Joan Smith: If Celyn is a special case, what about the other 770,000?

Click to follow

Fifteen months ago, I chaired a meeting in the Commons for families with severely disabled children. Most were single parents, and some of their stories were horrendous. Lack of support and competition for scarce resources were common; one mother had become so desperate that she'd thrown herself from a bridge and, amazingly, survived.

I have a goddaughter who has Down's syndrome. I've seen at first hand how hard it is to get support and protection for girls who are vulnerable, to sexual abuse among other things. I don't think David Cameron is an uncaring man, especially after his own experience of looking after a severely disabled child, but I doubt if he realises just how hard life is for the vast majority in this situation.

In the past, the Prime Minister has spoken movingly about his own son, Ivan, who died suddenly in 2009. Last week, he responded swiftly when the mother of a severely disabled six-year-old posted a heart-rending message on a website and accused the Government of failing to support families like hers. Riven Vincent's daughter Celyn is blind, quadriplegic, epileptic, and has cerebral palsy; In a visit to her home, as part of his election campaign, Mr Cameron promised to take a personal interest in Celyn's case. So last week when Riven reached breaking point and asked social services to take her daughter into care, her forum "friends" rallied round and whipped up a media storm.

It wasn't actually clear if the cause of Ms Vincent's distress came from government-imposed cuts or financial decisions made by her local council. Ms Vincent said she'd been refused an increase in the modest respite care her family currently gets, even though the Government, like its predecessor, has increased funds for that purpose. Campaigners point out that the money isn't ring-fenced; local authorities are free to use it for other services. What is clear is that Ms Vincent's, who has a partner and three other children, has been driven to despair. But her situation isn't unique.

This is where we get to the heart of the problem facing Mr Cameron. Those families I met in 2009 were already struggling and that was before George Osborne announced savage public-sector cuts. The coalition's cuts agenda might be perceived as fair in a society in which resources are equally distributed to begin with, but they are not. Worse, Mr Cameron leads a party committed to lower taxes and less state intervention.

His Big Society isn't going to produce hundreds of thousands of suitably qualified volunteers who can take some of the burden off these families. Nor are they, in most cases, able to pay for help themselves. Contact a Family, a charity that supports parents with disabled children, has carried out research: the families it looked at had an average income of only £15,270, well below the UK mean, but the cost of raising a disabled child is three times higher than that of bringing up non-disabled children. Few mothers of disabled children can work outside the home, and, unsurprisingly, many families are in debt.

Many families with severely disabled children were in financial and emotional crisis before Mr Cameron came to power. There are 770,000 disabled children under the age of 16 in the UK and most already live in poverty. What does the Government have to offer their families? If it's nothing more than the empty rhetoric of the Big Society, Mr Cameron will find himself writing a lot more letters to distraught parents.