Giving service users their own budgets is sparking a revolution in social care - providing tailor-made support without breaking the bank.
Mencap says standard services for people with disabilities are no longer good enough. Instead the charity is backing a radical new care model. At the moment support is often not available until the family has cracked under the pressure of caring for a vulnerable person 24 hours a day. People are confined to day centres, hidden from the community in which they live, or forced to leave their homes to live with strangers in residential care.
Carers who have taken part in the pilots are enthusiastic. Mary Dezzani says individual budgets 'have been life changing'. Ms Dezzani cares for her sister Barbara O'Sullivan, 61, who has dementia, epilepsy and Down's Syndrome. Ms Dezzani says: 'It means I am in control of Barbara's care. I can meet the people coming in and if they are not up to scratch I can send them away.'
Before West Sussex CC piloted the scheme, Ms O'Sullivan had support from care agencies for just seven hours a week, despite her complex needs. Ms Dezzani says: 'I was on duty 24 hours a day. I could not have carried on - I would have been in the loony bin.'
Now Ms Dezzani's daughter has been able to give up her job to work as a personal relief carer, providing flexible support at the times Ms Dezzani needs. She is always on standby, plus she's familiar with Ms O'Sullivan and understands her needs. The family also uses carers from an agency and from the Alzheimer's Society.
West Sussex CC has 15 people receiving support via In Control. John Dixon, director for social and caring services, says: 'It is an ambitious programme, and so far it has been richly rewarding.' So successful that he wants to expand it from learning difficulties to all West Sussex's 750 elderly service users within 18 months.
Individual budgets are 'not just about securing better services for individuals, but it is a route to getting better value for money for NHS and social services budgets'. The average cost of the care for each service user before the project was£70,000 - but actual spending has been£10,000 to£20,000 cheaper per head. Mr Dixon says this is because people are tapping into an entirely new workforce of friends and family that does not carry the overheads of councils or agencies. However, Paul Davies, West Sussex social and caring services team manager, sounds a note of caution: 'There are concerns about whether people who are employed privately have been police checked.'
Bringing the different funding sources together is tough. Although Ms O'Sullivan's budget has recently been increased to reflect her deteriorating health, the Independent Living Fund has not yet provided the cash. West Sussex CC has temporarily filled the gap.
In Control is demanding for professionals, service users and carers. Mr Dixon says: 'A huge amount of effort goes into the first point of constructing a package of support around the individual.'
Mr Davies agrees. He supported a young woman with Asperger's Syndrome, a form of autism, who used direct payments to move out of an unsatisfactory residential care placement into her own home. It was a lengthy process. The biggest challenge was putting in place the funding package and ensuring the different organisations were able to bring their separate agendas together. 'It does require extra work to organise the care and deal with a plethora of agencies,' says Mr Davies. 'With current levels of bureaucracy it can be very demanding.'
In Control started in six councils and has now signed up senior managers from 57.
Director Simon Duffy describes it as two ideas. 'Self-directed support means reorganising the way services are delivered with the service user at the heart of decision making. And individual budgets mean councils ration their resources up front, saying 'your needs entitle you to this'.
'Social workers have said 'This is what I came into the profession to do',' says Mr Duffy. 'At a more bureaucratic level it gives the opportunity for some proper, long-term planning. You can talk about the relationship between money and need in a more strategic way.'
He adds: 'We think this is the future. Resources might always be constrained but we all want to have much more control of our own destiny as human beings.'
Barbara O'Sullivan's budget was£22,000, but has increased to£36,000 as her condition has deteriorated.
Funding sources West Sussex CC, Independent Living Fund, Disability Living Allowance.
Personal relief carer£1,400 a month salary plus tax and National Insurance.
Agency carers£650 a month.
Alzheimer's Society carer£40 a month.
Incontinence services£60 a month.
Petty cash£30 a month (postage, stationery, occasional cover from family members for brief periods).