‘Don’t give me balloons to fly then burst them one by one’ - Call for personal budgets to reach more disabled people in Norfolk

Sandie Bailes at her home in Dereham. Picture: Ian Burt

Sandie Bailes at her home in Dereham. Picture: Ian Burt - Credit: Ian Burt

As a charity calls for an overhaul of how care for disabled people is arranged, MARK SHIELDS reports on what personal budgets meant to those who rely on them.

The NCAN welfare reform conference at the Kings Centre. Mark Harrison, chief executive NCoDP (Norfol

The NCAN welfare reform conference at the Kings Centre. Mark Harrison, chief executive NCoDP (Norfolk Coalition of Disabled People). Picture: Denise Bradley - Credit: Copyright: Archant 2012

For Sandie Bailes, having the chance to choose her own care wasn't a luxury – it was a freedom which may have saved her life.

When she was diagnosed with multiple sclerosis in 2001, just three years after having a brain tumour removed, she felt any control over her life was slipping away from her.

It wasn't until she decided to take her personal budget as a direct payment, meaning she could choose what care it was spent on, that she regained that control - an example that a Norfolk disability charity believes many could learn from.

'I think personalisation frees the human spirit,' said the 67-year-old.

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'Before, everything was organised for me. I was sat in a wheelchair with a blanket over my legs: I didn't go anywhere and I felt like my life was over.

'But then I had the freedom to make those choices. The real Sandie came back and I started laughing. Personalisation brought back the self-worth I thought had gone for ever.'

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Following her decision in 2010, Mrs Bailes made small changes which had a big impact: she bought a shopping scooter to leave the house alone again, and recruited her own personal assistants – whom she now counts as friends – rather than council-appointed carers.

Mrs Bailes, of Keats Close in Dereham, is one of 4,103 people in the county who spend their own budgets in this way.

The disability charity Equal Lives believes her story could be repeated by many others, if only they knew more about the system.

It is in talks with Norfolk County Council about driving the figure higher, and the authority is looking at the possibility of peer support replacing some of its own services.

Chief executive Mark Harrison has called for a culture change to put the lived experience of disabled people at its heart, with Equal Lives becoming the first point of contact for disabled people spending their personal budgets, and believes it can save the authority money at the same time.

'We know where the shoe rubs. Social workers have no idea where the blister is - we do,' he said.

'We know what doesn't work, and that's where professionals do things to disabled people, for disabled people and on behalf of disabled people, without engaging with them.

'We have to move away from professional-led services that build in dependency and cost, to a peer-led service where disabled people can support each other to self-empower.'

With Norfolk County Council looking for savings of £169m over the next three years through its Reimagining Norfolk programme, and adult social services asked to save £75m over the same period, there are fears that reducing personal budgets will erode recent advances.

Mr Harrison said: 'If [carers] are reduced to just getting you up, feeding you and putting you to bed, you are effectively making people prisoners in their own homes. There's very real evidence that things are moving backwards.'

Norfolk County Council has agreed to look at the charity's suggestions in the light of reduced funding.

Catherine Underwood, director of integrated commissioning for adult social services, said: 'We think that if we can help people to stay independent and supported at home for longer, then that will get better outcomes for them, and that will avoid unnecessary use of limited council funding.

'We want to best understand how we can support people to remain independent and supported at home and in their communities.

'This is about making the best use of the funding that NCC has, by setting that alongside the other support that people access. For example, meeting with people in peer support rather than through a day service which could mean that a formal service isn't needed.'

Suffolk County Council said it had no plans to examine similar proposals, adding its existing team successfully managed the direct payment service.

Sandie Bailes has already seen her personal budget fall from £21,000 to £19,000, and fears it could fall further at her next assessment.

She said: 'They've got their boxes to tick, and that's what matters.

'I've said to them 'Don't give me balloons to fly and then burst them one by one'.

'But by cutting the budget right back, that's exactly what they've done.'

What do you think of the issue of personal budgets? Write, with full details, to Letters Editor, Eastern Daily Press, Prospect House, Rouen Road, Norwich NR1 1RE.

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