Newlife Foundation for Disabled Children is calling on the Government to drastically review the reasons for failed provision of paediatric equipment in many areas of the UK after figures published by the DWP today show a 20 per cent increase in this sector of the population over the past decade.
Furthermore, Newlife - the UK's largest charity provider of specialist equipment for children with disabilities and terminal illness - claims hundreds of thousands of youngsters have been denied essential equipment because public funding has been calculated on outdated statistics.
The Department of Work and Pensions has revealed today* there are now almost one million children and young people with disabilities in the UK. Newlife is calling for immediate action so funding can be drastically revised to meet the true level of need.
The previous figure of around 0.8million disabled children has been quoted by government for the past decade - the Gov.uk** website still uses this statistic. Today's new DWP figures show that the number has risen dramatically to 958,136; that's an increase of 20 per cent over the past ten years. During that time, Newlife has provided more than £12million of specialist equipment to help bridge the public funding gap.
Newlife CEO Sheila Brown, OBE, said: "We believe that hundreds of thousands of disabled children are invisible to their local statutory services and their families have been fighting to get vital specialist equipment from unrealistically tight budgets. We regularly hear from desperate families who report they are having to wait up to 12 months just to get an assessment of their child's needs. Many families have had to wait months and even years to get essential equipment. There are even cases where it has only been made available after their child's funeral."
The charity will be engaging with MPs to discuss the problem at a Newlife exhibition at the House of Commons from July 11 to 15 (the exhibition space is provided free of charge).
Newlife believes that unless government is fully aware of the real level of need, statutory services across the UK cannot reasonably put adequate budgets in place. The charity will be calling on the government to use this data to re-evaluate its planning and provision at national level and to guide local providers, such as councils and health authorities, to use this information when developing services.
The health and social care sector has known for many years that as healthcare has improved more children are surviving conditions such as cancers, prematurity, accidents and birth defects, but many of these survivors are left with long or short term disabilities. Sheila Brown added: "It's not enough to save lives, we also need to care for the lives that we save. Childhood disability can happen to any family at any time and so making proper provision is a national necessity.
"Charities cannot continue to fill the gap left by shrinking local statutory service budgets. Many are struggling to meet the increased level of need and we expect demand on Newlife to double in the next couple of years unless this new data drives improved support. We will be appealing to government to use the data to properly plan for the future."
The number of urgent applications to Newlife has grown to such an extent that the charity is now ‘fast tracking' 40 per cent of all applications made. This figure may grow further if local statutory services continue to fail to provide essential equipment, even in urgent cases. Sheila added: "Newlife will do all it can to help as many children as possible but we are entirely reliant on donations and income from our own social enterprise business. We fear, as demand on Newlife continues to grow, that more vulnerable children and their families will suffer, unsupported."
* The new data has been released from the Family Resource Survey for 2014/15 as part of a Department of Work and Pensions commissioned report.
A teenage boy in Cornwall, who was virtually housebound for two years, has ‘got his life back' thanks to a new hi-tech wheelchair provided by Newlife.
Jonathon Inkin, aged 18, lives in the rural community of Callington in Cornwall. He has a life-limiting degenerative muscle wasting condition (Duchenne Muscular Dystrophy), has metal rods in his spine and has undergone major hip surgery.
Mum Becky Inkin said: "I don't think Jonathon has ever had an NHS wheelchair that has been comfortable. He had a pressure sore following spinal surgery in December 2012 and could only sit in his old wheelchair for short periods so he spent a lot of time in a recliner chair. Because it was so painful to use, he would only sit in the wheelchair when he needed to go to hospital so he became virtually housebound."
After waiting months only to be told statutory services would not provide the more comfortable £12,800 wheelchair Jonathon needed, his occupational therapist referred the family to Newlife.
Jonathon said: "I am so grateful to Newlife for providing me with my new wheelchair; it has given me my old life back. I can now go anywhere I wish almost pain free. It is amazing!"
Jonathon's new wheelchair has a hi-tech suspension system which means he no longer experiences excruciating jolts of pain as he bumps along his local cobbled and pot-holed streets.
Becky added: "Jonathon is comfortable enough - and confident enough - to use it every day, not just around our house and garden but for walks on the local moorland and trips into the village and to Plymouth.
"In the months since he got the new wheelchair he has been to Cardiff to see the magician Dynamo and to London for a sightseeing weekend. He wouldn't have been able to do any of this with this equipment because he would have been in too much pain. It just shows how much of a difference this wheelchair is making to Jonathon's life."
Pictured: Jonathon in his new wheelchair.
We were really struggling to travel anywhere as Jessica was so uncomfortable and unhappy, but since we got the new car seat she is muchhappier as she is so well supported. Jessica loves car jouneys now and waves to everyone we pass!
The provision of this wheelchair allows him to access all aspects of life, acedemic and social with a degree of independence. He is Acorns Young Ambassador and this wheelchair allows him to be so pro active. All of the Newlife people are working together; the application was so straightforward and much quicker than we expected.
Big thanks for providing my daughter Anna with a new bed. She absolutely loves it and it has made such a difference to her life.