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A Bridge Too Far

Next week throws up for me another of the awful consequences of the input into our lives of Steven’s old social worker, Whistlers Mother.

Back in the summer of 2009 I was having some extensive dental work. I had several teeth removed in preparation for a bridge. It was taking ages, was painful and I became terribly self concious about the large gap in my mouth. And then Whistlers Mother delivered that shocking ultimatum that if we remained together in the family home, she would remove Steven from our care. No other options were on the table. End of our family.

I had to suddenly find two months deposit (£2.5k) for the shithole of a flat we ended up in and had to use the money I’d saved for the treatment to cover it. I was just about to start the treatment again in 2012 when Hillingdon stopped my housing benefit. Having to find the shortfall every month for a year so we didnt end up on the streets put paid to the bridge building for a second time.

On Monday, before the launch of #LBBill, we have a big meeting up in Whitehall. After the meeting, we are doing a broadcast outside the Department of Health. Cameras! Aaaagh! With the launch, there are likely to be a number of media engagements coming up and all trigger off a feeling of dread. I’m reasonably confident in what I’ve got to say but what I will look like, leaves me quaking. It may just be vanity but it matters to me.

In 2010, the first ever interview I gave whilst Steven was away was with Radio 4’s You & Yours. A radio programme, so nice and safe. After the interview, the producer led me to another room for an unplanned interview with BBC London News. TV! I must have looked like a second rate ventriloquist as I tried to do the whole interview without opening my mouth. As time has gone on, Ive got more used to it but I know the gap is there and everyone will see it.

Once the purchase of the flat goes through, I’ll have a bit of money left over and hope to start the dental work again. Five years after Whistlers Mother tore our life apart.

But look on the bright side. For an encore at the public engagements, I can give them a quick chorus of All I Want For Christmas Is My New Front Teeth.

My bite will be back……

Get Steven Home – The Movie Soundtrack

After days of massive discussion in the Cowley house between Steven, me & the support workers, we have finally come up with the 12 songs that form the soundtrack to Get Steven Home – The Movie;

Track One: Rainbow Valley by The Love Affair

Track Two: Crash by The Primitives

Track Three: Good As Gold by The Beautiful South

Track Four: The Story Of The Blues by The Mighty Wah

Track Five: Walking Down Maddison by Kirsty McColl

Track Six: When You’re Young by The Jam

Track Seven: Duke of Earl by Darts

Track Eight: When All Is Said & Done by Abba

Track Nine: Its Been So Long by George McCrae

Track Ten: The Flood by Take That

Track Eleven: Good Boys by Blondie

Track Twelve: Dreaming of You by The Coral

Modern Warehouses

I have a concern.

The first draft & Easy Read version of the #LBBill is just days from being launched. Thanks to the excellent Chris Hatton, I feel very confident that in a price war between the cost of support for someone living in the home of their choosing VS the cost of residential care/ATUs, we more than ring the victory bell. Considering the national weekly cost of a residential placement/ATU is £3300, a very good home care package will come in at much less than that figure.

However, I see a fly in the ointment and this post is a shout out to people, their families, their carers, or any professionals in the field who fancy spilling the beans. I see a potential fly in the shape of supported/independent living flats/houses that seem to be increasingly popular amongst LAs. The recent upsurge in popularity should immediately set off a warning alarm. They have to be the cheap option. Unfortunately, there are precious little figures in the public domain to see how much these types of living/support packages cost. We want to make sure that #LBBill covers all bases and don’t want to be trumped at the last minute by the Aldi’s of care packages – supported living.

My fear, from what I’ve been learning over the past few weeks is that supported living is becoming the new warehousing. Another great idea, kidnapped by the efficiency savings brigade.

For example, I have learned recently about a block of supported living flats where all the residents (about 25) are classified as “high needs”. Each person has their own one bedroom or studio flat. I fell into the trap set by the Spin and believed that as each person had their own front door, their own living accommodation, they would each get their own made to measure care package. Perhaps mistakenly, I compared them to Steven living in one of those flats and assumed that “high needs” probably meant 1:1 support 24 hours of the day. I still felt that the cost of a package like that would still be cheaper than a residential package but didn’t have any concrete figures to go on.

