State Of (Non) Independence

Yesterday, the judgment in Davey vs Oxfordshire CC was handed down. Lucy Series has written a superb but alarming analysis of the case: –

I can’t possibly improve on Lucy’s analysis but I wanted to look at what this judgment holds for the future of a disabled person’s independence. In this case, Mr Davey was receiving a personal budget of £1651. Following a reassessment of his needs, the council reduced the budget to £950. Mr Davey had employed the same support team for 18 years and was satisfied that this support enabled him to live an independent life. The judgment rested on Oxfordshire CC’s decision to reframe Mr Davey’s care plan as having “an eligible need to enhance his independence by spending more time alone”. The LA’s brazen argument that independence meant spending time without support. Judging by a reduction to the personal budget by £701, they clearly believe Mr Davey needs a huge amount of time alone if he is to meet their concept of independence.

As depressing as this latest judgment is, this isn’t new. Back in 2011, London Borough of Kensington and Chelsea removed Ms McDonald’s nighttime support on the basis that wearing incontinence pads instead would increase her independence. In my own area, the council’s independent living accommodation is structured so the residents are in their nightwear by 6pm and are shut in their flats until 7am the next morning. The residents’ personal budgets are pooled so that they can “independently” go window shopping in groups with fewer support staff.

The Davey judgment terrifies me as I speculate on what will happen if an assessor decides Steven has a similar eligible need. What would happen if he is left on his own in his flat for hours at a time? Steven wants, likes and flourishes from time spent on his own but either me or a support worker is in one of the other rooms for safety reasons. Our presence doesn’t compromise Steven’s independence. I fear what would happen if next door’s dog started barking for an hour, as she tends to do. A dog’s incessant barking causes a sensory overload for Steven and in his distress, he is likely to put himself at risk. After time alone, a support worker could return and find something fatal had happened. This is just one example of how Steven needs people around if he is to be truly independent.

The real problem is that like many other good ideas, the social care power players abuse those ideas. The word “independence” has become corrupted. Nobody reading the Davey judgment can be in any doubt that Oxfordshire couldn’t give a toss about Mr Davey’s independence. They have manipulated a man’s dreams and ambitions in a shameful cost cutting exercise.

We need a new word. Independence is dead. Would “autonomy” fit the bill? I’m not sure it does but it might work until such time when it becomes corrupted like all the words that came before it. A positive idea lasts only as long until the finance committee gets their hands on it.

Lucy sums up perfectly what the lasting message of this judgment might be. “Care here is not constructed as a relationship between individuals but a fungibleDavey commodity that can be replaced with no real impact on the service user”.

My guess is that Mr Davey will be impacted hugely by this decision.


Back To The Flood

Watching Robbie appear with Take That again last night and singing The Flood took both Steven and me back to that night in 2010 when Steven escaped from the ATU whilst Take That were reuniting on the X Factor and singing The Flood live for the first time.

“Do you remember Steve?”

“Steven Neary ran away from M House with his pyjamas on”.

“Steve was a very brave young man. You didn’t put your shoes and socks on”.

“Steven Neary had massive sore feet. Steven Neary was very brave”.

And then a few seconds later, thankfully, he can turn that horrible event into a joke:

“Steven Neary’s not going to run away from the Cowley house when Take That sing don’t go holding back the flood. Cowley house is the best house”.

Which is a very nice perspective.

And in case you’re wondering, Jason Orange wasn’t singing with Take That last night because according to Steven, “Jason Orange is still looking at the sharks in Australia”.


People, Places & Dates

This week has been jam packed of unexpected, emotional coincidences.

I wrote last weekend that I have finally found my Uncle Frank. I’ve since discovered that the institution he was in for the last two years of his life has been converted into luxury flats. All the surrounding buildings and area, including the graveyard, were knocked down and built over in the mid 1990s.

