• Disability Living Allowance (DLA)
• Employment and support allowance (ESA)
• Incapacity Benefit in Youth (IBY)
• Income support (IS)
• Other sources of financial help

Disability Living Allowance (DLA)

DLA isn't taxed and income from DLA is 'disregarded', that is, not taken into account if you or your child claim other benefits. DLA is a passport to other sorts of financial help. If you claim other benefits because you are on a low income, it's always worth saying that your child gets DLA: there are often extra benefits or tax credits for parents whose children get DLA. If a young person claims benefits as an adult, getting DLA can entitle them to extra disability premiums and credits.

Awards for DLA are usually reviewed in the six months before a child reaches 16, so claiming DLA as an adult is often the first time young people have to think about their ability to manage significant amounts of money. In reality most disabled young people don't feel ready to take on this responsibility and ask their parents to look after their money for them, to pay their bills and give them an allowance. This means taking on the role of 'appointee'.

Getting a claim pack

If you haven't thought of claiming before, it's best to get the forms from the DWP as they will stamp the form with two dates. The first is the date you phoned to ask for it and the other is six weeks later. As long as you send the form back within six weeks, the claim, if it's successful, can start from that date.

You can download a claim pack at the Directgov website or ring on 0845 7123456 or text phone on 0845 722 4433.

Make sure you are sent the right claim pack. Be sure to say the age of your child, as the forms for children and adults are different. If your child is nearly sixteen, expect to fill in an adult claim form.

Making a claim

It's really important to concentrate on what a young person can't do: you need to 'tell it how it is'.

The forms are long and detailed and it's worth getting help to fill them in. Ask a friend to help. Other parents who have children with similar problems can be a great source of information about what to say and what not to say. It's really important to concentrate on what a young person can't do: you need to 'tell it how it is'. Young people are often the ones who know best how their illness or disability affects them, so think about how you can involve them in making this claim. 

Unpicking the jargon

To make a successful claim for DLA you will need to show that a disabled young person 'requires' substantially more 'attention' in connection with their 'bodily functions' than that usually required by adults. Or 'continual supervision to avoid substantial danger' or someone 'to be awake for a prolonged period or at frequent intervals' at night to 'watch over you' . What does all this jargon mean?

• 'a person must require' does not mean medically require, it means reasonably require. For example, a young person with a speech and language disorder may have a reasonable requirement for attention from another person to help make themselves understood and to make sense of what others are saying and their intentions.
• 'attention' is help from another person to do the personal things a young person cannot do for themselves.
• 'bodily functions' are anything to do with how your body works and what it does.
• 'continual supervision' means a young person needs someone around to minimise the risk of them coming to harm or putting others in danger.
• a 'prolonged period' is at least 20 minutes.
• 'frequent intervals' means at least three times a night.
• 'watch over you' means that someone is awake and alert and getting up to check on a young person.

Be aware that there is a very long list of what counts as bodily functions:  breathing, hearing, seeing, talking, listening, signing, reading, eating, drinking, walking, sitting, maintaining good posture, sleeping, turning, changing bedclothes in the night, eliminating waste products, getting in and out of bed, the bath, chair, washing, shampooing hair, cleaning teeth, brushing hair, dressing and undressing, help with medication or therapies, managing feelings and behaviour, thinking, problem solving, making choices, being prompted, reminded or encouraged.

What counts as help?

All sorts of things count as help. These can include:

• the resourcefulness, time and energy you put into helping your teenager learn what other young people seem to pick up effortlessly.
• practical and 'hands on' help, or prompting and encouragement with everyday activities like dressing, washing, and toileting, cooking or even getting along with other people.
• the 'thinking' you do to anticipate and manage potential difficulties.
• the ways you adapt your communication: some disabled young people need help to make themselves understood, make sense of what's going on around them, or to manage difficult feelings like anger or anxiety.
• nursing or therapeutic help: monitoring a young person's medical condition, giving medication, helping a young person use special equipment or carry out a therapy programme.
• help to get out and about, and to keep safe.

Don't underestimate the help your child needs. Some young people need much more help than others. Even if your child needs extra help with just some of the things we have mentioned, we think it's worth making a claim for DLA.

What's different about the adult DLA claim form?

Many parents will be used to claiming DLA for their child: similar rules apply about how decisions are made about awards for adults and the benefit rates are the same as for children. A big difference is that your teenager's needs for care or supervision only need to be greater than another adult's as a result of their illness or disability. This is a much more straightforward rule than 'greater than another child of the same age who does not have that illness or disability'. Nevertheless, it can only help to continue to make comparisons between your teenager, their peers and younger siblings if this is relevant.

As you tackle each page, remember to think: what's the impairment or disability, what's the problem arising from this, what's the help my child needs and what would happen if they didn't get this help. This is what you should write about in the boxes.

