Only 4% of parents with disabled children say they receive the right support to care for them safely

Disabled children and their families are missing out on vital care and support as a result of government cuts, the Disabled Children’s Partnership (DCP) has found. This is harming children and families’ physical and mental health, breaking parental relationships and causing children to needlessly miss out on school or college. Families of disabled children, backed by the DCP, demand the government gives back £434 million owed to them in social care, support and provision. DCP’s survey of 3,424 families with disabled children, carried out during April found:

• only (4%) of parent carers feel they get the right support to safely care for their disabled children
• more than half (54%) of parent carers have been treated by a GP for depression, anxiety or stress (including suicidal thoughts)
• 53% of parent carers have been forced to give up a paid job to care for their disabled child
• 40% of parent carers have experienced relationship breakdown with a partner since diagnosis. 64% of those say a lack of support had a major impact on the breakdown of a relationship
• more than a third (37%) of parent carers say their disabled child has missed school or college because the staff or services are not available to support them
• a third (33%) of parent carers say their disabled child has been in unnecessary extra pain because the right equipment, doctor or health service hasn’t been available.

DCP’s findings are further evidence of the devastating impact that the £434 million hole in local government social care spending for disabled children is having on vulnerable families. This is laid out in a letter to Chancellor from the family of Oliver Lewis, seven, from Southampton. Oliver has an ultra-rare genetic disorder which means any muscle in his body, from his arms to his heart, can become paralysed for anything between minutes to weeks. Mum, Vickey Lewis, writes: ‘Ollie needs constant supervision and can never be left alone. He can stop breathing at any time, day or night. We put him to bed and pray that tonight won’t be the night that he stops breathing and doesn’t start again. ‘Ollie used to be able to walk and eat orally, but now he uses a wheelchair and gets virtually all of his nutrition through his feeding tube. ‘Like so many others, we get no support to help us care for Ollie. ‘Support would mean that we can simply be mum and dad to Ollie and Lisi rather than having to constantly think about what medications are needed or when the next feed is due or when he last had a wee. In the holidays it would mean that Lisi can play and have her childhood back. ‘And after seven years, Adrian and I would not have to choose between sleep or our child surviving. It would reduce the risk of Adrian and I becoming yet another statistic among the thousands of families with a disabled child that break down. We would know Ollie will be safe and could give Ollie and Lisi the best possible life experiences. ‘I know that our story is not unique that’s why we’re asking the Chancellor to give back the funding rightfully owed to our family and thousands of others like us.” The DCP, a coalition of more than 60 leading disabled children’s charities, is calling on the public to sign Vickey’s letter too which asks for funding to be returned and for disabled children to be seen as a priority for the government. The DCP wants to see the most vulnerable children in England at the heart of the government’s next Spending Review.

Disabled children are legally entitled to home support, access to equipment and a quality of life. But local authority cutbacks mean they are missing essential services or enduring poor quality support, with the result that children’s health is further deteriorating because of a shortage of equipment, some children are unable to attend school because support is not there, parents are unable to work, families are breaking down and parents’ mental health is suffering. Amanda Batten, Chair of the Disabled Children’s Partnership, says: “Services for disabled children have never been perfect. But cuts to budgets combined with a 33% increase in the number of disabled children over the last decade means we have reached a critical point – one where we need to decide what kind of country we want to be. We’re talking about some of the most vulnerable children in society.
“And that’s why we’ve launched our Give It Back campaign today, calling on the Chancellor to give back the £434 million missing from vital services that help families care safely for their disabled child. This isn’t just about doing the right thing, there is also an economic case here too. Without putting back funding into disabled children’s services, we can guarantee that the taxpayer will be faced with a bigger bill in the long-term. That’s because when families break down, expensive crisis interventions are needed from local councils or the NHS. Join us today in calling on the government to Give it Back.” A powerful short film will be released on social media on 3 June giving voice to parents’ everyday concerns and asking the government to #GiveItBack.