DLA (Disability Living Allowance): what is it?

What is Disability Living Allowance?

Disability Living Allowance (DLA) is a benefit available to help with personal care and/or getting around.

Who is it available to?

DLA is available to children and adults with a disability under 65 years old. Many people have successfully claimed DLA because their child needs help with, for example, washing, dressing or going to the toilet; needs someone to keep an eye on them during the day; needs someone to keep an eye on them at night; cannot get around outdoors without supervision or has a severe mental impairment.

If I claim DLA will it affect any other benefits?

No, in fact it can mean you qualify for more Income Support, Housing Benefit or Council Tax Benefit.

If I have savings, will this affect my DLA claim?

No.

How long a period can I claim DLA for?

DLA can be awarded for anything from one year to life.

How is DLA awarded?

DLA comes in two parts - the care component and the mobility component. You can claim either or both components.

DLA care is awarded at three rates - a higher rate, a middle rate and a lower rate. DLA mobility is awarded at two rates - higher rate and lower rate.

How much will I get? (2009/10 weekly rates)

Mobility component
Higher rate: £49.10
Lower rate: £18.65

Care component
Higher rate: £70.35
Middle rate: £47.10
Lower rate: £18.65

How do I apply?

Fill in a detailed application form specifically for children (DLA1 Children) or for adults (DLA1) (DLA1(A) from advice agencies) available from your local DWP office, Post Office, or by ringing the Benefit Enquiry Line (BEL) 0800 882 200 or 0800 220674 in Northern Ireland. The form is specifically for children under 16 and asks for information about your child's care and mobility needs. Your application will be assessed by the DWP on the basis of the information you give.

How you present your case is therefore very important. The person who assesses your application is unlikely to have detailed knowledge of autism spectrum disorders. It is important to give them as much relevant information as possible, including examples from your own experiences. Always keep a photocopy of your claim if you can.

Do I qualify for the mobility component of DLA?

You can claim the mobility component of DLA as soon as your child is three if they have walking difficulties outdoors. Many children with autism spectrum disorders will need help and guidance when they are travelling on foot, especially along unfamiliar routes. Their progress may be severely hampered by obsessional behaviour, such as a need to touch car door handles, pick up stones or by an irrational fear of, for example, animals or crowds. They may suddenly become unable to move or they may walk off in the wrong direction or rush into the road. If you are a parent or carer of someone who experiences these kinds of difficulties, you could be entitled to claim the mobility component of DLA.

Your child may be able to get higher rate DLA for mobility if:

• they are aged three or over and
• they cannot walk or
• they find it difficult or painful to walk or are late in their development or
• the effect of walking could put their health at risk or
• they are both deaf and blind or
• they already get DLA care component at the highest rate and are severely mentally impaired/disabled and have severe behavioural problems.

This applies regardless of parental income and savings.

My child can walk - will this affect my claim?

Many people with autism can walk, but still receive DLA mobility component because they cannot make good progress outdoors, unless they are helped by another person.

How do I qualify for the lower mobility rate?

To qualify you must show that your child usually needs help when walking in unfamiliar areas. In other words, without the help and guidance of another person, s/he could not make real use of her/his ability to walk, except along familiar routes.

You must also show that your child could benefit from 'enhanced facilities for locomotion' such as a car or taxi. Put simply, you must show that with the help of 'enhanced facilities' your child could be mobile and that s/he would benefit as a result, eg s/he would enjoy increased social contact.

Explain on the application form why having these opportunities will help your child (eg because they have under-developed social skills and need as many opportunities as possible to integrate into the wider community). Use the application form to explain why your child cannot use public transport.

How do I qualify for the higher mobility rate?

To qualify you must show that your child is:

• unable or virtually unable to walk because of a physical disability (autism is recognised as a physical disability because it is caused by an 'organic brain dysfunction' which can, in turn, affect physical behaviour)

or

• has a severe mental impairment and displays severe behavioural problems, and qualifies for DLA care component at the higher rate.

