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A big step towards lifting the baby benefit bar

News and comment

UK children’s palliative care charity Together for Short Lives has welcomed an important government announcement which could mark the beginning of the end for the baby benefit bar.

As the law stands, seriously ill babies and young children under the age of three who depend on bulky medical equipment and who need specialist vehicles to make the simplest of journeys are denied mobility support from the government. This is despite these children’s needs already being recognised by ministers through the blue badge parking scheme. Adapting a vehicle is a costly process, and some families simply can’t afford to buy one. This needlessly traps them at home or in a hospital bed and prevents them from doing things that other families take for granted.

Together for Short Lives has been leading a three-year campaign involving families and parliamentarians from all parties to overturn what we think is an unintended but nonetheless cruel anomaly in the benefits system.

In an answer to an oral parliamentary question in the House of Commons on 9 October from Martyn Day (SNP MP for Linlithgow and East Falkirk), Work and Pensions Minister Penny Mordaunt MP said:

“The hon. Gentleman will know that in spring we announced changes to Motability to enable people to keep their cars pending appeal. We are looking to make changes to Motability, and I am pleased to say that many in this House have supported the campaign led by Together for Short Lives to extend the Motability scheme to under-threes. We have been in discussions with Motability and the Family Fund about extending Motability to under-threes. Individual constituents will not need to apply; they will be referred by the Family Fund. This is a big step forward in enabling families with small children who have heavy equipment to socialise and go out together.”

You can read the question and the minister’s answer on the Parliament website.  

The reform will help transform the lives of families like Osian Liddell from Penarth. Osian has Aicardi-Goutieres Syndrome type 1, a complex health condition which had led to an extensive list of medical problems. Osian weighs 15kg and needs 30kg of equipment with him at all times, which is too heavy and bulky to fit in a regular family car. His parents need access to a larger specially adapted vehicle. While they have been able to buy one thanks to financial help from others, it means that they now only have one family car, leaving Osian’s father with no vehicle to get to work with. This forces him to leave the house earlier to catch public transport, leaving him unable to help care for Osian in the mornings and evenings and unable to get home quickly if there is an emergency.

Data obtained from UK government departments and local authorities following a freedom of information (FOI) request by Together for Short Lives shows that there are 2,781 children under the age of three like Osian who are unable to access vital mobility support. Awarding the higher rate mobility component to these children would cost the government just over £8.3million per year. That’s just 28p for every UK taxpayer.

Following today’s announcement, Together for Short Lives chief executive Barbara Gelb OBE said:

“Yesterday’s announcement marks another important step in Together for Short Lives’ three-year campaign to end the deeply unfair baby benefit bar. It provides hope for families who are unable to make even the simplest of journeys together which the rest of us take for granted. I thank Penny Mordaunt, her officials, Parliamentarians, colleagues in the media and others who have fought hard to get us to this point.

“It is important that details of how the scheme will operate are now clarified as soon as possible. I look forward to continuing to work with the government, Motability and the Family Fund to help finalise this vital reform so that it becomes a reality for these hard-pressed families who so badly need this extra support.”

Find out how you can support Together for Short Lives’ campaigns to transform the lives of children with life-limiting conditions and their families here.

Leave a comment


  1. Have we got any further on babies under two having access to the mobility scheme? I have a family that are really struggling at present.

    27 September, 2018
    Lynette Thacker
  2. Hi Lynette, unfortunately we have no news on this yet. Family Fund and Motability are continuing to pilot a scheme to provide mobility support to families of children under the age of three who rely on bulky medical equipment. We understand that this is frustrating for families and we very much hope that a scheme will be funded in the long-term. We will share any news we get on this as soon as we can.

    27 September, 2018
    Emma Dixon