• Disability Living Allowance (DLA)
• Employment and support allowance (ESA)
• Other sources of financial help
• Getting advice and information on benefits
• Individual Budgets and Direct Payments (DP)

Disability Living Allowance (DLA)

DLA isn't taxed and income from DLA is 'disregarded', so it's 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. Similarly, 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 parent carers 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 Alternatively, call 08457 123456 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. Look at Amaze's DLA fact sheet - it's full of useful tips. Or call the Amaze helpline; our DLA Project may be able to offer hands-on help.

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 attention?

All sorts of things count as attention (or 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 - including problem-solving when unexpected things happen.
• 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. But there is a difference in the eligibility requirement. Your teenager's needs for care or supervision need 'to be greater than another adult's' as a result of their illness or disability. This is simpler than 'greater than another child of the same age who does not have that illness or disability' which you may be familiar with on the childhood DLA form. Nevertheless, it is still worth making 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 childhood claims for DLA, the adult claim pack will look unfamiliar. There are tick boxes and text boxes where you can explain the help your child needs. You are invited to say more and we would strongly encourage you to do so. The text boxes are small and many of us have found that we’ve had to add additional sheets of paper to explain the help our child needs in sufficient detail. Experience shows the claim is less likely to be successful if you don’t use the text boxes.

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. There is no mental health page, so it's important to weave any difficulties your teen has managing their feelings into the other pages.

Perhaps the most different thing of all 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 fact sheet '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 5.30pm 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 because many of them are parents, there is a reduced service during school holidays.

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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. In 2008, ESA replaced both incapacity benefit in youth (IBY), and income support (IS) paid on the grounds of incapacity for all new claimants.

Who can claim?

A disabled young person may be able to get ESA in youth if they’re 16 or over (and in certain cases up to 25) even if they’re still at school or college.

ESA in youth
A young person can claim ESA in youth if:

• They’re 16-19 years and have had a limited capability for work for at least 28 weeks; or
• They’re 20–24 and were doing a full-time education course or vocational or work-based training for at least three months before their 20th birthday
and it ended in one of the last two complete tax years before the claim for ESA
and they have had a limited capability for work for at least 28 weeks

16 to 19 year olds can’t claim ESA in youth if they’re in full-time education for 21 or more hours a week. But most college courses take up less than 21 hours and teaching hours that are significantly differentiated are not counted (because a young person has severe learning difficulties for example).

A young person can claim ESA in youth from 16, but they have to have had a limited capability for work for 28 weeks before ESA can be paid. These 28 weeks can be before their 16th birthday. So plan ahead and get a medical certificate 6 months before your child’s 16th birthday, so ESA can be paid straight away. Alternatively, your GP may be willing to back-date a medical certificate.

Remember, if a young person claims ESA, you won’t be able to claim child related benefits for them. You’ll need to think about what works best for your household. There are rules about who counts as a child for Tax Credit purposes: you can check this at HM Revenue and Customs (HMRC) at www.hmrc/taxcredits or call the Tax Credit Helpline on 0845 300 3900.

The principle underpinning ESA is that everyone should have the opportunity to work and if they’re able to, people with an illness or disability should get the support they need to move into work or work-related activities. So the assessment framework looks at what the young person can do, as well as what they can’t do.

Claimants are placed in one of two groups:
The ‘Support’ group
Young people with the most complex needs join the ‘support group' and won’t be expected to attend regular interviews or work towards getting a job (although they can volunteer to do so if they want).
The ‘Work–related activity’ group
Most disabled young people will fall into this group and will need to take part in work-focused interviews, in return for ESA and focused support.

The aim is that over time and 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 in the right place at the right time.

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

What if a young person is already getting Incapacity Benefit in Youth (IBY) or Income Support (IS)?

Young people already getting IBY or IS continue to get those benefits instead of 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' is tested under the old IBY personal capability assessment, rather than the new ESA work capability assessment.

It’s expected all existing claimants of IBY and IS on the grounds of incapacity will be reassessed using the new ESA work capability assessment by 2014. If a young person passes the assessment, they’ll be moved over to ESA.

Where can I get more help and information?

Claim packs are available from your local Jobcentre Plus. For more detailed information about ESA, visit the Disability Alliance website or call 020 7247 8776.

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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 means some of the money from the mobility component of DLA to be used to lease or buy a car. If your child is 16 or over, receives the higher rate mobility component and it has at least a year to run, you or the young person, can use the mobility 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. If the disabled person can't drive, they can still obtain a car as a passenger by nominating up to two as the drivers.