Your child need meet only one of the above criteria in order to receive the higher rate. However, if possible try and qualify for both criteria, in case one is rejected.

What is meant by 'virtually unable to walk'?

When assessing your child's ability to walk the DWP will take into account:

• the speed at which s/he can walk
• the length of time s/he can walk
• the manner in which s/he walks
• the amount of discomfort s/he experiences as a result of getting from one place to another.

You will need to show that, on occasion, your child is temporarily unable to move. These interruptions must happen often enough, and last long enough, to be considered normal and routine.

What is meant by 'severe mental impairment'?

There are a number of different parts to the test of severe mental impairment:

• your child must be entitled to the higher rate care component (s. 73(3)(c) Social Security Contributions and Benefits Act 1992); and
• your child suffers from a state of arrested or incomplete physical development of the brain, which results in 'severe impairment of intelligence and social functioning' (regulation 12(5) Social Security (DLA) Regulations 1991);

and

• your child has severe behavioural problems (as defined in regulation 12(6) Social Security (DLA) Regulations 1991).

People with autism may do well in abstract intelligence tests but sometimes cannot apply their intelligence in a useful way in the real world. An IQ test can give a misleading impression of 'useful intelligence'. 

To support your claim for 'severe mental impairment' due to problems with 'useful intelligence', you could mention that:

• your child's condition is on the autism spectrum (ie the range of disability levels associated with autism)
• autism is believed to be caused by brain damage or arrested brain development
• your child cannot make a sound and safe judgement, and then act on it, because of poor communication and social skills, together with obsessional behaviour and clumsiness (if relevant).

Give examples, such as:

• not understanding that emergency vehicles can travel on both sides of the road
• lack of attention caused by obsessions (eg reading car number plates without paying attention to traffic)
• phobias (eg of dogs or crowds)
• abnormal responses to sensations (eg difficulty judging distances and speed of cars or responding to loud noises by covering the ears and refusing to walk on).

You could use terms such as 'mental disability' or say that your child has 'a disability of mind which results in abnormally aggressive or seriously irresponsible conduct'.

What is meant by 'severe impairment of intelligence'?

The Court of Appeal held that severe impairment of intelligence should not be defined exclusively by reference to an IQ score (Megarry v Chief Adjudication Officer, 29.10.99).

The case concerned an autistic child's claim for Disability Living Allowance (DLA). He appealed to the Social Security Commissioners on the grounds that he should be entitled to the higher rate mobility component of DLA on the basis of severe mental impairment (SMI).

The judgement does allow the DWP to continue to ask for IQ tests. An IQ score of 55 or less is very likely to pass the test of severe impairment of intelligence. The test of severe impairment of social functioning will then be considered separately.

However, where the IQ score is higher than 55 or there is no IQ test available, the decision maker must consider all the available evidence to decide the level of the claimants useful intelligence. Guidance issued in December 1999 says that the decision maker should decide whether the claimant has the ability to solve abstract tests but is unable to apply that intelligence to real-life situations. After having looked at all the evidence it is possible therefore for a decision maker to decide that a claimant's behaviour is consistent with severe impairment of intelligence despite having an IQ above 55.

(DMG Memo vol 10 1/99)

What is meant by 'disruptive behaviour'?

To qualify as 'disruptive', your child's behaviour must be extreme, and must regularly require another person to intervene and offer physical restraint in order to prevent self-injury, injury to others or damage to property.

Your child's behaviour must be so unpredictable that they require another person to watch over them during all waking hours. It will help if you can include specific examples of when his/her behaviour has been disruptive and how this has affected mobility.

Do I qualify for the care component of DLA?

You can claim the care component of DLA from when a baby is three months old. Caring for a child with autism can be extremely demanding. You may be needed at any time of day or night to help with washing, bathing or going to the toilet. Many children with autism have no sense of danger and need continual supervision to avoid injury to themselves or others.

The care component is awarded depending on the amount of care your child needs.

How do I qualify for the lower care rate?

