Together for Short Lives would like all children under three years old who must always be accompanied by bulky medical equipment and/or need to be near a motor vehicle in case they require treatment for their condition to have access to a specialist vehicle or mobility benefits. This would support 2,781 children and their families to live as fulfilling lives as possible by helping them to access the specially adapted vehicles they need to leave home or hospital. This would enable families to transport their children from hospital to another care setting (for example, home or hospice); to transport their children to medical appointments; and to do the normal day-to-day things that other families can do, like shopping and leisure activities.
Why mobility benefits are important for children with life-limiting and life-threatening conditions
Children with life-limiting and life-threatening conditions often depend on ventilators, large equipment or other types of technology to stay alive. This equipment is big and heavy. Some babies and young children have permanent wheelchairs and are not able to use buggies suitable for well children of the same age. These wheelchairs are heavy because of the equipment and need to be fixed to a vehicle.
These children require specialist, adapted or broad base vehicles for transport which, without financial support, are often beyond the reach of their families. For families of children with life-limiting and life-threatening conditions 64% of mothers and 24% of fathers will need to give up work and this, combined with the extra costs of caring for a seriously ill child means that many families will live in poverty.
Children who depend on life-sustaining equipment must be attached to it at all times. It is extremely difficult to lift children who depend on this equipment in and out of car seats and there is a significant risk that they can be accidentally disconnected. For example, a child with a complex condition who is on high level ventilation must have the following equipment at all times:
- A ventilator which is attached to them.
- A spare ventilator nearby which includes a back-up battery.
- A monitor to measure the child’s oxygen saturation which provides alarms and vital monitoring.
- An oxygen supply and mask in case the child suddenly collapses.
- A tracheotomy emergency bag including spare tubes; this is vital in case one of the tubes in use becomes blocked, a scenario which can have catastrophic consequences for the child.
Disability living allowance (DLA) is available to all families who incur extra costs as a result of meeting the additional care and/or mobility needs of a disabled child. However, children can only receive the higher rate mobility component of DLA from three years of age and the lower rate mobility component from five years of age. This is predicated on the views of medical advisors, who advised DWP that the majority of children could walk at the age of 2½ and so by the age of 3 it was realistically possible in the majority of cases to make an informed decision as to whether an inability to walk was the result of disability.
A freedom of information (FOI) request made of the Department for Transport in March 2017 showed that there are 2,307 children under the age of three who are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment’ who have a blue parking in England. We made similar FOI requests of the Northern Ireland Department for Infrastructure, all Scottish local authorities and the Welsh Government. From these, we found that there are:
- 84 children in this category in Northern Ireland
- 255 in Scotland
- 135 in Wales.
If all were accessing the higher rate mobility component of £59.75, this would be an annual weekly investment of £166,164.75 – or £8,640,567 per year.
What is the UK Government doing to provide mobility benefits to children under the age of three with life-limiting and life-threatening conditions?
We were pleased that in an answer to an oral parliamentary question in the House of Commons on 9 October 2017, former 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.”
In January 2018, the then Work and Pensions Secretary Rt Hon Esther McVey MP confirmed that after direction from her department, Motability would be piloting a scheme to help children under the age of three who are not eligible for the mobility component of child disability living allowance but who rely on bulky medical equipment.
The scheme drew upon on the expertise and discretion of the Family Fund in order to determine which children are eligible. This is controlled by government but is instead assessed by the Family Fund according to the needs of individual children and their families. The 1,800 number is an estimate of the potential number of families that could be supported based on the funding that Motability have provisionally agreed to provide, assuming the pilot is successful. The Department of Work and Pensions state that one of the key aspects of the pilot scheme will be to collect additional data to help officials better understand the extent and needs of this group of children. This will help to assess whether the scheme is well targeted – and hopefully provide valuable insight to help inform future government policy.
We understand that Motability plan to announce an scheme which a wider group of families will be able to access in 2020.
What would Together for Short Lives like to change?
We are delighted that Family Fund and Motability have piloted this scheme, which we believe has helped some babies and young children under the age of three – and their families – access the specialist vehicles they need to leave home or hospital.
Ultimately, we would like these specialist vehicles – or an equivalent mobility payment to those families who do not drive – to be made available to all 2,768 children in the UK under the age of three who depend on bulky medical equipment. We will continue to work closely with DWP, Family Fund and Motability to understand the findings of the pilot – and to encourage them to extend the benefits of the scheme to all children under three years old who must always be accompanied by bulky medical equipment and/or need to be near a motor vehicle in case they require treatment for their condition.