Care in the Community?

I watched the news last night horrified as I saw a broken-hearted mother speak about her campaign for parents’ rights : Her adult son had autism and had expressed his desire to live apart from his family and so he had been set up with a placement in ‘supported living’ where he would have constant adult supervision. He broke off contact with his mother and though devastated, she respected his wishes and left him alone. It seems that nobody was looking after his best interests once she was out of his life. The authorities clearly thought that he had more capacity than he actually did and his status and housing was reduced from supported to ‘independent living’, unknown to his mother. The young man could not cope with day to day decision making and as he missed a review meeting date, his benefits were stopped. He had no advocate or support and eventually his dead body was found in a cupboard after 9 weeks.

Under the current law, his mother had no right to contact or to even enquire as to how her son was, once he had moved away, yet nobody else was picking up that caring role and as a result, he needlessly died. ‘Professionals’ who did not properly know this young man and his capabilities, made a devastating decision about his living arrangements and they did not even need to consult his family as he was deemed to be an adult.

My husband and I watched this news story, horrified, then hugged Joshua closely to us. In many ways, Joshua is actually lucky, as I think life is much harder for those of his peers who appear to be more able than they are. Joshua will never be put in this situation and as such, he will always have his parents there to defend and protect him from the authorities. I do not believe that Joshua is frustrated by living at home with his parents and monthly respite gives us all the break from each other that we need. The much more vulnerable young people have aspirations to be independent and have the same opportunities as their peers – they think that they can live independently, forge relationships or go to college then get a job, whereas in reality they might need a lot of support to achieve those dreams. These young people need to be encouraged in their dreams but the appropriate support needs to be in place to protect them as they are so vulnerable.

The distraught mother that we watched on the news has to live with what happened to her son and she is trying to change the rules so that a positive comes out of this tragic situation. I could feel her pain as I held my own teenaged son close.

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