Money matters

Introduction

Like all other parents, the parents of children with arthritis want to provide everyday items or activities for their children to enjoy. When a child with arthritis is mainly well, the daily living costs seem similar to those for other well children, but when a child experiences a serious flare in disease, or begins to develop ongoing joint problems, the hidden costs rise. There are also costs involved with the child being less able to use public transport, or free public amenities, like play parks and country walks. Attending many clinics and appointments also add to costs for the family, both in the time taken off work by parents, and transport costs. The extra work of being a carer may also stop a parent from returning to work, or working as many hours as a parent of a well child.

For these reasons, on average, household incomes are lower among ‘special needs families’. In 1998[1], researchers estimated that looking after a child with a disability in the United Kingdom cost approximately Ł7,355 per year – at least three times that of bringing up a child without a disability.

Many families continue to struggle unaided because they are unaware that some financial assistance is available for most children with enduring arthritis. In the United Kingdom, there is a system of financial help for children and families through Disability Benefits that aim to help families meet some of these costs, irrespective of the family income. The most relevant benefit is Disability Living

Allowance, which is payable in two parts every four weeks. If a child requires a high level of personal care, she can qualify for the care component. If a child needs help getting around, she can qualify for the mobility component. Other allowances are also available depending on whether the family receives other benefits.

‘The only thing we’ve got is Disability Living Allowance which again we didn’t know that we were eligible to claim for until a year into the disease, so we missed out on a whole year.’

General advice for filling in forms

Talking to someone you know about the challenges of daily life can often be difficult, and even more so when talking to a stranger, especially if it has to be in writing and on a long repetitive form. For parents it is also very depressing because you have to describe each and every problem that your child faces. Many of the questions in the forms ask you to repeat information several times. It takes hours to complete the form, but the financial help will benefit your child for months, if not years to come. Get someone to help you complete these forms.

‘I got so used to helping her, I had forgotten that other children of her age could do these things themselves.’

How to fill in forms

Be honest about your child’s abilities and needs.
Describe exactly how your child manages – state what happens.
Make comparisons with children of the same age.
Give examples to explain what happens or what would happen if you didn’t intervene.
Read the whole form first to get an idea of the topics they will ask you about.
Ask a friend, or experienced advisor to help you.
When necessary, add extra information on relevant page – it can’t get lost like extra pages!
Make a copy of every form or letter you write and keep them together in a named file. You will need to refer to what you have written.
If you get stuck – telephone the confidential Benefits Enquiry Line – BEL - 0800 88 22 00 for advice, or your local Parent Link Project.
Equipment includes glasses, commodes, bedrails, large buggy, walking aids, hot packs etc.
It is very important to describe the days when the child needs a lot of help and to say how many days over the last week or month that this has been the situation.

Please Note

You will be asked to nominate someone who knows the child and who can support your claim. Choose someone who is fully up-to-date with the situation and who will reply quickly to enquiries from the benefit office. Busy consultants are not always the best people to do this.

Remember, it can take about 8 hours in total to complete a form, but the benefit if awarded, will last for years.

Reports from Professionals and other supporting material

It is important to include reports from professionals who know your child and who can communicate their assessment of the child’s needs. Where you regularly see the professional, ask them to write a summary of your child’s needs/functional difficulties (and give them a note to remind them what it is for and a stamped self-addressed envelope). Some professionals however will still believe that a note confirming the diagnosis and drug dose is enough –when it’s not.

[1] B Dobson & Middleton S (1998) Paying to care: The cost of Childhood Disability, York Publishing Services. ISBN 1 899987 75 4