Thursday 3 July 2014

Story One Hundred & Seven - Justice For LB

The 4th July is a very poignant day in our house. It was my wedding anniversary that takes on a real sadness this year. It was also the date in 1995 that Steven came to live with us.

But neither of these comes anywhere near today's terrible anniversary for the Ryan family.

This blog has been about stories from an assessment & treatment unit.

Steven was lucky -after a year,  he managed to get away from the one he was held in.

Connor wasn't lucky and he died a preventable death.

The #107days campaign has been a remarkable achievement and I know that the energy and humanity will continue. It has to continue. For all the dudes.


Wednesday 2 July 2014

Story One Hundred & Six - Life Now

Three years on from the court case, what is life like for the Nearys?

Steven is very settled in his new home and takes great pride in being a Cowley man. We have a fantastic team of support workers, who can't do enough to support Steven and me. Routine is the foundation stone of Steven's life, so each day has to be carefully mapped out. But once arranged, Steven can settle and then enjoy the things that are important to his quality of life. We hardly get any of the "challenging behaviour" that nearly led to Steven losing everything and being incarcerated in a hospital in Wales. In the last few months, Steven has come off his medication. His health was suffering with the enormous weight gain that goes hand in hand with the anti psychotic medication that so many autistic people find themselves on because of the laziness and indifference of the medical profession. His anxiety has increased a little but he has lost a phenomenal amount of weight. He still has meltdowns but most of the times, he is singing, or chatting nineteen to the dozen or laughing. He's doing okay.

I've suddenly found myself with a whole new career since the court case. I regularly get asked to speak at events all over the country - usually about the Get Steven Home story but since I started my blog, I'm often asked to talk about the social care issues that I write about. The feedback is always positive, so I guess that I've got something important to say and I've learned how to talk about the big issues without alienating the audience. The constant battles with Hillingdon have taken their toll on my health. I'd love to start bodybuilding again but know that is a pipe dream. Getting by on about 4/5 hours sleep each night is hard to sustain but I like to think I've always got the energy to try new things and push myself to tackle difficult situations.

For the future, I wish I could be confident. I know that when I'm no longer around, Hillingdon will take charge and Steven's life will change dramatically. He may still end up in that hospital in Wales. To paraphrase Baroness Jane Campbell, it's hard to live a life knowing that we are one bureaucratic decision, one egotistical professional, one abrupt change of policy from having out lives turned upside down. Life is pretty unpredictable at the best of times but when your life is so controlled by the State, each day feels like a precarious high wire walk. I can't see that changing - in fact, in the last four years, it has definitely got worse.

If I had one wish, it would be the complete ending of all assessment and treatment units. They don't do what they say on the tin - they are containers, places for people to be warehoused whilst the system around them grows obese and the owners count their enormous profits. It horrifies me that despite big words from the Government and the people within the system, more people are still moving into these places than moving out. Steven got trapped in one of these places. LB died in one. And each week, a terrified parent/carer will join the Get Steven Home group for help in getting their children out of an ATU or stop them going into one. 

It shames everyone.

Tuesday 1 July 2014

Story One Hundred & Five - Revenge

After the judgment was handed down, the Official Solicitor announced that she wanted to pursue damages for Steven. I've always been uncomfortable discussing money, so although I agreed in principle, I left it up to her to take the matter through court.

There was a year of fruitless negotiations with Hillingdon, whose starting position was that they should not have to pay anything. As the year wore on, they backtracked but couldn't agree a figure with the OS.

A year after the judgment, the court ordered Hillingdon to pay Steven £35k in damages. It still took until February 2013 for Steven to get the money because, firstly Hillingdon took an age to pay out and then I had to be appointed Stevens property and affairs deputy for me to manage his money.

In the meantime, in September 2012, Hillingdon called me to a meeting and announced they were stopping my housing benefit. Their solution to this catastrophe was for Steven to be made the tenant of our flat. But here's the rub - he wouldn't qualify for housing benefit either and would have to use his damages to pay the rent. So, by hook or by crook, they would get their money back.

They couldn't sustain this position, which I felt was intended to create as much stress as possible. Eventually, they agreed that as Steven would be homeless, they had a duty to house him but he would still have to pay full rent until his damages dropped below the threshold. In keeping with the way the State dismisses families, I am not recognized as Stevens father as he is over 18 - I am just classified as his live in carer.

Finally, in November 2013, Steven was allocated a lovely house in Cowley, close to his beloved Uncle Wayne. I brought all new stuff for Steven as it could be his home for a very long time. The council thought I should have used a local charity furniture warehouse but that was only so there would be more of his damages left for them to retrieve.

Since December 2011, there have been several acts of revenge - the canceling of the contract with the care agency with no notice, the refusal to offer respite, the long protracted saga of the personal budget. But the housing issue was the big one. I managed to shield Steven from most of it but it took a real toll on my health. Hillingdon played the system card again and forced Steven to have yet another mental capacity assessment - this time to see if he had the capacity to manage a tenancy.