If you are used to making claims for DLA, the claim pack will look unfamiliar. Amaze has seen DLA claim packs in three different paper formats recently, each looking very different.

If your child is already getting DLA you may be sent the shortest pack. This basically asks you to sign where nothing has changed and to fill in one page to describe any changes. Whichever claim pack you are sent, we think it's worth taking the time to give as clear a picture of your child's needs as possible.

Even in the most detailed claim pack, the importance of play and learning disappears. Issues around communication are condensed into one page and include problems your child may have using a telephone, reading and writing, managing forms and letters as well as making themselves understood, understanding other people and their social skills. But what's really new about the adult claim pack is 'the cooking test'.

The cooking test

To fail the cooking test, you need to demonstrate that as a consequence of their disability a young person cannot prepare a cooked main meal for themselves without help. This help can be:

• reading instructions and labels, guidance to follow a recipe
• identifying, weighing and measuring ingredients
• putting basic food safety and hygiene into practise
• using sharp knives, hot pans, cookers and other equipment safely
• recognising when food is properly cooked or safe to eat 
• timing it all so that everything's ready together

The importance of extra evidence

Look out the most recent advices and reports you have about your teenager and read through them. They can often help you understand the underlying reasons why your teenager appears clumsy or 'not to listen'.

Send off copies of your child's latest statement of special educational needs and any medical, speech and language, psychiatric or cognitive assessments to support what you are saying. And keep copies of these safe. The next time your child's DLA is reviewed they may well have left education and evidence of your child's functioning will be harder to secure.

If at all possible, send supplementary evidence that supports what you are saying. Copies of things like diaries, medical reports, speech and language assessments, psychological advices and statements of special educational need are often useful. Remember you need to persuade a decision maker who never gets to meet your child!

And keep copies of these safe. The next time your child's DLA is reviewed they may well have left school or college and evidence of their functioning will be harder to secure.

Make photocopies of everything you send. Keep your copies in a safe place; you will need to refer to them if you want a decision looked at again or when the claim is reviewed.

Consider returning your claim by recorded delivery. Doing this costs very little if you use the printed pre-paid envelope in the claim pack and pay the extra. You get a receipt and the DWP has to sign to say they've received it. Better still send it by special delivery; claims can get lost in the post.

If you don't agree with any part of the DWP's decision: a non award, the rate of either the care or mobility award or the length of the award, you need to act quickly. There are short timescales to challenging decisions so seek advice as soon as possible.

Getting advice

Our factsheet 'Tips for claiming disability living allowance', should get you off to a good start.

Amaze also offers telephone advice specifically about DLA on Thursday evenings between 6pm and 8pm. The helpline number is 01273 772289.

Many disability organisations offer useful advice about claiming DLA for young people with specific chronic illnesses, disabilities, or impairments. These can be good places to visit. It can be really hard to make sense of how a young person's diagnosis might have an impact on everyday life.

If you feel really stuck, call the Amaze helpline on 01273 772289 and let us know. We may be able to offer you individual help. We have a small team of DLA volunteers who can make home visits and help you think through how to make a strong case. And if you find that writing stuff down is hard, that's OK our volunteers are happy to fill the forms in. But as most of the volunteers are parents, this service is only available in school term time.

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Employment and support allowance (ESA)

Employment and support allowance (ESA) is a new means tested benefit paid to people whose ability to work is limited by ill health or disability. ESA replaces both incapacity benefit in youth (IBY), and income support (IS) paid on the grounds of incapacity for all new claimants from 27 October 2008.

Who can claim?

A disabled young person may be able to get ESA if they are aged 16 or over and in certain cases up to 25, even if they are still at school or college. The rules about which young people can claim ESA seem to be the same as those for young people who would previously have been entitled to IBY or IS. (So check these details on the website). Remember that if a young person claims ESA, you will no longer be able to claim any child related benefits for them. You will need to think about what makes most sense for your household. There are rules about 'who counts' as a child for tax credit purposes: you can check this under 'tax credits'. 

Although the framework for assessing whether a young person can claim ESA looks at what they can do as well as what they cannot, we think it'll be no harder for young people who are severely disabled to meet the requirements of ESA, than it was to claim IBY or IS. 

What if a young person is already getting IB or IS?

Young people already getting IBY or IS will continue, for now, to get those benefits, rather than ESA. They will also continue to come under the rules and conditions which apply to IBY or IS. So, for instance, a young person's 'incapacity' will be tested under the old IB personal capability assessment rather than the new ESA work capability assessment.

At some time in the future, all existing claims of IBY and IS on the grounds of incapacity will be reassessed using the new ESA work capability assessment. If a young person passes the assessment they will be transferred over to ESA. Young people with the most complex needs will join the 'support group' of ESA claimants and will not be expected to attend regular interviews or work towards getting a job (although they can volunteer to do so if they want).