To qualify for the DLA care component at the lower rate your child will need to meet just one of the day time conditions listed below:

Daytime conditions

• Your child must need attention with bodily functions (such as getting up, washing, going to the toilet, dressing or eating) for a significant portion of the day (about 40 minutes to an hour a day). This help may be needed for a single period or on a number of occasions during the day.

or

• be unable to prepare a cooked main meal even if all the ingredients are to hand (this rule applies to people aged 16 years or over only). Your child must be unable to, for example, peel and chop vegetables, lift pans, open tins, read a recipe or turn on taps.

Someone with an autism spectrum disorder may have a low concentration span. This may well affect their ability to cook a meal and should be mentioned on the application form, if relevant.

Note - if claiming for someone under 16 years old, you must show that the supervision they require is substantially greater than that needed by other children of the same age.

Recently, 'frequent attention with bodily functions' has been interpreted by the DSS as including: preparing food and cooking (particularly special diets); cleaning up spills at mealtimes and rinsing out bedclothes after an incident of incontinence, if this is done immediately. This interpretation has enabled more able people with autism to claim the care component.

How do I qualify for the middle care rate?

To qualify for the DLA care component at the middle rate your child will need to meet just one of the daytime conditions or one of the night-time conditions listed below:

Daytime conditions

• Your child must need frequent attention with bodily functions, such as getting up, washing, going to the toilet, dressing or eating

or

• continual supervision throughout the day to avoid substantial danger to her/himself or others. This could include a lack of awareness of danger, such as limited understanding of the dangers of fire, gas or electricity. It can also include temper losses and epileptic fits. You will need to show the potential for danger is substantial and that supervision is needed continually

or

Night-time conditions

• prolonged or repeated attention at night in connection with bodily functions. A 'prolonged period' is defined as at least 20 minutes. 'Repeated' is defined as more than once.

or

• prolonged periods of supervision, or supervision at frequent intervals, to prevent substantial danger to her/himself or others. Frequent intervals is defined as at least three times a night, though not necessarily every night.

Remember - to qualify for the middle rate of care component you need meet only one of the conditions listed above (chosen either from the day or night time list).

Tip - a child may still qualify for DLA care component even if they are at the more able end of the autism spectrum. They may, for example, have achieved a degree of independence, living without parents or carers. You will, however, need to show that their independence is created by a network of professional and family support (eg by regular daily visits or by travelling on pre-set routes), and that this support amounts to continual supervision even if the person is out of the sight of carers for periods of time. In these circumstances, the DWP will want to contact professionals to confirm the need for a support network.

Tip - if your child also has epilepsy they will qualify for DLA care component, provided the onset of an attack cannot be predicted and they do not have time to arrange help or go to a safe place.

How do I qualify for the higher care rate?

To qualify for care component at the higher rate your child must meet one of the daytime conditions and one of the night-time conditions too.

Other benefits

There are several advantages of qualifying for the middle or higher rates:

• it may increase the amount of Income Support, Council Tax Benefit and/or Housing Benefit paid to someone with autism (or the person caring for them)
• someone caring for a person who is awarded the care component at the higher or middle rates can qualify for Invalid Care Allowance
• If your child receives DLA at any rate you will qualify for the Disabled Child's premium
• If your child receives the highest rate of the care component of DLA you may qualify for the enhanced disability premium.
  

What happens at 16?

Until a child is 16, DLA care component will be paid to the parent or carer. When a child reaches 16 they can then apply in their own right. If they can manage their own affairs, the benefit book can be made out in their name. If not, it can be made out in the name of the parents/carers or any other named person.

The DWP may review the DLA care component at this stage, and some people find they lose the higher rate. If you feel the situation has not changed enough for this to happen, you should write and ask for a review. Similar procedures apply to the DLA mobility component.

DLA care component and respite care

Some children with autism receive DLA care component and have respite care in a hospital, or other respite care unit run by a local authority or voluntary agency.

There is a rule that prevents a child receiving DLA care component if they also receive more than a certain amount of respite care. This is known as the '28-day rule'.

