Joshua will be 18 next spring and so we are beginning the transition process, from child to adult, which already seems to be a minefield, even though we have the much-valued support of his Adult social worker. We have already had difficulties with Joshua’s finances : I could not release some childrens savings bonds that Granny had given him, as they were in his name and so he needed to sign the form to redeem them and to access his cash. I explained that Joshua could not read a form or sign his name and I was told that he should not have received these bonds unless he had capacity to understand the concepts of interest accrual etc. I calmly explained that when my mother gave him his first bond when he was born, nobody knew what his capacity for understanding might be. In the end, only when I involved a solicitor to ask questions on our behalf, as I was too exasperated, did common sense prevail and the savings were released to Joshua, via my bank account, on the strict understanding that I only use the funds for his benefit! They are buying him an off-road wheelchair so I am confident that I have not abused his savings by treating myself!
The second time when it became an issue was with respect to his benefits when his Disability Living Allowance became Personal Independence Payment and the DWP insisted on writing to my son…Dear Mr C….. I called them immediately and explained about his mental capacity and told them that I would be acting on his behalf, reading and signing any letters and forms. They accepted my explanation, or so I thought, as the week after Mr C received another letter asking if he was happy for me to become his appointee!! So another phone call to explain that Mr C would not be able to read or sign their form and they apologised… The week after, another letter to Mr C asking that they met with him and his potential appointee to assess my worthiness! Faced with such automated letters and lack of common sense, it is very difficult to hold it together. a young girl from DWP came to school last year, we met in reception, she tried to engage Joshua in conversation and immediately realised hs lack of capacity and asked me to sign a form and then I was made his appointee!
I guess we have to jump through these hoops because of the abuse that some disabled young people have received but what happened to ‘innocent until proved guilty’? In all of his 17.5 years of life, we , as his parents, have never done anything that was not in his best interests, based on the available information at the time. Now up until 18 years old, we have that right as his parents but once he is 18 years old next year, he is an adult and therefore he has the right, not the capacity but the right, to make his own decisions. We have explored, with a solicitor at our own cost, whether we should be applying for Power of Attorney for Joshua but as he does not have mental capacity to sign that power over to us, and never has had, it is not appropriate.
It seems that the next year is going to be challenging, that everything that we have learned up to now about being the parents of a child with special needs now becomes irrelevant as he will become an adult. The law no longer recognises our parental authority, even though he has the cognitive abitity of a toddler, and so I can see some grim battles up ahead where we will be arguing on the side of commons sense and we will be tripped up by the law and the inflexibility of organisations like the Department of Work & Pensions. I come back to a question that I ask most days, is life not hard enough with a son with special needs without this additional obstacles thrown in our way. I have written about feeling as though I am walking along a tightrope before: well, now all sorts of new weapons are being thrown at me as Joshua’s 18th birthday approaches, trying to knock me off balance. What should be an exciting milestone birthday, will be a landmark and the start of a new chapter in our lives as Joshua’s parents. Wish me luck!