Difficulties with day to day living and getting around

A blog adapted from the leaflet Find out more about benefits for.. Difficulties with day to day living and getting around. looking at help with these extra costs that cancer can bring.

You can claim these benefits regardless of your income, savings, National Insurance contributions or age, so they are available to anyone with cancer who qualifies. They can also enable a carer to claim Carers Allowance and other benefits.

Welcome to the second of short blogs adapted from the two-sided Find out More About ... series of leaflets. This time we focus focusing on the extra help available to help with those added costs of daily living and getting around that cancer can bring. And the linked support for carers who may be helping out.

This follows on from Find Out More About...Benefits after a cancer diagnosis, which offers a quick overview of benefits that may well apply after receiving a cancer diagnosis. There is more detail in the Benefits Blogs particularly those in the links below.

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What might you be entitled to?

Living with a diagnosis of cancer and the side effects of treatments has an impact on both your physical and mental resources. It can also lead to extra costs. Claiming one of the "disability benefits" can make a real difference and potentially could apply to anyone receiving a cancer diagnosis.

Disability benefits are different from "sickness benefits" and you can get both.

"sickness benefits" are about a basic income to replace earnings when you are too unwell to work much or at all - eg Statutory Sick Pay (SSP) Employment and Support Allowance (ESA) and limited capability in Universal Credit (UC)
"disability benefits" help with extra costs when living with a disability or long term illness , such as cancer, whether these stop you from working or not.

All three of the disability benefits - see below - are payable on top of any other income. That includes all of the benefits listed in Find Out More About ...Benefits after a cancer diagnosis. And any income from work. There are no savings or income limits, nor any need to have paid any National Insurance contributions, so a "disability benefit" could apply to any one who has received a cancer diagnosis if they meet the assessment criteria.

They can also trigger entitlement to - or an increase in - means-tested benefits for those on lower incomes. Neither PIP nor AA will ever mean a decrease in any other benefit. While an award is based on support needs, how you then spend it is entirely up to you.

Which disability benefit do I claim?

Which one you claim depends on your age when you first claim;

Disability Living Allowance (DLA) is still open for new claims for children under 16 and has both a Care component and a Mobility component. You may get one or both
Personal Independence Payment (PIP) - is replacing DLA for people of working age, - from age 16 up to pension age (reaching 66 by September 2020) again there are two components Daily Living and Mobility.
Attendance Allowance (AA) applies if you first claim after pension age. This is very similar to DLA Care component, but has no separate extra help for Mobility. Those who claimed before pension age continue with their DLA or PIP awards as they come of age.

All three are due to become part of a new Disability Assistance (DA) in Scotland during 2020 and 2021. The criteria will be very similar, so there will be no need for re-assessment if you already get on of these benefits. DA (for children and young people) will run to 18 and DA will take a different approach in the criteria for "special rules" (see below) .

It is, though intended that new claimants for DA will notice an easier, more user friendly claiming and assessment process under DA, which will be run by Social Security Scotland, under a duty to encourage take up and treat people with "dignity, fairness and respect" .

Changes will include: wider choice on how to claim, easier self assessment forms, help from SSS officers, greater weight on your self assessment, much less use of assessment interviews, different training of public sector assessors and longer awards.

How are "disability benefits assessed?

There is no automatic entitlement to disability benefits just because of a cancer diagnosis, despite the way this can turn your whole world upside down. Usually, your eligibility , will depend on an overall assessment of your day to day difficulties, whether caused by the cancer, the treatments and/ or any other health conditions.

AA and DLA go mostly on your form and advice if this feels consistent with the medical information. PIP is built on the Work Capability Asessment model used in "sicknes benefits, so follows the ESA model so a face to face assessment is much more likely.

There is no equivalent of limited assessments when "awaiting, receiving or recovering from" cancer treatments - unlike under the "sickness benefits". However, the disability benefits do have similar special rules, that bypass assessments entirely for many who may have a more advanced cancer. (see below)

Attendance Allowance (AA):

This is a benefit for people who are aged over pension age when they first claim. To get Attendance Allowance (AA), you must usually have had health problems for the last six months, although some people can get AA straight away - see ‘Special Rules’ below.

To get a claim pack call 0345 605 6055. The information questions are straightforward, but you may want to talk to an Advisor about the questions asking you to describe your day to day difficulties

Otherwise, qualifying for AA depends on whether you could reasonably do with some help with either "attention" or "supervision".

