Who is 'in control' now?

Next year marks the 10th anniversary of In Control. One of our first key messages was "the current system is broken".  We argued for a new way of doing things and developed self-directed support (SDS) as a way of shifting power to people.  Not only did the evidence show that SDS improves people's lives also that it is financially efficient.

Personalisation became the policy direction from 2007, but in practice this new radical policy has been delivered very variably.  In some places the ethics and principles have sadly been lost to a focus only on the money in an ever more pressured economic situation.  Trying to implement personal budgets by squeezing them into compliance with an already broken system removes both the chance for people to take control and also the potential for financial efficiencies.  After early hopeful signs of a shift, a vicious circle has begun again in many local authorities, where people and families need to show they are dependent to gain support and services exhibit a patronising and intrusive culture, over controlling how people receive assistance.

Every week, through our helpline, we offer advice to many people determined to self-direct their support. A worrying pattern has been emerging which is often less about how much money there is and more about  counter-productive rules and restrictions on how people's personal budgets can be used. Here are just two examples:

Ethel is 75years young - she has a personal budget for her social care needs. She uses her budget to pay a neighbour and a local agency to provide her with support.  Her daughter lives in the USA and is suggesting her mother moves to live with her so she is able to support her. Ethel thought long and hard about this and started to save money for the move via her pension and her personal budget.  Motivated by the prospect of the trip she starts to reduce her support by 15 minutes a day, struggles but achieves it in order to save a little more money for the move. At the end of the year she had saved £500 from her personal budget and around the same from her pension funds. She was ready to make the move. Her social care review of her budget then took place. The council noted that she had not spent the whole amount of her allocation - Ethel explained that she had deliberately struggled to save the money for the trip. The authority then broke the news to Ethel that a trip is not a correct way to spend the money and thus will be clawed back, noting that had Ethel stated it was for respite, she likely could have kept the money. So instead of Ethel now being supported by her family in the USA at no cost to the council, she remains here - using services.

John is a young man with autism. His family want to support him to gain some independence in adulthood. He finds it really difficult to make friends. He started doing a person-centred plan - the idea came from his family that John get a dog....he would feel secure enough to walk out on his own and it would encourage new people in his life, dog walkers talking to each other etc. The family worked so that John would pay for the dog and its food/vet costs, but asked that he could use a little of his personal budget to have the dog trained to walk by his side. Cost £200.00. At first the authority said it could not buy anything that was alive with a personal budget (which made us wonder about the staff…they don't seem to be zombies), then they said the budget could not be spent on training the dog, but they would increase his budget by £20,000.00 - in order that he can pay a member of staff to walk the dog with him (which, of course, would completely defeat the object!).

I have not estimated how much this to and fro correspondence cost, let alone the offer of £19,800.00 more than what was wanted and needed. The council attitude and bureaucracy was such that John and family couldn't wait and gave up fighting the system.

Now whilst some might sympathise - rules are rules, surely some common sense and win-win understanding is needed?  The above examples are not isolated incidents, we hear of such bizarre stories week on week from families and workers. Are people not thinking ahead, being resilient, using natural supports, budgeting well for their own needs with their family? But instead of encouraging and creating incentives for this behaviour, it is taken away. Senseless decisions are being taken and judgements on spend made on moral grounds, rather than whether the proposed use meets an outcome. Usually the outcome is re-directing people towards more traditional types of support which are often not what is wanted, needed or value for money. This removes the efficiency  that can be derived from self-directed support, as well as leaving people not feeling in control.

Surely what we should be doing is help people to stay connected to their family, friends and community. People can and do self direct their support, with and without assistance. When they have the freedom to do this without too much interference or invasion of privacy by the state, get much better outcomes (both qualitative and financial). It also builds towards a culture of interdependence on each other as people, instead of one of people needing support, being almost the property of the state.

The number of families and workers calling for advice and support is overwhelming and we are able to draw out the main issues as...

  • Lack of independent advice, information and support
  • Local processes for getting a personal budget/direct payment  leading to unnecessary delays, unhelpful gate keeping and extensive intrusive bureaucracy for people
  • Lack of the leadership needed to shift local cultures and break down mutual suspicion between workers and people using support

These issues need to be addressed urgently - legally, politically and culturally. We need to break the vicious circle people are in and start to allow people to take control of their support in the way it was intended. With the good news of personalisation and personal budgets breaking into health and the children's sector - the serious lessons must be shared. Squeezing personalisation into existing rules and systems does not work, neither does setting up new bureaucratic systems - it needs a radical change in attitude and good leadership.

In reality all it takes is people having an empathetic business and common sense approach and being brave enough to work WITH AND FOR people to take the control.

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Last Updated : 12 December 2012. Page Author: Pam Schreier.