Who will help them when we die? Huge response to Rosa Monckton's e-petition to ensure lifetime care for disabled people - March 2012

A host of celebrities, bestselling authors and entrepreneurs are backing a new campaign calling on the Government to ensure cradle-to-grave care for people with learning disabilities. 

Chef Nigella Lawson, authors P. D. James and Louis de Bernieres, playwright Sir Tom Stoppard, and businessman Sir David Tang are among those who have signed an e-petition launched by businesswoman and film-maker Rosa Monckton.

Her Adults In Need campaign is calling for the Government to ring-fence money allocated to councils for social care.

If the petition secures 100,000 signatures, the issue will be debated in the House of Commons.

‘The response has been overwhelming,’ said Rosa, who has been contacted by more than 1,500 parents and carers since The Mail on Sunday published her two articles about the lack of provision for people with learning disabilities.

She told of the anguish faced by parents fearful about what will happen to their children after they die.

The BBC broadcast Letting Go, Rosa’s documentary on the same issue, two weeks ago.

Now sign up to Rosa's e-petition

‘There is such a lot of anger and anguish out there as parents and  carers struggle to get the care their loved ones need,’ said Rosa.

‘There needs to be a change in the system, away from this tick-box approach to people with learning disabilities which does not treat them as individuals or provide any compassion.’

In 2010, the Coalition Government promised an additional £2 billion to support adult social care by 2014-15.

‘The money is not ring-fenced,’ explained Rosa, who is married to journalist Dominic Lawson, and whose 16-year-old daughter Domenica has Down’s syndrome.

‘This means we may get some very nicely painted town halls but not what some of the country’s most vulnerable people need.

‘The Government must set up a single body to organise the distribution of money for adult social care and they must ensure that it is spent on this vulnerable group of people.

‘If you allocate a department a budget you want to know that the money has been spent on what was intended – it is basic good practice.’

Rosa has been emailed by people from all over the country, many facing a daily struggle with social services, and united by a concern about what will happen to their offspring in future.

Among them was Helen Brown, 58, from Somerset, who is worried about what will happen to her children Calum, 24, who has Asperger’s syndrome, and Elly, 22, who suffers from autism.

‘It has been a full-time job for me just trying to get the services they need,’ Mrs Brown said.

‘My daughter is now in residential care so I am more worried about what will happen to my son, who still lives with us, when my husband and I are gone.’

Adrian Coupar, 67, is concerned about the closure of local services attended by his son Michael, 46, who suffers from cerebral palsy.

‘At the local day centre the care is excellent,’ said Mr Coupar, from Macclesfield.

‘Every day my wife and I know Michael is safe. But it is now being closed and all its “clients”, as they refer to people such as my son, are being moved to a new centre.’

Adrian and Helen are calling on Mail on Sunday readers to back the Adults In Need campaign by going online to sign the e-petition.

Care Services Minister Paul Burstow said: ‘Urgent reform of the care and support system is needed.

‘We know that council spending on social care is under pressure – that’s why the Government is providing an extra £7.2 billion over four years to local authorities so that they can protect access to care and support.’


By Emily Hill