If someone receives respite care for more than 28 days they will no longer be entitled to the full amount of care component of DLA. It does not have to be 28 consecutive days. The 28 days can be taken at weekends or as overnight stays during the week. They can be taken in a continuous period, or as a number of shorter stays.

However, for the purposes of the rule, if two or more shorter periods of respite care are separated by less than 28 days they will be added together and count towards the total number of days allowed (ie 28 days).

For example, if someone receives two full days of respite care every weekend this can continue for 14 weeks (2 x 14 = 28) without it affecting the care component. Once the 28-day limit is reached and the person continues to have respite care every weekend then they will only be paid five days of care component in every seven. In order for the person to receive their full entitlement they must spend 29 days in their own home. A new 28-day cycle can then begin.

Important the day on which a child moves into respite care and the day they travel home are no longer counted. For example, a child entering respite care on Friday and leaving the next Monday would have used two days of the respite care allowance.

If the 28-day limit is exceeded, however, you will eventually have to return the allowance book and may be required to pay back some of the DLA care component.

Note if a child under 16 is admitted to hospital they will be eligible to DLA care and mobility component for up to 84 days. In the case of adults, eligibility is for 28 days only.

How do I appeal?

Refused or low award

If you are refused DLA or are offered the care and/or mobility component at a lower rate than you hoped for, you can ask for a revision of the decision. If you aren't satisfied after the review, you can appeal. Look at your original claim form and see if there is more information you can use. If you don't have a copy of your original claim there will be one included with the appeal papers. It is now very difficult to obtain a copy of the original claim form unless you actually appeal.

Appealing

To appeal, write to your DLA unit (ask for their address at your DWP office). Ideally this will be done within one month of the date on the decision letter that outlines the decision you are appealing against. If it is later then you will be asked to show that 'special circumstances' applied that make it reasonable for you to be granted a late revision or appeal. You will be asked to attend Unified Appeal Tribunal, which consists of a doctor, a lawyer and someone experienced in working with the needs of people with disabilities. Before the hearing you must submit a full report to the tribunal, outlining your case.

At the meeting you will be asked questions about your child's mobility or care needs. You are allowed to bring someone to the tribunal who can advocate on your behalf and help you explain your case. You will stand more chance of success if your case has been carefully prepared. You may want to gather supporting evidence from people who know the mobility and care needs of your child, such as your GP, social worker, health visitor or community nurse.

Note - you may, of course, be receiving one component of DLA (at a rate you are happy with) but feel you have been wrongly assessed for the other component. In this case you can ask for a review of one component without the adjudicating officer or Unified Appeal Tribunal necessarily reassessing the other component.

However, a decision to award one component at the lower rate may raise questions about whether someone should be entitled to the other component at the higher rate. In these cases the decision makers and tribunal have the right to reassess both components.

However, where someone has been awarded a particular component indefinitely this is unlikely to happen, unless there is clear evidence that their situation has changed.

Note - if you request a review of any DLA award the revised decision may be worse than the original one. For example, if you appeal against an award of DLA care component at the middle rate, the revised assessment may put you on the lower rate.

Children and adults with autism who were refused the higher rate of mobility component since May 1997, because their IQ was above 55, may now qualify. Put in an appeal if you are still within the time limit or apply for the decision to be superseded.

If you were turned down since May 1997 (not on appeal) write a letter to the Blackpool office (address provided below) with information on the behavioural problems and impairment of useful intelligence that you observe. Ask for a supersession on error of law, and ask for the new level of DLA funding to be backdated to 29.10.99.

If you have lost a case for higher rate mobility component on appeal, there is a slightly different procedure to change a tribunal decision. Write to Disability Benefits Unit, DLA Unit, Warbreck House, Warbreck Hill Road, Blackpool, Lancashire FY2 OYE (tel: 08457 123 456) asking for the tribunal's decision to be superseded as it was made 'in ignorance of a material fact' ie the claimant was severely mentally impaired. Supply your evidence of this. (If your award is changed, it will be backdated to the date when a supersession was requested.)

