This blog looks at the practical differences that claiming health -related benefits under “special rules” makes. Which benefits are affected? How does that change the way a claim is made? What if someone doesn't want to know about the details or prognosis for their cancer? Can someone else sort out the claim for me? How much might I get? Welcome to a two part blog looking at claiming benefits under the "special rules", that can apply in the case of more advanced cancers. These rules can make the process of claiming the main health related benefits much easier and quicker, as they bypass the usual health assessment processes for both:
- “sickness” benefits: that offer a basic income - for those of "working age "- to replace earnings, when you are too unwell to work much or at all
- “disability” benefits: that give extra help - at any age - paid regardless of income and savings - to help with extra costs of daily living and getting around that health conditions like cancer can bring.
Progress in treatments and diagnosis of cancer, mean that a growing majority of people survive their cancers. While they may still claim from a sickness and/or a disability benefit, they may well not be doing so under “special rules”. Any award would then then depend on an assessment of the day to limiting effects of cancer and any other health conditions that you may have.
However, there are still times when cancer is more advanced and potentially life-limiting, either when it is first diagnosed or if your cancer becomes so later on. In those situations, the “special rules” speed up claims and bypass the usual health assessment processes.
- Here in Part 1, we look at the practicalities: Which benefits are affected by “special rules”? What differences do these rules make to the claim and assessment process? Do you have to be involved in the claim? What level of award typically results?
- In Part 2, we will look at: When exactly do the “special rules” apply? There is some confusion and myths about who can claim under these rules. If you prefer not to get into questions around prognosis, you may wish to give Part 2 a miss and just go with the information at the end of this blog.
Which benefits do “special rules” apply to?
Disability benefits offer help – at any age - with the additional costs of daily living and getting around, that disability or illness can bring. These can be paid whether you are working (even full time) or areunable to work . They are paid regardless of other income, savings or past National Insurance (NI) contributions. So, almost anyone can apply, but payment depends on meeting the disability criteria.
There are three disability benefits, but you only claim one at a time. Which one, depends on your age when you firts apply:
- Attendance Allowance (AA) - for those first claiming after “pension age”. This age is currently rising from 65 to 66.
- Disability Living Allowance (DLA) – now only claimed by under 16s, but previously claimed by all under pension age. Adults who were getting DLA are being required to claim PIP – see below – instead, unless they had turned 65 before April 2013. Those older DLA claimants continued as before, to claim DLA into pension age
- Personal Independence Payment (PIP) – replacing “working age” DLA for claims first made by those over 16 and under pension age. As with the former DLA for adults, any PIP claimed in "working age" will continue as you move into pension age.
In Scotland, these three benefits disability benefits will be replaced by three variations of a new Disability Assistance (DA) during 2020/21. DA will follow the same broad criteria as the three current benefits so as to simplify changeovers from the existing to disability benefits to DA. Swapping to DA will, then be an automatic, administrative process with no re-assessment required. Your claim will be handed over from the DWP to Social Security Scotland, who operate under the strapline of "dignity, fairness and respect" .
For those who may be starting off with DA, it may be nice to know that the intention is for DA to be a friendlier and easier benefit to claim. Anyone still awaiting their turn in process of switching from "working age" DLA to PIP will no be put on hold, and will switch from DLA to DA instead. Although DA for Working Age People will use the same points system as PIP, the assessment process will be very different - in a good way .
DA will also come with a simpler version of special rules.
See the links below for more information about disability benefits.
Benefits for sickness:
Sickness benefits provide a basic income for people of “working age” who are too unwell to work either at all or only a little.
These don't apply to people of pension age because a basic income is already covered by State Retirement Pension, with top-ups available from Pension Credit, whether in sickness or in health. The extra help for older people affected by cancer comes from disability benefits, which can also sometimes lead to extra amounts in Pension Credit too.
However, for those of “working age”, the assumption is that you would normally be earning, so the “sickness benefits” are there when you can’t earn at all or can’t earn very much. There is a mixture of “non-means tested” help (payable regardless of savings and most income) and “means tested” help, paid either instead of this or as a top-up to it.
