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Resolution • 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 Component. 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 Mobility. 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 £2m Why should under 3’s be eligible? • 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 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 immense. • With advances in technology, many children under three years use powered wheelchairs now and require a wheelchair accessible vehicle (motability scheme) • 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 community. • Children unable to attend essential hospital and therapy appointments. • Families facing financial crisis and poverty. • Relationships breaking down within families. 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 help Jordan 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 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 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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