Shane

"We've finally got peace of mind" says Barbara whose 37 year old son Shane has Fragile x syndrome. Harry her husband leans back in his chair and with an air of satisfaction mixed with a good deal of relief adds, "It's tremendous knowing that he's with someone we trust."

They are a close family, who over the years have become experts in how to manage Shane's disability. It's no wonder that they are very particular about who takes care of him and how they do it.

Shane is an outdoorsy kind of guy. He loves to watch the stags in nearby Chatsworth, walk the dog in the countryside, and go climbing, caving and abseiling. However, Shane's high level of learning disability, coupled with the fact that he doesn't yet speak, means that he often becomes quite frustrated and loses his temper. "He's such a big lad now, over sixteen stone" says his mother Barbara "So those situations need to be handled properly."

"Home Care Direct, was the only agency we could find, who allowed us to be employed as Shane's carers." Says Harry looking across the table at his daughter. Sharlaine adds. "I take care of my brother for twenty-three hours a week. Mum and I look after him between us.

Current ways of delivering care services are about to disappear rapidly now that people who have additional needs are beginning to take up their option to claim a regular income for themselves, rather than to use the old one-size-fits-all type of service.

Home Care Direct also employs another carer for a further 24hrs who we chose. He's been with us for a few years now and knows Shane well." Sharlaine smiles as she thinks back, "It's been good for Shane and it's been good for me too" she says, "At the time, I broke up with my partner. I had no income and would have had to go on benefits." Shane needed a reliable helper and I needed a job. It was the perfect solution." "Everyone's a winner...Shane's a winner" remarks Harry.

Sharlaine thinks for a moment and then says "They help you think through Shane's care plan and then you make your own mind up. Everyone you approach is professional, but very friendly. You decide which way you want to go and they help you to get on with it."

At this moment, Shane walks in and it's obvious, that he is happy to be with people who love him.

The transition to individual budgeting is in its infancy but it recognises that people are each their own experts about the conditions and situations that they find themselves in. In the past, when they've sought help they've either had little or no response, or been completely taken over in all aspects of their life and left quite powerless. Now everyone has a chance to have their own expertise recognised and to work in partnership with professionals whose practical support that can buy in if required. This is a major step that will enable people with disabilities to choose and maintain a way of living that suits them best.