Some people who have Kabuki Syndrome may be eligable for Disability Living Allowance. The forms are available to download from the government webiste here
The following information is respectfully taken from the Citizen's Advice website which can be found at www.adviceguide.org.uk
Disability Living Allowance
The Department for Work and Pensions (DWP) provide a Disability Living Allowance Helpline. The helpline can arrange help filling out claim forms over the phone when you are applying for Disability Living Allowance.
You can contact the Helpline on:
Tel: 08457 123 456Textphone: 08457 224 433
You can also use the RNID Typetalk service.
The Helpline is open 8.00 am to 6.00 pm Monday to Friday.
Disability Living Allowance (DLA) is gradually being replaced by Personal Independence Payment (PIP).
From 10 June 2013, in England, Wales and Scotland, you cannot make a new claim for Disability Living Allowance unless you are under 16. So the information below applies only to:
- people under 16
- people who are already getting Disability Living Allowance
- people in Northern Ireland.
What is Disability Living Allowance
Disability Living Allowance (DLA) is a benefit for disabled people under 65. To get DLA, you must have personal care needs or difficulty with walking (also called mobility) because of either a physical or mental disability. DLA has two parts, the care component and the mobility component. The care component is paid at three rates depending on how often and how much you need care. The mobility component is paid at two rates, depending on how much difficulty you have with walking. Depending on your needs, you may get one component of DLA, or both together.
Who can get Disability Living Allowance
You can get Disability Living Allowance (DLA) if:
- you claim before you are 65, and
- you have had care needs or mobility needs for at least three months, and
- you are likely to have these needs for at least another six months.
From 10 June 2013, you can't make a new claim for DLA in England, Wales and Scotland if you're 16 or over. You may be able to claim Personal Independence Payment (PIP) instead. If you are already getting DLA, you may be able to renew your claim, but in some cases, the DWP will require you to claim PIP instead.
If you are already getting DLA when you reach 65, you can continue to get it as long as you still have care or mobility needs or until the DWP asks you to claim PIP instead. The DWP will only ask you to claim PIP instead if you were under 65 on 8 April 2013.
If you are terminally ill and not expected to live for more than another six months, there are special rules for claiming DLA.
There are also special rules for children under the age of 16.
You will not usually be able to get DLA if you have been in hospital for more than four weeks, or more than 12 weeks for a child under 16. If you move into a care home and your local council is helping you with your fees, the care component of DLA will stop after four weeks, but you can usually continue to get the mobility component.
To get DLA, you must have lived in the UK for two years in the last three years. However, this rule doesn't apply to people who are terminally ill. The rule also doesn't apply to members of the armed forces serving abroad or to certain EEA or Swiss nationals living in the UK. You must be living in the UK when you make a claim for DLA and the UK must be your 'habitual' (normal) place of residence. You must not have any immigration controls on your stay here that would stop you getting the benefit.
It may be possible to carrying on getting the care component of DLA if you move to another EEA country or Switzerland. You may also be able to claim for the first time if you’re living in one of these countries.
You can get DLA whether or not you work. It isn't usually affected by any savings or income you may have.
There is more information about Disability Living Allowance' on the GOV.UK website at .
If you are not sure if you can get DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau.
You have care needs if:
- you need help with things like eating, washing, getting dressed, going to the toilet or communicating your needs
- you need someone to supervise you to stop you being a danger to yourself or others
- you need someone with you when you are on dialysis. You must need to have dialysis at least twice a week. If you're an out-patient, you will only get DLA if no member of the hospital staff helps you with or supervises the treatment
- you need someone with you to help you lead a normal social life.
You do not actually have to be getting help for your care needs to qualify for DLA. As long as you have a care need, it does not matter whether you are actually getting care.
The care component of Disability Living Allowance (DLA) is paid at three different rates. You get the lower rate if you need help with cooking a main meal or care for a significant part of the day. You get the middle rate if you need frequent care throughout the day or night, or continual supervision throughout the day or night. You can also get the middle rate if you need someone with you while you're on dialysis. You get the higher rate if you need frequent care or supervision throughout the day and night, or if you are terminally ill.
There are slightly different rules if you are claiming the care component for a child under the age of 16.
Care component - rates
Care component Weekly rates from 8 April 2013 Weekly rates from 7 April 2014
Higher rate £79.15 £81.30
Middle rate £53.00 £54.45
Lower rate £21.00£ 21.55
If you want to know more about how to qualify for the care component of DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
The mobility component of DLA is paid at two different rates.
