Parents of seriously ill babies make enormous sacrifices – but being able to leave the house as a family shouldn’t be one of them.
Tomorrow, members of the House of Lords (or ‘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.
It sounds so simple as to be almost ridiculous. But the fact is that for some of the families of the 1,500 babies and young children in England alone who depend on large, heavy ventilators and other equipment just to stay alive, going anywhere beyond walking distance is impossible. These families need specially adapted, broad-base cars which have space for (and can take the weight of) the vital equipment and special buggies which their babies need. These vehicles exist – however, they are very expensive and are often beyond the means of these families.
The government recognises that some disabled people (both children and adults) need financial help to meet their mobility needs. For children up to the age of 16, the mobility component provides up to £57.45 per week. However, children under the age of three are barred from this benefit. This is because the Department of Work and Pensions deems that the majority of children can walk at the age of 2½ – and that by the age of three it is realistically possible in a majority of cases to make an informed decision as to whether a child’s inability to walk is the result of disability.
Yet ability to walk is an irrelevance to babies and young children who depend on ventilators. Many do not live long enough to pass the age threshold 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 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 don’t believe that the government has purposefully set out to stop seriously ill babies and young children from being able to access the financial support they need to afford appropriate transport. Indeed, ministers have already amended regulations to give this group of children access to blue parking badges. Baroness Sherlock and Lord McKenzie’s amendment (62B*) to the Welfare Reform and Work Bill would bring about the legal change needed to remove this anomaly in the welfare system. I urge ministers to accept it and peers to support it. By doing so, they can help families with little time together to make precious memories by doing some of the simplest things which we all take for granted.
Barbara Gelb OBE is Chief Executive Officer of Together for Short Lives and has spent her career working to improve care services for children. Click here to access our briefing for peers, which sets out our position on this issue in more detail.