Claiming Benefits

Claiming benefits may be easier than you think and if you are entitled to a benefit then claim it!

DLA has two parts: the care component and the mobility component (3yrs up). Your child may get the care component, the mobility component or both.

The Care Component of Disability Living Allowance (DLA) can be claimed by a parent/carer for a child from the age of three months who needs help with personal care.

You need to show that the child needs care substantially in excess of the normal requirements of children of the same age.

It is paid to the child but can be paid into an account in the parent/carers name.

It is not means tested (ie. The amount of your income and savings or your childs income or savings does not matter), it is not taxable and does not reduce any means tested benefits you may receive (eg Income Support). You may get more benefit if your child receives DLA.

DLA can be paid on top of all other benefits.

It will be paid at one of three rates: higher, middle or lower depending on how much your child's disability affects them.



Higher Rate
Your child will get this if they are terminally ill or satisfy one of the day conditions and one of the night conditions. (see below)


Middle Rate
Your child will get this if they satisfy one of the day conditions or one of the night conditions. (see below)


Lower Rate
Your child will get this if they require help with 'bodily functions' for a 'significant proportion of the day'. (see below)



Day Conditions - must need frequent attention throughout the day in connection with bodily functions or continual supervision throughout the day to avoid substantial danger to yourself or others (eg. your child needs watching more than a normal child of his/her age)

Night Conditions - your child must need repeated of prolonged attention throughout the night in connection with bodily functions (eg. changing nappies particularly if on diuretics, feed pumps alarming, saturation monitors alarming, leg pains) and for the purpose of watching over the child in order to avoid harm to themselves (particularly if on overnight feeds, oxygen)

Attention with bodily functions means extra help that your child needs over and above that of a normal child of their age with getting out of bed, bathing, eating, drinking, sitting down, walking, communicating, getting dressed.


Continued supervision means frequent or regular but not non-stop.

Your child also has to meet other 'non-disability conditions'. (see below)

On 9 April 2001 the law changed to allow children aged 3 and 4 to qualify for the higher rate of the mobility component of DLA.
The forms will normally be sent to you automatically just before the childs third birthday if you are already in receipt of the Higher Rate Care Component otherwise you will be eligible to apply when the child is five.

It is paid to someone who needs help with getting around out of doors. Once again you need
to show that the child needs help substantially in excess of a normal child of the same age.

If your child gets the higher rate of the mobility component for 3 years or more you can get a new or used car by hire purchase through the organisation Motability, using the benefit.

If your child gets the higher rate you will be sent forms to apply for exemption from road tax providing the car is used mainly for the purposes of your child.
The 'Orange Badge Scheme' is run by local councils in England and Wales and this entitles you to park in some, but not all, parking restricted areas.
They are usually issued once a child is 2 or older and

* Your child receives the higher rate of the mobility component or
* Your council accepts that your child has a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking.
Some councils, however, may issue earlier depending on circumstances ie. amount of equipment that may be necessary to carry when out.



To get DLA your child has to be
* Ordinarily resident in Great Britain AND
* Present in Great Britain AND
* Your child has to have been present in Great Britain for a total of 26 weeks in the past 12 months (babies under 6 months old only need to have been present for 13 weeks out of the last 26 weeks.

For both Care Component and Mobility you must show that your child has satisfied the conditions for 3 months before you claim and is likely to satisfy them for 6 months after you claim.

These apply to people who are terminally ill and who are expected to die within the next 6 months. The qualifying period does not apply in these cases. (The majority of people can ignore this form).

If you fall into this category then you only need to fill out Section 1 from the DLA pack and either your GP or the childs Consultant will need to fill out an SF1500.

You may not get DLA if your child is in hospital or residential care.
You should inform the Disability Unit when your child goes into hospital or when they come out of hospital.
For a child under 16 DLA will usually stop after 12 weeks but it may be possible to be paid for any periods at home eg. week-ends.

The Mobility Component can still be claimed.

DLA Care Component:

* Higher Rate £60.60
* Middle Rate £40.55
* Lower Rate £16.05



Mobility Component:

* Higher Rate £42.30
* Lower Rate £16.05



These amounts are shown as a guide (August 2005 - DWP website)

These notes have been put together by parents of children with Di George Syndrome and are by no means exhaustive. It is important that you seek advice from one of the 'Sources of Information' listed at the bottom if you are unsure of anything.
Max Appeal! cannot be held responsible for failure to obtain any benefit through the use of these notes.



The claim form for DLA will look very long and complicated at first. Whether you are filling out these forms for the first time or to renew your childs claim we hope these guidance notes will be of some help.



