New report shows disabled children's needs are 'invisible'

Newlife Foundation for Disabled Children is a Staffordshire-based national children’s disability charity with a firm foothold in Birmingham, where it supports families through a range of services including equipment grants for specialist aids.

Newlife is marking its 21st birthday this year (2012) with the publication of a shocking and thought-provoking report – From The Front Line – focusing on the issues of provision of specialist equipment by statutory services.

The charity says its survey of health professionals who have supported families’ applications to Newlife’s Equipment Grant Scheme reveals that the real needs of thousands of disabled and terminally ill children are “invisible” to UK statutory providers.

The report – based on the submissions of more than 4,300 professionals – exposes a catalogue of failures in the provision of essential equipment for disabled children. It finds that 77 per cent of those professionals – including physiotherapists and occupational therapists – had not approached local statutory services first because they realised there was no point. Dedicated professionals chose not to waste time in the heavily bureaucratic systems of statutory services and instead backed applications to charities such as Newlife.

The Royal College of Nursing commented that the current broken system of statutory equipment provision was a ‘national disgrace’ and that they ‘hoped the recommendations in this report are implemented without delay’.

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.”  

Newlife claims the fact that charities have to bail out the 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.

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.  

Newlife has spent more than £7million nationally in providing essential specialist equipment; of this, £235,595 has specifically been spent helping 211 children in Birmingham.

Download the report