For the 3rd time in 5 years, Joff has been called by the DWP ( Department of Work and Pensions) to prove he cannot work in order to keep his claim for Employment and Support Allowance ( ESA – he’s in the Support Group, ie those for whom working is impossible)

I have never tried to avoid scrutiny, or obscure any aspect of Joff’s capabilities or support needs. The WCA form of 20 pages now asks you to send in “supporting evidence” – letters from doctors, lists of your prescription medications, certificates such as being registered blind etc.

I cite that his main skills in life are finger feeding and looking at sunlight, but this is so reductive. He is simple in his tastes, yet a complex person to understand. However, below are the paragraphs I intend to send on the form where they ask at the start for an initial description of your disabilities and how they affect your daily life.

I ask you, having read this, would *you* need extra certification or 19 other pages of questions to know that Joff isn’t going to manage paid work? Would *you* think that this is a good use of the DWP’s time and energy, or indeed, mine? Do you know that it is also possible having all that information on paper, that they can then call Joff in for a face to face interview and physical assessment?

There simply must be a better way.

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Jonathan is a 21 year old man living with Lowe Syndrome, also known as Oculo-Cerebro-Renal syndrome or OCRL. It is a complex, ultra rare, life limiting and life threatening genetic condition that affects 1 in 500,000 males. He has been affected from before he was born.

Jonathan has profound and multiple learning disabilities, is registered blind, has epilepsy, hypotonic muscles, low bone density, skin cysts, Fanconi Syndrome – also called Renal Tubular Acidosis or RTA, is doubly incontinent and has autism. Treatment for Lowe Syndrome is supportive, there is no cure.

Jonathan cannot speak, read, write or count. He has no understanding of common concepts like time, days of the week, money, danger etc. He is dependent on constant adult support for washing, dressing, eating and drinking, getting around, playing, taking medication, personal care, looking after his contact lenses, and keeping him safe.

In 2010, Jonathan’s dad and I applied for, and got, lifelong Legal Guardianship of Jonathan’s welfare and finances under AWIA 2000.

Jonathan uses a wheelchair outdoors,  wears orthotic shoes, has handrails and a hospital bed at home. He also uses a special harness to wear travelling by car to keep him safe.

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(AWIA 2000 is the Scottish Adults with Incapacity Act, which gives suitable people who request it the legal right to act on behalf of, and in the best interests of, a person who lacks capacity to understand the world and give informed consent. It was a very intensive process of checks and balances to go through but now gives us peace of mind to always be the people recognised in law to be Joff’s advocates.)