When filling out the DLA claim form you may find it upsetting especially if you are still coming to terms with the fact that your child has a medical condition/special need. It will make you look at the negative aspects - what he/she cannot do rather than what they can but it is important to remember that that is the reason why you are able to claim.
At the same time however it is important not to underestimate your childs needs when filling out the form.

Getting DLA does not depend which illness or condition a child has but how that illness/condition affects them as an individual.

To get a copy of the form telephone 0800 88 22 00 and ask for a claim form for Disability Living Allowance for a child.
When it arrives it will have two dates stamped on it. One will be the date you rang the Agency the other the date by which the form must be returned. If it is returned before/by this due date your claim will be paid from the date you asked for the form. If you return it after the second date the date of your claim will be the date the form is received by the Agency.

The form comes in four parts:
* Section 1 - this requests general information about the person applying; about the child; payment details; a general overview of the childs illness or disability; general information on hospital/residential care; who you want them to ask about the childs illness/disability (make sure you have asked these people before putting their names on the form); the childs GP, hospital doctor or specialist.
* Section 2 (two parts)
Care Component - About help with personal care
Mobility Component - About help with getting around
* A fourth form ' More about how your illness or disability affects you'

Remember that the people who make the decisions about DLA are not doctors so include as much information as you can.

As a group we will be working towards gaining an entry for 22q11.2 deletion/Di George Syndrome/VCFS in the 'Disability Handbook' that they have but at present they are very reliant on YOUR information.

* Your child may be refused completely
* Your child may be awarded a rate you are not happy with or be awarded for a specific time period ie. 2 years.

These decisions can happen on both new and renewal claims.
You can ask for the decision to be reviewed by another person or you can appeal to a tribunal, usually after a review has been unsuccessful.

You may be entitled to other benefits or already be receiving them.
If you are already getting benefits such as Income Support, Income based Job Seekers Allowance, Housing Benefit, Council Tax Benefit or Working Families Tax Credit you may get some extra money when your child starts to get Disability Living Allowance.

Check with you local Benefits Agency office or your Local Council as appropriate.

These should be sent to you automatically about six months before the award is up.
Benefit will not normally be backdated if you do not claim before the end of the award.
Forms still need to be filled out in the same amount of detail as the first time as the Benefits Agency can refuse or reduce benefit if they do not get full information.

How your childs illness or disability affects them (heart conditions)

Someone keeping an eye on them
During the day and during the night - to watch out for heart failure and signs of it before it happens
How many days/nights a week does the child need someone with them?
How much of the day night do they need someone with them?
Roughly how long do they need someone with them each time during the day/night



About the childs development
If your child has a speech problem say what type of problem ie. palate (detail the problem); if they have speech therapy say how often and any exercises you have to do; remember all these things are on going. Are they better with 1:1



Does the child have delay in their development of learning skills?
If a child of 2 years is doing what a normal 15month old would do.
If your child finds it difficult to interact with others explain why ie. difficulty communicating
If you are constantly encouraging, repeating tasks and praising for achievement



Does someone need to help the child develop through play?
Does your child receive Portage (home teaching); does your child attend a Child Development Centre and if so expand on what they do there.



Waking, getting up and going to bed
Does your child have to be woken up for medication, bed wetting, vomiting? If your child is tube fed does he have to be woken up because of position in bed



Washing and bathing
Does your child have difficulties having a bath or shower. If your child has problems with co-ordination skills and needs help say what you do at these times.

Does your child have bad enamel on his teeth due to lack of calcium - say you have to observe it and brush their teeth when younger while encouraging them to learn too but also because there is a risk of endocarditis from bad oral hygiene.



Getting Dressed or undressed
If your child is on diuretics you will have to change your childs nappy more frequently.
If your child is still in nappies when a normal child of the same age wouldn't be say you have to buy more nappies for day and night. (Ask your Health Visitor about any Incontinence Services in your area - you may be entitled to free nappies)



Communicating with other people
Does the child need help understanding other people?
If your child has no speech say why not and that no one would then understand him.



Does the child need help being understood by other people?
If your child does not speak but uses sign language eg Makaton or PECS say so and explain how you do this
Explain that your child gets frustrated when he is not understood.



Eating and drinking
If your child does not eat a lot and/or is tube fed say how you have to encourage your child to eat small amounts eg. allowing them to play with a toy while you get a spoonful of food in their mouth.
If your child has a palate problem that affects the way they eat say so.
Say what happens to your child when they eat ie if food or milk comes down their nose, if they have a tendency to gag or choke and how this can cause aspiration onto the lungs.
If your child is bottle fed and they should be feeding themselves say so.



