Invest More in Social Care Support for Disabled Children: A Mother’s Open Letter to the Chancellor

with Stephen Kingdom, Campaign Manager for the Disabled Children's Partnership

The Disabled Children’s Partnership (DCP) is asking the public to add their names to a letter from parent carer and campaigner, Maureen Muteesa, to the Chancellor, calling for more investment in social care support for disabled children and their families.

Stephen Kingdom, campaign manager for the DCP, explains a little more about it:

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What is the DCP?

The Disabled Children’s Partnership (DCP) is a coalition of more than 90 organisations – including Special Needs Jungle – that campaigns for better health and social care for disabled children and their families.  We are calling on government to make supporting disabled children and their families a cross-government priority; to review and reform how the health and social care system works; and to invest in more services.

What is the DCP campaigning to change?

Over the last year and a half, DCP research has exposed the devastating impact of the pandemic on disabled children and their families.  Families have been left isolated and abandoned, and children have seen their health deteriorate, as vital support, health care and therapies have been reduced or stopped altogether.  And many families are still waiting for this support to return.

But, of course, what the pandemic has really done is expose once again the pre-existing failures in the system to meet the health and social care needs of disabled children and their families.  DCP research from 2018 exposed a £434 million funding gap for social care for disabled children.  We are currently working to update that figure – but post-pandemic it is sadly difficult to believe it has done anything but grow.

Maureen’s story

This autumn, the government will undertake its Comprehensive Spending Review (CSR). This will set the public spending levels for the next three years.

Parent carer, Maureen Muteesa, is mother to Belinda, 22, and Calvin, 15. Calvin was born with complex medical needs relating to vacterl syndrome.

Maureen has written an open letter to the Chancellor calling on him to use the CSR to fill the shortfall in funding for social care for disabled children.

We are asking the public to add their names to Maureen’s letter.

Calvin has a repaired heart which has been operated on at least three times, he’s had a full bowel reconstruction, he has serious renal problems, and he feeds through a tube – just to name a few.

In her letter, she explains how the pandemic has left her tortured, isolated, depressed and abandoned. Delays to vital physiotherapy have caused Calvin’s muscles to deteriorate, leaving him unable to walk and facing an operation.

But Maureen also explains how this is nothing new, and how she has had to fight constantly for the support she needs, and how it is never enough.

Please add your voice to Maureen’s and sign her letter.

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Renata Blower
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