DLA by zhangyun


•   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
    additional cost.

•   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.
                             The facts
•   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&LT, 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
    years older.

•   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
    therapy appointments.

•   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
too much...

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