A key principle underpinning ESA is that everyone should have the opportunity to work and that people with an illness or disability should get the support they need to move into work or work related activities, if they are able. Most disabled young people will fall into a work related activity group of claimants and there is a requirement that in return for ESA and focused support, they turn up and take part in work focused interviews. The aim is that over time, with the right help most disabled young people can be supported to move into work. This group of young people risk getting their benefit cut if they miss appointments without good reason. If your son or daughter falls into this group, they may need your help to be at the right place at the right time.

More able young people who do not pass the ESA assessment and are no longer in education or training will be encouraged to apply for Job Seeker's Allowance (JSA).

Where can I get more help and information?

Claim packs are available from your local Jobcentre Plus. For more detailed information about ESA contact Disability Alliance on 020 7247 8776 or online at www.disabilityalliance.org

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Incapacity Benefit in Youth (IBY)

This benefit has recently been replaced by a new benefit called Employment Support Allowance. New claimants will no longer be able to apply for Incapacity Benefit in Youth. However, if a young person is already getting IBY, they will continue to be paid this for the time being. It's expected that over the next couple of years anyone on IBY will be transferred to ESA.

We have left the following information about IBY online for your reference for the time being.

Incapacity Benefit in Youth (IBY) is paid to young people who are unable to work because of illness or disability and have not paid enough National Insurance contributions to claim Incapacity Benefit under the normal rules. National Insurance contributions are accrued through paid employment: so disabled young people who have never worked because of their disability won't meet the qualifying conditions for ordinary IB.

A young person may be able to get IBY if they are aged 16 or over but under 20 and not in full time education. This usually means less than 21 hours a week.

To get IBY, the DWP have to agree that a young person has been incapable of work for the last six months and will be unable to work in the near future. It's called 'passing the all work test'.

Getting the higher care rate component of DLA automatically entitles a young person to Incapacity Benefit in Youth. However other young people who only qualify for the middle rate for care simply for the reason that they don't require care or attention during the night, may also fulfill the qualifying criteria for IBY.

A young person needs to have been unable to work for at least six months in a continuous period, and, if they are only getting the middle rate of DLA for care, they will need a medical certificate (sick note) from their doctor or specialist backdated and covering the whole six months. Even if your child gets the higher rate care component of DLA you may still be asked to supply a sick note. Because they need a sick note, you need to plan ahead if you want your child to be able to claim Incapacity benefit as soon as they leave school. See your GP about a sick note in January.

Unless a young person is registered blind, has severe learning disabilities or gets DLA at the highest rate for personal care, entitlement depends on passing an 'incapacity for work' test called the 'personal capability assessment'.

It's possible to claim IB while still at school or college. It usually depends on what a young person is studying, how many hours a week they study and their age.

If a student is under 20, they can study for up to 21 hours a week and any hours over that are disregarded if the teaching is significantly different from that offered to non disabled students. Some special school and college curriculums, like those delivered at Downs View Link College and Plumpton will be sufficiently differentiated to meet this requirement. And so will some special needs courses at mainstream colleges.

IBY is an important benefit for disabled teenagers but it is not generous enough to live on if the only other money a young person has coming in is DLA and they are having to support themselves. A young person in this position should claim Income Support (IS) as well.

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Income support (IS)

Income support (on the grounds of Incapacity) has recently been replaced by a new benefit called employment and support allowance (ESA). New claimants will no longer be able to apply for income support. However, if a young person is already getting IS, they will continue to be paid this for the time being. It's expected that over the next couple of years anyone on IS (on the grounds of Incapacity) will be transferred to ESA.

We have left the following information about income support online for your reference for the time being.

Income support (IS) is a means tested benefit to help people on low incomes. Young people aged 16 and 17 are rarely able to claim IS unless they are severely disabled: the exceptions are usually that a young person has left home, or is a care leaver.

Young people aged 16 to 19 can claim IS even if they are at school or college, if they are severely mentally or physically disabled and their disability means they are unlikely to find work within a year if they were to leave school now and sign on for work.

Just as a disabled student may be claiming IB, they can also claim IS if they are:

• on a low income (DLA isn't counted as income) 
• unlikely to get a job within the next year. Signing on for work and having a disability may be a less difficult requirement than passing 'the all work test' although your GP will be asked to confirm this is the case. 
• have less than £16,000 in savings. Although be aware the DWP can take into account savings over £3,000 which might be a problem if a young person is saving for a piece of specialist equipment.

Income Support can be claimed on its own or to 'top up' IB. It is made up of a personal allowance and a disability premium. If your child gets the highest rate of DLA for care they would also be entitled to an enhanced disability premium.

