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:
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.
Also read:
- 15,000 disabled learners with EHCPs but no provision: The EHCP figures for 2021
- Dame Christine: I’d like to set the record straight
- £1.5 billion funding gap for disabled children’s services in the UK
- Survey: Parents have lost confidence in their disabled children’s health and social care services
Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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