Contributory Employment and Support Allowance (C-ESA)
This is the non-means tested benefit for sickness - i.e. it is payable regardless of most other income and savings, if you have the right National Insurance contributions. It remains a separate benefit through the changes. Most new claims though, are for a version know as New-style ESA. The main difference is this version no longer has a link to Income-related ESA (see just below) which is being phased out
Income-related help for sickness
This is changing as the old Income-related ESA is merging into Universal Credit (UC), but for now both benefits co-exist. They are paid either instead of Contributory ESA (e.g. if you don’t have the right National insurance) or as a top-up to it.
Some people can still make new claims for Income-related ESA, while others still on the old-style Contributory ESA have the right to have Income-related ESA added on to their ESA claim – get advice.
However, most new claims will be for Universal Credit (UC) which is replacing the six main” working age” means tested benefits. UC doesn’t just replace Income-related ESA though, for it also includes help for rent (previously provided by Housing Benefit) and for children (previously via Child Tax Credit).
Claims for means tested help - whether from Income-related ESA or UC are made jointly with any partner. That also means that the amount you get (if any) is affected by most other income and savings (including those of any partner).
See the links below to where you can find out more about sickness benefits.
Your right to know – or not to know – about any prognosis.
Many people - especially with more advanced cancers - do not wish to know about their prognosis, even if there happens to be one.
After a cancer diagnosis has turned their world upside down, some people find they regain a sense of control by taking each day as it comes. They may not want to know all the medical details or about any prognosis. For others, that sense is helped by knowing all the medical information, the outlook and making plans.
And it can be different for the person with cancer and for carers and close family. They may have different “information needs”. There is no “right” or “wrong” here and preferences on this may change.
Historically, the benefits system has had arrangements in place to respect that choice; to protect people from “potentially harmful information”. There are though real concerns with Universal Credit’s understanding of respecting these choices or of special rules more generally.
What difference do special rules make?
Essentially, a claim under special rules:
- can often be made without needing the claimant to be involved
- are usually processed faster, involving fewer steps and less paperwork. In particular, there are no health assessments of your day to day difficulties
- often lead straight to the top rates of that benefit.
The common starting point for a special rules claim is that your consultant, GP or specialist cancer nurse issues a DS1500 certificate. This is simply a factual statement, detailing your diagnosis and any treatments. It does not have a space for any prognosis on it and nor is the person filling it in being asked to give an opinion. In fact, there does not need to be any definite prognosis, for special rules to apply.
This DS1500 by passes the normal assessment processes. So that means: no need to explain day to day difficulties on a lengthy form, nor any need to have a face to face assessment.
Who can make the claim? And how?
Normally, the benefits system requires the person receiving the benefit claimant to make their claim, unless someone else is either made an appointee by the DWP (to act in your place) or has more formal powers of attorney.
However, under “special rules”, there is usually a much more informal process for someone else to make the claim on your behalf, both to save you the bother of doing so and to protect your right not to get into questions of prognosis, if you do not wish to. The arrangements vary between the benefits:
The forms for AA and DLA make it very clear that the claim could be made by someone, and advisers keep a stock of forms to do so. For PIP, anyone can make the telephone claim on your behalf.
It’s a similar process with ESA – both Contributory and Income-related. No separate DS1500 is required, if this has already been sent into disability benefits. So, in practise, you might claim the disability benefits first and then any ESA when claiming under special rules..
UC wants to do things differently and has a “one size fits all” approach to its claims process. This can struggle to meet the needs of people claiming under the special rules.
UC is based on people making their own claim online, and that will hit you with a stark question “Are you terminally ill?”. Telephone claims by someone else may be the way round this, but there really needs a dedicated team or process for this. And in its absence, UC doesn’t help matters by generally being far less willing to talk to anyone except the claimant.
UC claims, then don’t always follow a reliable or smooth process in “special rules” cases, despite having exactly the same criteria to apply as ESA. This can mean: people being wrongly put into assessment processes, delays in sorting through UC confusions and a lot more work for Benefits Advisors to keep UC claims on track.
What to tell the person for whom you are claiming:
Even if you are sorting out a benefit for someone else, you should still tell them you are claiming it, as they may notice an extra payment in their bank account and they will receive a letter telling them about the award.
