DLA: keeping a diary

Filling in a DLA claim form - How the child's illness or disability affects them

As the Disability Living Allowance (DLA) form is open (and likely) to change in the future, we decided that the best way to guide parents attempting the form was to suggest the outline of a DLA diary (ideally started a few weeks before the form is tackled). Through this format parents can regularly add entries about their child, into sections that correspond to the actual DLA form. Therefore, when the time comes to tackle the dreaded form, parents will have a handy resource ready at their fingertips.

Wherever possible, parents should include examples of their child's behaviour to illustrate particular points - extra sheets can be added for this purpose (mark them clearly in case they get separated from the form). Filling out such a lengthy form can really be exhausting, you would be amazed how quickly your brain goes blank when attempting to answer the questions - especially if they relate to exact amounts (eg how many metres/yards, hours/minutes). Therefore, it is important that the diary entries are detailed and that you record this sort of information. However clearly the event sticks in your mind at the moment, you may forget at a later stage.

Make sure you write down exactly what has happened painting a realistic picture of the extra care that you are giving your child. It can be hard to fill out the form in this way as you will have to include a lot of information that focuses on the negatives, rather than the things your child can do. However, this is the information the decision maker will base the claim on, so it is important you give them a clear picture of your child's care needs.

Note - text in bold and numbered questions are direct quotations from the DLA form labelled November 2009 in the bottom left corner of the cover. You may wish to make these parts specific headings in your diary to guide you into providing the right information.

Walking outdoors

Talk about why it is so difficult for you to get from A to B, how long this takes and how your child walks.

1. Does the child have difficulties walking?

Try thinking of a journey you make regularly, a journey that you would normally walk although you might drive or take the bus because it is easier when with your child.

• What makes this journey difficult?
• What are the difficulties?

They could be:

• exhibiting challenging behaviour when outside.
• having to follow certain routes, routines when walking.
• your child walks extremely slowly and cannot be persuaded to speed up.

Does your child listen and respond to your instructions when out?

Or do they:

• ignore you even when you are near busy roads/in dangerous situations.
• deliberately disobey you, making it difficult to go out if there is just one adult or if there is more than one child?

Are you ever unable to go out because of how your child behaves or because it might be dangerous?
Do they have any sensory abnormalities such as acute hearing, that make going out difficult?
Are they easily distracted by what is going on around them?
Are they uncomfortable if certain rigid routines are not followed?
Do you have to use any special equipment such as an adapted buggy or reins?

If the child needs someone with them when they are outdoors

1. Does the child need to have someone with them when they are outdoors in places they do not know well?

Why do you need to be with your child outdoors?
Does your child have a sense of danger?
Do they need your help even if a situation or a journey is familiar?
Do they understand danger but are still easily distracted should something else come along eg they are normally fine on roads but will run across a busy street to get a better look at a double decker bus.

How vulnerable do you think your child is?
Do they understand stranger danger?
Can they assess the risks involved in situations?
Can their knowledge of stranger danger be easily overridden for example if they are offered a favourite treat?
Do they understand that certain rules can be broken, for example, once they have learnt to wait for the green man to indicate it is safe to cross the road, can they then learn that sometimes ambulances or fire engines go through red lights?
Does their appearance make them look different in a way which makes them a potential target for attack?
Would your child always let you know if something had happened to them?
Would they only let you know if you asked the right questions?
Do they use signs which might complicate this? Are they completely non-verbal?

Someone keeping an eye on the child

1. Does the child need someone to keep an eye on them?

During the day:

It may be hard to judge this, it could depend on how well your child can be occupied by their own interests and what they are likely to do if they are not occupied.

You could tell them:

How often you need to physically check up on your child, even if this just means staying in the next room or within earshot.
Give examples of specific incidents such as 'he appeared to be playing quietly in the kitchen but when I went back five minutes later hed removed half the contents of the freezer.'
Even if your child is quite able they may still need a lot of supervision.

For example:

They are interested in how electricity works and could take apart the television in minutes.
Do you have to use special gates/power plug covers/locks etc?
If you are trying to work out how much time you leave the child unattended ask yourself if you feel comfortable leaving them unattended at all.

If you find your child doing something - how long does it take you to:

• Stop the behaviour?
• Deal with the consequences?
• Make repairs safe
• Clear up
• Deal with the temper tantrum
• Distract the child with another activity
• Encourage them to behave differently
• Time this WHOLE process from start to finish as all this information is relevant.

During the night:

Plan this along the same lines as the day time.
Do problems that occur during the day also happen at night?
Problems may occur less frequently but they are still worth mentioning.

About the child's development

Talk about any delays in the development of physical or sensory skills

1. Has the child’s development of physical and sensory skills been delayed ?

Do they have gross/fine motor skills problems?
Are they hyper/hyposensitive to sensory stimuli?

2. Has the child’s development of learning skills been delayed?

Absolutely!

May learn skills but forget them next day.
May have a patchy range of skills (finds some areas very hard).
May learn skills but be unable to generalise them to other situations.
May only use acquired skills when prompted or encouraged to do so.

3. Does the child have a delay in their development of social skills?

Concentrate on the inappropriateness of your child's social behaviour

Is it:

• Active but odd?
• Passive - will only get involved with continual assistance/supervision?
• Aloof? Does he/she have a complete lack of social motivation?
  
  Remember to provide examples.

