Major UK children’s charity, Together for Short Lives, has lent its support to peers’ bid to change the law to give seriously ill babies and young children access to a vital benefit which would help them leave their home or hospital bed.
On 9 December, the House of Lords will debate an amendment to the Welfare Reform and Work Bill to give families of babies and young children who depend on bulky medical equipment access to the mobility component of the disability living allowance (DLA). Many of these families are currently unable to afford the specially adapted vehicles they need to transport their children and their big and heavy buggies and equipment – meaning that these children are effectively spending their last days unnecessarily trapped in hospital or at home.
Under current government rules, only children over the age of three can access the most generous form of mobility support (the ‘higher rate’) worth £57.45 a week. This is because ministers do not believe that it is possible to tell whether children under the age of three are unable to walk as a result of a disability.
The amendment – tabled by Labour work and pensions spokespeople Baroness Sherlock and Lord McKenzie – would benefit the 1,500 babies and young children in England alone who need to be attached to ventilators and other vital equipment. Transport ministers have already recognised these families’ special mobility needs and have extended the eligibility criteria for blue parking badges to them.
Barbara Gelb OBE, chief executive of Together for Short Lives said:
“Peers have an opportunity to give an amazing Christmas gift to families of babies and young children who are likely to have short lives – the precious gift of being able to show their child what life is like outside of their own home or hospital bed.
“Many babies and young children who depend on ventilators do not live long enough to pass the age threshold for the DLA set down by ministers. In the meantime, their pressing mobility needs go unmet. This means that things that even some families of older children with life-limiting conditions can do – such as going shopping or visiting family – are often beyond reach. It also means that babies and young children are being trapped in hospital beds unnecessarily because they cannot be transported home – an awful, inhumane situation for their families and a clear waste of taxpayers’ money.
“I recognise the difficult financial circumstances in which the government has to operate. However, rectifying this anomaly would cost just £4½ million per year. I cannot believe it was the intention of ministers to wilfully bar babies with short lives from this benefit and I hope that this amendment allows the government to address this oversight.”
Read our briefing for peers