However, that letter will not mention that the award has been made under "special rules" or because of a DS1500
How much will I get and when will I be paid?
The amounts mentioned below are based on rates from April 2019 to April 2020.
Payments will start on a weekly basis, within a week or two of making the claim. You would:
- automatically qualify for the top rates of AA, DLA Care component or PIP Daily Living component (£87.65 a week in each case).
- DLA and PIP also have an extra Mobility component for difficulties getting around. In theory, any DLA/PIP Mobility award depends on an assessment of mobility difficulties, but in practice, any indication of mobility problems at the claim stage is usually enough. So, Mobility awards are more or less “semi-automatic” and usually at the top rate of DLA/PIP Mobility of £61.20 a week.
- The non-means tested Contributory ESA will include a Support Component from the start of the claim – rather than after the usual 3-month wait - and so will pay at a rate of £111.65 a week.
- There are extra amounts within Income-related ESA, that means you could get more than the basic C-ESA rates. The maximum potential amounts vary according to your particular circumstances so it is hard to put a figure on it. How much of that potential maximum you receive will also be affected by other income (with important exceptions) and savings.
- ESA normally pays fortnightly in arrears, but they will prioritise a first payment under special rules. Claims can also be backdated for up to 3 months.
This can vary as much as Income-related ESA, for the same reasons. In fact, there is more possible variation in UC, because it also includes amounts for rent and children that are paid as separate benefits for those on Income-related ESA.
- There is no prioritisation of UC payments for those on special rules, so you still face UC’s standard five-week wait until the first payment. You can apply for an advance payment - repayable from subsequent payments - if you need one.
- Normally, UC aims to pay subsequent payments monthly. There is though, an option to apply for more frequent payments, in exceptional circumstances, at the DWP’s discretion.
- In Scotland and N. Ireland you have a free choice – after the first payment at 5 weeks:
in Scotland you are asked to choose whether you would want further payments twice a month and if you would prefer any amounts for rent to go straight to a landlord.
in N. Ireland they will assume you want more frequent payments and rent direct, but you are free to go back to receiving the whole amount as a monthly payment.
- Special rules make things easier by speeding up and simplifying the application process, avoiding assessments of the day to day affects of cancer and in ensuring that top rates are paid.
- They apply to both “sickness benefits” that provide a basic income when not earning in “working age” and to “disability benefits” which offer extra amounts to people of all ages to help with some of the extra costs of daily living, personal care and getting around out doors that illness or disability can bring
- There are processes for claims to be made on someone’s behalf.
Next time: When do special rules apply?
Part 2 of this blog – Special Rules (2): When do they apply?- goes on to look at when special rules can apply and what is meant by an advanced and potentially life-limiting cancer
You may prefer not to explore that in more detail, if it might feel upsetting or if this cuts across your choice not to explore issues around your own prognosis. You might, instead, prefer to leave it at knowing that:
- special rules claims can be made where one of the medical team involved in your care has issued a DS1500 certificate
- awards are usually made for three years at a time; and they can be renewed after that time with a fresh DS1500.
- people can - and do - come off “special rules” as a result of good responses to treatments or their cancer going into spontaneous remission. Any renewal claim for sickness or disability benefits might then come under the ordinary rules and assessments.
You would be very welcome to drop in at any Maggie’s centre or to get in touch online for both help with these benefits and for general support when dealing with advanced cancers.
Useful links and further reading:
Other blogs in this series:
Part 2 of this blog - looking in more detail at the criteria for when special rules apply
Other blogs you may find useful:
- “sickness benefits", see the first in a mini-series of blogs by clicking here
- “disability benefits" - another mini-series, starting here
- means tested benefits – the old legacy benefits - in a mini series starting here
- Universal Credit (UC) – a mini series starting here
- Benefits in pension age – retirement pension and PC – starting here
- Find out more about.... Benefits and Cancer
- Find out more about befits for... Difficulties with day to day living and getting around
Post your thoughts and queries
- Members of the online community can share general queries, thoughts and experiences of special rules in the Conversation here