Written evidence from Name Withheld (PEA0180)
My daughter was assessed for PIP in 2015, after reaching 16 and having previously been receiving DLA from the age of 8. She has a diagnosis of mild learning difficulties, autism, dyspraxia and also has a genetic chromosomal disorder resulting in polycystic kidneys and a likelihood of developing diabetes in adolescence.
We were reassessed in Walsall, West Midland by Capita. I accompanied my daughter to the meeting as she would of not been able to answer the questions independently due to difficulties associated with autism (i.e. slower processing time, social interaction difficulties and difficulties in understanding communication). It was very clear that the assessor had very little or no understanding of autism and the way that this affects people and no adaptations were made to ensure that the interview was assessable to a person on the autism spectrum i.e. clear concise questioning, time to process. This meant that my daughter was confused by the questions and I frequently had to rephrase or answer on her behalf. On numerous occasions, my daughter turned to ask me what the question meant, which the assessor was obviously party to.
When we received the letter from the department of work and pensions, we were extremely shocked to discover that my daughter had scored no points and that her PIP would not be awarded so I immediately requested a copy of the report. The Department of work and pensions informed me that I would need to request this from Capita and would take a significant amount of time.
After receiving the full report, I was extremely upset and shocked to discover that the report was full of lies, inaccuracies and information was missing. The report also contained useless and ill informed observations such as 'Sky reports that she has dyspraxia, however, I observed her putting her bag on her shoulder normally'. This is despite the fact that my daughter’s dyspraxia was diagnosed by a professional in the NHS who specialised in this area and was under a paediatrician for a number of years. The report did at no point highlight the fact that my daughter continually asked me to clarify questions in the assessment and rather stated that she appeared to understand.
I appealed the decision and was successful in being awarded PIP after a time period. However, the experience was traumatic and stressful for both me and my daughter and during this time I spent a great deal of time on the telephone and writing letters to challenge the decision. There is much evidence to suggest the large amount of time that carers spend in their caring role and the additional stress that they frequently face. This situation added to this and made me feel very angry that a system that is designed to support the most vulnerable is built on lies and deception.
I attempted to make a formal complaint about my experience but the department of work and pensions said that they could not take a complaint and I would need to go to Capita. However Capita did not have a complaints procedure as such and made it very difficult for me to take this further. I did write to the chief executive to bring the matter to his attention. He responded to say that effectively it was my word against hers (the assessor) and that the department of work and pensions do not require that the assessors are autism trained.
I believe that the lack of adaptation in the interview to enable my daughter or any person with an autism spectrum disorder, understand and be able to fairly access the assessment interview, is in itself a breach of the Equality Act. Autism affects a person's social interaction and communication so it is absolutely essential that assessors are fully trained to enable them to fairly interview people on the autism spectrum fairly. It is in effect, the same as arranging an assessment for a person in a wheelchair on the second floor and without a lift. This breach would not be allowed in any other setting such as in university or school where adaptations should be put into place, so it is shocking that a service that is specifically for people with disabilities should demonstrate such behaviour. Government departments should be setting an example in this area, and require outsourced services to do the same.
Since this experience with my daughter, I have been made aware of a large number of people with autism having similar experiences. I work as an autism specialist at a university and many of the students that I support unfortunately experience similar issues. I am deeply concerned that those who are vulnerable and typically find it hard to speak up are being disadvantaged by the process, and those with no support have little chance of appealing.