Flash Says…

Archive for October 2010

Steven Neary is a 20 year old autistic man who lives with his dad Mark in Uxbridge, Middlesex. At Christmas 2009 Mark was struggling with flu, so Steven went to stay for a couple of days in a respite home which he’d visited several times previously.

This time, however, the council decided to assess Steven again. They moved him to a different residential centre, and as it was unfamiliar to Steven he reacted with meltdowns and frustration. His challenging behaviour led to the council issuing a Deprivation of Liberty Order – meaning he had to stay at the centre, and could not go out without two people with him.

All Steven wants to do is “go back to the Uxbridge house”. As for Mark – his heart is breaking.

The council say that Steven’s challenging behaviour would be too much for his dad to cope with, but of course by being moved to an unfamiliar home, away from his dad, Steven finds it hard to cope and reacts in the only ways he knows how. For example, in the 4 months before Steven went to respite care, Mark and his carers had recorded 12 incidents where for example Steven had kicked out, or pulled someone’s finger. Over the following 7 months, the care home recorded 306 incidents. It’s clear that Steven is not coping in enforced residential care. Moreover, until he caught flu last Christmas, Mark’s care of Steven had never been criticised. Steven was happy at home, his behaviour was well managed, and he had 2 to 1 care outside the house, the same as at the care home. So why have the council kept him captive?

It all seems to stem from an event when Steven somehow managed to leave the care home on his own. He went out into the street where he met a vicar, and removed the man’s glasses. Technically, this is seen as an assault. But where was the supervision that should have stopped Steven getting out on his own in the first place?

A lot of Steven’s behaviour seems odd to outsiders, and is not understood by the residential home staff. But his dad, who knows him better than anyone, can make the connection. For example, there were three incidents where Steven threw jars on the floor in the kitchen; cranberry sauce, vinegar, and marmite. Staff were understandably unhappy with this. But for Mark, the penny dropped: Steven is a huge fan of Mr Bean. In one scene, Mr Bean pushes jars through a serving hatch, but because there is nothing on the other side, they smash on the floor. The jars Mr Bean smashes are sauce, vinegar, and marmite! Steven confirmed this behaviour while watching a DVD of that episode with Mark, saying “Marmite! At [his care home] Friday… Dropped Marmite on the floor.” Perhaps in another of Steven’s favourite programmes there is a scene where someone pulls glasses from a vicar?


Compared to staff at the care home, Mark is more able to understand Steven, share interests with him, and anticipate any potential issues. They go to the gym together, and when Steven’s had enough, he says “Enough” and they stop. However, official reports claim Steven is forceful in the residential setting when he wants to stop doing an activity. Surely Steven is better off with his dad and regular carers to support him?

Furthermore, Mark has concerns about how Steven is being looked after. He raises questions through the correct channels and has been careful to co-operate with the council, because he knows that this is critical to having Steven back home again one day. But his concerns are many: Steven’s coat was damaged while he was out of his room, presumably by another resident; and not only did Steven escape on that fateful day when he met a vicar, but just this week he was able to walk out of the unit on his own on a cold night, wearing only pyjamas (no shoes or socks), crossing at least one main road before a member of the public intervened. This is terrifying – he is supposed to be in care for his own protection and that of others. Yet incidents occur which would never happen if he was at home.

Steven appears to be an entertaining young man – you can see some videos of him on Facebook – he loves listening to Abba, watching DVDs, and regular gym and swimming activities with his dad. Mark wrote “I love the way Steven can turn a piece of dialogue into a song he knows. We were watching a DVD today that had a seance scene in it. When one of the characters said: ‘Is anybody there?’ – Steven gave us a quick burst of Living In A Box. Once I took Steven to a Christmas mass delivered by a very passionate priest. I can’t remember the context but at one point, the priest shouted: ‘Christmas – It’s A Sin!’ – well, you can guess where that one is going. I thought I’d have to put my hand over Steven’s mouth!”

The “Get Steven Home” campaign has over 5000 supporters on Facebook and 2250 signatures on their petition – and with good reason.