You get the lower rate if you cannot walk outdoors on an unfamiliar route without guidance or supervision from another person for most of the time. This could be because of either a physical or mental disability.
Some examples of when you might be entitled to the lower rate of the mobility component include if you:
- have mental health problems which affect your ability to walk
- have learning difficulties and have only learned familiar routes
- have dementia
- are blind or partially sighted. However, you will qualify for the higher rate mobility component of DLA if you have a severe visual impairment.
- are deaf and have not learned how to cope safely with traffic
- have epilepsy
- have panic attacks - but this must be a symptom of a mental disability
- suffer from phobias, obsessive behaviour or have no sense of danger - but this must be a symptom of a mental disability
- have severe agoraphobia, that is, a fear of being outside.
You get the higher rate mobility component if you're unable or virtually unable to walk because of pain, the effect on your health or the limitations on your walking. You can only get the higher rate if:
- your difficulties with walking are caused by a physical disability, or
- you have severe learning difficulties or severe behavioural problems and you qualify for thehigher rate care component.
If you are blind and deaf and you use a guide dog, you will still qualify for the DLA mobility component if you can show that you would need help from another person if you didn't have the dog, or if you were using a new route unfamiliar to the dog.
You will qualify for the higher rate mobility component of DLA if you have a severe visual impairment.
You do not actually have to be receiving help with your mobility needs to get the mobility component of DLA, as long as you can show that you need it.
There are special rules if you are claiming the mobility component for a child under the age of 16.
Mobility component - rates
Mobility component Weekly rate from 8 April 2013 Weekly rates from 7 April 2014
Higher rate £55.25 £56.75
Lower rate £21.00 £21.55
If you want to know more about how to qualify for the mobility component of DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
Disability Living Allowance for children
Disability Living Allowance (DLA) can be paid for children under 16, but there are extra conditions about their care and mobility needs.
To get the care component of DLA, a child must meet the same conditions as an adult, but they must also show that they need a lot more care or supervision than other children of the same age. For example, a child aged under 16 cannot get the DLA care component just because they are unable to cook a main meal for themselves.
You can make a claim for the care component of DLA as soon as a child is born, but you won't be paid any benefit until the child is three months old. The extra conditions no longer apply when the child reaches the age of 16.
If the child is terminally ill, special rules apply.
Children under 16 can't get the mobility component of DLA until they are three, for the higher rate, or five, for the lower rate. To get the lower rate, they must also need more help or supervision than other children of the same age. This extra condition no longer applies, once the child reaches the age of 16.
Children under 16 can't make a claim for DLA in their own right - another person, authorised by the Department for Work and Pensions, must make the claim on their behalf. This person is called an appointee and will usually be the child’s parent or guardian.
If you are a disabled young person under 16 or you are responsible for a disabled child and need to claim DLA on their behalf, you should consult an experienced adviser, for example, at a Citizens Advice Bureau. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
How to apply for Disability Living Allowance
You can only make a new claim for DLA if you're under 16 or you live in Northern Ireland. There are several ways of claiming DLA.
The Disability Living Allowance Helpline
You can claim DLA by phoning the Disability Living Allowance Helpline and asking them to send you a claim form. They can send you the claim pack in an alternative format if needed - for example, Braille. They can also arrange for someone to help you fill out the form if required.
If you request a form from the Helpline, the date of request will be treated as your date of claim from which DLA can be paid, as long as the form you receive is returned within six weeks of that date. If you delay making a claim, you may lose out on benefit.
Downloading a form from the GOV.UK website
In England, Wales and Scotland, you can download a claim form from the GOV.UK website to print off and fill in on paper. Or you can complete a claim form on your computer, then print it off and sign it. Go to .
In Northern Ireland you can download a form from the nidirect website . You cannot complete a claim form and then print it off in Northern Ireland.
For help completing the form, contact the Disability Living Allowance Helpline.
You cannot get DLA for any period before you make your claim.
You will have to provide your national insurance number and proof that it belongs to you. If you think you have a national insurance number but you do not know what it is, you should provide information to help the office find it. If you do not have a national insurance number, you will have to apply for one.
If you need more time to return all the information needed, you should let the office dealing with your claim know.
The claim form for DLA is long and you can get help completing it. You can use the forms completion service offered by the Disability Living Allowance Helpline. Alternatively, you could consult an adviser, for example, at a Citizens Advice Bureau. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
After the DWP receives your form, you may need to have a medical examination. For more information about medical examinations when you claim DLA, go to the GOV.UK website at .
