Thanks for all the great responses to my blog on the myths of personalisation (many of them members of the excellent ‘Personalisation Group to revolutionise social care’on the networking site, LinkedIn). I was told about an example of one of the myths in action today: a council who had decided that direct payments were now the only way a certain group of people could access support, thus excluding them from the excellent local Shared Lives service, which is provided directly (‘in-house’) by the council (and you can’t use Direct Payments to buy an in-house service). Direct Payments as a way to limit choice – well done guys.
The solution to this is easy – people can use a personal budget to purchase the in-house service, then take anything left over in their budget as a Direct Payment, if they want to purchase something else. But I suspect whoever made this rule has an eye on the government drive (they don’t call them targets any more!) to increase Direct Payment take-up. I wonder if there has ever been a target set, which doesn’t encourage someone, somewhere to do the opposite thing to that which the target setter intended.
Anyway, thanks to your comments, I can add to my list of six myths. Mine were these:
1. Personalisation is all about personal budgets or Direct Payments.
2. Personal budgets and Direct Payments are the same thing.
3. Direct Payments are just for employing a personal assistant.
4. Independent living is about living on your own.
5. Older people don’t want personalisation.
6. Personalisation is a cover for cuts.
Commenters have added these:
7. People with profound disabilities cannot make choices.
Carol Benson explains: Support workers and carers can be quick to make this claim – even about people they know well . However, with time and creative thinking, it is possible for most people to indicate preferences over some aspect of their life. Personalisation does not have to be about the BIG things. Being supported to make a choice over a tiny area of their life may be a huge step forward for some people.
8. Personalisation is a social care “thing” and does not apply to other people living in supported housing.
Ceri Sheppard added this one and noted that it is linked to the myth that personalisation is just about personal budgets.
9. Personalisation depends upon “up front” allocations of money.
Colin Slasberg explains: This is, of course, a central tenet of the Government strategy, but is, at best a hypothesis. At worst it actually gets in the way of personalisation.
Colin argues that choice of service is only one part of personalising decision making processes. Just as important are “the way needs and outcomes are defined” and “the way providers deliver their services”. I agree with Colin that Resource Allocation Systems (RAS) cannot be relied upon for coming up with a reliable formula for predicting how much people need before their assessment. I think the problem here is that an area’s RAS is only supposed to be a way of providing an up front estimate of someone’s allocation, so that they could start to plan knowing the ball park figure they were working with. But many areas have invested so much time and energy in perfecting their RAS, they now think they have a magic formula which will give people an accurate allocation figure, rather than a ball park. Colin says that RAS’s are “quietly being dropped by councils in favour of the quite cynical “ready reckoners” which simply place a monetary value on existing packages.”
As an antidote to this rather depressing myth-list, I’ve also been gathering some stories of personalisation’s greatest hits. Today someone told me the story of a gentleman with sight problems who couldn’t use his unfenced garden without stepping in the results of the local dogs using it as a toilet. He used some of his budget to put a fence, with the result that he actually needs less support, because he can put out and collect his own washing,without a PA to support him with this or to pick up the dog mess.
Perhaps we could come up with a top ten of Personalisation Hits, to cut through the mist of these myths? My starter is a service I’ve mentioned before, called DanceSyndrome. This is a dance activities enterprise, started by Jenny, who loves dance but couldn’t find work as a dancer.
In less than one year DanceSyndrome has grown from one aspiring community dance leader who happens to have Down’s Syndrome working with one support dancer, to a committed group of 14 dancers who meet together regularly, half of whom have learning disabilities. They jointly co-lead workshops and share inclusive performances across the northwest and further afield. I was reminded of them, because I see that they are now recruiting for a Development Manager (if you are interested, you should email sue@dancesyndrome.co.uk.)
Perhaps Jenny would have started Dance Syndrome pre-personalisation, but her amazing success is one of personalisation’s hits for me. What are yours?
Escaping the invisible asylum 
One myth I’d like to explode is the idea that volunteers and family members must be in some way exploited by being asked to share the care.
With a personal budget such as In Control, my son has been able to visit his older sister and nephew in New Zealand for three weeks, with a volunteer escort who happens to be a long standing family friend. The result was that a trip which might have seemed hugely expensive, suddenly looks cheaper than using a local residential respite service. And using family and friends as volunteer companions solves the whole messy problem of having to put people on payroll, too. Now, would you describe the opportunity to spend three weeks in New Zealand in return for helping a friendly young chap with a learning disability as exploitation or slave labour? I think not.
By extension, this idea can also be used to pay for tickets and companions to theatre, cinema or football matches, short breaks and days out. If the activity is fun and desirable, and as long as the care needs are not too onerous, then it isnt that hard to use the extended social network as a circle of support, with all expenses paid but no money changing hands.
We do also employ “peer-supporters” at £5 an hour – these are sensible teenagers who enjoy the same kind of age-appropriate activities and are earning above the minimum wage for their age. As they are part-time and only work for a few hours a week, they dont pay income tax or VAT anyway, but they still get a payslip , and for this we use the moneysoft payroll programme – its affordable and simple to use. A casual contract is used, this is a call-on contract that allows time to be allocated on an assignment basis.
I think this is a fantastic overview of insights myself and people I know have made over the last couple of years.
I’d like to add in another myth/hit combination:
That social care does not allow for changes in people’s support needs, therefore:
– When things get worse, it is such a fight to gain access to further support that people often don’t want to give it up again when things get better
– There is very little room for aspirations – for people to dream for things, get better at things – just as your “hit” Jenny the dance leader did – but surely everyone has the right to pick something they love, and aim to get better at it
Excalibur also has a great story; your idea, Alex, of collecting “greatest hits” is a fantastic one that would be a really valuable resource. Maybe we could start a youtube channel? “Personalisation’s greatest hits” – I love it already!