I guess you shouldn't expect to get away Scott free after taking on the system. Its odd that from the word go back in 2009, Hillingdon personalized the fight, whereas for me, it was only ever about getting Steven back home. No matter how much bad publicity Hillingdon got, there was still a price we had to pay for fighting for Steven's rights.

Monday 30 June 2014

Story One Hundred & Four - The Impact on Steven

I can't imagine what it must be like to be kept away from your home, your family, your routines and all the things that help you feel safe for a whole year. And worse, to be held in a place where you feel unsafe and where nobody is interested in you as a person.

I am so proud of Steven's stoicism. To see him still trust people, leaves me in awe.

But there is definitely some trauma after the experience and I cannot forgive Hillingdon for not only causing it, but for repeatedly dismissing it since Steven came home. It is the main reason why I stopped attending meetings with Hillingdon's professional support team (positive behaviour support, the psychologist, the SALT, the OT) back in 2012. If they couldn't acknowledge the reality of Steven's trauma, then they couldn't be any use at all.

Steven is still terrified of being taken away again. He never understood why he was there, so even know, if he spills a drink, he cries and pleads: "not going back to M house?" Everyday, before he goes out, we have to reassure him that he's coming back home afterwards and not going to the Unit. If anyone mentions the name of the Unit, he yelps and starts to cry with anxiety. When we drive pass the place on the way to swimming, he turns away, closes his eyes and covers his ears. But that's not trauma!

He has never gone back to the respite unit either - it strikes the same level of terror. I don't blame him. It took a year after Steven came home for respite to be sorted because Hillingdon insisted the Unit was their only resource so had to be there. To illustrate the way their positive behaviour support works, they introduced "subliminal messaging" with him to get him to accept their plan for him to go back there for respite. It didn't work - Steven is far too fly for that.

I think those fears he has will be there for a long time to come. And they'll resurface when I'm no longer around to look out for him. But in the meantime, I believe Steven has the emotional fortitude to have a quality of life that is beyond the imagination of anyone involved in his care in 2010

Sunday 29 June 2014

Story One Hundred & Three - Goodbye Whistler's Mother

The social worker (aka Whistler's Mother) finally left our lives in July 2011. We first met her in November 2007 when she was appointed Steven's transition manager. Its fair to say that it was four and a half years of carnage.

I remember the first meeting well. After meeting Steven just once, she was pushing for him to go to the positive behaviour unit. She talked about one of Steven's classmates who had recently been in the Unit and described it as "one of my big successes". Not " our" success, or "the units" success, but "my" success. I said to Julie after she left that we are dealing with a massive ego here. And I think its fair to say that her narcissism was the driver for many things that happened over the next four years.

In 2008 after Steven had been assaulted at the Unit by one of the staff, she tried to cover it up by leading us to believe it was one of the residents. From the time of the assault until the trial, she distanced herself and was no support whatsoever.

In May 2009 she visited me and told me that she would be taking Steven into care if Julie and I stayed together. It is true that Julie's mental health problems were causing lots of problems with Steven's care, but is it okay for a social worker to deliver that sort of ultimatum. I had to make the most dreadful choice and that is how Steven and I came to move to the flat in Uxbridge. I think the consequences of the social worker's ultimatum continued right up to Julie's death last month - she never got over losing her family.

And then of course, five months after Steven and I moved to Uxbridge, the social worker was the driving force behind the whole year that Steven was kept away from his home. Once again, I believe her ego played a big part in how the year unfurled. I could see that she couldn't stand me because I challenged her authority, which was very important to her. I didn't, and couldn't acknowledge her brilliance. The longer the year went on, the more entrenched and angry she became.

She managed to avoid both the initial December court hearing and the week long inquiry. I could see that Hillingdon didn't dare let her loose in the witness box but I also found it terribly weak that she couldn't face the consequences of her actions.

We now have a new social worker who couldn't be more different. She is down to earth and she is interested in Steven. She is prepared to fight his corner and I think she respects me. I said to her the other week that if we'd had her from the start, the events of 2010 would never have happened.

I bump into Whistler's Mother occasionally. We don't talk. I was in a pub with the H Man last year and we saw her sitting in an alcove with some colleagues. Next to her was a shelf with a large candelabra on. As we were leaving, the H Man said: "It was Colonel Neary, in the Slug & Lettuce, with the candlestick".

But I still find myself asking - " how can one person tear a family apart, leave a vulnerable young man traumatised, act unlawfully (as the court judged) and not have any consequences?"

Saturday 28 June 2014

Story One Hundred & Two - Somerset

Two weeks after Justice Peter Jackson handed down his judgement, we finally got to Somerset, albeit a year late. I like the symmetry of that because, as you may remember, two weeks before we were due to go to Somerset in 2010, I had that horrible visit from the Unit manager who told me that he was cancelling the holiday.

