Listening to the needs of families, we work with national and local decision makers, have changed the law to benefit 1.2 million wheelchair users, hosted a week long exhibition in Parliament and ensure that children get the right equipment at the right time from statutory services. Our aim – to ensure that disabled children get the better future they deserve.
Most people would assume that disabled and terminally ill children are provided with the essential equipment that they need, but we believe that for 1 in 3 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:
The law in question is the ‘Use of Invalid Carriages’ section of the Road Traffic Act 1988. Until March 9 2015, disabled children and adults were not allowed by law to use wheelchairs over 150kgs in weight as they were classed as cars!
In effect, this restricted anyone who didn’t hold a driving licence from having the most modern, hi-tech wheelchair. Children with the highest levels of need were refused life-changing wheelchairs due to an antiquated law. As technology has advanced, so have wheelchairs and some now have a ‘sit to stand’ facility which not only has health benefits – to muscle tone, circulation, kidney and bladder function – but enables children and young people to socialise and be more independent. These wheelchairs help transform and extend lives and are used by those in most need. However, additional functions result in additional weight – and many of these wheelchairs are closer to 200kg. We met with the Department for Transport every six months over five years. The law had been in place for 25 years and any change can be a long process. Our dedicated campaign team, led by Newlife’s Clare Dangerfield together with local MP Aidan Burley, had frequent telephone conversations; we knew the government was committed to helping us resolve the problem; there was a ‘can do’ attitude towards positive change. We were asked to help rewrite the relevant part of the act and before long we received a call from the then Secretary of State for Transport Patrick McLoughlin giving us his support. Soon after, we got the good news that our campaign had been successful. This means a potential 70,000 additional children and young people now qualify for a hi-tech wheelchair. On the day of the change, DfT Minister Baroness Kramer presented the first of Newlife’s 150kg-plus wheelchairs.
Newlife's call on Government to extend the mobility element of Disability Living Allowance to families of terminally ill under three'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 terminally ill 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 higher rate mobility component criteria was changed to lower the minimum age from five years to three but this still excludes a large number of infants. So our campaign proposes that for terminally ill children the minimum age of three years for the Disability Living Allowance Mobility Component should be reduced under special rules to three months in line with the DLA care component to enable the families of children with significantly additional mobility needs to access this benefit.
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. Disabled and terminally ill children often need highly specialist car seats which cost many times more than standard seats. Currently, families 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 disabled and terminally ill children 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.
Words cannot express how life changing the safespace has been for Megan and all the family. Megan has slept all night everynight since having the safespace. Megan feels secure and enjoys being in her own space. Parents no longer have to get up several times each night to check on Megan, so are no longer deprived of sleep enabling them to cope much better during the daytime.
Lewis clearly finds the safespace calming and settled much more quickly at night, he has only had one sleepless night, but it was a noise free one as the safespace prevented him striking the walls and softened his vocalisations. We are deeply humbled by the generosity of Newlife.
We write to express our sincere thanks and appreciation for the funding you recently provided for our son Oliver. This walker is already proving invaluable, not only in developing his strength and stamina, but also as a means for exploring in a way he has never been able to before.