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Disability Living Allowance (DLA)

What is it?
In order to qualify for DLA, the child (as a result of illness or disablement) must require care, or attention and supervision substantially in excess of that usually required by a child of the same age. Children with ongoing arthritis often require daily therapy and supervision at home or school and elsewhere, and often require help with getting about that other children do not. The benefit includes two parts; a care component about personal care, and a section that considers the child's ability to get about (the mobility component).

For children with arthritis the most difficult part to think about is that the condition fluctuates so much, and that some days the children seem more well, but on other days they need considerable help. Most other people who apply for DLA have illnesses and needs that do not change so much. The claim form does allow you to explain the fluctuations but it involves a significant effort from parents to complete. The guidelines in this chapter should help you explain the fluctuation to the person who assesses your application.

For everybody who applies you must:

1. Live in Great Britain, and have done so for at least six months out of the last twelve months.
2. The child must be at least three months old before the application.
3. Have needed the help for at least three months before the application.
4. Be likely to continue to need help for at least a further six months.

DLA is about the child's individual needs and is about how the condition affects them. The family income or living circumstances are not included in the assessment.

The care component of DLA

This is payable at three different rates (lower, middle and higher rate[2]), paid every four weeks into a building society or bank account or by book cashed at the Post Office. The rate awarded is related to the needs of the child as you described on the claim form and in the supporting evidence from informed people you nominated.

The term 'in connection with their bodily functions' is used on the forms and include:

• getting dressed or undressed, eating, drinking,
• using the toilet, washing, shampooing hair, cleaning teeth, brushing hair,
• getting in and out of the bath or bed,
• sleeping, turning in bed, using sheepskin cover, bed rails, bed frame
• help with medication, daily therapy, using splints or hot packs, massage
• making choices, feelings/depression, needing extra encouragement,
• seeing, talking, listening, reading,
• walking, (what kind of surface, in what weather, how quickly, how confidently?)
• sitting, going from sitting to standing or lying,
• playing, joining in with activities with friends and family.

The phrase 'the child must require continual supervision in the day' means that an adult's attention is needed continually to prevent the child from harming themselves or to anticipate and take action to prevent problems. In the instance of children with arthritis, parents need to be extra vigilant when the child is with other children (such as at birthday parties or school events or the play park), in order to stop the child from doing things that will cause problems later. Activities such as using bouncy castles, ball pools, trampolines and skating are often reported activities that cause parents and children particular concern.

Children with arthritis, like adults with arthritis, may be distracted from their physical symptoms when they are enjoying themselves and trying to fit in with friends and siblings. Often the child, especially the younger child with arthritis, will take part with great enthusiasm, but some hours later they experience increased joint inflammation, stiffness and immobility. The parents have the unenviable job of encouraging the child to withdraw and try something less harmful. Give examples of these interventions and reasons for parents' vigilance on the claim form.

The phrase 'at night they require another person to be awake for a prolonged period or at frequent intervals throughout the night' usually refers to between 10 p.m. and sunrise, and 'prolonged' means a period of at least 20 minutes. 'Frequent' means at least three times, most nights of the week. Needs at night include unpredictable wakefulness, help with toileting, administering medication, coping with night-time fevers.

When children have to wear splints at night they can need more help including helping them get to and use the toilet, help with turning in bed, and disentangling them from bedclothes!

The mobility component DLA

This is payable four weekly at either of two rates (the lower and higher rate), depending upon the stated needs of the child. (At the time of writing, the mobility component of DLA is for £14.05 or £37.00 per week.) To be awarded the higher rate the child should be (a) unable to walk or (b) virtually unable to walk, or (c) that the exertion of walking leads to considerable pain, or serious deterioration in their condition.

Children with arthritis may be able to walk very carefully for a certain distance, but when compared to their peers:

• they are unable/unhappy to do this in a crowd (like in a school corridor),
• they may be prone to being knocked by other children (causing anxiety or pain),
• their confidence may be fragile,
• they may trip up more easily (due to lost agility, slower reflexes when in pain, or be unable to deploy self-protecting reflexes such as reaching arms out to stop a fall due to joint inflammation elsewhere).
• Consider the effort to walk because they may need to conserve their effort/risk to essential journeys only.

Being turned down
If your application for DLA is turned down, or you think you should be paid a higher rate than they are prepared to offer you, you have the right to ask for another officer to review the decision. It is important to seek advice before doing anything. If this step fails, you can still appeal to an independent tribunal. There are time limits for reviews and appeals, so always get advice as quickly as possible. You can also ask for a review if your child is receiving the benefit at a lower rate, and his or her condition alters and they need more help.

Reality Check!
When you have struggled to cope unaided for months even for years, and eventually applied for a benefit for which you believe you are eligible, it can be devastating to be turned down. People can feel very angry, very frustrated and very abandoned, and many people give up seeking financial help at this stage. However, the majority of applicants who ask for the decision to be looked at again do eventually have the decision reversed. You will need perhaps to supply more reports from professionals listing the functional difficulties the child copes with. A considerable number of decisions are also overturned at appeals, so please persevere, get help from someone who is familiar with the forms and process, and don't give up.