Love. Belief & Punctured Balls

This is my last blog post on Love, Belief and Balls. I had my latest meeting with Hillingdon today about our housing situation and the cards on the table were, quite frankly, shite.

My number one goal in life ever since Steven came along has been to provide him with the best possible quality of life I can help him achieve. I’ve always known that when I’m no longer around, his future is going to be very bleak and that has increased the pressure and my desire to the best for him whilst he still has me around to love and care for him and to fight his corner for him. The latest battle to secure a home for him has been one fight too many and in my view, I have lost. And I cannot continue to write about our life, about social justice whilst I carry the guilt of having failed him so miserably. In spite of the High Court ruling and the evidence of the very good home life he leads at the moment, nothing can be done to stop Hillingdon’s vindictivness. In short, I can’t protect him any longer from the people who are meant to responsible for his care.

In July, when our tenancy expires, Hillingdon will have received the authority to make Steven the tenant, whether it be at our current flat or another private rented property. They have already started that ball rolling and time is too short, and a fight too costly to stop the ball.

All the other options are off the table:
– If we move back to the marital home, Steven will be taken into care.
– If I try to sell the marital home, the estimate from the legal people is that it would take at least two years to sell because of my wife’s incapacity. It will be very expensive to sell because of the large court costs that would be run up trying to evict an incapacitated person from her home. And in that time, we would be made homeless anyway.
– I can try and find a second job so I won’t be reliant on housing benefit to pay part of the rent but the council won’t increase my support package. I don’t have enough hours in the week when I’m not caring for Steven on my own to get another job.
– They won;t consider Steven for social housing because his damages award exceeds their £30,000 eligibility policy. If I spend some of it or put it in a trust fund, they will deem that I have disposed of his capital to secure him a tenancy and take it into account anyway. Even if I use the money in a manner that they approve of, Steven would still have to join a long waiting list and either be in care or bed and breakfast in the meantime. In short, Hillingdon believes that it’s housing allocation policy trumps it’s duty of care towards Steven (and also trumps the High Court best interests judgement).

So, that leaves us with Steven going into care or becoming a private tenant. The latter is preferable for his quality of life but it would mean that all his damages will be used up within two years in paying rent.

I’d love a judicial review of the whole sorry story. I’d love to go back before Justice Peter Jackson and see what he has to say about Hillingdon’s shameful actions. But I can’t afford that. And that’s why I can;t write about this stuff anymore. I can’t look myself or Steven in the eye because I feel so hopelessley ashamed. I remember one writer, after the court case, described it as a “David & Goliath story”. That’s bollocks really. In real life, Goliath usually wins.


It’s Only A Bloody DoL’s Conference

On Friday 1st March, I’ve been invited back to speak at the Yorkshire and Humber DoL’s Conference. In fact, I have an afternoon session entitled “A Q&A with Mark Neary”. I like that – it puts me in mind of An Audience with Dame Edna Everage”. I might end my Q&A by lobbing gladioli into the audience. It’s an honour to be invited and I’m really looking forward to it. Since becoming a Leeds United supporter, me and Leeds are old flames now. This time, I’m going to forsake the claustrophobic attention of Jefferson, the Maitre D at the Premier Inn; I’m going to pass up a revisit to the noxious smell in the bathroom at the Park Plaza. Instead I’m parking up at the Crowne Plaza. I’ll get there just after 5pm; perhaps half an hour in the spa pool; a hearty meal and then a couple of drinks in the bar whilst reading the latest Socrates novel. Just what Dr Feelgood ordered.

But my goodness, the preparation for it is a military operation. I did the weekly shopping today (instead of Friday). Tomorrow, I’ve got the meeting about my housing benefit in the morning and then work from 2pm to 8pm, so couldn’t do the shopping then. By the times I get home tomorrow night, the support worker will be clocking off, so won’t have time for anything then.

I’ve got an hour tomorrow morning to:

Sort out Steven’s medication for two days.
Write my talk.
Label up 20 music DVDs for the support worker to do the Thursday night DVD session
Sort out the meals for two days.
Sort changes of clothes for 2 days
Rewind 2 videos so they are cued up for the Christmas Top of The Pops music session on Friday morning.
Plait my pubic hair.

If ever I meet someone and they suggest a romantic weekend in Paris, I’ll need two week’s notice for the arrangements.

Ground Control To HMRC

Has anyone tried to contact the HMRC recently? Verbally? One human voice to another? It’s a dying art.

I’ve been self employed since 1999. I religiously complete my self assessment each year on time and I’ve never once been late with the two payments in June and December. I’m not sure where my fear of the taxman comes from but it’s akin to the terrible anxiety I used to feel whenever I spotted one of the security guards prowling the aisles in Woolworths. I immediately assumed a look of pure guilt and would find myself looking over my shoulder as I searched the shelves for the latest Rubettes’ album.

