The real needs of thousands of disabled children are invisible to UK statutory providers.
Newlife Foundation for Disabled Children has exposed a catalogue of failures in the provision of essential equipment for disabled and terminally ill children. The report, published this week, is based on the submissions of more than 4,300 professionals.
‘From The Front Line’ records responses of professionals who have supported applications to Newlife’s Equipment Grant Scheme, which provides pain-relieving beds, wheelchairs, safety seating, communication and therapy aids for children.
Newlife found that 77 per cent of those professionals – including physiotherapists and occupational therapists – had not approached local statutory services first. The charity believes professionals are doing what is best for children and so they do not turn to local services first because they believed there was no point.
Newlife is calling on government, local authorities and health providers to ensure unmet need for equipment is better measured in the future.
Newlife’s CEO Mrs Sheila Brown, OBE, says: “We have to start getting this right. Too many children are being failed, their needs are as good as invisible, and charities with limited budgets like Newlife are being left to pick up the pieces. We applaud the front line professionals who in many areas report a daily battle with local commissioners in their aim to help disabled and terminally ill children. We believe they are acting in the best interests of the child by supporting applications to charities who can deliver, because in many areas state provision is failing or is so restricted in its policies that it is rendered ineffectual.
“We believe that some statutory service providers could learn from Third Sector provision and policies and should work in closer partnership with charities in future.”
Parents of disabled children are telling the same story. Moira Horrocks, from Fife, is mum to three-year-old Ritchie who has short-limbed dwarfism. She resorted to salvaging discarded equipment from her local child development centre after statutory services claimed Ritchie had ‘no assessed needs’ and therefore was not entitled to any equipment. She said: “How can anyone say he has no assessed needs when he is almost four years old and cannot sit up? We turned to Newlife because, without an assessment, we won’t get any equipment. Most of the equipment we have got was being thrown out of the local child development centre until I said ‘Please don’t – we’ll have it’.”
Newlife believes the fact that charities have to ‘bail out’ statutory system by providing equipment means that the needs of children are effectively rendered invisible. The reasoning is that if no funding is assigned and need is never catalogued, subsequent budgets are set too low to make proper provision, leading to a year on year spiral of failure.
While compiling ‘From the Frontline’ Newlife heard from professionals who had been directed to downgrade their clinical assessments in order that inferior and cheaper equipment could be provided – even if it didn’t meet a child’s needs or left them in pain or danger.
Newlife wants every child’s needs to be formally reported and for proper budgets to be set to meet the needs of children in relieving pain, enabling activity, providing therapeutic benefit, ensuring safety and preventing worsening conditions.
The scope of the report is UK-wide and is believed to be the largest sample of front line professionals on this issue. ‘From The Front Line’ also offers a ‘Stop and Go’ route map tackling many of these issues.
Newlife has spent more than £7million providing essential specialist equipment and there are many other charities which also make funds available. In addition, Newlife has helped many families successfully challenge unfair local decisions when refused equipment.
Newlife has to raise around £2million pounds in the year ahead to provide vital equipment grants and loans. See www.newlifecharity.co.uk for updated equipment needs by county.
Newlife is currently trying to get a £7,700 specialist bed for five-year-old Cornwall girl Charlina Haydney. Charlina’s brain is underdeveloped due to a diagnosis of Cerebellum Hypoplasia with CASK/RELN and she has to be constantly supervised as she has no awareness of danger. Statutory Services told her parents they could not help and the little girl has been sharing a bed with her parents after dangerously falling from her own bed four months ago.
Charlina lives with her parents Martyn and Josephine Haydney. Mrs Haydney is her full-time carer and feels the current situation is affecting family life. She said: “Charlina’s bed is no longer suitable as she woke up in the middle of the night and fell out of it in a dangerous way. Statutory Services will not fund a new bed and we had no choice but to let her sleep in our bed which has been going on for three months.”
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