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A State of Flux

March 8, 2015

Been reading this magnificent article by Armando Iannucci this morning. http://www.theguardian.com/commentisfree/2015/mar/08/armando-iannucci-money-at-heart-of-politics-general-election-2015?CMP=share_btn_tw

It put me in mind of a conversation with my mate earlier this week. I was doing my weekly moan about managing the personal budget and she commented that we are now expected to conduct our lives like we’re all a small State. There is no State anymore – we’ve all become our own states.

Everyone buys into the idea that the only way that choice and independence can be achieved in social care is through a personal budget. Why? Why does a disabled person and their family have to become a small business in order to have a semblance of a decent life? Why have I found myself as a director of a small company just so Steven can go swimming? I guess because the business model is King – we can’t even contemplate anything different. In terms of the personal budget, the State function has slimmed down to two roles: it pays the money and it’s adopted the role of ludicrous micro management and surveillance of my small business. Thank you. The State (in this case the Local Authority) probably spends more time and resources monitoring the way I operate the personal budget than it does monitoring the very large business corporations in my local area. And I’m sure that Vodaphone hasn’t had as much attention from HMRC as I have had, running a payroll for five support workers. The other morning the postman delivered this year’s package from HMRC. It made such a thump on the hall floor that me, Steven and the support worker jumped. It could have been the sound of a small goat climbing through the letterbox. The parcel contained all the forms to be completed for this April’s yearly return plus all the booklets from April to help me calculate the tax and national insurance for the forthcoming financial year.

It’s been a year since we had to take on a personal budget in order to stop Steven’s care package ripped to shreds. The State loves its partnership working but not when its partners are asking for too much money. “Stakeholders” in Steven’s care like the care agency and the cab firm had to go because their fees were greater than the LA were willing to pay. Here is the “choice” agenda at its finest – pay these agencies and Steven has his care package cut considerably or become a small business and find your own agencies. Become an agency yourself and create more agencies to service your agency. I don’t spend as much time with Steven as I used to do pre personal budget. Around 4pm on a Thursday, we used to have a Gladiators session. Now I have to leave that to a support worker because I need to get on and do the weekly payroll. And I have to clear large spaces in my diary when it’s time to do the quarterly returns. I’ve had to reduce my real paid work in a week that the LA direct payment return needs to be flied. I have to juggle my businesses – the one that earns me an income and the one that gets the state off the hook.

This week Norman Lamb published his green paper for learning disabled people and those with autism. It’s called “No Voice Unheard – No Rights Ignored”. It’s a bit of a clunky title. As Chris Hatton pointed out – there are a few too many double negatives in there. Having said that, it’s a good report and nobody can really argue with the issues he is seeking to address. I believe that Mr Lamb really wants to change things for the better and there are many points in his report that are quite revolutionary in their simplicity and logic and humanity. I suppose, at the end of the day, it will all boil down to money. The impact statement at the end of the report is very telling – it concentrates almost solely on money. Things like a decent quality of life don’t come into it – they don’t have an impact.

This week, the LBBillers met up to discuss the second daft of #LBBill. I think the LBBIll goes further than Mr Lamb’s paper. I’ve been trying to distil the aims of the Bill into two sentences and came up with this: “The LBBill aims to promote the rights of disabled people to chose where they live, who they live with, the type of support that they need and the kind of life they want to live, in their own home. The LBBill also aims to make it harder for the state to force disabled people into residential care or treatment, unless that is what the person chooses”. Nobody could argue with that I’m sure but the big test for the bill will come when the money men have their twopennyworth. What will the large providers have to say about people turning their back on their institutional homes and opting to live in their own homes? What will the large behaviour support industry have to say about the diminishing need for assessment and treatment units? What will local commissioners have to say when they won’t be able to negotiate massive block contracts to provide institutional care for people?

But we have to remember that for the LBBill or Norman Lamb’s paper to become a reality, we are going to have to accept that the disabled people and their families are going to have to become a small state for it to work in the way that they want. Neither the infrastructure nor the will exists anymore for it to be any other way.

It’s Sunday morning and Steven is having his usual Sunday music session. It got me thinking out of all the cool tracks he is playing, what should we have as the National Anthem for our small state here in Cowley. He’s currently playing Bryan Ferry’s “A Hard Rain’s Gonna Fall”. Would that do?

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From → Social Care

6 Comments
  1. Audrey Ludwig permalink

    Your blog is is critical reading for all those who go naively into personal budgets and employing support workers without fully understanding the implications of being an employer. I am a discrimination lawyer and worry that issues like legal expenses insurance to cover employment and discrimination issues do not seem to be addressed in personal budgets. Access to a “advice line” is not good enough.

    Having assisted many claimants workers with disabilities I worry how respondents with disabilities will fare if confronted with an Employment Tribunal claim to defend. Whilst the risk has diminished due to hight court fees, it still needs planning for.

    • It worries me too Audrey. I had to terminate the contract of one of the support workers last year (long story!) and was terrified that we’d find ourselves in an employment tribunal. But I have a fear about many issues attached to having to run a personal budget – there must be things that I don’t know about because I’ve never been told that could easily catch up with me one day.

  2. weary mother permalink

    Mark,

    For info re residential care/ATU’s: Have a look at CQC report on St Andrews Hospital Northampton, dated 15th February.

    • I read it a couple of weeks ago after Chris Hatton drew it to my attention via his blog. Disgraceful. This is the place that I wrote about last year where they are planning on opening a new 150 bed unit. It’s also one of the places on Hillingdon’s short list for sending Steven to back in 2010. Report after report damns the place but it still keeps being fed with people.

      • weary mother permalink

        CQC report on Hillingdon NHS Trust? ……and St Andrews Notts….even worse..? (CQC ratings)

        I looked at all the newish CQC’s reports today. On reading their evidence I cannot understand how ‘needs improvement’ ratings are adequate. All the CQC categories are so interlinked nothing can be rated as ‘good’ if any of the other are failing, surely? On these reports anyone with a learning disabled son/daughter would rate these organisations as ‘dangerous’?

    • And here’s the link to the original post – https://markneary1dotcom1.wordpress.com/2014/09/12/rebirth-of-the-northampton-lunatic-asylum/ I’d forgotten that staff member who came on to defend the place.

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