If your request for either of the above applications is refused, you may appeal against that decision.

Evidence for your case should include:

• In the application, give details of the level of impairment of useful intelligence.
• Is the person lacking in 'insight' and 'sagacity'? Dictionary definitions of sagacity include practical wisdom, the ability to reason and deliberate, soundness of judgement and shrewdness.
• Are they able to apply their intelligence in a useful way in the real world?
• In what ways are they prevented from doing so by their impaired social capacities?

Ask for a copy of the case papers, in particular, the doctor's report. You may need to get more evidence to back up your case, ideally from a medical specialist.

* Don't forget to include the National Insurance number of the claimant.

References

Dixon, D. From claim to appeal: a guide to disability appeal tribunals for disabled people and their advisers. London: Disability Alliance ERA, 1994.

Greaves, I. Disability rights handbook. 32nd ed. London: Disability Alliance, 2007.
Published annually. Available from Disability Alliance, Universal House, 88-94 Wentworth Street, London, E1 7SA.

Mobility component and severe mental impairment. Disability Rights Bulletin Updates Supplement, Winter 1999, pp. ii-iii.

Further information

Further information on claiming DLA, or any other welfare benefit, can be obtained by contacting your local Citizens Advice Bureau (address in the phone book) or alternatively from:

The Benefit Enquiry Line
Tel: 0800 882200 or 0800 220674 in Northern Ireland (Monday - Friday 8.30am - 6.30pm, and Saturday 9.00am - 1.00pm)

Child Poverty Action Group. Welfare benefits and tax credits handbook. 10th ed. London: CPAG, 2008.

Dixon, D. From claim to appeal: a guide to disability appeal tribunals for disabled people and their advisers. London: Disability Alliance ERA, 1994.

Greaves, I. Claiming Disability Living Allowance: a self-help guide for disabled people aged 16-64. London: Disability Alliance, 2005.

Greaves, I. Disability rights handbook. 32nd ed. London: Disability Alliance, 2007.
Published annually. Available from Disability Alliance, Universal House, 88-94 Wentworth Street, London, E1 7SA.

Hall, D. Tell it like it is!: a guide to claiming Disability Living Allowance for a child with disabilities or special needs. London: Disability Alliance, 2004.

Vaux, G. 'What's in a word?' Community Care, 28 October - 3 November 2004, p. 47.
Available from the Community Care website at www.communitycare.co.uk  
Available from the NAS Information Centre

www.bhas.org.uk/freeguides/dla_guides.shtml  
This website contains useful information on all aspects of DLA including the appeals procedure.

www.direct.gov.uk/disability
Claims forms for the DLA can be downloaded from this site.

www.dwp.gov.uk/medical/med_conditions/a-z.asp

Medical guidance for DLA Decision Makers (at present the guidance does not cover children). The new guidance replaces sections in the Disability Handbook which will eventually be withdrawn. 

Related information sheets

• Benefits: challenging decisions
• Disability Living Allowance appeals
• DLA: guidance for adults with ASD completing the form
• DLA: keeping a diary
• DLA: tips for parents and carers (on filling in DLA forms).

Available from the Autism Helpline

For further information contact the Autism Helpline on 0845 070 4004.

Any item shown as available from the NAS Information Centre may be ordered at a cost of £3.00 per article/book chapter, subject to copyright restrictions. Please complete a copyright declaration form and post it with your payment to the NAS Information Centre, 393 City Road, London EC1V 1NG, or fax to +44(0)20 7833 9666.

Autism Data, the NAS database of books, articles and multimedia on autism, is available to search on the NAS website at www.autism.org.uk/autismdata

Information Centre, The National Autistic Society, 393 City Road, London EC1V 1NG:
Tel: + 44 (0)20 7903 3599 or 0845 070 4004

Last updated: May 2009
© The National Autistic Society 2009

Related resources

• DLA: keeping a diary
  
• DLA (Disability Living Allowance): tips for parents and carers
  
• Claiming Disability Living Allowance - a personal account
  

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