Chapter seventeen
FINANCE AND BENEFITS
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Chapter seventeenFINANCE AND BENEFITS |
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Finding out
What's available?
Who can help you through the system?
Are you eligible?
Don't delay, and get advice
Some of the basic benefits
Disability Living Allowance
Carer's Allowance
Independent Living (1993) Fund
Social services direct payments
Statutory Sick Pay
Incapacity Benefit
Working Tax Credit
New Deal for Disabled People, and benefits protection
Jobseeker's Allowance
Income Support
Housing Benefit and Council Tax Benefit
The Council Tax 'Reduction for Disabilities' Scheme
The Social Fund
Community Care Grants — Budgeting Loans — Crisis Loans
Other Social Fund payments
Benefits-related assessments - some tips
Studying and benefits
Employment and benefits
Making your money go further
Benefits and services are changing considerably as I write, and some of what I say may have altered by the time you read it. For up-to-date information see the latest update of the Disability Rights Handbook and contact the bodies I mention in this chapter.
What's available?
Without committing yourself at all you can find out by using the following sources of information:
Who can help you through the system?
Seek information and advice from:
What financial help you, someone with inflammatory arthritis, can get depends on all sorts of things — are you in work? on long-term sick leave? trying to keep your job but struggling? unemployed but looking for work? unable to work and struggling financially? in work but on a low income? studying? single? married? with or without children? Find out as much as you can from the sources listed above, particularly those likely to have a specialist understanding of your situation. Don't assume any single source alone can tell you all that's relevant to your particular needs — keep searching yourself too, and asking, as much as possible!
Even if you don't consider yourself 'disabled', do look at what's available for 'disabled people'. You may be surprised to find you do qualify. For instance problems preparing a meal may mean you could apply for the lowest rate of the Disability Living Allowance (DLA) care component, or serious problems with walking and getting around outdoors may qualify you for the DLA mobility component. Take a look, perhaps, at chapter 16 'Am I a disabled person? Or not?'.
Keep in mind too that even 'non-disabled' benefits may sometimes have more flexible rules for someone with a disability or long-term illness. For instance if you work more than 16 hours a week you cannot usually claim Income Support, but exceptions may be made if your earnings or hours of work are reduced to 75% or less of what someone without your disability would reasonably be expected to undertake in your type of job.
Some benefits are means-tested; some aren't. For means-tested benefits you have to give details of your income, circumstances, and any savings. Some benefits are available whether or not you've paid National Insurance (NI) contributions; others relate to any NI contributions you have made. You'd lose out on something like Incapacity Benefit, for instance, unless you'd paid sufficient NI contributions linked to paid employment with earnings over the 'lower earnings limit' (though there are exceptions).
Some benefits (eg DLA) are payable whether you're in work or not, some are paid only if you're deemed 'incapable of work'. Other rules apply for so-called 'permitted work'. Special 'linking rules' apply for people on welfare-to-work schemes, to protect their benefits entitlement while they try out a job.
If you do receive benefits, remember that any benefits you receive may be affected if your circumstances change, such as going into hospital, studying, and doing paid work. They may be affected too by your partner's work and financial circumstances.
As someone of working age, you apply for most benefits and services through a Jobcentre Plus office. Find your local office through the Jobcentre Plus website, or in the local phone book or by calling Jobcentre Plus main enquiries free on 0800 055 6688 (weekdays). Jobcentre Plus offices are part of the Department for Work and Pensions (DWP). Officials you may deal with include personal advisers, Disability Employment Advisers (DEAs) and Access to Work (AtW) Advisers.
Four other parts of the DWP also deliver services to the public: the Pensions Service, the Child Support Agency, Debt Management, and the Disability & Carers Service (DCS). DCS administers Disability Living Allowance, Attendance Allowance, Carer's Allowance and vaccine damage payments, via two central units: the Disability Contact & Processing Unit (DCPU) in Blackpool and the Carer's Allowance & Vaccine Damage Payment Unit in Preston, plus a network of nine regional Disability Benefits Centres. For existing DLA claims you can contact DCPU Blackpool direct.
HM Revenue & Customs (HMRC) deals with National Insurance contributions, Statutory Sick Pay, maternity, paternity and adoption payments, plus Child Benefit, Guardian's Allowance and tax credits. Your local council deals with Housing Benefit, Council Tax Benefit, and social services and community occupational therapy issues.
If you're not sure what office to contact about which benefit or service, phone BEL (DWP's Benefits Enquiry Line) free on 0800 882200.
Don't let apparently complicated forms or procedures put you off applying for a benefit. If you're not sure whether or not you qualify, apply anyway. Don't delay, because back-dated payments may not be allowed, or may be restricted by time limits. Bear in mind that for disabled people regulations which apply to non-disabled people may not be relevant, and exceptions may sometimes be made in your favour.