Then I found out, shockingly, that 1:1 support is not happening. At night times, the ratio is 2 staff to 9 residents. The support staff are not with the people in their flats but monitor from outside the flats. No face to face contact. No interaction. And it appears, although I hope I’m wrong, that a “night” begins at 7pm! So, from 7pm to 7am, the person is left on their own in their cell! flat. Under these arrangements, you can see the costs plummeting. Daytimes are not much better. No 1:1 support. If a person wants to go out, they tend to go in pairs or groups with other residents. And when the numbers for going out becomes unsafe, the rest of the residents tend to get herded into the communal room. The bottom line is that the 25 residents get nowhere near 1:1 support at any time of the day.

I was speaking to a mother last week whose middle aged DS daughter is in one of these types of supported living flats. She has been there just over 6 months. She hates it and is frightened most of the time. The mother and the woman’s sister take it in turns to spend the night with her in the flat because that is when she is most anxious. Not surprisingly, but depressingly, one thing that happened in the first month was for the woman’s medication to be increased significantly. (Incidentally, another shocking figure that Chris has turned up is the cost of out patient psychiatric appointments for people with learning disabilities in 2012/13 was £28.7million. Nice earner there and very nice for BigPharma who will reap the rewards of those consultations). Back to the mother though – she told me that she keeps asking her daughter’s social worker, what was the point of her going to live in this flat? She had a better support package at home and certainly got out more and her anxiety was much much less.

It looks to me that the latest turd in an LA’s crown is to turn the idea of supported living into a residential home in all but name. It’s a warehouse. It’s not about living.

Anyway – the shout out. We need to know the cost of living in a supported living flat like I’ve mentioned above. perhaps there are people who are getting a full, appropriate level of support. if there is – that’s great but it would helpful if you could let #LBBill group know the costs. More significantly, if you have a family member or know someone who is living in supported living under the type of regime I’ve mentioned above, it is important that we have an idea of the costs of that sort of package. I don’t know – perhaps a support package like that isn’t legal, it sure isn’t ethical but anything goes these days. I suspect these figures will be the trickiest to ascertain but are fundamental when costing the #LBBill.

Your help would be very much appreciated. If you know someone in supported living, please feel free to forward this blog post on to them and ask for their help in bringing the figures involved into the public domain. Many thanks.

Pam Ayres & The Dentist’s Wife

I rather enjoyed the first two days of the week.

On Monday, I continued my grand tour of the airport hotels and had a respite night at the Holiday Inn. Imagine my surprise as I sat in the bar with a Guiness and a scone, to find Pam Ayres and her agent sitting at the next table. It would be indelicate to reveal the engagement they were discussing, suffice to say it will probably involve the Queen & The Tiller Girls.

Yesterday, I spoke about my work. Ive been invited many times since 2010 to talk about the court case, DoLs and social care but it’s the first time in ages that Ive been asked to speak publically about my day job. It was a great group who were very open to the benefits of therapeutic imagery. It left me with the feeling that I’d like to do more of that.

Change of emotional gear this morning though. I had to write a statement for the first tier Housing Benefit tribunal about my relationship with my late wife. Hillingdon took the view that as we were living apart (albeit, at their insistence), we were no longer a couple. They took no account of what family life is like when one member of the family has serious mental health problems and another has autism. Having to write a statement to try and demonstrate that I still loved her and cared about her until she died, was really upsetting. Like so many of the official reports about Steven that show they have absolutely no idea who he is, neither the LA nor the first tier tribunal showed any understanding of our family life. They weren’t interested. I added as a postscript my feelings about her death and realised they are still very raw, five months on.

To end on a good note, I forgot to write last week, what may be one of my favourite Stevenisms ever. It’s a classic example of how he frames and makes sense of his world. Last week, my sister was in hospital and as I was leaving to visit her one day, the support worker said, “I hope she’s better soon”.

Steven, who had been earwigging, said: ” Who? Syb or the dentist’s wife?”

I wish my world view was like that.

Steven Neary & Sting

Two Christmas Play stories. I find them really distressing to write but they do end with a Steven, Monday joke.

