Families of disabled children call on Government to #GiveItBack

In 2019, the Disabled Children’s Partnership (DCP) and The Sun joined forces to launch a powerful new campaign – Give It Back. 

Disabled children and their families are missing out on vital care and support as a result of government cuts, the 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.

Vickey – mum to Oliver who has an ultra-rare genetic condition – wrote an open letter to the then Chancellor, calling on him to use the expected Comprehensive Spending Review (CSR) to invest in support for disabled children and their families.  More than 21,000 people added their names to Vickey’s letter; and in October 2019 Vickey and Ollie travelled to London to deliver the letter to the Chancellor in Downing Street.

Sadly, the expected CSR did not happen in 2019.  Because of coronavirus, it didn’t happen in 2020 either.  And so the massive funding gap in support for disabled children remains unfilled – a situation that has only been made worse by the pandemic.  That is why, in July 2021, we joined with The Sun again to relaunch Give It Back.

Read on for more about our original Give It Back campaign.

Our research

In 2018, the DCP published research which revealed a £434 million funding gap for social care for disabled children and their families. The DCP asked parents how this lack of support affecting their lives.

More than 3,400 parents completed a survey which asked about their experiences of navigating health and care services. The shocking results reveal the full impact that inadequate and insufficient services have on families with disabled children:

  • 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.

Oliver’s story

These 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 the 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.

His Mum, Vickey, 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.

“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.”

What we are calling for

The DCP wants to see the most vulnerable children in England at the heart of the government’s next Spending Review in the autumn.

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 partnered with The Sun to launch our Give It Back campaign, calling on the Chancellor to give back the £434 million missing from vital services that help families care safely for their disabled child.

“The pandemic has exposed how inadequate the landscape of support services are for disabled children and families, making it even more important that the government invests not only to help children heal, but to guarantee them a healthy future.

“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 tax payer 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.”

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