It seems to me that Mark understands Steven very well, and can care for him – better than the residential home he’s being kept in. All they both want is for him to go home – is that too much to ask?

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[Crossposted to Where’s the Benefit where I am one of the team. Don’t worry, there is a normal FlashSays article coming soon, but I couldn’t let today pass without recognition.]

Today is World Mental Health Day. It’s also a supposedly auspicious date; many couples are rushing to marry on 10/10/10. But for those with mental illness, there is very little to celebrate. I’ve spoken to two people to find out what today means to them – and to discover how benefit cuts will affect their lives.

Ishmael, a man in his 50s, has manic depression. He is a friendly and engaging man, yet his comments are almost tongue-in-cheek, tinged with the scepticism of a man who has been through the system. He says he is “receiving benefits relevant to someone who lives under the scraped out barrel and is burnt out”.

“It is only because I do stuff for World Mental Health day that I know it is happening. And the awareness events that I have been invited to are preaching to the converted.” He feels that understanding will only come from having a close friend or partner with a disability.

So are “awareness days” actually useful? Do they lead to long-term changes, or even increase knowledge of those conditions?

Kerry is a woman in her 20s with schizoaffective disorder. She speaks eloquently about the understanding that could come if the media report mental health issues appropriately.

“I’d like news journalists to liaise better with specialist health reporters when covering news with health implications. I’m doing an interview soon on my experience of schizoaffective disorder for the Sun newspaper, and whilst their health section is surprisingly reasonable, the main pages often don’t seem to have moved on from ‘Bonkers Bruno’.”

While World Mental Health Day may raise the profile of mental illness among the public, it’s clear that the government could do with a better understanding of the problems faced. Kerry described the difficulties in claiming benefits, in a system which requires illness to be measured in a tangible, predictable manner:

“It’s not possible to give a prognosis as to how long I’ll be in a ‘bad patch’ or not, so when the Government demands that I should be expected to be ill for another six months, that’s not meaningful. I’ll probably always have schizoaffective, but no-one can tell whether I’ll be able to work in 6 months or not.

“The nature of mental illness means it’s hard to deal with the stressful and mentally taxing process of applying for benefits when you are at your most ill. When I most need benefits, I can’t concentrate for long enough to fill in the forms, I don’t properly understand why I have to do them or sometimes just how ill I am, and often I am scared to tell the Government anything because I have delusional beliefs that they will use it to harm me. Housing benefit I find the worst – when you are already scared that people are watching you for malevolent purposes, filling in 19-page forms asking which bedroom you sleep in is not a good thing to be doing.”

Kerry also applied for Employment and Support Allowance, and found the medical assessment difficult, and inappropriate for her condition:

“I found it very stressful and humiliating to answer lots of very personal questions to a complete stranger, particularly as she said she needed to know things which the voices won’t even let me tell my psychiatrist. It was hard to concentrate, I was confused, and my voices were getting more and more angry that I was talking about them to this strange woman.

“Towards the end of the exam, she did some physical tests on me, like seeing how I could move my arms and legs. I thought this was bizarre, since I don’t have a physical impairment, and I don’t like people touching me. I was worried she would hurt me.”

When it is so difficult for someone with mental health conditions to be awarded benefits in the first place, there is a real risk that they will be left behind when the swathe of cuts come in. Ishmael is concerned: “The government thinks that by shutting down services and not paying for the needs of the mental healthers, we and our problems won’t exist. I had better pull my socks up! My early years were impoverished and how to survive has stayed with me, but I am concerned for those who would not be able to manage so well.”

Kerry: “A friend with severe chronic mental illness in Liverpool has been asked to pay £70 per week to use the day centre which is her only social contact. How’s she meant to find that from benefits, particularly if they are being cut?”

As their conditions can be invisible to outsiders, people with mental health issues are vulnerable when times are hard. The final word goes to Kerry, who says that we can fight this: “We don’t have to roll over and let things happen. Get involved with Coalition of Resistance and / or Right To Work in your area. Even if you aren’t able to help practically, tell them about cuts to benefits and services you use. Together, we can spread the message that these cuts will hurt people, screw up the economy, and we aren’t just going to let it happen.”