Elderly people will have to care for disabled grown-up children as Labour ‘rushes’ to close NHS homes

Fancy words can't hide the fact that it's just cost-cutting and that disabled people are going to be left to fend for themselves regardless of whether they can or not

Thousands of elderly couples fear their final years could be spent caring for disabled grown-up children as a result of Government plans to close down NHS residential homes. Under proposals that echo ‘care in the community’, Labour wants to move around 10,000 adults with serious learning difficulties out of state-run institutions so they can live by themselves. Ministers have been pressing for the changes since 2001 in a series of White and Green Papers that aim to prevent the disabled from becoming ‘institutionalised’.

But while the idea has been welcomed by some, few believe that council-run social services departments will pay for the expensive additional support that the disabled adults would need, and many fear the true burden will be met by ageing parents, who may themselves be struggling with illness.

And even though the proposals have not been put into law by Parliament, health authorities across the country are preparing to have them in place by March 31 next year. David Congdon, head of campaigns and policy at the disability charity Mencap, said: ‘There’s a danger in the rush to move people out of NHS provision that you simply make them go anywhere that suits your plan. ‘Seriously disabled adults need to have enough support where they’re living. You cannot do this on the cheap.’

The potentially devastating results were uncovered in an investigation to be screened at 8pm tomorrow on Channel 4’s More 4 News, which highlights the case of 44-year-old Tracy Butt from Norfolk. Tracy has cerebral palsy and epilepsy. She cannot speak, has very limited understanding, is incontinent and wheelchair-bound. Yet, despite this, she faced being uprooted from her NHS residential home. Tracy’s parents, both in their 60s, cared for her at home until they both suffered serious ill health. Her mother Jean was diagnosed with cancer and her father Bill underwent a heart by-pass operation.

‘Our illnesses brought home our own mortality – we realised we had to make provision for the future, and the decision that Tracy should go into long-term care,’ said Bill. They managed to find Tracy a place in a set of NHS bungalows in King’s Lynn, with round-the-clock care and access to an on-site day centre. But, two years ago, the couple were told that the local NHS trust in Norfolk intended to close the bungalows and move the disabled residents into homes in the community – because it had been ‘decreed’ by the Government. Jean was distraught. ‘How dare they do this, when Tracy’s happy and has the warmth and care she needs?’ she said. Bill was worried about what help Tracy would get in the future. ‘One plan was that Tracy would become a tenant in her own house, with care provided through social services,’ he said. ‘Supported living is a very good thing for many people – we just didn’t think it was suitable for Tracy.’

Social workers assessed Tracy in preparation for the move. But Bill said the subsequent report underestimated the difficulties she would face. ‘The report said things like “preparing meals and cooking: I cannot do this yet,” ’ he added. The implication was that Tracy may be able to cook some time in the future. Bill said: ‘It was ridiculous. Tracy’s now 44, and she’ll never be able to make a cup of tea. They said, “using the telephone: I cannot do this yet.” She’ll never be able to use the telephone. She can’t speak.’

The couple put their concerns to Norfolk Primary Care Trust and, according to Bill, were simply told the plans were ‘in a Government White Paper’. ‘We just didn’t think this was right,’ he said. The Butts sought legal advice and, when London barrister John Friel looked at the case, he was in no doubt that the Norfolk Primary Care Trust was wrong. ‘A White Paper isn’t the law, so for the Trust to suggest it was, was legally without foundation,’ he said. ‘The Trust’s attitude was aggressive. Effectively their words were, “You will get out of your accommodation, there’s no choice, we’re going to move you whether you like it or not.” ‘This case wasn’t picked up by local politicians, or the legal departments of local authorities, who accepted what was said. So the implications for the whole system are very serious. If Norfolk could get away with it, others could.’

The barrister took the case to the High Court and, following a court order, this week, the chief executive of Norfolk Primary Care Trust will write an admission to the Butts that the proposal of moving disabled people into the community, as outlined in a Government White Paper, ‘did not create a mandatory duty’ to close Tracy’s home. Norfolk Primary Care Trust maintains it is committed to moving disabled adults into homes in the community and that the Butt family will be ‘actively involved’ in this process. A spokesman for Norfolk social services said: ‘Following resettlement, we believe that everyone will benefit from better levels of support, and will have more choice and control over their lives than NHS campuses could ever offer.’

A spokeswoman from the Department of Health said the Government was funding a three-year programme costing 175million pounds. She added: ‘The Government is committed to increasing the housing options available to people with learning disabilities.

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