support himself financially, he will always need emotional support and care from family and friends. We worry!!

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Autism Rights

Friday, February 17, 2012 at 12:29 AM

Why has the Scotsman's moderator censored a comment by a parent? Are we not permitted to voice criticism of this article, the government, or the misrepresentations of the autism charities? For the record, there are absolutely no statistics nor any evidence that there are 34,000 people aged 16-64 who have an Autistic Spectrum Disorder (ASD) in Scotland, in spite of the claims made by the National Autistic Society that the 2011 Census would provide statistics, based on a multiple choice question that Autism Rights warned would fail to provide the cost-effective statistics that are desperately needed, to enable budgeting for services that are appropriate to the needs of people with ASD. Ten years ago, the need for statistics was one of the main recommendations of a government sponsored Needs Assessment report on ASD. The best current guesstimates put the number at somewhere around the 10,000 mark - a fifth of the figure routinely spouted by the NAS as if it were an established fact, which it most certainly is not. One of the places where some of these people with ASD might be `hiding` is the mental health system, as we know of several families who are trying to disentangle their sons from this system, where their physical and mental health is being destroyed, through the ignorance and brutality of those who run this system. But, so far no campaign has been run by any of the autism charities to bring this to public attention, nor any investigation taken place of just how many people with ASD are caught up in this system. Autism Rights recently submitted our views on the government's Mental Health Strategy consultation, pointing out that 2 previous consultations in 2001 and 2009 had responded to calls for people with Learning Disabilities (which were deemed to include those with autism ) to be taken out of the provisions of the Mental Health Act. This recent consultation has completely ignored these calls, and is highly circumscribed in its scope. The vast majority of people with ASD in Scotland do not have any of the care or social provision described in the article above. Many families receive no provision at all. We know that the mental health system is too often the default setting for `care` of adults with autism, because the adult provision made by the autism charities, although very costly, provides for a tiny proportion of the adult autistic population - no more than a hundred people or so. The fact that the DWP expects the majority of people with ASD to explain their difficulties, given the nature of their disability, reflects the utterly ineffectual attempts by the NAS down the years to communicate the nature and needs of people with autism, let alone to push for the National Standards that would force local authorities to make adequate provision. www.autismrights.org.uk

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Dave Cunningham

Wednesday, February 15, 2012 at 11:19 AM

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