During a debate in the House of Lords Monday 14 December, Lord Freud (Minister for Work and Pensions) invited Together for Short Lives to meet with him to discuss our call for seriously ill babies and young children to be given access to a key welfare benefit.
The offer came as peers considered an amendment to the Welfare Reform and Work Bill from Labour work and pensions spokesperson Baroness Sherlock. This would have given children under the age of three who depend on bulky medical equipment – including ventilators – access to the higher rate disability living allowance (DLA) mobility component worth £57.45 a week. It would have also supported families of young children who need to be near a car in case they need emergency medical treatment.
Despite the minster expressing his empathy for what the amendment intended to achieve – and acknowledging the bulky and heavy equipment that families have to deal with – he said that the government did not support it. This was on the basis that it would add to what is already a significant extra welfare bill and would further damage the government’s capacity to stay within the welfare cap.
He said that the technologies which seriously ill children rely on are improving all the time and in some instances equipment is becoming lighter, smaller or in other ways more transportable. He also said that there already exists a range of benefits, financial and in kind, which can help support such children and their parents – such as the care component of DLA, disability premiums in the income-related benefits or tax credits.
On the issue of children who need to be near a vehicle for treatment or where a vehicle is used to transport them for such treatment, the minister said that this would only help those parents who already have use of a motor vehicle or who would gain access to one through the higher-rate mobility component of DLA. He said that this would exclude families without access to a vehicle. He also doubted whether it would be reasonable or practical for parent to transport seriously ill children in an emergency, stating that emergency services are much better equipped to deal with such situations.
Together for Short Lives welcomed Baroness Sherlock’s amendment – you can read more about our support in our statement and in the blog post at the bottom of the page from our chief executive Barbara Gelb OBE. While we will study Lord Freud’s response in detail, we are disappointed that the government has not accepted the amendment. There is a significant financial impact on families who care for a babies and young children with life-limiting conditions: the benefits they currently have access to are not enough to enable many to afford the specialist transport they need. This 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.
However, we are grateful to the minister for offering to meet with us and we look forward to taking him up on the offer at the earliest opportunity.