Yesterday evening, Steven dug out an old video from his schooldays. This one was from 1997 (so, he would have been 7) and that Christmas, the school put on “Children’s TV Favourites” for its Christmas Show. Steven’s class did Bananas In Pyjamas and Steven was over the moon to get one of the main parts – B2. Steven was loving watching it back, giving a running commentary to his support worker on who all the main players were. I found it too upsetting to watch and slinked off to the kitchen and protected myself by cleaning the kitchen cupboards. What was so distressing for me was how the 17 years since have treated the class of 97. Over half of them are either dead, trapped in ATUs, stuck in so-called independent living flats, or in residential accommodation hundreds of miles from their families. All that innocent joy as a class of bananas sang their hearts out to “we’re coming down the stairs” has been stolen by the stinking, dis-interested world of adult social care. Those kids deserved SO much better from the world.

On to today. Steven’s history with Sting goes back to the 1999. That year the school put on “Millennium Here we Come” and Steven’s class did the moon landing.They entered the stage to “Walking On The Moon”, so Steven became interested in The Police. In the programme for the production, Steven is listed as “Neil Armstrong” but ask him and he said: “Steven Neary’s playing Sting”.

This morning Steven turned up at the Arts centre for his morning music session. Yesterday, we did a compilation tape for him to play back today. We have been working through the alphabet and have reached artists beginning with P (The Pet Shop Boys, Puff Daddy, Peters & Lee). The first track was “Every Breath You Take”

Steven: Dad – Sting’s playing a ……?

Me: It’s a double bass Steve.

Steven: A Bass! Like a pizza base.

He found this idea hysterically funny – “Sting. Don’t get pepperoni on your double bass. You’ll make your fingers all saucy”

Thank goodness he has got support workers who are as caring and interested as those staff in Bananas in Pyjamas. I know, that whilst I’m away later, if Steven starts to get anxious or worked up, one of them will say: “Steve – tell us your Monday joke about Sting” and everything will be all right.

One Man’s Safe Care is Another’s Maximum Expenditure Policy

I’ve been feeling so bloody low since Wednesday. First up was the news on Tuesday that my request for extra nights won’t get to Panel. I was advised that the LA now operate a policy whereby when deciding on funding a care package, they compare with cheaper options that they feel will still meet the assessed needs. I was given the example of a recently opened block of “independent supported living flats” where at nights, there are two support workers present per nine residents. This is obviously cheaper than 1:1 in someone’s own home. Then the following evening around 7pm, I came past the same flats and noticed all the lights were on. Nobody was in the communal room. One support worker was sitting on a chair in the passageway, reading a paper. All the residents must have been in their rooms.

What kind of life is that? Where is the engagement? Steven is very busy between 7pm and 9.30pm. He does lots of shared things during that time, either with me or with his support worker. We do lots of talking at that time of night. I think he would be totally freaked out if he was left alone in his flat from 7pm until whenever the support arrives the next morning. I think he would be very very scared.

Two years ago, Lucy Series wrote the following blog post about Worcestershire Council’s brazen plan to operate a “maximum expenditure policy” – http://thesmallplaces.blogspot.co.uk/2012/11/we-were-right-to-be-worried-about.html The bottom line is that anyone with care needs that cost more than a residential placement would only get their needs met up to the level of the placement, or be forced to go into a residential placement. This was their statement on the plan:

‘It was noted that application of the policy could result in services being delivered that would not be people’s first choice about the way they receive care. In such circumstances there will be a range of options discussed with service users, including arrangements liked shared living, assistive technology and other types of appropriate support to meet assessed eligible needs rather than expectations. This aims to balance available resources with the duty to meet assessed eligible need and to do so in a way that was transparent, equitable and enables the best use of resources. It is expected that this will lead to an agreed positive outcome in most cases. An appeals process will be available if required

Shocking deception and use of language to cover the true situation, isn’t it? But it looks like it’s catching on. I’m not sure how they can square an assessed need of 1:1 support at all times with 2:9 support in a supposed “independent environment”. And of course, if the person has to move into a residential placement because their needs WON’T be met at home, there is no way they will get 1:1 support there either.

A couple of years back, there was the infamous case of Kensington & Chelsea where, fed up with paying for night time support for a client, the LA “reassessed” her needs and decided that her night time needs could be met with incontinent pads (she wasn’t incontinent). (the full judgment is here – http://www.bailii.org/uk/cases/UKSC/2011/33.html). It was totally cynical to argue that her needs were still met but sadly, the court agreed with the Royal Borough.