On the second night there, Francis and Chris took Steven to see a Wurzels tribute band (yes really) and I sat outside the caravan on a sun lounger and wrote the final chapter of the book. Here it is:

Four Go For A Final Chapter In Somerset

It’s 12th July 2011 and I’m writing this final chapter, sitting outside a caravan in Brean Sands whilst Steven has gone to the evening show with his support workers. Yes – we made it to Somerset. It might be a year late but it feels great to have eventually arrived. There is something poetic that Steven’s two support workers, F & C, who gave evidence in court have come with us and it’s all very relaxed, and dare I say it, dead normal. We packed a lot into the first day: we went to the pool and down the water slide three times; we explored the theme park and last night we drove into Burnham. That was a poignant journey, as it was the venue for our first holiday with Steven in 1997. It was an odd feeling, because although this book has been about an 18 month period that felt like 14 years; the 14 years since our first holiday have flown by as quickly as 18 months. Steven and I marked the occasion by recreating the Beautiful South video to “Perfect 10” on the pier and I found the cafe where we used to have lunch every day in 1997. Sadly, it was closed because of an “electrical fault” but that was okay because Steven doesn’t do sentimental nostalgia.

The site we’re staying at in Brean is the same place we came to in 2007 and everything looks the same four years on. I was recalling to the support workers that there were many times in 2007 that I took Steven to the pool or to the show on my own, without incident. One of the workers remarked how much Steven has changed in that four years. He was of course, referring to Steven’s behaviour. It wasn’t an unfair comment, considering there were three of us supporting Steven on the holiday, all following the “risk management” bible. When he said it though, both me and the other support worker immediately said: “No – he hasn’t changed at all”.

That thought kept me awake last night. The only thing that has changed is that Steven turned 18 and moved under the watchful, fearful eye of the Hillingdon adult social care team. And because of the unfortunate incident at the airport in 2008, he will remain stigmatised for the rest of his life. It’s chilling that, in asking for some help four years ago, we have changed our perception of our reality and doubt things that don’t need doubting.

And in the middle of my reality is Steven. He has matured greatly in the last four years. But he is still the same funny, anxious, inquisitive, chatty, frightened, adventurous, playful, intelligent, street-wise autistic young man who sat next to me on the log flume in 2007 (Holiday song: “Umbrella” by Rhianna). He has the most formidable spirit and strength that kept him going last year when it must have felt like everyone, including me, had given up on him. Observing him on holiday, thoroughly enjoying himself, trusting us and going about his holiday business with absolutely no challenging behaviour whatsoever, makes me proud and hopeful for his future.

Our idea of our reality has been stretched to near breaking point at times since 2007, but thank goodness for love and the deep bond that comes with a special knowledge of each other. That can never be taken away and that’s why we are going to be okay.

Friday 27 June 2014

Story One Hundred & One - The Media

On walking out of the refined world of the courtroom, I was met with television cameras rolling and cameras clicking.

I was led on to the steps of the court and all the journalists and ITV started firing questions at me. I rambled on and suddenly noticed someone walking into camera shot. It turned out to be Linda Saunders, Hillingdon's head of adult social care. She shook my hand and launched into a statement, that quite frankly, I didn't catch a word of. Later I discovered it was the official apology. And then she was gone. One of the journalists whispered to me: "she tried to do you up like a kipper there". But I wasn't bothered. Next ITN whisked me off to a side street for an interview and I was pleased that when it was aired, Liz Wickham picked up on that key statement about Steven facing a life in care that he does not want or does not need.

When I arrived back at court, my old mate Kurt Bahling was waiting for me and we went to the Embankment for an interview. The bastard made me cry on camera as he asked me my thoughts about the judge's testimony of me. Kurt is a good man and when we parted he promised to stay in touch (which he has). Then it was into the BBC studios inside the court to talk to Victoria Derbyshire, who like Kurt, had followed our story from the start.

That evening whilst I was cooking Steven's tea, I was doorstepped by the Daily Mail. She wouldn't leave and it set Steven off as I burned his chicken goujons. I panicked over how she might report the meltdown she'd just witnessed.

The next day I got up early to do the weekly shop and picked up all the papers. The Independent really went to town. We were on the front page with the headline " The Right To Love" and there was a double page spread inside which included the interview I gave to Jerome Taylor. All the other broadsheets covered the story in depth and the Mail ran a story called: "The State Stole My Son". Much to Steven's disgust I turned down an interview on Daybreak (it would have been too early and I'd run out of support hours. I didn't think Hillingdon would have appreciated me requesting more support, so I could go and talk about them on national TV). Steven was impressed that I did the Gaby Roslin show, although he expected Chris Evans to still be working alongside her.

The Winterbourne View scandal broke about this time and I was invited onto You and Yours to discuss our case. One of the mothers from Winterbourne phoned in and we had a very moving chat for a few minutes.

For the next two weeks, I was being invited to tell the story here, there and everywhere. I was cautious though because I know how much the stability of Steven's home life had impressed Justice Jackson. Even though, I was seeing how important and far reaching our story was, I didn't want to jeopardise Steven's routines, so I turned down more than I accepted.

I had also been writing the book for the past three months and the final chapters, like the hearing, were being written in real time. But I knew I had one more chapter to write before the book could be published................

This is the photo that appeared on the front page of The Independent under the title - "The Right To Love"