Disability Living Allowance: mobility component

Together for Short Lives would like the government to reform the eligibility criteria of Disability Living Allowance so that it supports 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. This would bring the mobility component eligibility criteria in line with the criteria for Blue Badges for parking and would therefore support 2,781 children and their families to live as fulfilling lives as possible.

 This page sets out:

  • Why babies and young children who depend on life-sustaining equipment need financial support to access specialist, adapted or broad base vehicles for transport
  • Our proposed reform of the Disability Living Allowance mobility component
  • Impact of this reform on public spending
  • Case studies – real family experiences

Why babies and young children who depend on life-sustaining equipment need financial support to access specialist, adapted or broad base vehicles for transport

Children under the age of three with life-shortening 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.

They 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-shortening 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 [1].

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. 

Seating for babies or young children with life-shortening conditions in un-adapted vehicles can also be unsuitable; they may have special postural needs and many children are dependent on a wheelchair.

Public transport is also unsuitable for these children. Many public transport operators will not carry oxygen and their adapted wheelchairs are too hard to fold and put in. Given their child’s vulnerability to infection, no parent carer would, or could take their child on a bus.

The transport issues which have the biggest impact are: the ability to transport children from hospital to another care setting (for example, home or hospice); the ability to transport children to medical appointments; the ability that families have to do normal day-to-day things like shopping and leisure activities.

The disability living allowance (DLA) mobility component

The principle underpinning disability living allowance (DLA) is that payments are made to families who incur extra costs as a result of meeting the additional care and/or mobility needs of a disabled child.

Currently, however, children can 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 [2].

For the reasons we set out in the sections above, babies and young children under the age of three who depend on big and heavy life-sustaining equipment to stay alive should be regarded as having an additional mobility need. Where they are able to, their families are incurring extra costs in accessing the specialist transport their child needs. The size, weight and importance of this life-sustaining equipment is over and above that which is, for example, needed when transporting a disabled baby or young child with less complex needs.

These additional mobility needs are already recognised in other areas of government policy: children under the age of three who depend upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment are eligible for a blue parking badge[3].

Giving this group of children access to the mobility component would enable their families to access an adapted car. Using a blue badge, families could park their car close by, meaning that they could get their child to a place of safety and care quickly and without delay in an emergency.

We urge government to extend the mobility component to the small population of 2,781 children in the UK under the age of three who depend on bulky medical equipment.

Impact of this reform on public spending

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 £58, this would be an annual weekly investment of £161,258 - or £8,387,496 per year. There are 30.1million individuals who pay income tax in the UK; on that basis, we estimate that ending the baby benefit bar would cost each UK taxpayer 28p per year.

The spending would be offset by savings in the NHS: paediatric hospital beds would be freed-up as families were able to transport their children to other care settings, such as their home or a children’s hospice.

Real family experience

Case study 1:

When my son had been home for about 6 months our car died on the M62. We were stuck at services with vent running out of battery. We rang ambulance service who would only have been able to take my son to nearest hospital not back to Leeds even though there was only about 5 miles’ difference. Couldn't do this as there would have been no way of getting him home from there and one of us would still have had to go with car back to Leeds. So my son and all his equipment plus us were loaded into breakdown truck with battery alarming and the poor guy drove like the clappers to get us back to Leeds.

A mobility car would have had priority breakdown cover.

The car wasn't fixable and we couldn't get credit to buy another. We managed about a month with no car but the one time we went on a bus the child in the next pram space pulled his vent off. We couldn't use taxis as no car seats and didn't feel safe carrying him on our knee with all his equipment. Basically my son didn't go anywhere other than essential appointments. He wasn't stable and couldn't manage huge amounts of time on the dry circuit. Eventually we were helped to get a car which lasted us until he was 3 and got mobility.

Case study two:

My daughter has had a trachy [tracheotomy] with a ventilator attached 24/7 since the age of 8 months. She needs these for an undiagnosed neuromuscular condition. She cannot support herself at all. Carrying her, her vent, her suction machine, her oxygen, her emergency equipment to our car and back for 2 years was extremely difficult. We ended up selling our family car and purchasing a WAV privately as it just became too hard to carry her as she grew.

For more information 

Please contact James Cooper, Public Affairs and Policy Manager at Together for Short Lives by email (james.cooper@togetherforshortlives.org.uk) or telephone (01179 897 863 or 0741 522 7731).

[1] Contact a Family (2014). Counting the Costs 2014: Research into the finances of more than 3,500 families with disabled children across the UK. Available to download from: http://bit.ly/1yZKhSu

[2] Sourced from the answer to a written parliamentary question tabled by Sarah Wollaston MP (13360, 26 October 2015) and answered by Justin Tomlinson MP on 2 November 2015.

[3] The Blue Badge scheme local authority guidance (England). Available to download from: http://bit.ly/1NYLfqL]