The real needs of thousands of disabled children are invisible to UK statutory providers claims Newlife Foundation

Posted on: 11/06/2012 | Categories: General News

From the Front Line: Disabled children’s needs are ‘invisible’

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.”

Commenting on the new paper by Newlife CECOPS CEO, Brian Donnelly, says:

“I very much welcome Newlife’s latest paper, ‘From the Front Line’. A report such as this, although disturbing and in some cases barely believable, is timely in that it provides more than enough evidence to overwhelmingly convince of the severity of problems with equipment provision for disabled children in the UK. It also provides sufficient information and evidence base to enable changes to be made.

In the past a number of critical reviews have paid particular attention to the symptoms (the effects) with very little analysis of the problem (the cause). This is where this paper differs as it gets to the heart of the matter. It has built upon previous papers and taken things into a new dimension. This should help those with commissioning responsibilities within the new structures, in assuming their new roles.

In my view organisations such as Newlife should act as a safety net for the odd occasion when a case falls through the system; instead it appears Newlife, with others, are actually propping the system up. This is not right for a variety of reasons, but perhaps most importantly, by doing this,
statutory bodies are not aware of the level of unmet need; and this is a key theme highlighted throughout the paper. Without knowing what the true need is, services will never be appropriately commissioned or funded.

The sheer number of professionals involved in this excellent review, mean that it simply cannot be ignored or argued against. The paper is a clarion call for action to be taken once and for all; no further reviews are going to highlight the problems in any greater detail; in essence it says all there needs to be said on the matter. This paper is to be commended; it should be welcomed by the government, and everyone involved in children’s equipment services.”

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