I suspected something was amiss when my bill for the second half year’s tax didn’t arrive in December. I phoned HMRC twice: one call took 35 minutes; the other 50 minutes. On neither occassion did I speak to a fellow human. Instead I was passed from one collection of press keypad options to another. So, I wrote to them, asking what has happened to my bill. Probably crossing in the post (I’ve never known HMRC act so speedily), I received a letter two days letter informing me that as I hadn’t submitted my self assessment back in April, I was now liable for a fine. Anticpating a long prison stretch, I immediately wrote back, enclosing my accounts for the previous financial year. And then – nothing.

On 5th January, I received another letter, thanking me fro my letter and notifying me that Mrs Huffer, had contacted the self assessment section and they would be forwarding me a new self assessment form in the post. Mrs Huffer reminded me that I had until just 31st January to return the form or incur a further penalty. Cue another phone call from me (42 minutes – no human) to ask why they don’t assess my tax on the information I’ve provided.

Needless to say, I didn’t hear another word from them until 31st January when the self assessment arrived in the post. It was dated the 17th January. How had it taken over 2 weeks to get to me? I filled it out immediately and had to pay one of Steven’s support worker’s half an hour overtime whilst I flew down to the post office to send it off.

On 4th February, I received a very threatening letter, scolding me for still not returning my self assessment form and reminding me that both my payment of tax and the fine was now overdue. I tossed off a nervy but angry reply. All I wanted was a fucking bill.

On Saturday, 23rd, I received a letter telling me that my tax for the last year had been calculated and quoting the two half yearly figures (very much less than last year!). But no bill. I know it was Saturday but HMRC are meant to be open to 4pm, so I tried to phone them again. 1 hour and 5 minutes later, a female machine said to me: “There’s a lot of people waiting to speak to an agent. Goodbye”.

I’d like to say “goodbye” too but would probably have my fine quadrupled and be made to eat three dozen hard boiled eggs without a drink. Apart from my pen pal, Mrs Huffer, who may or may not exist, I’ve spent over 6 hours trying to speak to someone at HMRC and haven’t had the joy of speaking to a fellow human yet.

I Don’t Want A Horse

On Friday, I received the cheque for Steven’s damages award. I defy anyone who receives an unexpected lump sum not to consider a treat. This is how the conversation went:

Me: “Steve – would you like a big surprise for your birthday?” (I knew this was too vague a question)

Steve: “A BIG surprise? A BIG one? I don’t want a horse”.

Me: “No, not a horse. Would you like a special treat? Do you want to go and see a show?”

Steve: “Seen Grease. Seen Blood Brothers. No, not a show”

Me: “Would you like to go on a holiday for your birthday?”

Steve: (laughing) A holiday in March. Dad’s doing silly talking.

Me: “No. We can have a birthday holiday and a summer holiday”

Steve: “That’s a bit greedy. Center Parcs in March?”

Me: “We can go to Center Parcs in March. Shall we go to Center Parcs in March?”

Steve: (Getting very excited) Yes. Phone Uncle Wayne and tell him we’re going to Center Parcs”.

So, Center Parcs it is then. This was one of the things on Steven’s person centred plan wish list in 2010 that was refused by the positive behaviour unit. He’s always wanted to go there since he was about seven and saw pictures of his two cousins there. But if we go, there might be a problem:

Worse Case Scenario:

I lose my housing benefit appeal and the Local Authority decide to pursue their suggestion to apply to the court to be appointed decision maker on where he should live. They decide to make Steven the tenant but wont offer him social housing as his capital exceeds their limit for social housing. They decide that I have deliberately disposed of some capital in order to obtain the best outcome for Steven and refuse housing. That may sound paranoid but this is Hillingdon we’re talking about.

Center Parcs is quite expensive at about £1200 for the week. And we’d have to take two support workers with us and they would have to be paid for 24 hour shifts as they are away from home (which is fair enough). And we’d have to hire a car to get us there and back. But as they say on Deal or No Deal – “this is a once in a lifetime experience”, so what the hell. If it causes problems at a later date, we’ll cross that bridge when we come to it. I cannot imagine any reasonable person disagreeing with the trip after what Steven has been through.

And as he says, he doesn’t want a horse. He did double check though that going on a holiday for his birthday wouldn’t compromise him getting a new Robson and Jerome CD. Got to get the priorities right.

In A State

The other day, a good friend of mine was describing his adventures on the S&M scene and talking about how he loves adopting a totally submissive role, completely under the control of his mistress. This was quite a surprise as, he would be the first to admit, he is such a control freak in every aspect of his life. He will actively avoid situations if it means he won’t be completely in control.

I’m very much like that myself (minus the whips and handcuffs) and yet nearly every aspect of my life is under some sort of control by the State. I can make the minor, everyday decisions (liver or chops for tea?) but the State involvement in the major areas of my life has been, and is still, immense. It made me realise again how much the consequences of being a carer, go against my natural psychological instinct – it’s no wonder that I find things unbearable at times. This isn’t a moan post; more an account of how life is when you’re caring for an adult full time. Let’s look at the main areas of my (or any human’s) life:

The State effectively ended my marriage (or at least put it on hold whilst I remain Steven’s carer). To be told that if I remain in my marriage, our son would be removed from our care is a terrible choice to have to make. Wife or son? It really was as stark as that.

