• BACKGROUND: Thousands of disabled and terminally ill children in the UK
are being discriminated against due to their age. Many families are left in
poverty as a result of their ineligibility to access the Disability Living
Allowance Mobility Component for their disabled child, because that
child is under the age of three years. Extension of this benefit to include
under those under three, would acknowledge the substantial difficulty that
many families with disabled children face in being mobile, especially those
who have to carry medical equipment or additional support equipment with
them for their child's clinical or welfare needs, and go some way to meet the
• DRAFT RESOLUTION: This meeting urges HM Government to
acknowledge the impact that disability has on a young child’s and their
families mobility and act purposefully and with urgency to amend the
current legislation to allow children under the age of three years , with
significant disabilities, to access Disability Living Allowance Mobility
Disability Living Allowance
Disability Living Allowance (DLA) is a tax-free benefit for
children and adults who, due to their disability, need help with
personal care or mobility. DLA has two components; Care and
The Care Component (DLAc) can claimed once a child reaches the age of
three months. DLAc is split into three levels; high (£70.35), middle
(£47.10) and low (£18.65).
The Mobility Component (DLAm) can be claimed once a child reaches the
age of three years and is split into two levels. The higher rate (HR) is worth
£46.75 a week and is available from the child’s third birthday. The lower rate
(LR) is £17.75 a week and is available from the child’s fifth birthday.
• There are 770,000 disabled children in the UK
• We believe there are 50,000 disabled children and their families in the UK
suffering because of the restrictive age criteria.
• Currently, assessment of DLAm is based on the child's inability or virtual
inability to walk and the Government believe that as able bodied children
under the age of three need assistance with walking, DLAm is not
applicable to disabled children in this age group. We believe that an
inability to walk independently makes up only a small part of a mobility
impairment and the Government should be looking at the overall impact a
disability has on young children being truly mobile.
• To extend the current legislation and provide for severely disabled children
under the age of three years would cost the Government approximately
Why should under 3’s be
• Disabled children under three have considerable amounts of equipment that
can severely impact on that child’s ability to be mobile (i.e. specialist car
seat, wheelchair, feeding pump, seating system, standing frame, tubes,
suctioning, oxygen, feeds etc from one location to another is a difficult task)
• Children with severe disabilities often require more transport (attending
hospital appointments, S<, special schools and nurseries, OT, Physio,
Dieticians, Sure Start Centres / development Centres, respite care and
Hospices) and go further distances than children without disabilities.
• Many babies with terminal illnesses do not live long enough to benefit from
DLAm but have comparable needs to a child with a terminal illness five
• Children who are oxygen dependent often cannot access public buses (the
oxygen tanks are considered hazardous).
• Children with a lot of equipment cannot generally use taxis and buses.
• Where families can use public transport, the additional costs can be
• With advances in technology, many children under three years use powered
wheelchairs now and require a wheelchair accessible vehicle (motability
• The additional mobility costs for disabled children are higher
More petrol required
• Hospital parking charges
• Congestion charges
• Paying for special adaptations to transport the child
• Families having to use 2 vehicles to for family transport
What happens to the children failed
by the state?
• Families left housebound and excluded from their
• Children unable to attend essential hospital and
• Families facing financial crisis and poverty.
• Relationships breaking down within
Case Studies: Alfie
Newlife recently spoke to a family whose severely disabled two year old little
boy Alfie was missing essential hospital appointments because the family
couldn't afford the £25 round trip taxi fare four times a week to the child's
multiple hospital and therapy appointments. The parents of this child could
only afford one car and dad used this car to travel to work and back daily.
Mum was left housebound by this and each week had to choose which
appointments she could afford to take her son to and which would have to
be missed. If Alfie had been able to access DLAm the family could have
used the benefit to cover the cost of the taxi's or chosen to access the
Motability Scheme and Alfie would be able to benefit from the full range of
medical interventions available to him.
Case Studies: Ishan and Aadi
Ishan and Aadi are 2 1/2 year old twin boys. Both boys are very large for their age and
have severe autism. While both boys are fully mobile, neither child communicates
verbally and both display very challenging and aggressive behaviour. The boys live
with their mum and 8 month old sister. Mum has recently become a single parent
following the death of her husband. Mum does not drive and before his death, dad
worked nights and in the day time would drive mum and the children to their
various appointments, shopping, nursery etc. Since dad's death mum has been left
very isolated. She finds using buses very difficult as the both Ishan and Aadi do not
like crowded areas and when forced into those situations, their violent outbursts
escalate. Once distressed it can take the children several days to calm down; during
this time the children attack eachother, mum, their sister and self injure. In addition,
both brothers have no awareness of danger and in the past have run away from mum
and into the road. To avoid the risk to Ishan and Aadi mum now only leave the family
home once a week when she can afford to take a taxi. The twins no longer attend
nursery and appointments have to be arranged around the money mum has left each
month to pay for additional taxi fares. Access to DLA mobility would allow mum to the
fredom to leave the home and access the community whithout risking Ishan's and
Aadi's safety or a deterioration in their behaviour.
Case Studies: Cara
Cara is 2 years old and has a condition called Prader Willi Syndrome, she lives at
home with her mum and dad. This has resulted in Cara having very low muscle
tone. Cara is large for her age and is unable to sit or stand unaided. Cara does not
yet have head control and has to be positioned carefully to allow her airways to
remain open. Cara needs a specialist car seat with additional postural support,
head support and turntable costing £1400. Since Cara was born, mum hasn't been
able to return to work and the family cannot afford to buy the specialist car seat.
However, without this equipment Cara cannot travel safely in the family car and is
at constant risk of choking. With the help of her Occupational Therapist and
Consultant, Cara's parents approached both the Local Authority and the PCT for
help with paying for this equipment. Both authorities refused and suggested that
the parents use their DLA Mobility to pay for the car sea as "that's what it's there
for". It was at this stage that mum had to point out that, despite her mobility
problems and the significant risk to Cara every time she gets in the car, Cara is not
entitled to DLAm for another year. Neither the PCT or the Local Authority could
suggest a solution other than to "wait until Cara is 3".
Children too young to
Jordan has uncontrolled epilepsy and is life-limited. He can walk unaided but
suffers a lot of injuries from his drop-attack seizures, which can happen up to a
hundred times a day.
Catherine has a condition called Metachromatic Leukodystrophy. She is very poorly and
not expected to live to her 3rd birthday next year. Katherine requires oxygen, suction
machines and specialist equipment everywhere she goes.
Andy has a degenerative condition called Spinal Muscular Atrophy. He needs to
travel in his specialist wheelchair which is now his only method of independent
mobility and postural support.
They are not numbers.
They are not pound signs.
They are not files or caseloads.
They are not a ‘moving population’ or the
contents of a waiting list.
They are not a government target.
They are not going to disappear.
They are not invisible.
They are not alone.
They are not asking for