To achieve improved services and knowledge and to be the voice of affected children and families.
Listening and understanding the needs of families, we work with policy makers at the highest levels from Parliament to Town Halls. Ensuring that disabled and terminally ill children and their families are not overlooked, and are treated fairly, and that the impact of their experiences ensures a better future.
Where it’s not what you can’t do that matters, but what you can do, given support, equipment and opportunity.
...IT'S NOT TOO MUCH TO ASK
Most people would assume that disabled and terminally ill children are provided with the essential equipment that they need, but we believe that for 250,000 children this is far from the reality. Every day we hear from families whose children are sleeping on the floor because they don't have a specialist bed to keep them safe, children who cannot go to school because they have been refused the wheelchair they need, children who are in pain and whose conditions are deteriorating because statutory services have run out of funds. We even hear of children dying before their desperately needed equipment reaches them. We believe that disabled and terminally ill children having the right equipment at the right time it not too much to ask.
Click on a campaign heading below to find out more:
Getting the Act Together - Road Traffic Act 1988
Newlife's campaign to change aspects of the Road Traffic Act 1988 which prevent children using the highest-spec wheelchairs
We want to make sure children with disabilities can take advantage of the very best of modern high specification wheelchairs but we are prevented at the moment because of some aspects of the Road Traffic Act 1988. Some of these highly-specialised wheelchairs are not just about making a child mobile: they are systems for living and can help with standing up, personal care and joining in school and social activities with peers. Because of the weight of these wheelchairs, though, they are counted as motor vehicles which requires the user to have a valid driving license, insurance and road tax. We are therefore campaigning for a minor amendment to ROTA 1988 to increase the current 150kg weight limit on these Class 3 wheelchairs and remove the lower age limit of 14 years.
Moving Stories - Disability Living Allowance
Newlife's call on Government to extend the mobility element of Disability Living Allowance to families of seriously disabled and terminally ill under 3's to help meet their travel costs including frequent hospital or clinic visits and transporting essential equipment.
Parents of a child born with a disability or life-limiting condition or whose child becomes disabled during its early years can apply for and receive the care element of Disability Living Allowance while the child is an infant, but they are excluded from the mobility component of the benefit. It is accepted that these children have additional care needs but not additional mobility needs, yet the costs of transporting a disabled child can be huge - such as the cost of specialised car seats from £500 to £2500 or buggies up to £3000, not to mention the costs of frequent travel to medical appointments and hospital car parking. In 2001, the mobility benefit criteria were changed to lower the minimum age from 5 years to 3 but this still excludes a large number of infants. In fact, although very young children with severe mobility problems can apply for this mobility component of DLA from the age of 3, others with less serious conditions but still having mobility problems may have to wait until they are at least 5. So our campaign proposes that the minimum age of 3 years for the Disability Living Allowance Mobility Component should be reduced to 3 months in line with the DLA care criteria to enable the families of children with significantly additional mobility needs to access this benefit.
Are You Sitting Comfortably, and Safely? - Car Seats
Newlife's Campaign to include Car Seats in the list of essential equipment for children with disabilities
By law, all children travelling in cars must have the correct child restraint until they are either 135 cm in height or the age of 12 (whichever they reach first) to ensure their safety. Children with disabilities or life-limiting conditions often need highly specialist car seats which cost many times more than standard seats. Currently, they can get a medical certificate exempting them from using a car seat or seat belt but this essentially makes unsafe travel legal for disabled children. Why should the safety of disabled children be less important than that of their peers? At the moment specialist car seats are viewed as the standard childhood equipment that all parents need to buy and therefore "non-essential" so they are not provided by statutory services. This means that many families are left to pay for specialist car seats themselves (in excess of £1,000 and as much as £3000), apply to a charity for assistance or transport their child unsafely. We want to ensure that children with disabilities and life-limiting illnesses have access to safe and reliable travel regardless of age, disability, postcode or ability to pay and so are campaigning to ensure specialist car seats are recognised by statutory services as essential specialist equipment with funding in place to provide them.
What Does Newlife Think About...?
We constantly scan the news across the country to keep up with the latest developments in services for children with disabilities and life-limiting conditions and their families and national stories of interest and concern.
> Here are our responses to what's in the news:
We were really struggling to travel anywhere as Jessica was so uncomfortable and unhappy, but since we got the new car seat she is much happier as she is so well supported. Jessica loves car journeys now and waves to everyone we pass!
I love going in my sensory room and sometimes I am so relaxed that I fall asleep! My VI teacher has said that my eye sight has improved slightly, so thank you all so much for helping my eye sight improve.