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THOSE with autism, their family members and advocates claim that the emphasis on the face-to-face assessments in the personal independence payment (PIP) process is leading to them losing this benefit or receiving downgraded awards.
This is exacerbated by a general lack of awareness about autism among the assessors, which can lead to the bizarre situation of a health visitor, nurse or paramedic acting as an assessor, contradicting the view of a senior consultant.
Autism spectrum condition (ASC) affects how a person communicates and relates to those around them.
Everyday interactions, insight, judgements and decision-making can all be problematic, along with high levels of anxiety in new or confusing environments.
Autism is also not well understood. Although there are some features that typify the condition, there are also many features unique to each individual.
Completing a PIP application form is a tricky and arduous task for most people, with plenty of attempts by the Department for Work and Pensions (DWP) to trip people up through contradictory questions.
For someone with autism the problem may be that they have quite rigid black and white thinking.
Therefore, if a question asks: Can you make a meal, they might respond by putting down only “yes,” despite the “meal” being no more than a slice of toast.
This is why Kim sat with her 22-year-old son Gareth at the kitchen table to help him with the form. “If he was doing it by himself, he would say he was OK doing everything as he likes to convince himself he is OK. The reality is we help in every aspect of his life,” she says.
Disability and benefits adviser Helen Frost, speaking from her office in a busy centre in north-east England, says this is an important point. “For a person who has struggled with certain activities and socially, I often find that people overestimate their own abilities and are often unable to see themselves as others around them can. They are therefore often not the best judges of how their condition affects them.”
Jack, another young man with autism, found that, while he was waiting for his PIP assessment form to arrive, he felt stressed. “I felt under scrutiny as if they thought I was somehow bad or wrong.”
He had help from his mum Ruth in completing the form, but finding all the bits of proof to go with the form and his worry that it wouldn’t be good enough made him feel despondent.
Once the form has been completed, a date is sent for the assessment and again those with autism appear to be at a serious disadvantage.
First, the extreme anxiety provoked by undergoing an assessment. Second, if the assessment takes place at a centre, there may be no quiet rooms available, so the sensory overload of a busy, noisy and often hot centre, with some people upset or angry, can be overwhelming.
This is before the assessment has even begun.
People with autism often struggle to say that they find an activity difficult to do and some might say anything they think the assessor wants them to say, simply so they can get out of the situation as quickly as possible.
If this was matched by an assessor who had little knowledge of the condition and wasn’t prepared to scratch below the surface of a hastily given and often one-word answer, then the chances are the person with autism will be in danger of losing this important gateway benefit.
Frost says this lack of understanding about autism is commonplace and something she sees regularly not simply in assessments but also in appeals, with some of the “disability specialists” displaying an alarming lack of knowledge about the condition.
Lee asked for an ASC-trained health practitioner for his assessment, but the nurse he was given didn’t have training.
“She said very clearly she knew nothing of autism but was actually very nice.”
Lee was then told he had to go to another assessment. “Like the first assessment, I struggled to answer the questions but, instead of being understanding, she was completely different and pushed answers on to me. I felt bullied.”
What Lee later found out was that he’d seen the same nurse on both occasions. The first time she was helpful, the second time definitely not.
His previously high care component was dropped down to low and he lost all of his mobility allowance.
Through an appeal, his high rate care component was put back in place but, due to an ongoing court case, not his mobility allowance.
“I might have to be reassessed,” Lee said, “but I really, really don’t want to go through that all over again.”
During his assessment Jack felt the paramedic who was assessing him didn’t understand his problems. When the report came back, he read it with his mum.
Ruth felt the DWP had relied heavily on the 40-minute meeting with a non-expert, putting aside all the information they had recorded and provided evidence for.
Positive aspects about Jack were recorded, but any negative points, such as him being effectively housebound due to his anxiety, were not.
“I think that the DWP are banking on people not appealing,” Jack said, as he half-turned to his mum, saying: “I wouldn't have tried to do so at all if my mum hadn't been there to help with the appeal and tribunal.”
When Kim and her son opened the award letter and report, she was horrified. Like Jack, Gareth was also assessed by a paramedic.
Kim said there were assumptions as well as lies.
“He assumed Gareth had good eye contact when in fact he looks at mouths. He said because he played video games, he was capable of cooking a meal. He asked the questions but clearly didn’t listen to the answers. All Gareth got was two points, so no award. I felt it was a pointless exercise — so many people online have said the exact same thing.
“Why does the opinion of a paramedic trump what the specialist had to say who diagnosed my son?”
It is clear something needs to change to protect those with autism, when it comes to PIP assessments, particularly for those not living in supported accommodation.
The whole process is one which can cause immense stress and anxiety and the focus on verbally communicated information, combined with a general lack of awareness about autism and few ASC nurses, undoubtedly leads to unjust decisions for this key disability benefit.
Ruth Hunt is a freelance journalist and an author.
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