The Floor’s Gone

Yesterday Steven and I did our Sunday compilation tape. At the moment, we’re working through the alphabet and are now up to artists beginning with “S”. One of the tracks was The Style Council’s “Walls Come Tumbling Down”. For years this song has intrigued and slightly frightened Steven – what could possibly make your walls suddenly start tumbling down? His enquiry was both architectural and philosophical. To add to his angst, he knows the video to Jamaroquai’s “Virtual Insanity” where the floor is moving, which when combined with tumbling walls, gave Steven a terrible sense of existential unsafety. It took a visit to a demolition site a few years back for him to understand that sometimes, a whole house can be knocked down. But hopefully, not whilst people are in it. “Dad – the floor’s gone too”.

The floor’s gone in social care too. I was pondering the lack of a floor last night whilst reading another article about the lack of money in the system. Of course, you can’t argue against money being tight but it is always found to cover the costs of ATUs. LAs willingly pay agency fees whilst paying direct payments would be a lot cheaper. Money is scarce but the infrastructure is all but gone.

For years, our council have had a contract with a local disability charity to provide support for all things direct payments. I think the charity have been marvellous. Back in 2004, they helped us find our first direct payment worker. In 2013, they came to see me and spent hours holding my hand as I became a Personal Budget employer. And every April since, they have helped me by checking the tax and national insurance figures I’ve calculated are correct.

A few month’s back, the council decided that its service users needed more “choice” in who provides the direct payment support. They’ve now cancelled the contract with the charity and from now on, we’ll have a sum included in our Personal Budget to go off and find our own support. The charity can’t afford to exist without this regular income, so they are excluded as a potential provider and all PB recipients have got to find a new provider. I guess the council are relying on most people are feeling the same way as me – that the search for a new provider is too much of a pain in the arse and we’ll try and manage without. A floor is removed to save a few coppers.

Last week I got the increase in the Personal Budget that we’ve been waiting for since March. For the last five months, I’ve been having to pay the shortfall myself – about £105 per week. Thankfully when the payment came through, it included a chunk of arrears, so I’ve managed to claw back some of the money I’ve paid out. They make running a personal budget so relentlessly hard, whilst if it had suitable walls and floors in place, a personal budget should be a boon to everyone concerned.

I wonder what it must be like to be an old school social worker and to work in an environment that no longer has walls or floors. Credit where it’s due, we’ve had two examples of social workers operating with humanity from within that void. When my wife died in 2014, the social worker phoned me to see if I needed any extra support whilst I arranged the funeral. And within three days, a sum to pay the support workers extra hours was in the account. The same thing happened last year with Steven’s house move. The social worker knew that I’d be tied up with all the arrangements and paid four weeks additional support hours. The great thing about those two moments were that they were offered. I wouldn’t have dreamed of asking but the social workers saw a need and went beyond themselves to help out.

Perhaps it needs more people to follow Paul Weller’s lead and not take this crap and actually try changing things…..


A Letter To Sam

Once in a blue moon, something crosses your path that is so wonderful, you don’t know how you can possibly cope emotionally with its profoundness. Today was one of those days.

Having a cheeky lay in this morning, I came across the latest judgment of Justice Peter Jackson. Thankfully I didn’t have any work until noon as throughout the morning deep sobs emerged from somewhere inside me, as if my soul was doing cartwheels. I didn’t think my body could cope with being touched by such humanity, wisdom and deepest respect for and understanding of the human condition.

Jackson J had written his latest judgment in the form of a letter to Sam, the teenage boy at the heart of the case. Miraculously in doing so, Jackson J doesn’t dilute the legal argument and gives the finest example of an acute mind engaged in a profound decision making process.

Here is the judgment. It’s not long. Please read it to the very end:

Jackson J doesn’t pull any punches. He is never sentimental. He is critical with sabre like directness.

But in the same way he achieved with Steven Neary, and Mr B (in the Wye Valley case) and the children in the Lancashire CC vs M case, and JS in the “cryonics” case, he exhibits a deeply respectful duty towards Sam.

A man, and his incredible humanity towards a boy.



The Mr B case –

The JS case –

The Neary case –

The M case –

The Psychiatrist Says “No”

I’ve been getting my brain in a right old tangle the last few days. I keep trying to compare the importance of best interests decisions in lawfully applying the Mental Capacity Act with what seems to be the complete absence of best interest factors when someone is detained under the Mental Health Act.

My web is further tangled by the disparity in the number of decision makers. Under the MCA, a best interests decision can only be made after consultation with all relevant parties. I know that isn’t always what happens in reality but at least that’s the goal of the Act. Under the MHA, if best interests are considered at all, the decision seems to come down to one person – the responsible psychiatrist. The person detained or their family are seldom included in the decision making process, so actually have little idea how the decision has been reached.

