This Christmas, The Mirror is supporting Together Short Lives’ Christmas appeal to help and support the 49,000 children and young people, and their families, across the UK who are unlikely to make it into adulthood.
Christmas is a special time for all children, not least for those children who, tragically, may not have many Christmases ahead of them. Stanley, sadly, is one such child. Stanley is a two-year-old boy from Newton Abbot in Devon with Tay-Sachs disease. Stanley’s family, like many others with life shortening conditions across the UK, do not have the money to secure the specialist vehicle they need to transport him in a wheelchair along with the life support equipment he depends on.
If Stanley was over the age of three, things would be better, he would be able to benefit from the mobility component of the Disability Living Allowance. This, £57.45 per week, would allow his family to have access to a specially adapted vehicle. Currently, this benefit is only available to children over three. This is because the Government has decided that children under four are parent dependent for travel. But clearly children like Stanley are dependent not only on their parents, but a wheel chair and other life support equipment.
The principle underpinning Disability Living Allowance is that payments are made to families who incur extra costs as a result of meeting the additional care and/or mobility needs of a disabled child. Babies and young children under the age of three who depend on big and heavy life-sustaining equipment to stay alive should be regarded as having an additional mobility need.
The PM has in her gift to cut the red tape and make a lasting difference to these families – but they need help today – tomorrow may be too late.
Barbara Gelb OBE, CEO for Together for Short Lives
The Mirror is backing Together for Short Lives’ campaign to press the Government to change the law so that children under the age of three who depend upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment, can access the mobility component or a similar funding mechanism. This would benefit around 1,500 children in England – spending would be offset by savings in the NHS: paediatric hospital beds would be freed-up as families would be able to transport their children to other care settings, such as their home or a children’s hospice.
Speaking to the Sunday Mirror today Barbara Gelb OBE, CEO for Together for Short Lives said:
“Hearing the news that your baby has a serious health condition and will have a short life is heart-breaking. Families need all the help they can get. Many mums and dads give up work so they can give their child the 24/7 care they need and make the most of their time together – no matter how short. It often leaves families facing crippling debt on top of everything else.
That’s why it’s so devastating to hear families say that as well as coping with the unimaginable they fail to get the basic financial help they need – all because of red tape and government bureaucracy that discriminates against them.
It’s shocking that seriously ill babies and very young children under 3 years old who may not have long to live are denied the same financial support as older children.
These families are barred from claiming the mobility component of the disability living allowance that would allow them to have access to a specially adapted vehicle and take their child to vital medical appointments, go from A to B and just live a quality of family life in the short time they have together. It’s a nightmare for families already on the brink of emotional and financial crises.
People drafting policy probably have no idea of what life is really like for these families, let alone imagine the mountain of lifeline equipment, medicines and machinery that families need to carry around with them to keep their baby alive. A normal family car just won’t do – and without the cash to make the necessary adaptations it means that families simply can’t leave the house or hospital.
The PM has in her gift to cut the red tape and make a lasting difference to these families – but they need help today – tomorrow may be too late.”
You can read our full briefing on the DLA mobility component here. (LINK HERE TO INFLUENCING POLICY)
For further information contact: Shaun Walsh, Director of External Relations, Together for Short Lives (07506 211 765 | shaun.walsh@togetherforshortlives.org.uk)
