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Declaration for independence

The Independent
The right help can drastically improve the lives of the disabled, but there isn't enough of it, says Helena Pozniak

Freedom fighters: Emma Sheldon, project manager of the Southampton Centre for Independent Living, run by disabled people, with board member Robert Droy

Even though she can't move as she wants, Karen Routley does Tai Chi. She's had multiple sclerosis (MS) since 1993, so instead she visualises some of the movements. "It sounds strange but it's very powerful, calming and relaxing," she says. "Before MS, I wouldn't have even looked at classes like this."

Routley stopped her work as a secretary at the onset of the disease, took up yoga – where she learnt to visualise – but had to give that up when she could no longer get off the floor. When she lost the ability to drive, her world retreated. "It took everything away from me. I was stuck in the house."

Social services introduced her to Vitalise New Horizons Centre in Derby, which supports people with disabilities at a low point in their lives. Through the centre, Routley found an assistant who has taken her to the gym, to dance classes and to Tai Chi. "At first, I was reluctant and a bit afraid. But I wanted to feel good about myself. So much of it is about having a good assistant. We have a laugh. I just like being with people."

With experience, judgement and sensitivity, Vitalise can pinpoint what service might boost the confidence and quality of life of people with complex disabilities – be it a swim, bowling on the Wii or responsibility in leading a discussion group. "We can bring them through and out the other side, where appropriate," says centre manager Nicola Barnes. "It might be someone who's had a stroke and not been out of the house for a year. We concentrate on individual needs and making it fun rather than slotting them into something."

There just aren't enough centres like Vitalise about, offering tailor-made services, says Caroline Ellis, director of Radar, the disability campaigning organisation. Radar champions independent living: disabled people enjoying the same freedom, choice and control as non-disabled people; but the reality at present falls far short. The level and methods of funding depend on local authorities, and vary hugely across the country. Often, disabled people don't have the control over their own services – or lose it if they move.

"There's no point promising personalised services if there aren't the providers to choose from. We need better-quality services from user-led charities; they are truly ground-breaking."

A whole raft of legislation is underway to modernise social care, although no reforms have yet passed into law. As the Government ends its public consultation on the shape and funding of social care ahead of a White Paper expected in 2010, Radar calls for legislation sooner rather than later and to guarantee control for disabled people over their own quality of living: support to be able to work, learn and take part in public life, fulfil family roles and to socialise. "The new system must deliver more than the 'wash-and-feed-only' approach many experience today," says Ellis. "It's not about being a burden, it's about being able to contribute." She calls for integrated funding, a "one-stop empowerment shop" to remove fragmented budgets.

As part of Radar's People of the Year awards, a new category has been introduced this year to celebrate people or companies that help those with disabilities to live independently. Several on the shortlist have been set up or are managed by the users themselves. "The value added from somebody who's been there is huge," says Ellis.

One such organisation is PA Pool, a dedicated recruitment website for personal assistants. It was sheer frustration at the difficulties of finding an assistant that led graphic designer Katy Etherington to set it up. She has spinal muscular atrophy and relies on a round-the-clock assistant. Now with 4,000 users, PA Pool has created communities of assistants and users, who can find each other easily and swiftly. "General recruitment websites were rubbish – you'd have to wade through 60-odd CVs. PA Pool takes away a lot of the need to chase references and checks. It's up there for all to see."

Knowing what users want led father Phil Conway to set up CoolCare, which helps families of disabled children and young people to find support. His agency recruits, screens, trains and places carers with appropriate families. Just one in 13 families with disabled children receives support from local authorities. Conway's 11-year-old son Shaun is disabled, and Conway knows how important it is for assistants to fit in with the family and child. "I wanted someone to see Shaun as funny, interesting and cool, not someone to be feared or pitied. Young people also want to hang out with carers of a similar age; they want to relate to them." Staff include young people aged mostly 18-28.

While it's only in recent years that many organisations offering such innovative support have evolved, others have had pioneering services for years. This month, the Southampton Centre for Independent Living is celebrating 25 years in practice. Set up and run by disabled people, the centre helps people manage their own direct payments and recruit the support they need to maintain independence. "They were doing all sorts of amazing things long before Government 'invented them'," says Ellis.

Earlier this year, the Government announced measures to encourage 50,000 jobless aged 18-24 into social care and to improve the status and career prospects for the 1.5 million already working in the sector. Turnover of care staff is high, and demand for care will increase alongside an ageing population. In fact, The Shaping The Future Of Care Together Green Paper estimates that by 2026 an extra 1.7 million adults will need care and support, which points to a need to increase the adult social care workforce. Skills For Care has estimated that if care provision remains the same, this could mean the workforce needs to increase to about 2.5 million by 2025.

"Yet we hear of nothing but budgets being slashed," says Ellis. "Money for care and support needs to be ring-fenced and guaranteed. Disabled people know what the solutions are – but they need to have the means to create them."

‘It’s the best feeling in the world’

Nyasha Chiwuta, 22, a business management and sociology student, trained with CoolCare, an agency that trains and places carers with families of disabled children. She now helps a 14-year-old boy with autism and a 16-year-old boy with physical disabilities. She also liaises between management and carers.

"I come from a very large family, so I'm used to children. In training I felt very supported, I could ask anything. We did things like feed each other and brush each other's teeth to experience what it's like to do or experience something so sensitive.

Young people are happy to have you around. You're not just a carer, you become their buddy. I help one boy to get ready every day for school. At weekends, I take out another 14-year-old boy with autism. He has a lot to say. We go to the cinema or for a walk; we're still getting to know each other. It's the best feeling in the world and not daunting.

CoolCare really care about their employees – they see the potential in you. I've always wanted to make a difference, and now I make a difference every day just by going to work. It's funny to think that it all started because I wanted to get a bit of experience for another degree in occupational therapy."

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