Together for Short Lives response

Question 1

Executive summary

Accepted Answer

Together for Short Lives is the UK charity for children’s palliative care. We are here to support and empower families caring for seriously ill children, and to build a strong and sustainable children’s palliative care sector – so that no family is left behind.
We support all the children’s palliative care professionals and services that deliver lifeline care. We have over 1,000 members, including children hospices, other voluntary sector organisations and statutory service providers. By working together, we provide a strong and unified voice for the sector, and help services deliver the best quality care and support tailored to each family’s needs.
Our submission focuses on the access that babies and young children with life-limiting conditions under the age of three have to mobility support. We answer question 5 ‘For people who are not eligible, because they do not get the enhanced rate, is there a demand for opening up access to the Motability scheme?’
In our submission we acknowledge that children of any age who depend on life-sustaining equipment must be attached to it at all times. This equipment can be heavy and bulky and require a significantly modified vehicle to make travel possible.
Together for Short Lives is calling on the Department for Work and Pensions and Motability to extend the higher mobility rate or disability living allowance (DLA) to children under three years.

Question 2

Together for Short Lives’ response to question 5

Accepted Answer

1. Children with life-limiting and life-threatening conditions often 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.

2. 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 the Department for Work and Pensions that the majority of children could walk at the age of 2½ and so by the age of three 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^{[footnote 1]}.

3. However, babies and young children with life-limiting and life-threatening conditions under the age of three 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.

4. 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.

5. 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.

6. Whatever the age of the child, this equipment can be absolutely vital to their health and wellbeing. It is crucial that children under the age of three, and their families, are given access to this support in the same way as those over three years.

7. 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 badge in England. We believe mobility support should be provided to under-threes.

8. If all were given a benefit equal to the higher rate of the DLA mobility component (worth £59.75 per week), this would mean the government investing £166,164.75 per week - or £8,640,567 per year.

9. In January 2018, the Work and Pensions Secretary Rt Hon Esther McVey MP confirmed that after direction from her department^{[footnote 2]}, Motability would pilot 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.

10. We were encouraged to learn that this pilot was successful and that plans would be made to extend the scheme. On 1 July 2019, Lord Sterling, Chairman of Motability, said:

This successful pilot has enhanced the lives of many families, enabling them to take their child to vital appointments, often transporting essential bulky equipment and mobility aids.

Motability has committed to take over funding to continue and accelerate this support. This will help many more families, providing life-changing mobility for those with severely disabled children with significant mobility needs.^{[footnote 3]}

11. However, despite this commitment, no further details of how and when the scheme will be implemented – and who will be eligible for it – have been made available.

Question 3

Recommendations

Accepted Answer

12. We ask that the advisory committee recommends that the government makes sure that specialist vehicles – or an equivalent mobility payment to those families who do not drive – are made available to all 2,768 children in the UK 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.

Together for Short Lives response

Executive summary