These decisions are important because they shift the social care foundations. Forever on the lookout for a loophole, LAs seize on these decisions and push the boundaries even further. Humanity and decency are long forgotten ideals. Compliance with the Mental Capacity Act a forlorn hope. Nothing is pure enough in it’s intent that it can’t be manipulated into an abhorrence like a maximum expenditure policy.

And then today, Chris Hatton posted the following link on Twitter – http://vitalguard.ie/?_module=page&_view=default&id=about-us&menuid=27. A lovely, heroic company who’ve built a “seclusion room contactless monitoring” system. Every single word in that “system” chills my bones. But why should it, the people in the independent living flats the other night might just as well have been in a seclusion room. The residents had a “contactless” evening and night. Don’t dare hope for your loved ones in these places to be engaged – being monitored is the best we can aspire to.

All this horror has got inside my head. I keep fantasizing about what is going on behind the locked doors of those flats. Would the support worker ever put his newspaper down and go and talk to one of the residents? And I keep getting pictures of Steven in one of these places. Frightened. Lonely. But he wouldn’t be there for long. He wouldn’t;’t be able to cope with the anxiety of the situation. His behaviour would deteriorate and he’d end up in a locked ward or the criminal justice system.

And it wouldn’t matter to anyone because the maximum expenditure policy hasn’t been breached

The #LBBill is all about allowing people to live in their own home or a home of their choosing. Faced with the likes of Worcestershire CC, Royal Borough of Kensington & Chelsea and Vitalguard, we’ve got one heck of a job on our hands.

Erring Again

I was just listening to the Radio 5 Live discussion about Lord Freud’s remarks about disabled people. I suddenly realised that it was 2 years ago today that I was interviewed by Victoria Derbyshire on the same show about Hillingdon’s decision to stop my housing benefit, which led to over a year of terrible stress whilst Steven and I faced the prospect of becoming homeless.

Yesterday, 14 months after the Lower Tier tribunal rejected my appeal, I received notification that the Upper Tier judge had allowed my appeal:

“The decision of the first tier tribunal contained an error on a point of law. Accordingly, I allow the appeal and I set aside the tribunal’s decision”.

The case rested on Hillingdon’s assertion that half the value of the matrimonal home was available to me. I could collect my half share (despite the fact, my very sick wife was living there) and that share disallowed me from housing benefit.

The judge gave Hillingdon’s valuation and decusion short shrift:

“As a matter of common sense, it seems unlikely in the extreme that a purchaser would pay just under half the vacant possession of a property for a half interest that would not enable him to occupy the property without first obtaining some sort of court order against a person suffering from paranoid schizophrenia who was in occupation of a former matrimonial home, bought for the purpose of being a home, and who might be entitled to a property adjustment order. If the tribunal wished to find as a fact that the value of the claimant’s interest was £109k, it was incumbent on the tribunal to give adequate reasons for a finding which was so far from inherently probable”.

So, we won. I dont feel any sense of victory. I dont feel joyous. I feel a confusing mixture of exhaustion and anger.

Twice in four years, Hillingdon have made unlawful decisions that have had enormous impacts on me and my family. There will be no consequences for them for this latest ” erring”, just as there wasnt for their illegal detention of Steven for the whole of 2010. Their err is met with a shrug of the shoulders.

And it feels like we’re about to face another battle. In my last blog post, “Cheap Nights”, I wrote about how Steven may be prevented from living in his own home, after I’ve gone, because they could find a cheaper way of providing his care, regardless of his best interests.

I was feeling pretty down anyway after reading the judgment but on the way home from work last night, the bus pulled up by the supported living flats that the social worker talked about on Tuesday. It was just after 7pm. All the lights were on. Nobody was in the communal room. There was one guy, probably a support worker, sitting on a chair in the passageway, reading a paper. Where were all the residents? I guess they were all in their flats, on their own, trapped there for the rest of the night. Nobody to talk to. Nobody interested. I cried. That scenario would terrify Steven.

To err is human. But Hillingdon’s two errs, were completely devoid in seeing anyone human in their decisions.

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