Motability also administers the ‘Exel/Motability Young Disabled Drivers’ Scholarship’, which helps 16 to 24 year olds in receipt of the higher rate of mobility of DLA with the cost of driving tuition.

For details, call Motability on 0845 456 4566 or visit the Motability website.

Independent Living Fund (ILF)

This is now closed for new claimants, but existing ILF claimants may be able to continue to receive funding until 2015. Contact the ILF for advice

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Getting advice and information on benefits

Amaze
If you need help with DLA applications, call the Amaze helpline on 01273 772289. Helpline staff can offer advice and practical support. We have a handy fact sheet ‘Tips for Claiming Disability Living Allowance’ and detailed page by page notes about the sorts of things other parents and young people have found helpful to include in the application.

MACSS
Money Advice and Community Support Service (MACSS) offers advice about entitlements to benefits and budgeting, support to make claims for benefits and help with appeals. If your child has had a social care assessment and needs ongoing help to manage their money, get them to ask their social worker for a referral to MACSS. For anyone else, MACSS offers initial advice through its specialist welfare benefit and debt advice helpline on 01273 664040, or visit their website

Brighton and Hove CAB (Citizens’ Advice Bureau)
The CAB can offer advice on a range of benefits issues in person or over the phone. If you’re on a low income, more complex cases may be referred to a case worker in the bureau’s Community Legal Service (CLS) Team. Call 0845 1203710 or visit http://www.brightonhovecab.org.uk/

Brighton & Hove Federation of Disabled People
The Federation has a welfare rights and benefits advice line. It also has a Direct Payments and Payroll Service that supports parents of disabled children and disabled adults using Direct Payments (DP). Call 01273 296747.

Brighton Housing Trust Advice Centre (BHT)
BHT offers advice and support for DLA claims, as well as advice, information and legal representation on housing and accommodation issues. Call 01273 234737.

Brighton Jobcentre Plus
The centre has two ‘under 18’ advisers who work with young people on benefits issues. The general advisers or Disability Employment Advisers (DEAs) can help do a ‘better off calculation’ which helps you understand how the benefits your child claims will affect your own benefits. Call 01273 647400. The Jobcentre Plus also offers a drop-in service, but you may have to wait.

Brighton Unemployed Centre Families Project
The project runs a welfare rights service which offers independent advice and support on benefits and welfare rights. Call 01273 676171.

Disability Rights UK (formerly National Centre for Independent Living, NCIL)
The National Centre for Independent Living provides support and information on Individual Budgets and Direct Payments (DP). It produces a range of publications, videos/DVDs and an Employers Kit and runs an online forum. Call 0207 587 1663 or visit their website.

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Individual Budgets and Direct Payments (DP)

The way services are organised for people who need extra care is changing and increasingly they can choose to be given money to organise and pay for their own services instead of relying on a ‘one size fits all’ package decided by the council. The term for this approach is Self Directed Support (SDS) or Personalisation.

The money given to service users is called Individual Budgets (or sometimes Individualised Budgets or Personal Budgets). Direct Payments (DP) are the main type of funding associated with Individual Budgets.

• Until a child is 18, parents can use DP to pay for and arrange services for their child when and how they want, instead of accepting the package of services offered by social care
• Young people aged 16 can take responsibility for DP, or if they're 16 or 17, choose to share responsibility with their parent
• Once a young person is 18, if they cannot manage DP 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, call the Children's Disability Service or, if they are 18 or over, Adult Social Services, to get an 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.

DP 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.

DP 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 DP: the law says they MUST tell you about DP 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.

But using DP does mean you need 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, there are helpful guides to make the process less daunting both for parents and young people, as well as a Direct Payments Support Service run by Brighton & Hove Federation of Disabled People (The Fed).

'A Parent's Guide to Direct Payments' is free: You can get a copy by calling the Department for Education on 0845 602 2260, or by downloading it from their website.

'My Money, My Way' is a young person's guide to DP and is free from SCOPE - call 080 8800 3333 or look online at http://www.scope.org.uk/

Brighton & Hove Federation of Disabled People runs a comprehensive Direct Payments Support Service to support parents of disabled children and disabled adults who use DP. It can help with finding or recruiting a PA (personal assistant), PA training, tax and insurance, payroll services and being an employer. You can contact the Fed on 01273 296747 or at http://www.bhfederation.org.uk/