DLA to PIP … my response to the government

I am a parent of a young adult with autism. At present I am his appointee until he turns 18. 

I have several concerns regarding the change to PIP: My son has been discharged from the care of his paediatrician at age 16 and has no ongoing health professional contact … How will this affect his application as there will be no updates since age 16 … 

PIP’s proposal is that “key to the benefit will be an objective assessment of individual need” and that “advice from an independent healthcare professional should be an important part of the new process”.

The majority of individuals with ASD rarely see a GP, often due to an inability to cope with waiting or lack of physical health problems. Often they don’t have a social worker. These are examples of how the proposed system discriminates against individuals with ASD. Particularly adults, as they often don’t see any professionals in relation to their condition of ASD. If they develop mental health problems they may see a professional in relation to that but not about their ASD. They majority will have received a diagnosis but it is rare that an ASD professional will have an ongoing role with them. This is due to things like lack of funding, poor strategic planning, a focus on diagnosis and meeting targets, lack of resources and the fact that services are completely overwhelmed with the rapid increase in numbers presenting with indicators of Autism Spectrum Disorder.

Why is there a continued need for re-assessment of what is a life long disability? The current review system for conditions such as Autism Spectrum Disorders is making an assumption that ASD improves. This causes even more strain and anxiety for carers having to complete and respond to, sometimes annual, reviews. ASD is a lifelong condition that has no cure

Any letters asking individuals with an ASD to make contact are likely be disregarded or put to one side to deal with at a later date. 4 weeks seems a very short time for a person with a social and communication difficulty to read, assimilate and return a form. I think it is crucial that applicants are allowed a supporter/advocate during assessment …

There is a problem with communication/understanding as a foundational aspect of a  diagnosis of autism… There is a great risk that people with an ASD will either try to give an answer that they hope will be ‘right’ in order to try and meet what they think may be the assessors expectations or will give short monosyllabic replies in order to ‘escape’ the enforced social contact in as short a time as possible.

The UN Convention on the Rights of Persons with a Disability, which the UK has signed up to, requires that assessments are carried out by medical/healthcare professionals with an expertise in that particular disability.

Specifically, due to the complexity of ASD and its individual presentation any meetings with healthcare professionals for an assessment for this benefit needs to ensure that the professional has expertise in ASD. This is a social and communication disorder and individuals struggle to fully understand others, make their own voice heard and understood and to grasp the impact of their condition upon them. If not, this would clearly be in breach of the UN Convention on the Rights of a Person with a Disability.

The person from the DWP who came to assess the situation with regard to my son requiring an appointee bluntly stated that ‘if he was doing GCSEs then he shouldn’t need an appointee’ – she obviously had no expertise in ASD at all … Problems with social interaction and communication (social and emotional intelligence) do not necessarily imply a low cognitive function but can seriously interfere with the ability to lead full, active and independent lives.

PIP’s proposals appear to continue to take greater account of aids and adaptations and, to my mind, reveal the continuation of physical interpretation of disability despite its claim to address the changing approach to disability by using a social model of disability. The present DLA form is a nightmare to complete as it focuses on physical needs much more than mental/social/communication needs. I have a first class honours degree and it took me three weeks to complete my son’s recent form … What chance does a young adult who requires assistance from a support assistant and also technology to access schooling have to give an adequate picture of how their condition affects their life – even assuming that they are mentally able to assess how their condition affects their needs?

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