This coming Friday is the training event in Derby where I will meet up with Justice Peter Jackson for our first encounter since that day in the High Court in 2011. As the day approaches, my nerves and emotional state increase. The other day I was checking out the Google directions from my hotel to the training venue and noticed a road name that sounded very familiar. It turned out that the conference venue is about 10 minutes from where Uncle Frank was buried. I’m travelling up to Derby the day before and have decided to laminate Uncle Frank’s part of the family tree, buy some flowers and go and find a suitable spot in the grounds to leave my marks of respect. It’s going to be quite a two days!

On Wednesday, I took a call from someone who wanted to invite me to tell the Get Steven Home story at another conference in the North towards the end of March. I accepted and she said she would email me the details. Two things – the conference is being held in the town of Steven’s birth and the date is the exact day, 22 years ago when we found out that we had been shortlisted to become Steven’s parents. We had to endure a further three months of assessments before we were finally chosen.

And then blow me down, last night at my flat, I watched Brian Blessed’s episode of Who Do You Think You Are. He had managed to trace his great grandfather but at some time in the mid 1800s, the family up sticks from Portsmouth and moved North to a small market town. It was the town where Steven was in foster care. At one point in the programme, Blessed met up with a local historian and it was at the same hotel that Julie and I stayed in during our week of introductions to Steven. They sat at the very same table we sat at in the lounge because I remember Steven spilling a drink all over the brown leather sofa. I’d never heard of the town before that introductions week and I have never seen it on TV since.

I suspect that when I travel up for the conference in March, I may have to make two stop offs along the way.

I tend to live by the rule, “never go back” and neither of these two visits feels like a retrograde step.

More like, it feels like these significant moments from  my past have reignited for me to offer a grateful and fond thank you.

The OPG Strikes Again

Hoisted by my own petard!

Having written yesterday that in Steven’s and my brand new world, I will probably have less to write about, this morning I received a letter from the Office of the Public Guardian. This is in relation to the Deputy report that I submitted at the beginning of January. There have been several letters going backwards and forwards over the past few weeks but today they’ve turned their attention to a new subject.

Steven’s income goes into an account in his name and each month I transfer a sum into my account to cover his direct debits and the shared bills. Today’s letter asked me to provide more information about this expenditure. The information is contained elsewhere in my report as I do a monthly spreadsheet but it doesn’t fit smoothly into the boxes on the official form.

I phoned the OPG to ask what further information was needed and the woman read out the paragraph the assessor had written and it ended, “This expenditure seems unusually high for someone in his circumstances”.

I am immediately shocked and fearful by a statement like that. A judgment has been made and I am forced into a position where I have to justify our reality. I questioned the presumption that £X per month is too high. Steven pays £X per month for his health club membership; £X per month for use of the Arts Centre & £X per month for the Mencap pool. The rest (approx £X) is for household bills, like food shopping, fuel bills, service charge on his flat, TV licence. Is that too much?

Once again we got into that ridiculous conversation about how the weekly shop is apportioned. Some of it is solely Steven’s but some of it is shared. We both drink the milk, we both eat the bread, we both wipe our arses on the toilet roll. I split the cost of those things about 50/50 even though I’m spending far less time at Steven’s house. In the end, I had to agree to submitting two recent Tesco itemized bills, with notes over who uses what!

And even though, the OPG has had the contracts for the health club and the other places before, they want them all over again.

This strikes me as the same old, same old. It’s not about safeguarding Steven’s financial interests: it’s about justifying their role. It’s what the state does with aplomb – to justify their role, they make you go through hoops justifying your role. For each of the five years since I became Steven’s deputy, I’ve submitted the annual report on time in the first week in January or early. Each year it has been June before the report is signed off. With pointless laborious correspondence between January and June.

Rhetorical question – what would happen if I resigned my deputy role?

Book Ends

Two pieces of news: one good; one sad.

The good news is that my latest book has been published and is now available to buy in paperback and e-book versions.

The book is a diary of Steven’s and my life during 2016 and getting it published feels like the end of a long chapter. Since Steven’s move to his new house last October, our lives have changed considerably and I get the feeling I won’t be writing so much about our experiences in the future. Driven by Steven, we’re going through a very positive separation where we are both building new lives for ourselves. The book could well turn out to be the concluding part of an adventure that started 22 years ago.