Help with medication
Always say which medication your child is on - if they are taking their medication by mouth (orally) say how long this takes - some children will take longer than others with certain medicines.
If your child has their medication through a tube explain the aspirating and flushing of the tube every time you put something down the tube.


Anything else about the way the child is affected by their health or disabilities
Does your child sleep well at night? If tube fed say how many times in the night you have to go in and sort your child out including setting up any feed pumps, oxygen therapy, warming up feeds, changing nappies, changing the child and the bedclothes if the child has been sick. If your child suffers from reflux say how many times you have to go in to check they are okay and if they have to be in a certain position to make sure they are.
Do you have to go in for pumps alarming, blocked tubes etc.
If your child has a heart condition how often do you check on them, do you check how warm they are, their breathing?
Does your child suffer from leg pains and if so how often to you get up for this and say
what you do and how long it takes and then how long it takes to settle them back off.
Does your child keep getting out of bed and wondering around. If so say what you have to do to get them back into bed and settle them.
Does your child have behavioural problems connecting to sleep ie they may not need a lot of sleep - explain in full.
Does your child suffer nightmares?
Does your child wake for a drink in the night?
There are many children with this condition that wake in the night and will experience at least two of the above. Think what you experience with your child before you fill out your form.

If your child has special educational needs add this to your form. You can explain their delays, if they are statemented and any extra help you give or the child receives out of school.

If your child has low self esteem explain fully how it affects the child and those around them.



Statement from someone who knows the child
Try and get either a Consultant (hospital or community) or your GP if they know the child well to do this section.

Does your child have difficulties walking?

Be very clear on the distance that they can walk.
Explain what the difficulties are - they get tired, breathy, get leg pains, refuse to walk, can't walk. If their condition is affecting their mobility explain this in full.

Does your child need someone with them outdoors?
Explain why they need someone outdoors with them all the time - what danger could they be in ie. if they have a communication problem.

Anything else about the way the child's ability to get around is affected by their illnesses or disabilities
Try and give examples by comparing them with children of either friends or family who are the same age. Do you still use a pushchair, does you child suffer from leg pains, do you carry them up and down stairs, is your child clumsy or do they fall over when walking putting themselves and others in danger

EVERY CHILD WITH THIS CONDITION IS DIFFERENT - MAKE SURE YOU LIST EVERY PROBLEM RELEVENT TO YOUR CHILD.
Read your form again and even if necessary repeat information from one question to the next.
Keep emphasizing!! If your child is 0 to 2 years remember this is an important time in their life for development. Emphasize their delays and the extra help they need
Include times that you have for hospital check ups, speech therapy, physiotherapy etc.

Always tell the truth about your child - a Doctor may be asked to visit you by the Disabilities Unit

Ask a Social Worker from the hospital for help in filling out your forms if you need to.



ALWAYS KEEP A COPY OF YOUR FORMS FOR FUTURE REFERENCE



If your child gets Middle or Higher Rate of the Care Component, someone looking after them may be able to get Invalid Care Allowance.

You may get ICA if:
*You look after someone getting the middle or higher rate of the Care Component of DLA for 35 hours or more a week
* You do not work or work and do not earn more than £82 a week (certain expenses are deducted)
* You are not a student

ICA is £45.70 per week and IS A TAXABLE BENEFIT.

Apply for ICA when you claim DLA. Your ICA will be backdated although you will not get a decision on your ICA claim until your DLA claim is decided.

Income support is extra money to top up benefits and low incomes.
You can get income support if:
* You are 18 or over (some 16 & 17 year olds can still make claims AND
* Working less than 16 hours a week (some people with disabilities who work for 16 hours or more per work can claim) AND
* Not in full time education (people with disabilities in special education can claim) AND
* Living in the United Kingdom AND
* Available for work (unless you are a person who has a disability or you care for someone and get Invalid Care Allowance AND
* Have capital under £800


Housing Costs
If you get Income support you can get help with you mortgage interest payments, ground rent and service charges.


Free School Meals
Free school meals (and free school milk) are available to children of families on Income Support.


Health Benefits
If you get Income Support you can also get help towards the cost of glasses, free dental treatment, free prescriptions and the cost of fares to attend hospital for treatment.

For families on low or middle incomes who are responsible for one or more children.
* For one or two parent families.
* Working on average 16 hours a week or more. You may get more WFTC if you or your partner work over 30 hours a week.
* Voluntary work does not count towards the 16 hours.
* You can get WFTC if you are employed or self-employed.
* You maybe able to get help with childcare costs.
* Savings over £8000 mean you cannot get Working Families Tax Credit.
* If you are not working because you have had (or are expecting a baby) you may still apply for WFTC, but you must have been working for at least 16 hours per week before you stopped work.
* Tax Credit Helpline 0845 609 5000

You do not have to be getting any other benefits to claim. Anyone can claim if they have to pay Council Tax and have savings of less than £16000.
If you get Income Support you will usually get all your Council Tax paid.

