The Unexpected Crisis

I find it very difficult to make any sense of another depressing week on Planet Social Care. This week we heard the heartbreaking news that Eden Norris has been readmitted to an ATU, just three months after he was discharged from an eight year detention. Apparently there had been some “difficulties” over the past couple of weeks and an “increase in challenging behaviour” which led to the provider agency pulling out of the contract with no notice.

I read a call earlier for no criticism to be attached to any of the various agencies/bodies involved in Eden’s care in case that deters future prospective suppliers. I hope this post isn’t perceived as criticism, although I do believe that accountability is important if any lessons are to be learned from this sorry episode. I can’t imagine how Eden must be feeling right now after being wrenched away from his home just as he was building a new life for himself. It’s vital that each player in Eden’s life is transparent and frank about the mistakes that have been made and what is needed to effect a successful return for Eden to his home. It would be totally unfair if the burden is shifted into Eden’s shoulders and the all too common explanation of “complex needs” being used to avoid accountability.

I can’t help wondering if we’re encountering another strand of the “not quite human” shadow that plagues much of learning disability service delivery. I always feel that the psychological and emotional impact of being institutionalised is given very little weight and worse, is often dismissed as a consequence entirely. We readily accept the difficulties the problems servicemen and women experience after being demobbed. We can understand and are reasonably tolerant to people’s difficulties after being released from prison. We even devote airtime and newspaper inches to the plight of celebrities adjusting to “real life” after spending three weeks in the jungle. But learning disabled are meant to come out of an ATU without any scars from the experience. It took us four years after Steven came home to stop him asking permission to use the toilet, seeking authority to get a drink from the fridge and requesting others’ agreement to put a DVD on. These are all minor examples of institutionalism but they are illustrative that a different set of “rules” exist in your home than in a hospital and after a time away, they have to be relearned. You can imagine the tension that occurs when someone whose every move and action is controlled for several years is suddenly presented with an independent, person centred approach to living their life.

The other question I have is where is the crisis management? I’m not undermining my argument in the previous paragraph with that question. I would say the effects of being institutionalised are dead normal considering the life lived in an ATU. I’m framing it as a “crisis” because that’s how the professionals would frame it. Considering the pertinent articles in the Human Rights Act and the Mental Capacity Act insists on the “least restrictive option” for someone’s care, you’d have thought that the last resort would be readmission. Sometimes that simply means throwing in extra resources (people, money, time etc) until the crisis has passed. I want to give a massive acknowledgement of how brilliant Hillingdon have been at this, twice in the past four years. In 2014, the day after Julie died, the social worker phoned me to ask if I needed some extra support in the next few weeks. I didn’t have to ask: she knew there would be practical things to attend to at a time of great emotional upset. The same thing happened when Steven moved house in 2016. I invited the new social worker to see the state of the place and she asked what extra support I needed for the period up to the move. She knew I was needed at the new house and wouldn’t be able to fulfill my usual caring committments. I wouldn’t have classified either of these events as a “crisis” but they were both big life events that needed additional help to manage. Why couldn’t the same, kind offer have been afforded to Eden?

I suspect that there were no extra resources to throw in because there weren’t sufficient resources in the first place. How many times have we heard about a care package collapsing because of insufficient resources being made available? We did some ad-hoc research for 7 Days of Action and over half the people who contributed told how their son or daughter ended up in ATU because of flaws in the support provision or the support provider suddenly pulling out of the contract. I think provider agencies in their desperation to win a contract overreach themselves or make promises they can’t keep. Years ago, in the first year after Steven left school we had two horrid experiences of this. The first agency the LA commissioned turned out to be the same agency the council used to supply the staff at the ATU. We didn’t know that at the time obviously. It was only during the internal investigation into the assault on Steven by one of the staff that we discovered that the agency didn’t actually have a license to provide domiciliary care. They were dropped by the LA overnight and two months later we were allocated a new agency. Two weeks into the new arrangement we were told by the agency that Steven had been banned from the swimming baths. I phoned the manager of the pool who said that Steven hadn’t been banned but the staff at the pool were concerned because all the support workers turned out to be non swimmers and were leaving Steven on his own in the water. Once the truth was out, the agency pulled out of the contract, again with no notice. They knew about Steven’s swimming when they agreed the contract but didn’t think it was important enough to employ people who could swim.

Supporting someone with autism and/or a learning disability isn’t rocket science. It’s framed as “complex” for two reasons: it inflates the fees that agencies can charge and it avoids accountability by putting all the spotlight on the person being supported. People like Eden who have been discharged from long spells in an institution need their experience validated and respected. They don’t warrant blame for other people’s shortcomings. They need people who can give them the space and the humanity to work through their trauma whilst trying to construct a new life for themselves. Readmitting the person to the very place that caused the trauma is cruel beyond words. And so very, very unnecessary.

I hope Eden comes through this. I’ve never met him but I’ve heard from others what a fine, stoic chap he is. To be honest I have more faith in Eden’s resilience than I have in the State’s ability to get it right and do the right thing by him. They haven’t made a very good start. I want someone, anyone involved in Eden’s care to recognise that he is human and that his human rights are as valuable and important as anyone else’s.