Needless to say, there was the massive interference to my family life in 2010 when Steven was kept away from his home for the whole of 2010. Furthermore, the State’s plan was to move him further away from home on a permanent basis and the care plan was that we could have webcam contact. If they had got their way, that would have been the end of my family life.

I’m not particularly in the market for a relationship at the moment but even if I was, it would be impossible to build one. I get every other Monday evening off from my caring role. I also get 2 hours on Tuesday mornings (which is housework time) and 1 1/2 hours on Friday evening (which is paperwork time). I can’t see a potential partner being too chuffed about such limited, controlled contact. The same applies with my friends; if I want to meet up with them it has to be within the schedule determined by the State.

At present, I can work between 21 and 24 hours per week. I wouldn’t be able to hold down a 9 to 5 job because I don’t have the support package to enable it. I’d like to work more hours than I do and there have been quite a few occasions over the past four years where I have been offered work opportunities but had to pass them over as I couldn’t give them the time committment necessary. So, my opportunities to develop a meaningful career are in the hands of Panel; that vague bunch of people who decide on support packages.

Obviously, the restrictions on the time I can work has a big impact on my finances and most days my main meal is something on toast. The only state benefit I claim is housing benefit and that is so stressful, I’d love to work more, earn more and not be reliant on it. Now that I have been appointed Steven’s court deputy, the court want full records of how I spend his money, and likewise, because Hillingdon want to keep an eye out that I don’t spend his money in order to contrive him getting social housing for Steven, they want to see detailed accounts of his expenditure too. It’s the same with direct payments. I don’t know where the idea of choice and flexibility comes from; Steven’s direct payments are meticulously calculated and can only be used to cover the wages of the support workers. I’m not allowed to use the direct payments for anything else and have to produce masses of paperwork to prove that.

As I’ve documented many times, where we live and even if we have a home to live in at all is controlled by the Local Authority. The State will shortly hear my housing benefit appeal and if that goes against us, the LA have stated they won’t rehouse Steven because of his damages award. That will mean, the State will have to move Steven into residential care and I will be homeless. This is not the choice I would make if I had the choice.

Marriage, family, relationships, home, work, finances – basically the foundations stones to anyone’s life. One thing I am pleased about is that I was able to find the balls and stand up to the LA and stop doing all those endless logs they were so insistent on. To have every action of Steven’s life (and by default, mine) scrutinised and judged was one control too many.

Perhaps I should pop along to Miss Kinky’s Dildo Emporium and treat myself to some handcuffs and a whip. They might come in handy for my next carer’s assessment review.

Center Parcs Can Wait

I took a phone call from my landlady this afternoon. Since being notified by Hillingdon last September that they have stopped my housing benefit, her attititude has done a complete 360 degree turn. From sounding very supportive of having a son with autism, she is now saying that it is because of Steven that we are having problems in the flat (leaking radiators, broken waste outlet pipe in bath etc).

The upshot of the conversation after trying to get me to pay for the repairs to the flat downstairs which may have been caused by the leaking radiator, is that she is not going to renew our tenancy when it ends in July.

I’m trying to set up an urgent meeting with Hillingdon but they are sticking to their old position that Steven cannot get social housing as his damages exceed their level for that type of housing. And if I spend any of his damages, they will see that as me deliberatly getting rid of his capital in order to secure housing. Catch 22.

Ever since Steven saw photos of me at a holiday at center Parcs in 1992 (before we adopted him), he’s always wanted to go there. It seems likely that, after 10 months, we may get his damages in the next couple of weeks. My plan was to take him to Center Parcs for his birthday in March – we’d take a couple of support workers with us and get one of their nice villas for four.

I can’t do that now as they will say that I have disposed of his capital. However, if I dont, they will say he’s not entitled to a flat of his own.

I spoke to one of the journalists tonight, who covered our case in 2011 and he said: “is this Hillingdon’s way of getting Steven back into care?”

I couldn’t possibly comment but it does feel like payback time.

Straight From The Gut 3

I know. I know. I’m becoming a bit obsessive about the hoops a learning disabled person has to go through to demonstrate their decision making capacity but I heard two stories on Saturday that show how the majority of us make our decisions.

Firstly, someone was telling me about choosing a pre-school nursery for his daughter. They visited five in their area and read the Ofsted reports on all of them. One of his most telling statements was: “we sat down after visiting the five nurseries and tried to match what we had seen to their Ofsted reports. They didn’t match at all”. In the end, they made their decision by talking to other parents they knew locally and relying on their instinctive reactions to the places.

Later, I spoke to a man who had been looking at care homes for his mother who has dementia. He had visited three and like the other chap, had read the CQC inspection reports on all of them. Alarmingly, he told me about the one that had the most glowing report – he was shown one of the bedrooms and saw blood stains over the bare mattress. As he said; “It may have been fine but I don’t want to send my mother off to the Blair Witch Project”. The second one he visited, he declined on the basis that 18 people were sitting in a lounge, doing nothing and only two staff were attending to them. In the end, he made his choice because the staff smiled warmly at him and the residents looked to be doing something.

I wonder how these two decisions would have stood up under the scrutiny of a mental capacity assessment.