It’s only Tuesday but in the past four days I have heard the stories of three people with autism and/or learning disabilities who are each detained under a Mental Health section. Each one of them have asked for extended leave and can make a decent best interests argument for being allowed leave but each one has been refused by the responsible psychiatrists who have cited “risk” as the reason for their refusal.

The three requests were made to:

1. Spend a long weekend away with family in a cottage in Wales.

2. Attend a family wedding.

3. Spend his 30th birthday on a boat with his family and friends.

It’s pretty easy to put a case together as to why any of the above would be in the person’s best interests. All of them involve quality time with people who love them and have known them for years. All three activities are significant life events and will form part of the memory photo album for the future. All three events show the person they are loved, and respected, and important to the family dynamic and that the person is a valued component of something greater and bigger than him/herself. In a nutshell, all three should be good things to do.

But risk comes first and appears to trump best interests. There will be about 60 relatives and friends at the wedding, so surely amongst them, any risk can be mitigated.

One question I keep asking myself is this: There you are at a multi disciplinary meeting with all the professionals. They are keeping the conversation solely to the Mental Health Act. Are you allowed to talk about best interests as per the Mental Capacity Act? (You could also ask, are you allowed to talk about the Human Rights Act? Or the CRPD?)

None of the three people I’ve mentioned above were unwell at the point of their admission. They ended up in hospital because of failings in their home care provision. But because they’ve ended up in hospital, under a medical decision maker, everything is seen through a medical lens.

One last question – if the MCA is meant to such an empowering force for the good, how comes it doesn’t come within miles of the three guys in the stories above?

Sleepy & Wakey

Yesterday, the BBC reported on the plight of care providers who, following a tribunal ruling, are being told by HMRC that they have to pay the hourly national minimum wage for support workers who carry out a sleep-in night shift. The report also states that HMRC are demanding that this arrangement goes back six years so therefore agencies will have six years of back pay dues to its workers.

Mencap lost an appeal against this ruling and are planning a further appeal later this year. Here is their statement on the matter:

As usual, the cry from the care providers is that this will be the tipping point that pushes them into insolvency. Possibly. What tipped a long time ago is the ethical and moral positions of the key players. None of them come out of this very well.

Mencap’s statement is appalling. It cast’s its own workers as the money grabbing villians. It tries to scare the shit out of its own service users. And it paints itself as the victim of the piece.

That doesn’t wash at all. They have been aware of this ruling (as have other providers) for ages. They have chosen not to act on it but to use their funds to fight it. At the same time, they have chosen to pay their staff £29.05 for working a night shift. A night shift is usually defined as 9 hours, so at £29.05 for 9 hours work, that is way way below the minimum wage.

The one piece of information that Mencap is holding back is how much they are paid by the commissioning body for providing a night service. Whatever that figure is, you can bet it is more than £29.05. But revealing what they get paid doesn’t fit in with the victim narrative. Unfortunately, their appeal for support on the Mencap Facebook page has backfired, with many posters critical of their pay rates:

What this sorry story shows once again is how hopelessly compromised Mencap are. How can they be “the voice of learning disability” and a major care provider at the same time? Their statement (above) demonstrates that their customers and their staff are pretty low in the pecking order in their priorities.

At the same time, the commissioners have got shit on their shoes too. They have continued to pay set rates for night shifts, buried their heads in the sand and tried to shift liability onto the care providers or the direct payment recipients.

In Hillingdon, they only changed their rates from 1st April 2017. They now pay an hourly direct payment rate of £10.73, regardless of whether the person is working a day or a night shift. However, they haven’t actually paid the new rates yet. We’re four months into the current financial year and they are still paying the old rates. I keep chasing it up and am told they are waiting for “brokerage approval”.

Back in 2012, I was effectively bullied into accepting a Personal Budget. The LA told me they were unwilling to continue paying the agency rates and I’d have to take over the running of the budget at the lower direct payment rates. It was only then that I discovered what the agency had been charging. For a night shift, they were charging the council £125 but only paying the workers £35. They were making a £90 profit for every night. I did a deal with the workers paying them directly at £65 a night. They were happy because they were getting paid £30 more and the LA were happy because they were saving £60. That arrangement has continued, although the rate has increased to £70, which thankfully is more than the minimum wage.

I don’t think there should be a differential between a sleeping night and a waking night. The person is still at work. If they do get some sleep, they are still sleeping at their workplace.