The sad news is that thanks to the help of Miguel, one of the followers of this blog, I have found Uncle Frank. As I suspected he ended up in an institution, in his case, the Derby Lunatic Asylum. He was admitted in 1955, which ties in with the time he disappeared from the electoral register in Southall and he died in early 1957.

A strange quirk of fate ties the two stories together. Next Thursday I will be travelling up to Derby to speak at a Best Interests Assessors training event on Friday. This is the gig where the other speaker is Justice Peter Jackson. Even though I’ve done this talk over 100 times now, I’m getting increasingly nervous and emotional as the big day approaches. I’m hoping I get my copies of the new book delivered before I travel because I would love to give a copy to the man who saved Steven’s life. Also, as I’m in Derby, it would be nice to find Uncle Frank’s grave, although i suspect that is going to be difficult to discover. If I do find it, it would be nice to leave a copy of the book there too – just to let Uncle Frank know that the life of someone with a learning disability is very different 60 years after his death.

But perhaps it’s not. If Justice Peter Jackson hadn’t intervened, Steven would now be in that hospital in Wales and in terms of physical and emotional distance from family, there isn’t much difference between Derby and Wales.

1957 to 2017. What’s in 60 years?

Too Much Detail

How does one accurately, honestly and engagingly describe what life is like within the adult social care system? That is the conundrum I’ve been wrestling with the past couple of days. How can one narrate the daily grind of the system without the reader switching off in boredom?

I got some feedback from the publishing company who approached me, expressing their interest in my new book. They have decided not to offer me a deal and one of the reasons is “the level of detail currently written”. It’s a fair point. Obviously, when you write a book you want people to read it and you don’t want the reader to discard the book 20 pages in because the content is such a slog. The trick is (and I haven’t discovered the way of executing the trick yet) to present the slog of your life in a way that doesn’t become a slog to read.

Having been turned down by the publishing house, it is back to Plan A of self publishing and yesterday I was setting up the basic details (book size, format, description etc) on the publishing site. The book has been through five drafts so far and I have been surprisingly ruthless with each draft. For draft two, I culled nearly 50 pages from the original manuscript. Each subsequent draft has seen similar shrinkage but when I created the A5 book size PDF yesterday, it still came out as 394 pages! It’s certainly not 394 pages of relentless whining but I have tried to portray the grind in a way that shows how it affects the act of living. Here is a typical, three sentence entry from May 2016:

“Steven is in the living room having a meltdown because he wants me to participate in his commentary of Grease. I’m in the bedroom trying to get on with the monthly personal budget audit which is due on Monday. The poor support worker is on sentry duty in the hall, trying to keep the peace but it’s pointless, because with the noise and my tears, I’m not going to get this job done”.

It’s honest but how many times would a reader want to read a paragraph like that. As Paul Heaton sang, “This is my life and this is how it reads” but what if the repetition of your life stops people reading?

Most of the discourse about social care these days puts the problems squarely at the door of the person requiring services. “Bed blockers” is now a common term to shift attention away from chronic under funding. How often does discussion of assessment and treatment units get shut down by dropping in the phrase, “complex needs”? Justification achieved and conversation ended in just two words. One thing that I hope comes across in everything I write is that Steven isn’t the problem. He isn’t the cause of my grind. Perhaps, rather pompously, I wanted to present an extended piece that makes this point loud and clear. With all the funny bits of our life in as well.

Bollocks! I know who will read the book. I’m not going to convert anybody. I’m sure most people will skip three pages of intense analysis of personalisation to get to a piece about Steven musing over Simon Le fucking Bon. That’s my audience. I can hear them in the Newport Pagnellshire book club: “Yes, a very interesting argument about the problems of the social care Panel but wasn’t that story about Steven’s crush on Sybil Fawlty a hoot”.

Writing my blog as my own personal therapy tool. I think I’m just going to press that key marked “publish”.

