On Monday 13th February, we were lucky enough to participate in the pilot of the new Cerebra DLA Workshop. The day was incredibly informative, and we have picked out the key points from the workshop to assist you in completing the forms.
What is DLA?
DLA is a non-means tested benefit; it doesn’t matter how much money you earn each year, if the care and mobility needs of your child are significantly greater than a typically developing child of the same age, you will be eligible. Your child’s needs must have been present for at least three months, and be expected to last for at least six months in order to qualify. This does not mean that your child has to have an official diagnosis, the award is based on need.
How is DLA made up?
There are two components – mobility and care. The mobility component is split into lower rate (£21.80 per week) and higher rate (£57.45 per week). There are age restrictions for the mobility element of DLA: three or over to qualify for higher rate, and five or over for the lower rate.
The care component is split into lower rate (£21.80), middle rate (£55.10), and higher rate (£82.30). The level of care required determines the rate awarded, however in order to qualify for higher rate care, your child needs to require support during the night (11pm – 7am).
There are millions of pounds in unclaimed benefit each year, make sure you’re not one of them. There are many reasons that people don’t claim: lack of information and awareness; length and complexity of the claim form; negativity of the claim process; stigma around the benefits system; lack of expert advice/knowledge; and linguistic/ethnic barriers. It is possible to get the forms in different languages; however, you would need to ring the DLA line to request this.
It is important to understand that you can claim DLA for your child, even if you are in work. It will not reduce any other benefits you claim, and in some cases, could even increase the amount you receive. You can claim for disabilities which don’t affect your child physically, and even if you have had a claim turned down in the past, you can submit a new application.
You can either request a form to be sent to you using the telephone line, or you can download and complete a form online. It is helpful, but not necessary, to send reports generated by any specialists who see your child to back up your claim.
What do I need to know to complete the form?
High rate mobility (“HRM”):
Your child must be either unable to walk, or virtually unable to walk. If walking causes your child severe discomfort, they have extreme sensory issues and/or mental inflexibility meaning you regularly have to carry them or they refuse to walk, or are part time wheelchair users, they may be entitled to HRM. If the exertion required to walk is a danger to your child’s health for cardiothoracic reasons, or they are a double amputee, or they are 100% blind and 80% deaf, your child will qualify for HRM.
It is also possible to qualify for HRM based on severe mental impairment (“SMI”). The Contact a Family website has a guide to SMI and SBP (Severe Behavioural Problems) for children with autism spectrum disorders (“ASD”).
Lower rate mobility (“LRM”):
If your child has an ASD, they should qualify for LRM. Your child must require guidance or supervision in unfamiliar places greatly in excess of that of a typical child of the same age. This could be due to impulsivity, inappropriate behaviour (including overt happiness), balance/coordination issues, communication difficulties, self-help skills, physical limitations, no sense of danger, no road sense, no stranger danger awareness, easily distracted by external stimuli, and social naivety. A child with ASD will usually have one or more of these requirements, and it is therefore important to ensure this section of the form is completed in full.
Low rate care (“LRC”):
Your child must require attention or supervision in connection with his/her bodily functions for part of the day. Bodily functions include thought processes for the purposes of the DLA form, which means that, generally speaking, LRC doesn’t fit for a child with ASD as their impairments, included social issues, will be present consistently throughout the day.
Middle rate care (“MRC”):
Your child must require attention or supervision throughout the day or night. This is generally the most fitting category for children with ASDs unless they require attention throughout the day and night.
High rate care (“HRC”):
Your child must require attention or supervision throughout the day and night. To qualify your child must require assistance for at least 20 minutes between 11pm and 7am.
It’s hard, but you need to try to think negatively. Remember that the assistance includes prompting, encouragement, or physical help. Prompting is a huge part of parenting a child with ASD, think about the number of times you need to remind your child to complete activities, and the extra assistance they need with their executive functioning skills. Don’t undersell yourself, but remember that the examples you give must be present for the majority of the time – if you mention a behaviour which is only present once a month, it is irrelevant to your claim, but could help to evidence a behaviour seen more frequently. Give real examples to back up your claim, and keep your narrative concise.
Cerebra has an absolutely fantastic guide to assist with completing DLA forms. Autism Puzzles members are also able to book an outreach session for further assistance.
Questions to ask yourself when completing the forms:
Do they have physical difficulties walking?
How far can they walk without severe discomfort? This could be a shorter distance than they can physically walk. If they can walk 200m, but after 50m they are in pain or are having other difficulties, then your response would be 50m.
How fast can they walk and how do they walk? Think about things like toe walking, and whether your child can keep up with their friends of the same age.
Does the effect of walking seriously affect their health? If your child has a spinal, heart or lung condition, think about if walking affects this.
Do they need guidance or supervision most of the time when they walk outdoors? If your child is unaware of the dangers around them, or is easily distracted, it is highly unlikely they are able to walk around unsupervised. Think about whether your child would automatically stop to look before crossing a road, if they are likely to get distressed by traffic noise or sudden sirens, or if they are liable to trust anyone and are vulnerable to walking off with a stranger.
When did their mobility needs start? It is likely this will be from birth for a child with ASD.
Do they need encouragement, prompting, or physical help? Think about the number of times you have to remind your child to do things like getting dressed in the morning.
How often do you need to do this each day? For a bath this would be once a day (although the time taken could be hours!), for teeth brushing this would be twice a day. It is important to note that this is the number of times you aim to get activities done – the inability to get your child in the bath, for example, doesn’t negate the fact you try.
How long does the activity take from the time you start telling them until it’s done? As mentioned above, this could be a lot longer than you realise. If you need to start preparing your child for an activity before it commences, this counts as the time you start. The time you finish is when the activity has completed, and you have finished any post activity clearing.
Do you have to physically ‘fight’ to get things done? If you have to physically pin your child down to brush their teeth, or hold them in place to wash their hair, this is classed as a physical ‘fight’.
Do you do anything which you wouldn’t have to do for a typical child of the same age? If you have to mop the bathroom floor every time you bath your child due to them thrashing around, for example.
Speaking and communication questions:
Can your child speak? This is the ability to form words verbally.
Can your child communicate? This is the ability to express yourself, to indicate your needs, and convey a message.
How does your child communicate? This could be verbal, Makaton, PECS, BSL, or any other means.
Is your child understood by you?
Is your child understood by others?
Does your child have any problems with communication? This can include volume control problems, an inability to express feelings and needs, not knowing the rules of communication etc. All children with ASD will have problems with communication.
You have one month to dispute a decision. The first step is a mandatory reconsideration, and after that, you can appeal against the decision. 90% of the time, the same decision is given when asking for a mandatory reconsideration, so disputes will typically go to tribunal.
If your circumstances change, you can apply for a DLA434 form, which means you don’t need to complete all of the sections again, just those which have changed.
There is no set length of time between renewals, awards can vary from one year to indefinite. When renewing DLA, the entire form has to be completed again, you are not able to just state “no change”. Some people find it helpful to keep a copy of their previous form for reference, although duplicating the information can sometimes be counterproductive, and you claim may be rejected.
DLA is only for children up to the age of 16. Once your child is 16, they will need to apply for personal independence payment. You will be advised of this when your child is nearing their 16th birthday, and more information can be found on the government website.
This post was written, with consent, using a workshop written by David Williams from Cerebra.