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.