Going about a claim in the right way can make all the difference. Explaining what you can or can't do because of your health condition can be tricky. See my notes later on benefits-related and incapacity for work assessments. Probably the most important tip for someone with long-term inflammatory arthritis is to get help from an independent and experienced adviser, someone who understands your condition and knows how best to explain your needs on any claim form. For instance Citizen's Advice, your local DIAL, and the support group for your particular condition. If you have rheumatoid arthritis (RA), for instance, the people at NRAS (National Rheumatoid Arthritis Society) are very helpful — also Arthritis Care, a rheumatology nurse specialist, some social workers, etc. See 'Who can help you through the system?', earlier.
The Disability Rights Handbook is full of independent advice and useful tips, and includes other sources of help.
Experienced help is essential too if you have to appeal against a decision. Make sure you know the time limits within which the appeal must be lodged. Many people are awarded a benefit after an appeal even though they were turned down when they first applied. So if you're turned down once, don't let that put you off trying again.
Don't be harrassed by officials and phone calls into giving snap, spur-of-the-moment answers or statements about your condition. Say you'll get back to them. Take time to think, so you can explain yourself properly and can seek independent help if necessary. Always keep a dated copy of any correspondence (including forms you've completed) and keep a dated note of any phone call or meeting with an official. Look too at my notes in chapter 18 on dealing with bureaucracy.
This is only a brief introduction, not a complete list. It doesn't include benefits for older people (such as the state pension or Attendance Allowance), nor benefits relating to children (such as Child Benefit, Child Tax Credit), or other benefits for special situations (such as industrial injuries benefits, maternity/paternity benefits or bereavement payments). Severe Disablement Allowance (SDA) was abolished in April 2000.
A quickie internet introduction to what else may be available is Disability Alliance's online 'What you can claim', and NRAS's Benefits and Rheumatoid Arthritis — a simple guide to the main benefits that could be available to people with rheumatoid arthritis (in print or online).
Disability Living Allowance (DLA)
DLA is paid to help with extra costs that may result from difficulties with personal care needs or walking outdoors caused by having a disability or a long-term health disorder like long-term inflammatory arthritis. You can spend DLA as you like. Even if you don't consider yourself 'disabled' you may well be eligible if your health disorder causes difficulties with everyday activities like walking outdoors, preparing a cooked main meal for yourself, getting in and out of bed, using the loo, washing and caring for yourself, getting dressed and undressed, etc.
You can claim DLA whether you're in or out of work, and regardless of whether you are receiving any other benefits. It doesn't depend on your income, savings, or NI contributions, and it's tax-free. You have to be under 65 when you claim. If you get DLA it may increase other benefits you get, for instance Income Support or Housing Benefit.
DLA consists of two parts, called 'components':
To apply for DLA you have to complete a long self-assessment form. You may also be asked later to attend a medical assessment with a doctor. See my tips on benefits-related assessments, below. Do read the excellent booklet produced by the National Rheumatoid Arthritis Society (NRAS) How to claim Disability Living Allowance — a self-help guide to claiming for adults with rheumatoid arthritis (free, but send donation if possible). There's masses of helpful advice too in the Disability Alliance's Disability Rights Handbook and on www.benefitsandwork.co.uk.
There's an online introduction to DLA on the government's directgov website. You can get a pack for claiming Disability Living Allowance by:
Usually, if your claim is agreed, the date you requested the form from BEL or from Jobcentre Plus is treated as your DLA start date provided you return the form within six weeks of that date. However, while it's important not to delay, it's vital too, that you first think really carefully about the questions and about your answers, taking advice if possible. Read the explanatory notes enclosed with the form. Write your answers out somewhere else first, and keep revising them until you believe they do you justice. Take a photocopy of the completed form to keep, before you send it off.
As the NRAS self-help guide about claiming DLA says, the DLA form is "designed for people with stable conditions, rather than conditions that can fluctuate like RA." The booklet guides you through difficult questions in detail, explaining how best to deal with good days and bad days, and other variations in your condition. Keeping a diary is recommended, with examples of different diaries. There's a reminder about the 'cooking test' — "even if you have no other care or supervision needs but can satisfy this test, you could be awarded the lowest rate of the care component". The NRAS booklet explains too how your claim is assessed, about the medical assessment you may be asked to have, what to do if you're not happy with the decision on your claim, what to do later if your condition changes.
Carer's Allowance
Payable to someone who regularly spends at least 35 hours or more a week caring for a person who gets the higher or middle rate DLA care component (or who gets Attendance Allowance). Taxable. Doesn't depend on past NI contributions, although the recipient gets a Class 1 NI credit for each week s/he receives Carer's Allowance, important if at any time in the future s/he needs to claim another benefit.
