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Andrew_and_Tori-AnneEvery parent wants the best for their child. For Pam and Pete Cowe, who live in Sunderland, the needs of their son and daughter Andrew and Toni-Anne, who both have learning disabilities, are all-important.

The Cowe family opted for individual and personal budgets which means that Andrew and Toni-Anne have a high degree of choice and flexibility about how they plan their days and live their lives. The support funds personal assistants for Andrew and Toni-Anne, who are provided by Lifeways.

Pete explains: “We decided to go for individual and personal budgets, after trying other kinds of support such as respite, short breaks and a day centre. But Andrew likes to get out and about, rather than staying indoors and Toni-Anne found dealing with lots of new faces difficult.

Looking to the future, we want our children to have the best possible chance to live independent, fulfilling lives after we’re gone. So what we’ve done is to write a ten-year plan which shows, down to the smallest detail, their interests, personalities and support needs - everything from getting up in the morning to going to bed at night and all the steps in between. Writing it down on paper brings it home to you – and it’s quite an emotional experience, actually. I think other carers would go along with that. It’s surprising what you do.”

“Once we knew what we wanted we decided to ask Lifeways to provide staff – rather than have to hire and fire ourselves. We find that quite emotional and hard to do. If staff are off, they provide someone else, so there is always cover. They do all the wages, tax etc, so all we have to do is write a cheque once a month when we get the invoice. The money comes out of banks accounts that we set up especially for the individual and personal budgets to go into.

At first it was a bit odd having strangers coming into the house. When Andrew wanted help I would automatically jump up and try to sort him out, getting in the way of the PA! ”.

Lauren is a PA who works with Toni-Anne: “Through the day Toni- Anne decides what she wants to do – if she wants to go shopping, we go together. Sometimes she likes to go out for a cup of tea. She loves to go to the pictures and she likes to do girly things like getting her nails painted. Sometimes we’ll just sit and watch telly together. It all depends on what Toni-Anne feels like doing that day. As a PA I realise that I’m coming into somebody else’s house as a stranger – it does take a long time to get to know somebody and to make people feel as comfortable as they can be.

The Cowes have written a ten-year plan. This has made my job slightly easier because I know exactly what they want and what they’re planning for the future, putting Toni-Anne at the centre of the process the whole way through.

”Michael works as a PA with Andrew: “I’ve been Andrew’s PA for over a year. At first, I got introduced to Andrew slowly over a couple of days to see how we got along. Once Andrew decided he liked me I started working around what Andrew wanted. Shared interests – such as tenpin bowling – are very important. Andrew and I bounce off one another because we have so much in common. I get real enjoyment from my job.”

The Cowe family recently enjoyed the holiday of a lifetime. As Pam put it: “Having the Lifeways staff come along with us freed us up to do things that we wanted to do and Andrew and Toni-Anne could just go off and do what they wanted.

For example, they went to Longleat and we went to Cheddar Gorge. We always said we would like to have a walk around, but it’s difficult when you’ve got two wheelchairs. We found that we weren’t so tired when we came home – when you do all the normal things such as cooking etc you come back absolutely shattered and need another holiday just to recover!”

Andrew has recently made his debut on the conference platform. He went in front of an invited audience of supported living specialists in Sunderland and, supported by Michael, gave a powerpoint presentation entitled ‘How I have changed my life’. In it he said: “Before I had an individual and personal budget I’d just go out with my Mum and Dad. I also wanted a place where I could do work and meet some new mates. Having support helps me do the kind of things I would find hard alone.”