In our house, Steven takes himself off to bed when News At Ten starts. The support worker may sit up watching the telly or he may lay down on the sofa bed. Invariably, Steven will be up and down for the next four hours. The support worker may just be needed to answer the occasional question about Duran Duran or he may be required to clean up a mess in the toilet. The bottom line is he will really only get some sleep when Steven goes to sleep.

This issue has brought about the usual cry that social care is being starved of funds. That is true. But what is also true is that LAS, Mencap and other care providers have choices how they spend their money.

And often it is pursuit of a political ideology or more basic self interest greed that accounts for a large part of these sparse funds.

22 Years

Funny that 22 is Steven’s favourite number. There are 22 boxes in Deal or No Deal. Manuel took 22 rolls of toilet paper up to Mrs Richards’ room in Fawlty Towers.

Yesterday, we had an amazing coincidence that spans 22 years of Steven’s life.

A few months back I was approached by the quarterly journal PMLD Link. They had read my blog post about the review of the Deprivation of Liberty Safeguards and wanted to reproduce it in their summer edition of the journal.

Last week, I got an email from the editor asking for my address so they could send me a copy of the published article.

It arrived yesterday. Turning to the inside page, it had a list of the key personnel in the production of the journal. The first name rang a bell and the town where he lives rang an even louder bell.

It was the headteacher of the first school Steven went to prior to his adoption. Steven only went there for the first year and then he moved South to live with us.

I emailed the chap and I was right, it was Steven’s old headmaster. He hadn’t made the link when he published my piece, obviously because Steven had a different surname back when he knew him. He told me that Steven’s class teacher from 22 years ago is still at the school but Steven’s favourite music teacher retired a few years back.

It reminded me of a very moving moment we had during the week of introductions in Steven’s home town. We had been to the school the day before and met all the staff and Steven’s friends. The next day we took Steven to a Burger King for lunch. Sitting at one of the tables was the music teacher and several of Steven’s classmates. Steven dashed over to their table and proceeded to hit each one on the head as he excitedly pointed out: “Steven’s new Daddy”. The music teacher was in tears as he had never heard Steven string three words together before.

22 years. How time flies.

uxbridge pool2


A New Conversation

I’ve been thinking for ages of writing a pamphlet of “Tips”. One of the sections would be tips on how to get social care professionals to talk about the things they don’t want to talk about.

Take “challenging behaviour”. We’ve got to stop using that phrase. We’ve got to name it for what it is – signs of distress. The tricky bit is, if your son or daughter is in an ATU and having their detention lengthened because they’re a nice little earner for the provider, they won’t want to talk about signs of distress because it will mean acknowledging they are causing the distress. But even if you can’t get them to talk about what you want to talk about, you still don’t have to talk about what they want to talk about.

How to shut them up? Last night Steven didn’t fancy going to sleep. He sang his way through the night until 3am. Everytime the support worker went into his room to encourage him to go to sleep, Steven would say:

“Don’t talk about sleep Alan” and started singing Johnny Cash to the tune of Vindaloo. This would set him off giggling hysterically at his own joke. But it did the trick. It stopped Alan talking about sleep.

So, try it. Everytime a professional trys to increase their profit margins by dismissing signs of distress and turning it into challenging behaviour, stop them short by singing Johnny Cash to the tune of Vindaloo.

The other phrase that we must never ever be drawn into is “complex needs”. It’s a shifter of responsibility, a justification for anything, a checkmate conversation killer, all rolled into one. Died a preventable death? Ah yes, but she had complex needs. Entering his 16th year in an ATU? Ah yes, but he has complex needs. LA won’t fund a home care package? Ah yes, we cannot find a provider that can manage his complex needs. It’s the get out clause of all get out clauses. It’s the king of multi disciplinary one-upmanship.

My tip for changing the discourse of “complex needs” requires a bit of preparation. You need to go to your local supermarket before the multi disciplinary team meeting and purchase the largest trifle they sell.

The meeting begins. You want to talk about how the over medication of your son in the ATU is causing his organs to fail. You know it is killing him. You want to discuss the reasons for his clear distress. As sure as eggs are eggs, one of the professionals will say, “I hear what you’re saying but we’re dealing with extremely complex needs here”.

Tip number two. Take the trifle out of your bag and remove the film lid. In slow motion, allow your head to fall smack bang into the middle of the trifle. You then have a small window of opportunity, during the ensuing shocked silence, to change the course of the narrative and speak the truth. Seize the day!

There is another alternative. You could just say, “I refuse to use the language of challenging behaviour and complex needs” and just sit in silence. Trouble is that will either piss them off or be interpreted as acquiescence. Risky.

Take my advice. Try my tips. What have you got to lose, except your dignity as your wipe custard off your eyebrows.