The carer applies on form DS700, available from BEL 0800 882200 or from the Carer's Allowance Unit on 01253 85 61 23. Or find out more from the online leaflet Carer's Allowance (CAA5DCS) or claim online using the DWP website.
Independent Living (1993) Fund (ILF)
Government-funded but independent and discretionary trust fund, whose purpose is to provide help to some severely disabled people who need considerable help with personal care or domestic support if they are to be able to live in their own homes. ILF funds are limited, and the qualifying criteria strict. You must be receiving DLA highest rate care component and fulfil other criteria. To apply you request a needs assessment from your local social services department, and say you want to apply to the Independent Living Fund.
Find out more from the National Centre for Independent Living. The eventual plan is to integrate the ILF within a system of personalised 'individual budgets', mentioned on the NCIL site and also on the Care Services Improvement Partnership (CSIP) website.
Social services direct payments
Regular cash payments available if you have been assessed by your local social services as needing community care services (or if you are a carer assessed as needing services as a carer), and meet certain other criteria. The aim is to give you more choice, but you are responsible for using the payments to arrange and pay for the services you need.
Find out more from your local social services department and from the National Centre for Independent Living (NCIL).
Statutory Sick Pay (SSP)
Most employed people should receive SSP automatically from their employer for up to 28 weeks in a period of sickness lasting four or more days in a row (including weekends and public holidays). After seven days off sick you need to provide your employer with a doctor's certificate (Med 3). SSP does not depend on NI contributions, but to qualify for SSP you must on average earn at least the weekly lower earnings limit (£87 from April 2007). If you receive sick pay instead of SSP under your firm's own occupational sick pay scheme, the rate should be no lower than the SSP rate.
SSP is taxable. If your SSP and any other income you get is below your Income Support (IS) 'applicable amount' (the basic amount the law says you need to live on) you may be able to claim IS to top it up. If you don't qualify for SSP you can apply for Incapacity Benefit. Unemployed and self-employed people do not qualify for SSP.
The time you are off work, sick, is called a 'period of incapacity for work' (PIW). If a second spell of sickness (of at least four days) starts no more than eight weeks after the end of the first PIW, the different PIWs are linked together and count as one continuous PIW. If you are still sick at the start of the 23rd week of your PIW you will need to start a claim for Incapacity Benefit (IB), to avoid any gap in payments if your illness continues beyond 28 weeks. You'll need form SSP1 from your employer to start your IB claim.
Your employer operates the SSP scheme under guidance from HM Revenue & Customs (HMRC), detailed in leaflet E14 What to do if your employee is sick, available from the Tax Credit Helpline on 0845 300 3900 (textphone: 0845 300 3909).
Incapacity Benefit (IB)
Incapacity Benefit will be replaced in late 2008 by an Employment Support Allowance (ESA).
You need to be below pensionable age to claim IB, and must usually have paid enough NI contributions to qualify (though there are exemptions for people under 20, and for some people under 25). There are three basic rates of IB:
Each day of your claim for IB must be part of a 'period of incapacity to work' (PIW), and the DWP will need proof of your incapacity to work. To start with, that proof will be the medical certificates from your doctor (Med 3 form), and you should continue sending these until the DWP accepts your incapacity claim. Your incapacity to work is assessed by DWP in two possible ways:
You are exempt from the PCA if you receive the highest rate of DLA care component, or if DWP accepts that you are suffering from certain specified conditions which include an 'active and progressive form of inflammatory polyarthritis'. However exemption isn't automatic, and for instance if you have 'early onset disease' (perhaps you haven't had RA or lupus very long) you may find you are exempted for only a year or two, to allow time for treatments to take effect and possible remission or easing of the condition.
One of Disability Alliance's web pages links to DWP guidance documents given to decision makers and medical practitioners dealing with Invalidity Benefit and other claims. The Incapacity Benefit Handbook for Approved Doctors 'Office based work — exempt categories', section 2.2.3.4 discusses in more detail what may or may not lead to someone with an 'active and progressive form of inflammatory polyarthritis' being exempted from the PCA. For someone with ankylosing spondylitis, for instance, it comments:
"Modern treatment has a significant effect on the outcome. Severe scoliosis should now be rare. Regular physical exercise, taken in the form of work, can be positively beneficial."
If you are not accepted as exempt from the PCA you'll be asked to complete an 'incapacity for work' PCA questionnaire (IB50), which assesses the extent to which your medical condition affects your ability to perform a range of work-related activities. You may be asked to attend a follow-up medical examination. See my notes later on benefits-related assessments.
There's a lot in the Disability Rights Handbook on 'incapacity for work', with helpful information and tips on completing the PCA, including a complete list of the activities and tasks used in the questionnaire, plus points allocated to each. Information and tips too on medical examinations, making an appeal against a decision, and appeal tactics.
