By Mark Neary
Three years ago this week I was shown the welfare deputyship application that the council had submitted to the Court of Protection. At the time, they had held my son Steven for a year in a positive behaviour unit and its plan was that he should not return home but be moved to a hospital in Wales, over 100 miles away, under section. Steven has autism. Thankfully, three weeks later the judge lifted the deprivation of liberty authorisation that the council had used to keep him in the unit and ordered that he return home straightaway. Six months later, at the judicial enquiry, the judge commentated that if the council had got their way, “Steven would have faced a life in public care that he does not want and does not need”.
Four weeks ago, Steven was allocated his first home of his own – a lovely two bedroom house in the perfect location for him – near to his extended family and close to all the places he goes to during the week. I am classified as his live in carer but when the time comes when I am no longer around or unable to care for him, Steven will have the security of his own home.
He has come a long way in those three years. But every day, as he gets on with his life, there are constant reminders of what might have been. In their court application, the council proposed that his contact with me and his family and friends would be “by remote access, such as a webcam facility”. I still shudder when I imagine how Steven might have coped if the relationships that give him the most meaning were reduced to a pre-arranged internet meeting. This post is a celebration of the life he has fashioned for himself and the constant ache that it may have all been taken from him through the actions of a risk adverse local authority.
On Mondays Steven goes to the local Arts centre where I have my counselling practice. He uses the music room and has a sing song and plays piano and guitar with his support worker. On the first day he made friends with Raj, who teaches Art in the next room. Every week, they have lovely conversations about music and Steven’s interests and Steven now looks upon Raj as a good friend. Raj asked Steven if he wanted a painting for Christmas and Steven immediately replied that he would like a painting of Whistler’s Mother – this is a nod to Steven’s hero Mr Bean’s trip to America. And so it happened that on Christmas Day, we’ll be eating our lunch, with that “hideous old bat” watching over us. Steven would never have met Raj if he’d been sent to Wales.
On Tuesdays, Steven goes to a swimming pool and has made two good friends there; Tyler and Dee. They chat about Take That and Countdown and the guys cheer Steven on as he does his lengths of the pool. One of the support workers told the guys about the plans of 2010 and they were horrified. Dee doesn’t have a webcam, so that relationship would have been lost if he’d been sent to Wales.
This afternoon, Steven was crying with laughter as he and his support worker shared their familiar joke that Cliff Richard is really called Chip Richard and sings “Smelly Toes and Wine”. The set up to that important moment could never happen online.
I could go on. Valuable relationships would have been lost forever. Steven can’t converse to order, so the “webcam facility” would have been a terrible strain. And his relationship with me, that is so important to both of us, would have been fatally damaged. I shiver about that when we sit in his new living room discussing why Basil Faulty hid a kipper in his cardigan.
Christmas brings these feelings to the fore. Not just because of the anniversary but I remember a conversation with the solicitor prior to the court case when he asked me to consider the worst case scenario. That would have meant pitching up at a B&B on Christmas Eve and turning up at the hospital on Christmas Day and opening presents on a cold ward. Perhaps a few Skype messages from his Uncle and friends. This year, Steven is planning a Mr Bean. Abba and Pringles day and thankfully, he is allowed those choices because he has his independence.
But securing that choice took a year and a High Court battle. Surely, it doesn’t have to be like that.
About the author
In June 2011, Mark appeared as a litigant in person at the High Court in the landmark case, Hillingdon vs Neary. The judge ruled that the local authority had illegally held Mark’s autistic son, Steven, for a year in a care home, infringing his article 5 & article 8 human rights. Mark was praised by the judge for his courage and dignity. Mark regularly speaks at social care and legal events on the Mental Capacity Act and Deprivation of Liberty Safeguards. Mark has had two books published: “Get Steven Home” (2011) and “There’s Always Something or Other with Mr Neary” (2013). He is currently working on his third book – “Carespeak”, which examines the language of the social care world.