To Be Frank

Last year I met the artist, Mary O’Toole. We had conversed before on social media but this was the first time we’d met face to face. Mary had just heard me tell the Get Steven Home story and she mentioned that she wanted to do some cartoons of the story. I was honoured. But it was her comment as we parted that I’ve not been able to get out of my head – “Stories of our family’s history of learning disability are really important”.

It brought back to the surface a cryptic comment made by a cousin, himself disabled, at a family funeral, 20 years ago. He was running through a list of my father’s siblings, all dead, and he mentioned a name I’d never heard before. I knew of the brothers and sisters who were before my time. Uncle Reg, the war hero, who survived the war but died at the age of 40 in 1952. I had seen my Dad’s collection of Reg’s war medals. I knew about Auntie Eileen who emigrated to Canada in 1949. One Christmas she sent me a box of 200 crayons, all different shades. I knew about Uncle Stanley, my Dad’s best man at his wedding who emigrated to Australia in 1956. I’d seen his picture in the wedding album and I liked his face. It was a warm and strong face. My Dad’s other sisters; Aunties Phyllis, Binnie and Eve were there throughout my childhood and we’re part of a rich tapestry. Auntie Phyl’s husband owned a toy shop in Southall and I would always get a discount with my pocket money. Auntie Eve’s husband, Uncle Tom, built an incredible model village in his back garden and I went to play there most Sundays.

But I knew nothing about the eighth name, Uncle Frank. There was something in my cousin’s comment that suggested either learning disability or mental illness. My cousin, who is deaf and 90% dumb doesn’t see himself as disabled but I got the impression that he saw Uncle Frank as “not quite right”.

When I set out researching my family roots three months ago, discovering more about Uncle Frank was one of my main goals. With Mary’s words as a soundtrack, I wanted to honour this man by at least including him in the roll call with his seven siblings. And trying to understand why nobody in the family ever talked about him. In the last three months, I’ve unearthed some wonderful family stuff going back six generations but precious little about Uncle Frank.

He definitely existed. He was born in 1917, the fifth child to my nan and grandad. My Dad, the youngest and probably an afterthought didnt come along until 1927, ten years later. Frank appears on the electoral register when he turned 21 and stays there, living with my grandparents until 1956. At the age of 39 he disappears and the trail has gone cold.

It has certainly left me with lots of questions. I keep looking at the group photo in my parent’s wedding album. By process of elimination, I’m guessing Uncle Frank is the chap kneeling in the front row, slightly apart from the row of younger boys to his right. Is that telling that he is with the kids? After all, he would have been 36 at the time. I stare at his face, looking for signs of a learning disability. He has a look of George Formby about him. Then I notice the solid Uncle Stanley kneeling next to him with his hand, gently on Frank’s shoulder. And then I remember all the photos of me and Steven in company and my hand on his shoulder, silently restraining but reassuring him. Then again, I could be making this all up.

Why was he not spoken of? A few weeks back, I heard a lovely story about my parents. Probably around the time Uncle Frank disappeared, there was another big family event. My two deaf and dumb cousin’s were due to start school. Their parents and wider family had accepted the professional view that they had to be sent to a boarding school in Margate for the whole of their childhood. My mum and dad, in an attempt to convince the family there was an alternative, enrolled for evening classes in sign language. It didn’t stop my cousin’s being sent to Margate but it meant my parents were able to communicate with my cousin’s in a way the rest of the family couldn’t. My Dad even found Phillip his first job when he returned home from Margate 10 years later. So, it begs the question for me, why, if my parents had such empathy for my cousin’s, why did they never talk about Uncle Frank?

By 1956, all Uncle Frank’s siblings had left home and he was still there with my grandparents. My grandfather was 77 and three years away from death. Could they no longer cope with a disabled son and was he sent away to an institution? If he was, I find it so sad that he may have been lost forever. He must be dead by now; it’s 100 years since he was born. He may have died back in 1956 but why can’t I find any record of his death? If he was institutionalised, where was it? Did my family visit him? Would his death in an institution have been noticed?

After all this, he may not even have had a learning disability. But I’m sure he did. I want to be able to finish this story. For me. For Steven. For Uncle Frank.