Thirteen year old Chris is leading the way on behalf of disabled children across the UK, calling on national and local government to ‘Count me in' when it comes to providing vital services such as equipment.
Newlife has recently highlighted that new data published by a government department shows that there are now close to 1 million disabled children in the UK, believed to be the highest since records began. This figure is a significant increase on 770,000 which government departments have used as a figure for the number of disabled children in the UK for many years and means that 1 in 14 children in the UK are likely to have a disability.
The leading children's disability charity are concerned that the data will be ‘buried' and not be used to inform planning and budgeting which will further damage services to these children. Newlife vows to write to all MP's and leaders of local statutory service providers about this vital issue.
Writing to all, the charity will petition them to accept the new figures, nationally and locally using them to better aid planning in services, particularly the provision of disability related equipment.
Newlife's CEO, Mrs Sheila Brown OBE, says: "Children across the UK are going without the vital equipment they need, to reduce their pain, give them independence and prevent conditions worsening. Not even terminally ill children in some areas, can get equipment quickly. This is in most part we believe, because old data is being used, causing poor budget planning. If you don't know the size of the real need, how can you plan services?"
She added: "Every day Newlife is having to find the funds to rescue children in dire straits, often when the local statutory health and other services have said ‘No'. Newlife has around 500 children across the UK who are in need right now. Around £600,000 is needed to help them, funds we just don't have."
Nationally and locally we have to ‘count in' all disabled children or they will continue to suffer and be deprived of the help they need, becoming a ‘forgotten generation', deprived of things like wheelchairs, special beds, walking frames, communication aids and much more.
Newlife is the UK's largest charity provider of special equipment to disabled and terminally ill children and has seen applications for vital equipment almost treble in the last five years. The charity reports that recently as many as 25 applications a day have been delivered, all desperate for help.
Newlife believes, successive governments over many years, have used the outdated figure of 770,000 children. Newlife and many front line professionals have known that the numbers have increased, as we now save more young lives thanks to advances in; the care of premature babies, cancer care, management of diseases and infections etc, but many of these children will go on to have a short or long term disability.
Letters to all main party leaders, MP's, Leader of Councils and Clinical Commissioning Groups (CCG's) will be sent by Newlife, calling on them to answer the call of 13 year old Chris from Lancashire who says ‘Count Me In'. He says: "Don't forget me and children and young people like me, give me the right equipment at the right time and I will show you what I can do."
How was the 0.9 million children with disabilities figure calculated?
The data was calculated thanks in part to a statistic provided by the Family Resource Survey which is a major annual study sponsored by the Department for Work and Pensions. This report summarises the results for the 2013/14 survey year where 33,797 households were contacted with data provided by 20,000 households who co-operated to complete the survey.
In the executive summary, page 3 and in chapter 4, the data in the report shows that 7% of the total child population has a disability.
The second important figure needed was the population of under 18's in the UK in 2014, available on the below ONS site.
Newlife is able to demonstrate that there is around 1 million children in the UK with disabilities by adding up the population figures for under 18's from the ONS site. We were able to deduce that in 2014 the population of children and young people was just under 13.7 million, of which 7% of this figure is 958,000, close to 1 million.