What is "attention" in AA?

This means a helping hand or some spoken support, encouragement or guidance, related to day to day tasks such as :

getting up and dressing, getting to bed
washing, bathing, shaving, dealing with hair-washing and toenail-cutting
moving around indoors, dealing with stairs, getting to and using the toilet
eating/ drinking
taking/ remembering medication
getting to and dealing with appointments
communication - dealing with mail, form-filling, making telephone calls, understanding or being understood etc.
thinking -any confusion, memory problems, problems with decision making etc.
the emotional impact of your diagnosis - e.g. experiencing anxiety or depression
any other mental health issues
leisure activities, hobbies etc.
coping during the night

Having to take things slowly, being in pain, and needing emotional support/ encouragement count, as well as any physical help you need. You do not actually need to be getting any help to qualify, just that you could do with some . Nor do you have to be unable to do these tasks unless helped, it may that it would make it that bit easier.

The issue is: Could you reasonably do with some help, if it were available?

What count as "supervision" for AA "supervision"?

You can also qualify because you need someone to be around for much of the day, just to be around in case there may be a risk of some danger e.g. if you:

are unsteady on your feet/ stumble/ fall
could have fits or faint
are unsafe in some other way
could suddenly become much more unwell

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How much is Attendance Allowance (AA)?

Attendance Allowance is paid at one of two rates depending on whether you could do with someone to help out or keep an eye on you:

just during the day or at night (for the lower rate AA)
or both day and night (for higher rate AA).

Disability Living Allowance (for children)

DLA Care

It is exactly the same criteria for DLA Care component, as for AA above. The equivalent of AA lower rate is DLA Care (middle rate) and that of AA (higher rate) is DLA Care (highest rate) and the amounts are identical. However:

Difficulties under DLA only have to have lasted for 3 months rather than 6t as in AA (though both are waived under special rules
DLA Care also has a separate lowest rate where help - of the "attention" sort might only make a difference for shorter periods of time, perhaps concentrated just around eg getting up.
Children face an additional test for DLA Care and DLA Mobility (lower rate) of comparing their difficulties and need for help with an average child of their age. That might either be extra help only due to their health issues, or it could be a different degree of every day attention or supervision

DLA Mobility

DLA also contains a Mobility Component - which has two separate parts, unconnected with each other.

a higher rate mainly focused on quite severely restricted physical walking., before severe discomfort sets in - be that pain, breathlessness or fatigue
a lower rate - where it is more about limitations - compared with an average child of their age - in getting from A to B in an unfamiliar place. That might be through reduced concentration, increased anxiety, sensory difficulties

Personal Independence Payment (PIP)

Who claims PIP?

This is a benefit for people who are aged under pension age when they first claim. PIP has

replaced the former Disability Living Allowance (DLA), for "working age" adults for any new claims.
ff you were already getting DLA and were aged under 65 as at the 8th April 2013, then you will have to claim PIP instead and will be contacted by the DWP between October 2015 and late 2020.
those over 65 at that date stay with their DLA award, as will people claiming PIP when they reach pension age. DLA claims can still be made for children under 16. as above.

How to claim PIP

To get PIP, you must usually have had problems for the last three months and be likely to have them for the next nine months. Crucially, in the case of cancer , these need not be at the same level, so many people going through a treatment year – when difficulties can vary considerably - can still qualify for PIP. Some people can get PIP straight away - see ‘Special Rules’ below.

To start a claim, call 0800 917 2222 see details here. They will take basic details over the phone and will then send out a PIP2 How your Difficulties Affect You? questionnaire a couple of weeks after you claim. The PIP2 can be a bit more of a worry as to how to fill it in, so so you may want to talk to an Advisor about this, even if you felt happy to make the original claim.