Both IB short-term higher rate and the long-term rate are taxable. If you have a personal or occupational pension, half of what you receive over a certain threshold will be deducted from your IB (unless you receive the highest rate DLA care component). Some people may qualify for an adult dependant's addition. Different rules apply if you qualified for IB before 13 April 1995.
If you can't get Incapacity Benefit or if your IB does not give you enough money to live on you may be able to get Income Support.
For more information on Incapacity Benefit see:
To claim Incapacity Benefit you need to fill out form SC1:
If your condition improves after you've been receiving IB for a while, you may wonder about returning to work or to training. If you do, but later become incapable of work again within a 52-week linking period, a 'welfare to work' linking rule helps you return to IB at the same rate as before without having to re-satisfy certain conditions.
However, do take advice on how your benefits might be affected if you try to find work. Ask a Jobcentre Plus or an independent welfare rights adviser (preferably both!) for a 'better-off'calculation to compare your income in work and out of work. Besides losing benefits, bear in mind that in some low-paid work you might not pay National Insurance contributions and you would then lose entitlement to Invalidity Benefit if you were later off work ill for a long time. Seek expert advice, and weigh up all the pros and cons.
Working Tax Credit (WTC)
If you are aged 16 or over, work 16 hours a week or more, and "have a disability that puts you at a disadvantage in getting a job" you may be able to get Working Tax Credit, which is paid to top up low earnings. Definitions of 'disability' in this context include problems with getting around, using your hands, reaching with your arms, exhaustion and pain. WTC can be claimed even if you do not have any children. (Other criteria apply to people without a 'disability'.) The amount paid differs according to your particular circumstances. WTC is adminstered by HM Revenue & Customs (HMRC).
For more information see http://taxcredits.direct.gov.uk or leaflet WTC1
Claim on form TC600 available from the Tax Credit Helpline on 0845 300 3900 (textphone: 0845 300 3909) or from Jobcentre Plus offices and HMRC enquiry centres, or download the form, with notes, from www.hmrc.gov.uk.
The same form also covers Child Tax Credit.
New Deal for Disabled People (NDDP), and benefits protection
Perhaps your medical condition eases enough for you to consider going back to work, but you're not sure what you could manage, and are worried about the possible effect on your benefits and finances?
The voluntary NDDP programme is one avenue you could explore. You choose an NDDP 'Job Broker' to register with. Job Brokers are organisations from the private, public and voluntary sectors. Each operates differently, so find out about those in your local area before deciding which to contact. Look at the New Deal website, use the Job Broker search website, or call the NDDP helpline on 0800 137 177 (textphone 0800 435 550).
Job Brokers can give you advice on how to get a job, help match your skills and abilities to what employers need, and can support you when you start a job. Support services include helping you to fill in application forms and to write your CV, help preparing for interviews, and providing advice on local job vacancies.
Besides the NDDP there are other schemes your Disability Employment Adviser (DEA) can tell you about if you are thinking of trying to return to work, for instance the Job Introduction Scheme which offers an employer help towards your wages or other employment costs for the first few weeks (the JIS period) while you and the employer see how you get on in the job. DEAs can be contacted through local Jobcentre Plus offices.
'Benefits protection' has been introduced to remove some of the barriers which people with disabilities can face in returning to work. This includes for instance 52 week benefit protection, which "enables people who leave state incapacity benefits, in order to try work or training for work, to reclaim benefit at their previous rate (subject to certain conditions) if they fall sick again within 52 weeks (two years for people receiving Working Tax Credit)". 'Rapid reclaim' is another example your DEA could tell you about.
Do, I repeat, take advice on how your benefits might be affected if you try to find work. Ask a Jobcentre Plus and an independent welfare rights adviser — preferably both — for a 'better-off'calculation to compare your income in work and out of work, and do weigh up the pros and cons very carefully. The Disability Rights Handbook has masses of helpful info and advice, including pitfalls to be wary of and how best to deal with them. So too does the www.benefitsandwork.co.uk website.
Jobseeker's Allowance (JSA)
For people below pensionable age who are either unemployed or are working on average less than 16 hours a week, and who are available for and actively looking for work. You'll be asked, with help from a Jobcentre Plus personal adviser, to plan and sign up to a 'Jobseeker's Agreement', and will usually be expected to sign on at the Jobcentre every two weeks. If because of 'incapacity for work' you're not required to sign on, then claim Income Support instead. There are two types of Jobseeker's Allowance: contribution-based and income-based.
More info and downloadable claim form at www.jobcentreplus.gov.uk or from your local Jobcentre Plus, or phone Jobcentre Plus main enquiries: 0800 055 6688 (weekdays).
For more general info about looking for work visit the looking for work section of www.jobcentreplus.gov.uk: look especially at the section 'Help for disabled people', even if you don't think of yourself as 'disabled'. There's a lot of information and support available via Disability Employment Advisers (DEAs) and Access to Work (AtW) Advisers for someone like us with a long-term health condition.