It's a good idea to claim both IS and IB because although the 'income' generated by the other benefit is taken off the calculation for income support, a disabled young person will still usually be better off.

Getting income support is the key to lots of other help, like: 

• travel costs for hospital appointments, free prescriptions, dental treatment and eye tests and help towards the cost of glasses. 
• help from the Social Fund for one-off costs like cold weather payments. 
• Access to Community Care Grants for household purchases that are hard to budget for on a low income such as bedding, heaters, washing machines and safety equipment. Where a young person is still living with their parents, unless the rest of the family are in receipt of Income Support, priority may not be given to a claim for this type of help.

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Other sources of financial help

Some schemes are the same for over 16s as for younger children.

• Fares to hospital
• Family Fund Trust
• The Social Fund
• Council Tax reduction for people with disabilities
• Special grants

You can read about them in Money /Other benefits.

But some schemes are different for over 16s:

Motability

Motability is a scheme which enables the mobility component of DLA to be used to lease or buy a car. Where a young person receives the higher rate mobility component and it has at least a year to run, either you or the young person, if they are 16, can use this part of the allowance to lease a new car or buy a new or second-hand car and have it adapted to meet their needs. It's also possible to use the scheme to buy a wheelchair, if this makes more sense.

For details of the schemes ring Motability on 0845 456 4566 or visit the Motability website.

Independent Living Fund

This is another source of money that is only available to those who meet strict eligibility criteria. Young people must:

• be receiving the highest rate care component of DLA,
• have less than £18,500 savings, 
• be on an income that cannot meet the cost of personal assistance, and 
• be receiving at least £200 per week worth of services from Social Care & Health.

A young person or their appointee should tell social services that they wish to apply to the ILF. As long as the cost of the care package comes to less than £785 a week in total, social services should support the application. If a young person cannot apply to the ILF themselves or manage buying in the care they need, someone else can do this for them.

The Fund exists to support disabled people who are at risk of going into residential care. If the person is eligible they have to contribute a certain amount from their DLA and IS towards the cost of the support package.

It's important to get advice as the calculations you will need to make in order to decide whether or not to apply are complicated. Carers who do not work may also be eligible for an allowance. Contact the ILF for advice

Direct Payments

Direct payments are a way of giving more choice and control to disabled children, young people and their families about the services they use.

• Until a child is 18, parents can be given money to pay for and arrange services for their disabled child rather than accept those their local authority offers.
• Young people aged 16 and over can be given money to buy the support they need rather than social services deciding for them. 
• Young people aged 16 and 17 can choose to share responsibility for managing direct payments with their parent or guardian. You and your child arrange how, when and where support services best fit into your lives.
• Once a young person is 18, if they cannot manage direct payments themselves, 'indirect payments' should be possible. As their appointee, a parent or another person can manage a young person's financial affairs.

To get direct payments your child needs to have been assessed as needing a service. If your child isn't currently getting any services and you think they may be entitled to some, ring the Children's Disability Service or, if they are 18 or over, Adult Social Services, to get a community care assessment.

Ask for an assessment of your needs as a carer at the same time. This won't get you services for yourself but does give you the chance to explain things from your perspective and, for example, be clear that you aren't available as a carer while you are at work.

The amount of money you will get should be the equivalent to the cost of that service, run by the Council. If there is no local authority service, you may have to negotiate over how much that service would realistically cost to provide.

Direct payments are worth thinking about if your child has been assessed for a service but has been on the waiting list and getting no help for a long time.

Direct Payments may also be right for you if you and your teenager don't have a say about how the services you use are run and you feel as if you are always fitting in with what they can offer, rather than what you really want. If your teenager is assessed as needing a service they cannot be refused Direct Payments if this is their choice. Local authorities have a duty to offer Direct Payments: the law says they MUST tell you about Direct Payments and support you if you wish to take these up. Locally, if you are already getting services, your child's social worker should have told you about this alternative to accepting services run by the Children and Young People's Trust.

But using direct payments does require you to keep accounts and records of how the money is spent. And if you don't buy into a service, you will find yourself taking responsibility for finding the best person to look after your teenager. If writing a job description, advertising, interviewing and recruitment all feels a bit overwhelming, the Department of Health and The Council for Disabled Children have put together several very helpful guides to make the process less daunting both for parents and young people.

'A Parent's Guide to Direct Payments' is free: You can get a copy by ringing DoH Publications on 08701 555 455 or from AMAZE.

'My Money, My Way' is a young person's guide to direct payments and is free from SCOPE: tel 080 8800 3333

Brighton and Hove Children's Disability Service have a support scheme for parents and young people to help with things like keeping accounts, recruitment, insurances and payroll. Tel 295530 for more information