While PIP has the same rates as DLA (minus an equivalent of DLA Care (lowest rate) - PIP uses a very different “points based” system. So people switching from DLA to PIP usually end up with very different rates. Like DLA, an award of PIP has one/both of two components:

PIP Daily Living

This looks at how you reliably manage daily living tasks in ten activities:

Preparing food,
Eating, drinking and taking nutrition,
Managing treatments or monitoring a health condition,
Washing and bathing,
Managing toilet needs or incontinence,
Dressing and undressing,
Communicating verbally,
Reading,
Mixing with other people
Making decisions about money

PIP Daily Living is paid at standard rate if you score 8 to 11 points or enhanced rate if you score 12 or more points from across the ten Daily Living activities. The full points system is available here

PIP Mobility Component

This looks at how you reliably manage Mobility tasks under two activities:

Planning and following a journey - why you might need somebody with you e.g. in unfamiliar places (or even familiar ones), or to to cope with public transport to get you from A to B
Moving around - looking at how far you can reliably manage with physically walking, without undue discomfort: i.e. pain, breathlessness, giddiness, fits, unsteadiness etc.

PIP Mobility is paid at:

a standard rate if you score 8 to 11 points or
an enhanced rate if you score 12 or more points across the two Mobility activities.

So unlike with DLA, you can combine a lesser degree of physical difficulties with difficulties around planning or following a journey. Or if you have considerable difficulties e.g. in even familiar places, you could get top rates for . However, PIP wants to cut back on awards compared with DLA Mobility: so the distance for walking has been reduced and some discrimination was introduced against mental health difficulties.

Issues for both components of PIP

For both components, any help you could do with can count, even if you don’t get any. Essentially, could someone lending a hand, setting things up for you or offering verbal reminders and encouragement, make a difference The assessment should consider

variability– at the worst point in a typical day with rules when things vary between days
and what you can do reliably - i.e.: safely, repeatedly, to an appropriate standard and in a reasonable time.

Often cancer and its treatments may not stop you doing an activity completely, but can make it much harder to do so through e,g, tiredness, weakness, pain, restriction, concentration, low mood. You may get there in the end, but you may need to take your time, have to pick your moments, not do it too often, may be forgetful with potential safety issues, or not be able to do it to the same standard as before.

In PIP terms, you may still manage these activities -and do take credit for doing so - but perhaps not reliably.

Be kind to yourself

Claiming either AA or PIP involves completing long forms - and can also be emotionally taxing. A Benefits Advisor at Maggie’s can advise you on the process and help with filling the forms in, particularly those difficult big empty boxes when describing how your disability affects you

The process does focus in on limitations and difficulties and this can feel rather depressing. tSo do take breaks to pat yourself on the back as you go through them and take breaks as you have some time to complete them.

Repeating this all to a stranger - at a face to face assessment, can feel even harder and make you feel disbelieved, although these are routine with PIP. Do plan to do something nice after a form filling or assessment session, and do still be very proud and thing positively about the real difference an award can make. Getting a disability benefit can be a lot better than applying for one.

Carer’s Allowance

If you are awarded either rate of Attendance Allowance or PIP Daily Living Component or the top two rates of DLA Care, then someone else may also be able to claim Carer’s Allowance for helping you out or keeping an eye on you for 35 hours or more a week. Carer's Allowance is not means tested and can be claimed at any age.

It can trigger an extra amount - known as either a "carers premium, element or addition" in means tested benefits both in "working" or "pension" age.

However. get advice before claiming Carer’s Allowance, because the complex way in which the benefits system operates can sometimes leave the person being cared for worse off. by more than the amount that a carer gains.

Carers in Scotland get an extra Carer's Allowance Supplement from Social Security Scotland, This will eventually be merged into a new Carers Assistance from early 2022.

‘Special Rules’

For some people whose cancers are more advanced, there is a ‘fast track’ route to automatic payment of the top rates of either AA, DLA or PIP that bypasses the usual assessment process and leads to an automatic three-year award of either: AA (higher rate), DLA Care ( highest rate) or PIP Daily Living (enhanced rate) .

The process will also consider potential entitlement to PIP Mobility and this is often included (at DLA higher or PIP enhanced rates) if you have any mobility difficulties.

Payments can usually start within a couple of weeks of claiming, and there is no need to have had difficulties for a set length of time. Your Maggie’s Benefits Advisor can tell you more about this and help you with your claim.

For individual advice on any benefit matters, please contact your local Maggie’s Centre or check out support in our Online Community

Links and further reading.

Others Find out More Abouts...:

Find out More About... Benefits after a cancer diagnosis

Getting help and advice:

visit your local Maggie's Centre and talk with one of our Benefits Advisors.
see if there is a Macmillan advice service near you here
find your local Citizens Advice office: in England & Wales - here. In Scotland - here

Other benefit blogs:

You can also go the page to see the full range of Benefits Blogs currently available