Look at the non-disabled website sections too, but bear in mind that eligibility criteria, etc, are sometimes more flexible if you have a disability or long-term health condition. Handy to know, for instance, that JSA rules allow you to restict your availability for work (eg hours, travel time, type of work) provided the restrictions are considered 'reasonable' given your disability or physical condition.
Income Support (IS)
Payable to help people under 60 but aged 16 or over on a low income. It is calculated to bring your income up to the basic amount the law says you need to live on, described as the 'applicable amount'. It's means-tested and not dependent on National Insurance contributions. You can't normally get IS if you or your partner (married or unmarried) work more than 24 hours a week, or if you have savings over a certain amount. However the '24+ hours rule' might be disregarded if, because of your disability, your 'earning capacity' is cut to 75% or less of what you would, but for that disability, be reasonably expected to earn.
You might qualify even if you get other benefits (eg Incapacity Benefit), or earnings from part-time work. In addition to IS you may also qualify for one or more 'premium payments' if you have 'special needs' (eg because of disability, children).
IS can act as a 'passport' to other benefits, such as Housing Benefit, Council Tax Benefit, and you may be able to get help with mortgage interest payments and other housing costs not covered by Housing Benefit. If you receive IS you also qualify for free NHS prescriptions and free NHS dental treatment.
Find out more from:
To claim Income Support:
Housing Benefit and Council Tax Benefit
If you are on a low income, Housing Benefit and Council Tax Benefit could help towards your rent and Council Tax. You do not have to be receiving any other benefits to qualify. They are means-tested but not linked to National Insurance contributions. If you are on Income Support you may be able to get help with mortgage interest payments and other housing costs not covered by Housing Benefit.
Your local council pays these benefits. For more information see the online guide A guide to housing benefit and Council Tax benefit (RR2).
To claim Housing Benefit and Council Tax Benefit you will need HCTB1 form, available from your local council, or downloadable (with more information) from www.dwp.gov.uk.
The Council Tax 'Reduction for Disabilities' Scheme
You can apply for this whether you're in work or not, and you don't have to be receiving any other benefits to apply. If you qualify, your Council Tax bill will be reduced to the amount payable for a dwelling in the valuation band below yours. You can apply if you or any other resident in your dwelling is 'substantially and permanently disabled' and provided your accommodation has at least one of the following three features:
Find out more from www.direct.gov.uk. Ask your local council for an application form. The council may ask for other information to support your claim.
You may be able to apply for money from the Social Fund if you have exceptional one-off costs you can't meet from your ordinary income. Some payments are made as grants, which don't have to be paid back; others are interest-free loans, repayable over a period, and related to income, savings, and personal circumstances.
To be eligible for either of the first two funds listed below you have to be getting Income Support, income-based Jobseeker's Allowance or Pension Credit. All three funds are payable at the discretion of a decision maker (DM) at Jobcentre Plus. DMs have to keep all payments within the local office budget, so the success of your claim may depend as much on when you apply (eg early in the Financial Year, April to April) as on why you're applying. If you're refused a payment, you can ask for a review, but you must ask within 28 days of the date on your decision letter.
For more information about Social Fund payments contact your local Jobcentre Plus or Jobcentre Plus main enquiries: 0800 055 6688 (weekdays) or visit online www.jobcentreplus.gov.uk, click on 'customers' then 'working age benefits' then 'living on a low income?'. For more detailed guidance, aimed at advisers, you could look at online leaflet SB16.
Community Care Grants Not repayable, so preferable to a loan. They're to help people, usually already on IS, keep their independence in the community. Grant examples could include help to move to more suitable accommodation, to deal with a serious housing structural problem or with an unforeseen calamity such as fire or flooding, or for essential household or special equipment, stair-lift, etc.
If your application is refused, but you still think you've got a good case, it's worth asking for a review. One younger person with arthritis (writing in Arthritis News) received a very expensive estimate for crucial repairs in her bathroom, and was turned down at first for a grant. But she persisted, and eventually got not only the maximum permissible grant, but more!
More info and downloadable claim form (SB300) online at www.jobcentreplus.gov.uk or from Jobcentre Plus.
Budgeting Loans Repayable but interest-free loans. If you've been getting Income Support, income-based Jobseeker's Allowance or Pension Credit for at least 26 weeks, a loan may help you spread over a longer period the cost of certain one-off exceptional expenses (eg for furniture, household items, repairs, rent in advance, hire purchase debts, etc). Normally repayable within 104 weeks (two years).
More info and downloadable claim form (SB500) online at www.jobcentreplus.gov.uk or from Jobcentre Plus.
Crisis Loans Repayable but interest-free loans. You don't have to be already getting a benefit such as IS to qualify. They're for people unable to meet an immediate short-term need in an emergency or following a disaster, where there's serious risk to the health and safety of you or your family. Once the crisis is over, you are asked to repay the loan over an agreed period of time, normally within 104 weeks (two years).
