Maria Cook, 47, is the mother of Ryan, who is 15. Ryan is autistic with learning disabilities, Obsessive compulsive disorder (OCD) and Tourette’s. The family, including stepdad, Lee, live in Crawley. Research by the People’s Pension has calculated the impact of caring for a child with a disability on parents’ ability to save for retirement. It found parents of disabled children who return to work part-time are £89,000 worse off in retirement than parents who are able to continue working, while those who take a career break to care for a disabled child and receive a pay cut when they return are £55,000 worse off. Here, Maria talks about the financial implications of having a disabled child.
Ryan needs support with every aspect of his life: with personal care, help with eating safely, he’s still in nappies and has no danger awareness. Settling him into bed is a struggle. He has such significant OCD that he has these rituals that have to be done many times over and if his ritual gets interrupted, he has to start again. If he gets to bed at 10.30pm that’s a result. It’s particularly tough on Lee, who has to get up for work at 4.30am.
Ryan is a barrel of fun, he just needs extra support. Having a disabled son affects us financially in many ways. It meant I wasn’t able to return to work because of Ryan’s level of need, so we’ve had to live on one salary.
It has also meant we’ve not been able to save much for a pension: Lee has opted out of auto-enrolment as we can’t afford to lose the money from his salary – in total he has £8,000 in his workplace pension. I had managed to save £30,000 in my workplace pension for the job I had before I was pregnant, but I have never been able to add to it, and doubt I ever will. £38,000 doesn’t feel like it will last us for many years when we do retire.
For everyday spending, I take a lot of time comparing costs to make sure we pay the minimum. I spend hours on supermarket comparison websites and I have to constantly shop around to cut down the cost, whether it’s food, toiletries, clothing.
Everything is a constant comparison and my Sundays are taken up doing this research: working out what I have to buy online, what I have to buy in store. Then I spend time in the week going to yet another shop to buy something cheaper and I have to factor it into my day.
It’s stressful and I hate it, especially as there is so much bureaucracy I already have to navigate when you have a disabled child. The added burden of not having enough money takes up more of my time again.
I get a carer’s allowance of £81 a week and we get a disability living allowance payment of £434 month. Come November, Ryan will turn 16, which will see him having to move to personal independence payments (PIP), and we are constantly worrying if we will lose this money as we know how hard it is to get PIP payments approved as it’s not an automatic transition.
Through a charity we get one Saturday morning a month respite – Ryan goes to a club – and we get two sessions over the summer holidays. The local authority has also given us a personal budget to employ a PA to provide some respite care, only we can’t recruit anyone – I have been trying for months with no luck.
Other expenses are having higher electricity and water bills as Ryan loves water play and he insists on our lights being on all the time, even during the daytime. His tablet always has to be fully charged up when he uses it otherwise he gets very anxious.
I can’t buy him own-brand crisps. It has to be Walkers or Hula Hoops – if we try the cheaper versions he’ll know and will refuse them and become very upset. He’s also very specific over what clothes he will wear. It has to be Spider-Man or Star Wars, so again you’re paying a premium for that.
We holiday every year for one week in Jersey. We stay in the same hotel, in the same room, sit at the same dining table, use the same hire car. Everything stays the same, so there is no stress. We go there as it’s not too far away and Ryan couldn’t handle a flight any longer than one hour. We don’t fly out of Gatwick, which is close to our house, because only EasyJet flies out of Gatwick, and Ryan doesn’t like anything that has the colour orange. The costs do mount up but we need the break. Jersey is not cheap, if you buy Walkers crisps out there you can probably add another pound on the cost.
I do worry about affording our retirement as Ryan is not going to be independent so where does he go? He’ll have to stay with us. I worry about the future – both financially and what’s going to happen to Ryan when we are no longer around, but I’ve learned to force myself to stay in the present.
As told to Jessie Hewitson