Direct Payments
The following article is reproduced from Caring magazine, Carers UK's magazine.
"Interview with Don Jones about Direct Payments."
When Don Jones's parents died he had no hesitation in stepping in to look after his sister Sheila who has a learning disability. His parents had always looked after Sheila without help and for Don those early days of being a carer were very tough.
"I gave up my job to be a carer. I lost out on my pension and I used all my savings, just so I could keep Sheila at home. In a way I am a victim of the system because I simply didn't understand how the system worked and of course no-one explains it to you. So I paid a large financial penalty for caring."
When faced with a pile of unpaid bills Don asked his MP for help. It proved to be a turning point. "I went to see Dawn Primarolo at her surgery and asked if the Government was doing anything to help people like me? To her credit she pointed me in the right direction." His MP told Don about 'Valuing People' the Government plan for people with learning disabilities and Don started going to meetings to find out more. "It was then I started hearing about legislation and things like direct payments and I thought to myself 'this could give my sister her life back'."
A direct payment is a regular cash payment for a disabled person, or someone acting on their behalf to arrange their own care. Don saw this as a chance for Sheila to be truly independent and so he began the long process of fighting to get a direct payment from his local council. "The local authority did an assessment and agreed that Sheila needed 24/7 care. We identified what hours needed to be covered and then we started horse trading!" laughs Don. "It's always a compromise, you never get everything you need but if you can get a chunk of what you need then you're on your way!"
Sheila's care needs are now met by a combination of a local authority direct payment and funding from the Independent Living Fund. This means that as an employer Don has to handle accounts, payroll, and taxes - something that many people find off-putting. "I didn't know if I could be an employer but we built it up gradually and I got lots of help along the way." Don explains, "Jobcentre Plus were brilliant and did all our advertising for free. They screened candidates and they give you a place to conduct the interviews. Our local authority did all the Criminal Records Bureau checks and the tax office have a special service for small employers. They came to the house and went through it with me, working out a simple way to do the tax." Another source of support for Don has been other carers, "There are three people near where I live who also get direct payments and we are in touch with each other. In emergencies we can pool our staff to provide cover for each other."
From a beginning with just two staff, Don and Sheila now employ a team of eight care workers. Don ackowledges that it sounds like a lot but explains that Sheila has developed her own relationship with each of them. "They all do different things with Sheila and each of them has a role to play. It's called a person-centred plan and it's all about what Sheila wants. I can't begin to explain the difference it has made to her. Only yesterday one of our neighbours said to me that she had never seen Sheila looking so well."
Don feels direct payments have transformed the quality of life for his sister and looking back on the time when he was caring full time, Don can now see the limitations of the care he could offer Sheila. "The thing is when I was the full time carer I couldn't do all the things the team do for her now. I was just one person and the fact was that Sheila was in the house 85% of the time. Now she's out everyday and even has her own mobility car that the team use. If Sheila decides she wants to go out to the shops or just go for a drive, then the team take her. That's what being independent is all about. She has a new lease of life and it's just amazing."
The knock-on effect is that Don is beginning to see himself as Sheila's brother again and not just her carer. "It means that I'm no longer the be all and end all of Sheila's life. In a sense I got my sister back and I'm slowly getting my own life back. When you're caring full time your own identity ceases to exist. Looking back I realise how invisible I became to everyone. People would ask about Sheila but no one ever asked about me. So now I'm slowly building my own life back up again."
Having seen the transformation of both his own and Sheila's lives, Don is now using his time to campaign for other carers. "I feel strongly that carers need to know their way around the system. If a carer requests a direct payment from their council that's not optional! The council has a duty to provide it. It makes me angry when I hear of carers who are told you can't have one or we can't afford it. Saying no just isn't an option and carers need to know about their rights."
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