More info and downloadable claim form online at www.jobcentreplus.gov.uk or from Jobcentre Plus. You may be able to make a Crisis Loan application by telephone.
Other Social Fund payments
The following three payments are legal entitlements for people on a low income. More information from Jobcentre Plus or online at www.jobcentreplus.gov.uk, click on 'customers' then 'working age benefits' then 'living on a low income?'.
Sure Start Maternity Grants Lump sum payment, does not have to be repaid. More info and downloadable claim form (SF100) online at www.jobcentreplus.gov.uk or see leaflet NI17A A guide to Maternity Benefits.
Funeral Payments Info and downloadable claim form (SF200) online at www.jobcentreplus.gov.uk.
Cold Weather Payments (Different from Winter Fuel Payments, which are available only to people aged 60 or over) — More info and downloadable claim form online at www.jobcentreplus.gov.uk or see leaflet SFHA5JP Help with extra heating costs from the Social Fund.
For some benefits like DLA and Incapacity Benefit you have to complete a detailed assessment form to show how your daily life is affected by your medical condition. Just naming your condition, eg psoriatic arthritis, is not enough, alas! The person assessing your completed claim form is told:
"a precise diagnosis is of secondary importance. The primary function is to make an assessment of how a person's day-to-day life is affected by disability, and to relate this to the legislative requirements." (The Personal Capability Assessment — A Guide for Medical Practitioners)
Most of us spend our lives putting a brave face on things, grimacing inwardly while telling the world that the pain's not too bad. You need to do the opposite when being assessed. It's definitely not the time to 'grin and bear' it! Don't lie, just tell the truth from the pessimist's, not the optimist's point of view. Stress how much it hurts and if pain or discomfort or stiffness starts right away, say so. Stress how much you can't do. An optimist describes a glass as being 'half full'; a pessimist says it's 'half empty' — both statements are true, but benefit claims are decided on the evidence produced by the pessimist, not the optimist.
• So complete the form wearing your pessimist's hat rather than your optimist's hat — focus on what you can't do, or find difficult, rather than what you can do.
• You can apply even if you live alone, and whether or not you do get help with what you can't do.
• What counts is your need for help, not whether there's anyone there to give it to you.
It's not easy to explain what you can and can't do because it can vary so much. Assessment forms are easier to fill in if you have a stable, predictable condition, unlike a long-term inflammatory arthritis like RA or lupus or other fluctuating and variable condition. The DWP assessor judging your completed claim form is told:
"The aim of the test is not to judge whether a person can carry out a particular action or function on a ‘one-off’ basis, but rather to assess the difficulties a person encounters in carrying out the activities in a reasonably sustained fashion over time." (The Personal Capability Assessment — A Guide for Medical Practitioners)
• So keep a diary, from which you and the assessor can balance up the good spells and the bad, and come to a decision about your 'average' condition.
The NRAS DLA booklet gives helpful advice, with examples of one-day and longer term diaries for someone claiming DLA care component:
"Try to list all the times when you need a hand from someone else or you have difficulties doing something because there is nobody around to give you a hand … when you write something down, try to answer the following questions: (a) What help do you need? (b) Why do you need the help? (c) At what time do you need help? (d) How long do you need the help for?" (How to claim Disability Living Allowance — a self-help guide to claiming for adults with rheumatoid arthritis, National Rheumatoid Arthritis Society)
You need to show what's 'normal' for you over a period of time. Include periods of pain and fatigue, with causes and duration if appropriate. If you think it may help, include how many painkillers you take, and how often, to give the assessor an insight into the variability of your condition and the pain you have. Include any planning and pacing you need to do — for instance if you hope to go shopping one day, do you have to plan to do absolutely nothing the day before and nothing for a day or more after to recover (and with no guarantee your body will let you shop on the planned day)?
• Remember the assessor can't mind-read — you need to give a detailed, precise word-picture of how your day-to-day life is affected. Unless you tell them, they won't know.
Be realistic, especially about the length of time it takes you to do something if there's no one to help. Maybe you can dress yourself, but it takes over an hour to do so and then you're too exhausted to do anything else? Or maybe you can make a cup of tea, but only at considerable cost in time, frustration, and pain. You may need to describe how you tackle each 'tiny' step of the process in detail.
