Maggie's

When youngsters are ill (I)

However hopeful the prognosis may be - and thankfully for the majority it is very hopeful these days - it must be amongst the very hardest of things, to be told that your child has cancer.

And on top of the unimaginable emotional impact such news brings, the consequences of diagnosis and subsequent treatments can throw a family's finances into turmoil overnight.

For few young families are comfortably off financially, with many relying on two wages to meet essential commitments such as mortgage payments or the rent. Yet all of a sudden you find yourself in a situation where somebody may well need to be home all day for the foreseeable future and the unforeseeable future is something you can't bring yourself to focus on...

The chances are that your employers will initially at least be hugely helpful, saying things like 'take all the time you need'. But sadly, much as they may want to, few can afford to maintain this arrangement long term. Obviously everyone's situation will be different - and the levels of flexibility and understanding from employers will vary.

You may find that you are simply too unwell to be in work - especially short term - simply because of the way your emotions are impacting on you. On the other hand you may find that being able to work on days that you are free offers some distraction or gives you access to important emotional support from colleagues as well as a degree of financial security. You may be in a position where you and/or your partner can negotiate home working or part-time working for a period, whist sharing your child's care needs - or you may be a lone parent with the boss from hell...

Talking to your employers and keeping them in touch with what's going on is probably the best starting point - there is no automatic right to time off when family needs demand it, but feeling 'in the loop' will usually help an employer to try to find ways to meet your needs as well their own. Initial meetings with medical staff responsible for your child's treatment should at least enable you to tell your employer roughly how much time off you will need and for how long this is likely to be an issue.

The same advice stands where you have major financial commitments - e.g. if you know you are likely to see your household income drop substantially for a period of some months talking to your mortgage lender early can help a lot.

If creditors are not flexible, then involving Citizens' Advice or another reputable source of free Debt Advice early on is always better than letting things drift... And please don't be tempted by one of the many firms now offering to 'put all your loans in one basket' until you have sought independent advice elsewhere.

Different but still substantial financial difficulties are faced by families who don't have a wage coming in in the first place, the hand-to-mouth existence afforded by living on benefits long term allowing little leeway for saving 'for a rainy day',  let alone for cloudbursts...

So what extra help might the benefits system be able to offer?

 

For the child:

Whether parents are in or out of work, the main extra benefit the child or young person might qualify for is Disability Living Allowance. There are different rules involved when DLA is claimed for children which I'll explain in detail next week.

You may also find that you qualify for more Child Tax Credit - or qualify for it for the first time if either:

>  your household income is likely to be lower this tax year than in the last tax year and/ or

>  your child is awarded Disability Living Allowance  

 

Help whilst someone is off sick:

For some people, taking time off sick from work will be the only realistic option.

In these circumstances, most people who were working for an employer have a legal right to non means tested Statutory Sick Pay for the first 28 weeks, and many will have more generous contractual arrangements - e.g. 12 week's full pay dropping to 12 week's half... Whilst on SSP or on SSP plus your contractual arrangements - you may also find that you qualify for some means tested Income Support on top, depending on your financial circumstances/ the hours and wages of any partner.

Getting Income Support can not only open up entitlement to help with one-off costs through the Social Fund, it can also enable you to claim back fares to and from hospital and will also eventually help with the interest part of your mortgage repayments.

And whether of not you qualify for Income Support, you may also find that you qualify for means tested Council Tax Benefit, and, if you rent your home, Housing Benefit. These are clamed via your Local Authority rather than the DWP.

At any point when your wages drop below £95 a week you may also find yourself eligible for Carer's Allowance - see below.

If the emotional impact of your child's illness is such that it's impacting on your own self care or your safety, then beyond three months you may also be able to claim non means tested Disability Living Allowance yourself.

After 28 weeks, entitlement to Statutory Sick Pay ends, but you can claim Employment and Support Allowance instead, even if you are still on your employer's books - and indeed even if you are still receiving some money from them. 

People who don't have access to Statutory Sick Pay - e.g. people who are self-employed or people who were already on non sickness route benefits like Jobseekers' Allowance - can claim Employment and Support Allowance straight away.

The medical tests for receiving ESA are quite tough though - sadly being 'worried sick' is not enough in itself - and it would be a good idea to get advice before completing the ESA50 form issued a few weeks after you claim the benefit.

Depending on your National Insurance Contribution record, you may find that you can receive 'Contributory Employment and Support Allowance' irrespective of your partner's hours, wages, any savings etc.

As long as your partner works under 24 hours a week, and dependant on savings and other household income etc. you may also qualify for 'Income related Employment and Support Allowance', which brings all the same 'passported' help as Income Support as well as eventual help with mortgage interest etc. 

Housing Benefit and Council Tax Benefit may also be options - see above.

 

Working Tax Credits help whilst someone is on SSP or stays in work for over 16 hours a week:

Families in this situation - even if one partner is claiming Employment and Support Allowance - may be able to get help - or more help than they already receive - through Working Tax Credit.

If you were already receiving Working Tax Credit but have become too unwell to work, you can carry on getting it as long as you are on Statutory Sick Pay.

Sadly Working Tax Credit won't help with mortgage interest - so if you have a mortgage it may be worth you finding out if you would be better off reducing your hours to come off Working Tax Credit and qualify for one of the benefits which do help with mortgages instead - but do approach this step with caution, please - and only having sought reputable advice based on your individual household circumstances.

You may, though, be able to get some Housing Benefit and/ or Council Tax Benefit whilst on Working Tax Credit.

 

Claiming as a Carer

Another option would be for one parent - sadly not both - to claim as a carer - as long as the child is awarded DLA at the middle or higher rate of care. Carer's Allowance (which is non means tested) doesn't pay much in itself, but again Income Support can be claimed on top of it - with all the advantages listed above.

To get Carer's Allowance you must be looking after the child for 35 hours a week or more. It is also one of those benefits which 'overlaps' - i.e. you can only get one of at any one time - so if you already receive Incapacity Benefit, Contributory Employment and Support Allowance, Severe Disablement Allowance, Retirement Pension, Bereavement Allowance or Widowed Parent's Allowance you may not be able to receive the Carer's Allowance.

It can, though, still be worth claiming Carer's Allowance because having 'underlying entitlement'  to it - i.e. you would have got it, had it not been for another 'overlapping' benefit' - is enough in itself to add a 'Carer's Premium'  on to your household's entitlement to means-tested benefits like Income Support, Income related ESA, Housing and Council Tax Benefits.

 

In general

The complexities of individual families' circumstances mean that the best 'route' through the above options will vary from household to household. It's important then to get good advice based on your own situation if more than one of the above options might be open to you.

Organisations who exist to support families affected by childhood cancer will also be able to provide practical and emotional help and support  - a good starting point to find out what's available in your area is through CLIC Sargent.