By Penny Wincer
When you have a child who is disabled, amongst the diagnosis and therapies, fighting for access to education and ensuring you’re able to meet their needs as best you can, there can be huge financial pressures. Raising a disabled child can cost an extra £581 a month to access the things that non-disabled children have access to. Add to that, working can become extremely challenging for those supporting a disabled child, with 84% of mothers with disabled children unable to work, compared to 39% of mothers of non-disabled children. This is due to a combination of factors including lack of flexibility from employers and an almost complete lack of childcare suitable to meet the needs of disabled children.
Many disabled children will not go on to be independent as adults, leaving parents deeply worried about meeting both their financial and care needs for the rest of their lives. As parent carers, it’s vital that we access the financial support that’s available, as well as ensuring we have put a few things in place for the future, for our own peace of mind. Here are just a few examples of ways you may be able to get extra financial support.
Carer’s Allowance is a benefit available to those caring for a relative or friend who receives the mid or high rate of DLA (Disability Living Allowance) or PIP (Personal Independence Payment) for 35+ hours per week. It is only £67.50 a week, the lowest of any benefit of its kind. It has some other conditions attached to it, excluding those who are in full time education and those earning above £128 per week. It’s worth remembering though that the cap on earnings is after taxes and pension contribution, so if you only earn a little over the threshold, it may be worth increases pension contributions to bring you under £128 per week.
One of the benefits of receiving Carers Allowance is that you automatically receive National Insurance Credits. In order to claim a full state pension at retirement age, you must have paid NI contributions or received credits for at least 35 years. Receiving Carers Allowance will ensure that your NI credits are covered for the years you are caring, even if you earn no income. If you do not qualify for Carers Allowance (for instance if you are in full time education), then you can still apply for NI credits as a carer if you are caring for more than 20 hours per week. If you are concerned about how many qualifying years of NI contributions or credit you have, you can check your record here.
To get the full picture on other benefits you can apply for as a parent to a disabled child, visit Entitled To or Turn2Us. If your child receives the high rate of DLA, that can increase the amount of Universal Credit or Child Tax credit you are eligible for.
If your family needs help to access more expensive items such as holidays or computers Family Fund is a charity supporting disabled children who may be able to help. You can apply for their fund once every 12 months, if you meet the eligibility criteria. The fund is set up to help families with disabled children with anything from essential items such as kitchen appliances, to holidays at Centre Parcs, Haven and Butlins, to garden equipment and specialist bikes and trikes.
Many people with a disabled child don’t realise that they may be eligible for a social care assessment. I certainly didn’t realise until I was told when my son moved to a specialist school. How can that help you financially? With a social care assessment, your needs as a carer will be taken in to account and it may be decided that you are eligible for extra help. I use direct payments for a paid carer to help me spend time with my other child, doing activities that my son can’t manage. With no family in this country, the only way I can get out and about with my daughter is if I pay for support for my son. My son’s social care package makes a big difference to the support we can afford.
When getting out and about, don’t forget that many attractions around the UK allow a carer to attend for free. If you’re taking your child to a theme park or attraction, check their website for eligibility criteria and the correct proof you’ll need on the day to show that your child needs your support as a carer. It can really cut the costs of days out. You may also be eligible for a CEA card which gives carers the ability to go to the cinema for free with the person they support. The My Max Card is a discount card available to foster families and families with disabled children and it aims to make activities and days out more accessible to those families.
When it comes to the future, one thing that is absolutely vital for parents of disabled children to do is make a will. Firstly, to nominate guardians for your child if you should die but also to ensure that any asset, such as a house, money or other investments, are put into a trust.
An outright inheritance could cause serious issues for a disabled person’s ability to access their benefits and social care package. If you have a child that is likely to be reliant on these benefits and services, you can create a trust in your will. The assets will be theirs but being held in trust will mean it doesn’t affect their ability to access what they need. Two trustees are appointed in your will to act on behalf of your child.
When writing a will in these circumstances you must use a qualified solicitor. It is not advisable to use quick or cheap will services as you will need thorough and specialised advice when a disabled child is involved. You can find out more about writing your will and setting a trust when you have a disabled child in Mencap’s downloadable guide.
When it comes to finances, whether it’s concern about making ends meet right now, or worries about the future, as parents of disabled children, it’s important we don’t keep our heads in the sand. There is a lot of free support and advice out there to tap into.
Scope also has a hotline open to all disabled people and their families which can help with all sorts of issues relevant to disabled people including finances, benefits and social care.
Carers UK also have a website packed with information for carers of all kinds including finances, accessing flexible working, benefits and pensions. They also have a helpline if you need advice about your specific situation.
Contact is a charity which supports families with disabled children. They also have a helpline to get personalised free advice and even set up specific appointments for advice on finances and benefits
 Papworth Trust Disability Facts and Figures 2018
Penny was born and raised in Melbourne. After many years as a freelance photographer, shooting for magazines such as Country Living, Living Etc, House Beautiful, The Guardian Weekend, Penny began writing about life as a creative freelancer, single parent and raising a disabled child. She has written for The Telegraph, The i Paper, The Metro and Red Magazine amongst others and co-hosts the podcast Not Too Busy To Write with fellow author Ali Millar. Her first book Tender: The imperfect Art of Caring was published in June 2020. Penny lives in South London with her two children.