4. Does someone need to help the child develop through play?

Can your child play imaginatively or are they entirely dependent on your input?
Do you have to regularly intervene in play to redirect/motivate?
Once your child has accepted an activity how long can they entertain themselves/sustain attention to the task?
Does your child's play constantly demand adult involvement?
Will your child only be interested in certain activities eg rough and tumble play, the trampoline (ie activities that demand your involvement)?

Waking, getting up and going to bed

It is important to remember to outline any routines/rituals in this section.

1. Does the child have difficulties waking, getting up, or going to bed?

Do they have special getting up or going to bed routines?

For example:

Do clothes need to be laid out the night before in a special sequence to ensure the child will get dressed?
Is getting dressed a lengthy process?
Resistant to change?
How soon does your child have to start getting ready for bed? Sometimes this is several hours before bedtime - saying goodnight to everyone, choosing a book, pouring a glass of milk, talking through what is happening the next day etc.
Does your child have to be woken in a particular way by a particular person, pet or toy - to ensure a good mood?
Do you have to let them snooze for a while before getting up?
Can you trust your child to stay in their room and occupy themselves if they are awake in the night?
What happens if you don't see to them immediately?

Might they:

Do something disruptive - set off the burglar alarm, wake their siblings?
Be destructive - strip wallpaper, pull up the carpet?
Do something dangerous - bang their heads, jump out of the window?
Once awake, how do you get your child back to sleep?
Does your child insist on following a routine before returning to bed?
Once awake is it possible for them to go back to sleep?
Does your child ever enjoy any unbroken sleep? Is this a common occurrence?

Washing and bathing

Remember even if your child doesn't need physical assistance with washing and bathing they may still need support and prompting to keep clean.

1. Does the child have difficulties washing or having a bath or shower?

Are they capable of washing themselves but do they still avoid doing it, without parental supervision?

This might be because:

They have difficulty with sequencing the wash/bath routine.
You have to be present when they are washing?
They need verbal prompts.
They have difficulties with motor skills which might make getting toothpaste on a toothbrush difficult for example.
They are hypersensitive to touch - this might make it difficult and unpleasant to brush teeth, have a shower or brush hair for example.
They don't understand the health benefits of keeping clean.
Does your child love having baths? Do they refuse to get out? Are they likely to make a real mess in the bathroom?

Getting dressed and undressed

Again your child may be perfectly capable of dressing him/herself but lacks the motivation to look smart or neat (often a social motivation).

1. Does the child have difficulties getting dressed or undressed?

Are they unable to choose appropriate clothes (with regards to season, occasion) without assistance?
Do they have difficulty getting into the routine of getting dressed eg do clothes go on inside/out or in the wrong order eg putting socks over shoes?
Do some of their routines or obsessions affect what they wear?

For example:

Will they only wear certain colours?
Will they only wear certain labels?
Is their skin so sensitive they can only tolerate certain fabrics?
Do you have problems when their favourite clothes need washing/wear out?
Does their motor control make doing up buttons, tying laces etc difficult?
Does your child need to change their clothes several times a day?

Help with toilet needs

Talk in as much detail as possible in this section about any problems your child may encounter.

1. Does the child have difficulties coping with their toilet needs?

Are they able to stay clean/dry?
Do they have poor toilet hygiene?

Are they likely to smear?
Do you need to be in the bathroom with him/her to prevent other undesirable behaviour?
Do you have to get up in the night ever, to help them go to the toilet?

Communicating with other people

1. Does the child need help understanding other people?

Does your child respond to his/her name?
Understand when other people are addressing him/her.
Do you use any forms of non-verbal communication?

Does this involve:

• being there to sign for your child?
• using a favourite toy to motivate them?
• Will they only respond to certain phrases said in certain voices?

2. Does the child need help being understood by other people?

Is your child verbal?
Are they verbal but echolalic? Will they only speak in certain words or phrases?
Do they use other forms of communication that only a family member can understand eg noises, gestures etc?

3. Is the child unwilling to communicate with other people?

Do they make false assumptions about what people might already know (lack of theory of mind)?
Do they lack empathy?
Are they unable to read social situations? Can they interpret non verbal behaviour correctly? Do they place the wrong interpretations on what is said to them (take things very literally)?
Do they simply lack motivation to communicate?
Do they lack confidence in their communication skills - would they like to be more sociable but they don't know how?
Do they make tentative efforts to be sociable but if these are ignored they give up very easily?

Eating and drinking

1. Does the child have difficulties eating or drinking?

Are they likely to regurgitate their food if they are not properly supervised?
Do they need to follow certain routines about plates or cutlery?
Do they have Pica syndrome which means they need supervision whenever they are in the bathroom, kitchen, outside?
Are they aware that they need to eat to survive?
Will they only eat certain brands of food?
Will they refuse to eat in certain places eg at school?
Do they know about the need for a balanced diet?
Do they dislike eating foods with certain colours or textures?

Help with therapy

1. Does the child need therapy?

Do you have to conduct any therapies at home? They may seem like a part of everyday life until you think about it.
Do you have to help them with movement or co-ordination exercises?
Do you have to use special techniques to prevent head-banging or other self-injurious behaviours?

Note: There are sections we have not addressed eg blackouts, fits, seizures, because they will be so specific to each child, and in other sections eg 'The child's mental health', the questions/suggestions on the form are well structured and can be related quite easily to ASD.

On a final note, consider keeping a general diary following your child's development on a daily/weekly basis. It can be useful for a whole range of situations - whether you are trying to gain a diagnosis, keeping teachers informed about behaviour at home, to help other family members gain an insight into your family life - or (and perhaps most importantly) to remind yourself about the progress your child may have made over time.

Quick link to this page: www.autism.org.uk/18329