The characteristic of chronic inflammatory arthritis, resulting from 'the interaction of different disabilities' is often overlooked or misunderstood by officialdom:
"If one sets out to measure the functional ability of a person with severe arthritis in, for example, the kitchen, one is likely to find that many individual activities are within [that person's] capacity. However, effective preparation of a meal calls for integration of these activities, particularly by ease of movement between one part of the kitchen and another, and it is especially at this level that the person with arthritis experiences serious difficulty. Similarly, affected individuals are usually capable of dressing themselves but the fact that the process may take well over an hour cannot help but distort organisation of the day's schedule." (WHO's International Classification of Impairments, Disabilities, and Handicaps, a manual of classification relating to the consequences of disease, Geneva, WHO, 1980)
The Disability Discrimination Act calls this the 'cumulative effects of an impairment':
"B4. An impairment might not have a substantial adverse effect on a person’s ability to undertake a particular day-to-day activity in isolation, but its effects on more than one activity, taken together, could result in an overall substantial adverse effect."
• So take advice from someone who understands this, someone who combines experience of benefits asessments with understanding of a variable, fluctuating disorder, someone like a self-help group adviser eg from NRAS, Arthritis Care, or DIAL or Citizen's Advice. Look too at my comments in chapter 25 'How does the arthritis create misunderstandings between us and other people?: 4. The problem of how to explain its oddities'.
Examining the 'interaction of different disabilities' is clearly the aim of the 'cooking test', used if you're applying for the DLA care component lowest rate. You have to show that you are "so severely disabled physically or mentally that … [you] cannot prepare a cooked main meal for [yourself] if [you have] the ingredients". Many different actions go into preparing a meal — peeling and chopping vegetables and meat, opening tins/ bottles and packets, using cooking utensils, moving things from one area to another, turning taps and oven switches on and off, stirring, pouring, draining, using hot pans and dishes, etc.
• Since non-specialists such as DWP assessors so often misunderstand rheumatic disorders, you could provide for the assessor, if possible, a supporting letter from your rheumatologist or rheumatology specialist nurse.
The Incapacity Benefit PCA test assesses your 'incapacity for work'. The Disability Rights Handbook explains how points are awarded for different activities listed in the questionnaire and advises how to answer if you have a variable condition:
"The test of whether you cannot perform an activity is not whether you can never do it. Rather, you should score points if you cannot carry out the activity most of the time, even if you have days when you are symptom free. If there are some occasions when you cannot perform tasks, then you should give full details in the boxes in the questionnaire. It can still be true to say that overall you 'cannot' do something even if you are able to do it on, say, 4 days out of 7. This is because a range of factors must be taken into account: that even on your better days you still have a lot of trouble; how many bad days you have; the length of time between bad spells; whether bad days are unpredictable, etc. It involves looking at the whole period and saying whether, in a more general sense, you can fairly be described as someone who meets the descriptor [tasks relating to each activity]. It is an exercise in judgement rather than an arithmetical calculation of frequency.
If you have an intermittent condition with longer periods of no, or few, symptoms, you may have difficulty passing the test overall even though you may be incapable of work on your bad days."
For each PCA activity which descriptor best describes what you can do on most days? Could you normally at any time carry out the stated activity if asked to do so? Or not? PCA medical assessors are told that "if a person cannot repeat an activity with a reasonable degree of regularity, and certainly if they can perform the activity only once, they should be considered unable to perform that activity."
Both the DLA and PCA forms ask you about walking, about how far you can walk without 'severe discomfort'. 'Severe discomfort' is less than severe pain. For the DLA distance is considered along with the speed, time and manner of walking. — Try to imagine real everyday situations where you have to walk. Walking to the post box or to a local shop, for instance, or to exercise a pet? Similarly for other activities. For 'standing' questions: imagine standing to prepare and cook a meal, for instance, or standing in a queue at the supermarket or waiting for transport, or standing as a spectator at a sports match.
• Be specific with your answers; don't guess.
Do some practice walks and take measurements and make notes. — Can you walk 50 metres without discomfort? More? Less? How far? How many minutes does it take? Do you limp? Have to use a stick? Have to think about every step? When does pain or discomfort start? Describe it. Where — hip or knee or ankle or? When does it make you want to stop? How long does it take for you to recover? etc.
Unpredictability of good and bad spells is something that could concern an employer, so include that if applicable to you, and likewise the predictability or unpredictability of pain and whether or not painkillers can be relied on to be effective.
Filling in the form Do first draft out your answers in rough, if possible on a blank photocopy of the form, perhaps in pencil. Take care planning your answers, with experienced help if possible. If the form's questions don't bring out something important that you think should be taken into consideration either:
• use the extra space provided. For instance on the DLA form:
• or write your extra comments legibly with your name and National Insurance number on a separate sheet of paper; cross-refer to it on the main form, and attach the sheet firmly. I needed to do this with my DLA Mobility Allowance application — it was too difficult otherwise to explain what my problems were.
Put your draft answers aside for a day or two, then re-read your draft through pretending to be the DWP's decision maker (DM). — Does the completed form tell you, the DM, all you need to know? Does the claim convince the DM of the applicant's eligibility or raise doubts? Remember the DM may know little or nothing about your form of inflammatory arthritis and how and where it can affect you and your body.