In Northern Ireland go to the nidirect website at .
You may need help to claim or collect benefits.
Once you have made your claim, you can get advice on Disability Living Allowance from the Disability Living Allowance Helpline who should have access to your records.
In Northern Ireland you can contact the Disability and Carers Service. The contact details are:
Tel: 028 9090 6182Textphone: 0800 243 787E-mail:
It will usually take around 39 working days to deal with a new claim, unless the claim is made under the special rules, in which case it will be dealt with much more quickly.
How is Disability Living Allowance paid
Disability Living Allowance (DLA) is usually paid directly into your bank, building society or Post Office card account. If you cannot open or manage an account, you can be paid by Simple Payment. The DWP will give you a Simple Payment card which you can use to collect your benefit at a PayPoint outlet displaying the Simple Payment sign.
For more information about payment of benefits, see Payment of benefits and tax credits.
DLA is paid as long as you have care or mobility needs. It may be awarded for an indefinite period or a fixed period. However, the benefit is affected if you go into hospital, and for the care component if you go into a care home or other residential accommodation that is state funded.
Civil penalties for causing an overpayment
In some cases, you may have to pay a civil penalty if you do something which causes an overpayment. This can happen if, for example, you give wrong information or you keep quiet about something, and as a result you get more Disability Living Allowance than you're supposed to be getting. You can only be asked to pay this penalty if you haven't committed fraud. If you have committed fraud, different rules apply. You can appeal against a decision to impose a civil penalty.
Disability Living Allowance, change of circumstances and fraud
You may commit a benefit fraud if you give incorrect or misleading information, or fail to report a change of circumstances that could affect your Disability Living Allowance (DLA). Even if you are not committing fraud, you can cause an overpayment that will have to be repaid. Your circumstances can be checked at any time while you are claiming. Benefit fraud is a criminal offence and you can be prosecuted or asked to pay a penalty. If you are being investigated for benefit fraud, your benefit may be suspended.
For more information on what to do if you are asked to attend an interview under caution, see Problems with benefits and tax credits.
If your circumstances change so that you think you might be entitled to a higher or lower component of DLA or you think you might be entitled to more than one component when you have just been receiving one, you should tell the Department for Work and Pensions (DWP) as soon as possible. From 28 October 2013 in some parts of England and in Wales, if you're 16 or over and you report a change that might affect the rate of DLA that you get, the DWP will invite you to make a claim for Personal Independence Payment (PIP) instead. Once they have asked you to claim PIP, your DLA will eventually end whether you claim PIP or not.
More about when and where you'll be reassessed for PIP if you're getting DLA
If you are worried about whether you might be suspected of fraud, you are under investigation or you have been convicted, or if you have been asked to repay an overpayment of benefit, you should consult an experienced adviser, for example, at a Citizens’ Advice Bureau. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
Problems with Disability Living Allowance
If you are refused Disability Living Allowance (DLA), or get less than you think you should, you can challenge the decision. You should do this within one month of the decision.
There is helpful information about DLA appeals on the Advicenow website at .
If you are thinking of asking for a decision to be looked at again or of appealing against it, you should get expert advice. This is because there might be a risk that your Disability Living Allowance could be reduced or even stopped. Your local Citizens Advice Bureau should be able to help. To search for details of your nearest CAB, including those that can give advice by email, click on nearest CAB.
I am a wheelchair user and I claim Disability Living Allowance. They were investigating me for fraud and came to my house to interview me. They did not ask me any questions face-to-face and addressed all their questions to my support worker. It turned out OK for me – they did not continue with the fraud investigation but I still felt humiliated. Can I complain?
Yes, you can complain if you are not treated politely because of your disability. An experienced adviser, for example, at a Citizens Advice Bureau, could help you with your complaint.
If you are not happy with the standard of service you have received from the benefits office, the Department for Work and Pensions, the Social Security Agency in Northern Ireland or any of the helplines, you can complain. This might be because of delays, errors, rudeness or difficulties in making contact. You can complain whether or not you also want to challenge a decision.
It's against the law for you to be treated unfairly because of age, disability, gender reassignment, pregnancy or childbirth, race, religion, sex or sexual orientation when benefits or tax credits are paid to you. Also, the Department for Work and Pensions, HM Revenue and Customs and most local authorities have policies which say they will not discriminate against you because of other things, for example, if you have caring responsibilities. If you feel that you've been discriminated against when you are paid benefits or tax credits, you can make a complaint about this.