Guidelines for completing Disability Living Allowance forms
Barbara Humphries is the parent of a child with hemiplegia and is HemiHelp’s home visitor for the south of England.
Before filling out the DLA form there are a number of things you need to think about regarding your child:
- their general behaviour e.g. frustration, irritability, anxiety
- bedtime routine
- help with homework
- if they need help at school, is it physical help or academic?
- help with play.
You need to show that your child needs more help than another child of similar age, so remind them on the form. Remember most children with hemiplegia will need extra help: they are not being lazy!!
You can send as much evidence with the form as you like; they have to read everything you send, so reports from Doctors, Educational Psychologists, therapists etc are all useful. The more evidence you provide, the less likely the people reading the form are to involve their own doctors. Any reports you can send will help to corroborate the information you have put on the form. It is also useful to keep a diary, not just as evidence but to help you realise how much extra support you give to your child.
Here is an example to give you some idea.
7.00 – 7.15 Wake child up, help get out of bed, go to bathroom, help get washed (can’t wring out flannel, apply deodorant under unaffected arm).
7.15 – 7.30 Help get dressed, pulling on socks, doing up buttons, getting arm into sleeve, straightening clothes.
7.30 – 7.45 Breakfast, pour milk onto cereal, she’ll spill it otherwise, spread butter on toast.
7.45 – 8.00 Physio, needs to be done daily to stop arm/leg muscles shortening, takes time to persuade to do this.
8.00 – 8.05 Put on splints and shoes.
8.15 – 8.30 Drive to school, distance only ½ mile but she can’t walk that far and then do a whole day at school. Discuss any worries and anxiety about day ahead. Help get in and out of car, help with seatbelt.
Make the diary as detailed as possible, if you want any more ideas I have a few samples you can look at.
Filling in the form
Part 1 – 5 General information about the child and their condition
Part 6 – 7 Mobility
- If your child is under 3 you can’t apply for any rate of mobility.
- From 3 – 5 years you can only apply for Higher rate mobility (you can apply 3 months before their 3rd birthday).
- Over 5, you can apply for Lower rate mobility.
If you want to apply for Higher Rate Mobility think about:
- the distance your child can walk – use houses to measure distance e.g. a terraced house is about 5 metres across its frontage, a semi detached 7 metres etc.
- how fast your child can walk
- how long your child can walk for
- the way your child walks
- how your child is after they have walked this distance – are they fractious because they are so tired, are their legs very painful etc.?
Lower Rate Mobility is for cases where your child is able to walk but needs guidance or supervision outdoors. This could be, for example, because of:
- a visual impairment
- difficulty with finding the way
- impulsive behaviour which makes them unsafe e.g. when crossing a road.
Part 8: Someone keeping an eye on the child
- Be as detailed as you can
- In the boxes at the bottom of most of the pages the form asks….“how much of the day/how many times a day…….” . If it is all day (and in a lot of cases it will be) write ‘all the time’, and ‘continuous’ in the minutes box.
Part 9: Development
A child without a disability would expect to reach the following milestones:
- by 9 months Roll over, sit up independently, transfer objects from hand to hand, finger feed, start babbling
- 9 months + Crawl, start to stand up, develop a pincer grip, say Mamma/Dadda specifically
- 12 months + Walk, help with dressing
- 15 months + Run, spoon feed, drink from cup
- 24 months + Jump, kick a ball, help with undressing, be toilet trained, put 2 words together
- 30 months + Climb stairs using alternate feet, state first name.
Part 10: Bedtime - think about bedtime routine
- do they need help to get undressed?
- do you have to help them get into bed and cover up with bed clothes?
- do you have to stay to settle your child?
- do you need to go in to sort out bedclothes during the night?
- can they get themselves a drink if they need it?
- do they need help to go to the bathroom at night?
Part 11: Washing & Bathing - what to think about
- do they need help washing?
- do they need help with cleaning teeth?
- would you leave them in the bath/shower on their own?
Part 12: Getting Dressed or Undressed
- How you help them get dressed/undressed
Part 13: Help with Toilet needs
- think about night time as well as daytime (‘night’ here means when adults would normally be in bed).
Part 14: Communication with other people
- Do they need any help to be understood?
- What is their behaviour like towards other people?
Part 15: Eating & Drinking
- Do you have to cut up their food?
- Do they have problems chewing e.g. still have baby food?
- Can they hold a cup with a handle?
- Can they manage a glass?
- Can they use a knife and fork?
Part 16: Help with Medication - this is fairly self explanatory.
Part 17: Therapy This includes Physio, OT, speech, play.
- Explain therapy and why you do it
- Explain problems getting your child to do it
- If playing games is part of therapy, write it here
Part 18: Help with Medical Equipment
- AFOs (splints) - how long does it take to put them on and how often?
Part 19: Blackouts, seizures etc. - self explanatory
Part 20: Childs Mental Health - put down all the bad behaviour
- excessive shyness
Part 21: Movement and Co-ordination - explain how child moves e.g.
- carries left arm high
- limps on left leg
- loses balance easily
Part 22: Moving about indoors
- sitting on the loo and getting off it again
- getting into and out of bed
- getting in and out of bath
- type of chair they use
Part 23: When child is in bed at night i.e. after the parents have gone to bed
- can they cover themselves up?
- settling back to sleep
- falling out of bed
- going to the toilet
- getting a drink
Part 24: Help child needs when they go out
- help in the park on apparatus
- Mother & Toddler group
- help at school in the playground
- help to play at home (can you leave them on their own to amuse themselves?)
- can they play in the garden on their own?
Part 25: Who would you like to tell us about the child’s disabilities?
- teacher, nursery assistant, teaching assistant
- other therapists e.g. speech, play
- health visitor
- social worker
- hospital specialists
Part 26: Anything else
I would summarise everything you have said in the previous pages, just to get your point across.
The rest of the form is fairly self explanatory, but remember to send in as much evidence as you can. It may help to have a trial run at the answers before filling in the form. It may also help to have someone with you, preferably someone who knows your child. Apart from helping you fill in the form they can give you emotional support, as listing all your child’s difficulties will be draining and probably upsetting as well.
Remember to keep a copy of the completed form for reference. Your child may be immediately awarded DLA until they are 16, or only for two or three years at a time, in which case it will help you complete a new form. And remember, if your child is turned down or awarded DLA at a lower rate than you think their needs merit, you can appeal against the decision.
See also HemiHelp’s information sheet on Benefits, and if you would like more detailed guidance both Contact a Family (www.cafamily.org.uk) Helpline: 0808 808 3555, and Cerebra (www.cerebra.org.uk ) Helpline: 0800 328 1159, have excellent booklets that you can download from their websites or order by phone. HemiHelp’s home visitors can also provide guidance and support.