See my notes in chapter 18 about completing forms. When you're satisfied, and have completed the form, keep a photocopy with the date you send it off. Keep the copy safely with any other related papers plus notes of any further contact you have with DWP officials and others, by phone, email, post, etc — include the date and name of the person.
Keep time limits in mind, they're important. If agreed, benefit payments are usually backdated to when you first asked for the claim form, but only if the completed form is returned before a certain date. Don't delay, because back-dated payments may not be allowed, or may be restricted.
Medical assessments If you're asked to have one, read up on tips beforehand, eg from the NRAS booklet. Besides asking questions about your everyday life, the doctor will be watching and making assumptions about everything s/he sees you doing — how you get up and down, move across the room, take your coat off and on, whether and when you ask for help, etc. The doctor will be acting on guidance in the Incapacity Benefit Handbook for Approved Doctors.
Take with you a photocopy of the claim form you completed, to remind yourself of what you wrote. You could have a friend with you to witness what happens and what answers you give to questions.
Be prepared for the sort of questions the doctor is likely to ask; for instance about how you spend a typical day, and how your medical condition affects each part of what you do. For instance the form asks you about standing — can you stand to do household chores such as washing up or cooking, or standing in a queue in a supermarket or waiting for public transport? Walking — can you get to a local shop, around a supermarket, exercise a pet? Do you need help? For how long can you walk? Does it hurt? Where? Do you have to take painkillers? How many you take, and how often could give the doctor an insight into the variability of your condition and the pain you have.
If the doctor carries out any physical examination, do speak up if anything causes pain or discomfort — don't just grin and bear it. The doctor can't read your mind.
At the end of the session if you don't agree with the pre-report the doctor reads out to you, say so (politely!), and if in turn the doctor doesn't accept what you say, ask for your disagreements to be recorded.
Whether or not benefits such as Income Support can be paid to you while you're on a course depends on your age, on whether the course is full or part-time, and if part-time, for how many hours; on your disability and its effect on your ability to work, etc. Seek advice; it's complicated! The Disability Rights Handbook explains the various rules, including benefits and government training opportunities and allowances for adults. You can also gets lots of information from Skill, the National Bureau for Students with Disabilities.
Be careful; if you receive a benefit because of 'incapacity to work', taking a course might raise questions about your 'incapacity', so find out beforehand what your position is. Whether you're considered 'incapable' depends on all sorts of things — the Disability Rights Handbook gives helpful tips. Similarly starting a training programme may suggest a lessening in your care or mobility needs so any DLA you receive may possibly be reconsidered. Take independent advice.
Some benefits depend on your NI contributions record. You pay contributions if you're working, but they can also be 'credited' in certain other circumstances. If you're studying, you might qualify for credited contributions, depending on the type and length of your course. Don't miss out on being credited if you can help it; the credits may make a difference to entitlements later. If you're non-disabled, the course has to be full-time, but if you're disabled, can be 15 hours or more a week. Some courses count for automatic NI credits, for others you have to apply specially. Check with BEL, CAB or other independent adviser.
Disablement Resettlement Officers (DROs), Access to Work Officers (AtWs) and other Jobcentre Plus staff can advise on employment services generally, and concessions or special schemes for people with a disability. Some types of work, called 'permitted work', may be allowed by DWP even if you're on benefits. How benefits, employment and disorders like RA affect one other is a horribly complicated area. You could start finding out by looking at:
Throughout this book, I've included other information to help you financially. Take advantage of any concessions and benefits for which you qualify; please don't be too proud. Why be poorer or more dependent than you need be? Isn't there some truth in the saying 'to each according to their needs, from each according to their ability'?
For an overview look at the government's information website, directgov, and back at the sources listed at the start of this chapter.
Look too at other chapters in this book. For instance:
It's always worth asking around to see if help can be given, even if you've no idea who might help or how. Try your local social services department, your doctor, the local CAB, DIAL, church, local and national charities. Some businesses and commercial organisations have charity funds for certain purposes. Find out about local charities through your local library or church. Try:
Keep a lookout for books and leaflets giving tips on money management. Bulk purchases bought alone are expensive, but could you perhaps share the cost with friends, to save money? Visit jumble sales, Oxfam and other charity shops, and car boot sales. Some second-hand goods and equipment are real bargains, provided you avoid rip-offs.
For money management advice try sites such as:
Budgeting on a low and fixed income isn't easy. If debts do mount up, try not to panic, but contact your CAB, Money Advice Centre (look in the phone book or ask CAB) or Law Centre for help in working out what to do. If you live in England or Wales you can get free information from the National Debtline on 0808 808 4000. In Northern Ireland from Adviceni. Also the Consumer Credit Counselling Service (CCCS)'s national UK-wide free telephone service on 0800 138 1111.