It is sometimes possible to get a reduction in your Council Tax if your home has certain facilities for someone with a disability ie. some other room which is mainly used by the person with disabilities because of their special needs eg. a second bathroom, downstairs bedroom and in some cases where a bedroom is used solely by the disabled person due to all the medical equipment they have.
It is worth speaking to your local Council Tax Department first as most areas will operate differently and a council representative may wish to visit your home to clarify the situation.

Anyone can claim Housing Benefit if they pay rent and have savings of less than £16000.
You can claim even if you are working.
If you get Income Support you will usually get maximum Housing Benefit.
It is money towards your rent and is paid by the Council's Benefit Service. You can claim if you are the tenant of a Private Landlord, Housing Association or Council Tenant.

If you get Income Support you can claim from the Social Fund provided you have savings of less than £500 (£1000 if you are aged 60 or over).
The Social Fund provides grants and loans to help meet one-off expenses eg furniture, bedding, clothes.

*Helps you protect your basic retirement pension
* If you are unable to work or your earnings are low and you have caring responsibilities at home you may be able to get HRP.


If you get Child Benefit in your name for a child under the age of 16 or Income Support because you are caring for someone you should get HRP automatically.
If you get Invalid Carers Allowance you will get National Insurance credits and will not usually need HRP.

If you are the person staying at home bringing up children it is important that YOU claim Child Benefit to protect your National Insurance contributions.

* A benefit for people bringing up children
* It is paid for each child
* The amount received per child is not affected by income or savings
* You do not have to be the childs parent to get Child Benefit. You may get Child Benefit if you pay towards bringing up a child who does not live with you and no one else is claiming the benefit for them eg. if your child is long term hospitalised.

* General Practitioner (GP) - your GP may be your first point of contact and will therefore make the referrals to other specialist services as required. Your Health Visitor & Community Paediatric Nurse may also work from the surgery/Health Centre.
* Social Services - there will be a local office close to you with a duty officer available during office hours and most hospitals will have a social work office too. They will be able to advise you on what is available and help with any forms/assessments that maybe required.
* Citizens Advice Bureau - provides free, impartial and confidential advice and information on a wide range of topics.
* Neighbourhood Office - deal with housing enquiries (allocation, transfers, rent payments and repairs), welfare benefits advice and a wide range of general advice and information.
* Department for Work & Pensions Website - www.dwp.gov.uk
* Princess Royal Trust for Carers
More information from:
http://www.dwp.gov.uk


Disability Living Allowance Unit
Warbreck House
Blackpool
Lancashire
FY2 0YE
Tel: 0845 712 3456 (local call rate)




Invalid Care Allowance Unit
Palatine House
Lancaster Road
Preston
PR1 1NS
Tel: 01253 856123



Motability
Goodman House
Station Approach
Harlow
Essex
M20 1ET
Tel: 01279 635666



Benefits Agency Enquiry Line

Tel: 0800 882200



The Family Fund Trust
P O Box 50
York
YO1 9ZX
Tel: 01904 621115
email: info@familyfundtrust.org.uk click here
www.familyfundtrust.org.uk

An independent organisation registered as a charity, funded by the governments of England, Northern Ireland, Scotland and Wales to help ease the stress on families in the UK who care for severely disabled children under 16, by providing grants and information related to the care of the child.



They help families who are
* Living in the UK and caring at home for a severely disabled child under 16 and
* Whose income before deductions is not more than £21,000 per year and who have savings of £8,000 or less (April 2002)

What kind of help does the trust give?
* Holidays/leisure activities
* Washing machine/tumble dryer because of constant bed wetting/dirty clothing
* Bedding and clothing to cover the expense of wear and tear because of the child's disability
* Fridge freezer eg. if the child's disability makes shopping difficult or the child has special dietary needs
* Play equipment if related to the child's special needs
(the above list is not exhaustive)

Every child is different and 'severe disability' depends on many things including the child's age, how much his/her abilities are already affected and how much attention he/she needs.
A child may not necessarily qualify for help when a condition is first diagnosed but may do so at a later date.

For more information contact:

The Family Fund Trust
P O Box 50
York
YO1 9ZX

Tel: 01904 621115
www.familyfundtrust.org.uk
email: info@familyfundtrust.org.uk

The Princess Royal Trust (Walsall Carers Centre) - for use of "Your Carers Fact File"

Down Syndrome Association
Inland Revenue
Department for Work and Pensions