Above is a suitable car seat for most four-year-old children. It costs £29.99. Below is a suitable car seat for Benjamin. It costs £2,301.00.
Above is a pretty fancy bean-bag. It costs £37.99. Below is Benjamin in his bean-bag. It cost £972.00.
The average cost of a new bathroom in the UK is £4,500, according to specialists Victoria Plum. Quotes for the downstairs wet-room we need to be able to shower Benjamin in safety (there isn’t even the option for a bath, much as he loves them) range from £9,350 to £14,760. A grant from the council will cover part of this, leaving us to shoulder approximately £8,000 of the cost.
A pack of vests for my youngest cost £3.50 for five; vests for Benjamin are £3.50 each, and these are the cheapest ones. I could go on (and on, and on, as I’m sure could most people with a disability). The charity Scope reported this year that on average, “disabled people face extra costs of £570 a month related to their impairment or condition,” even when their benefits such as Disability Living Allowance or Personal Independence Payment are taken into account. This is undoubtedly our experience. Because of Benjamin’s needs, we spend more than other families on heating our house, more on travel to and from hospital and appointments, more on insurance, more on clothing, more on laundry, etc., etc. Not to mention the fact that our income is lower than it might be because there is no way I will ever be able to work full-time since childcare for children like Benjamin outside of school hours is non-existent.
How are we supposed to meet these extra costs, none of which are met by the state? We were fortunate that the charity Newlife fundraised to cover Benjamin’s p-pod. Radio Forth’s ‘Cash for Kids’ are contributing a generous £3,000 towards his wet-room. The wonderful staff at Kindred have tirelessly applied for small grants to cover the extra travel and childcare costs we face whenever Benjamin is hospitalised.
But that’s it. So far I’ve drawn a blank trying to find a charity that will fund the car seat that Benjamin urgently and desperately needs – without it he simply can’t travel safely which means he won’t be able to get to important hospital and therapy appointments. There are no other charities that will cover the outstanding cost of house adaptations. The reason? The major sources of funding for disabled children, such as Family Fund and the Caudwell Trust set an earnings threshold which we fall just above. Although Benjamin fits the medical criteria, we will never be able to take one of Caudwell’s ‘Destination Dreams’ holidays to Florida, because we don’t fit the income criteria and there is no way we could afford, or have the time to organise, the immense practical and medical support needed to take Benjamin on a plane and far away from his local hospital.
One charity sent back my application for funding to help with Benjamin’s car seat, with pink highlighter over the expenses we declared that apparently indicate we are ineligible for help, including the cleaner that I pay for out of Benjamin’s DLA to allow me more time to look after him, and the amount I estimated I spend on presents (for when the girls go to other kids’ birthday parties, and end of term presents for the numerous staff that help all of our children in such wonderful ways). Benjamin’s sisters are stigmatised enough by association with their brother and miss out on many things because he is in hospital or has yet another appointment. The least I can do is try and ensure they attend their friends’ parties when they are able, and that they take a present with them like everybody else. This despite the fact that I accounted nothing for, say, extra expenses during hospital admissions, or holidays, as there were no boxes on the form for these. Clearly families with disabled children are not expected to enjoy such luxuries. Our girls have had nothing more than a long weekend away since Caitlin was born!
We are one of a large, hidden caste of families with disabled children who fall between two stools: we do manage to work and have an income that puts us just over the threshold for receipt of benefits including carer’s allowance and tax credits, and therefore face the enormous additional costs of disability practically unaided, on top of paying the usual bills such as a hefty mortgage and attempting to provide necessary items and the occasional treat for our children. I know we’re living beyond our means, even if I haven’t got time to sit and calculate our budget: the last time I worked through our income and expenses with our Kindred advocate, a couple of years ago, I was shocked to find we were running at a net deficit of roughly £400 a month.
Yes, we are fortunate enough to have some funds in a savings account in case of emergency. In case, say, Benjamin needs a power-chair that won’t fit down our hallway and we have to move out of our ‘forever’ house. In case, God forbid, he passes away meaning our Motability vehicle would be repossessed and we would suddenly need to buy a car. And of course we’ll happily use our savings for anything that Benjamin needs, because nobody else is going to help us with those kind of expenses. Money in the bank isn’t everything, won’t buy us happiness, and is no use when you’re gone. So unlike most middle-class families, building up their savings to put their children through university, ours will likely be whittled away well before they may choose to go there.
I know we are the fortunate ones. Every family has some kind of unexpected expenditure to deal with, whether that’s a disabled child, a sudden redundancy, a health crisis, or just a little girl who would give up everything to ride a horse. At least we do have some rainy day funds that will suffice for now. For now we can absorb the extra costs of disability without running into debt, relying on foodbanks, or disadvantaging our children’s prospects in today’s dog-eat-dog world.
And I hate doing it, but as well as eating into our savings I will continue to fight for state and charity funding, because that’s the kind of world we live in. That’s what the rich, the influential, the educated and the well-connected are doing. I will write eloquent letters, I will fight social media campaigns, I will go to the press, and I will cry down the phone if I have to (usually I can’t help it anyway). I will reapply again and again explaining our household budget in ever more demeaning detail and pleading for Benjamin to get the car seat that he needs before he no longer needs it.
I hate doing it because it makes me feel mercenary. Because it makes me go over and over our worst case scenarios when I want to hope for the future. Because it means I have to explain and justify our spending habits to strangers. Because it makes me feel guilty about taking limited resources away from those that don’t have the knowledge, education, time, health, resources and energy to fight for them.
I hate doing it because I don’t want Benjamin’s sisters to pick up on it. I want my girls to prioritise the values of happiness, kindness, fairness, gentleness and concern for others over money, and I don’t want them to see me doing any different, but I also want them to know I fought for them to have both. So while I will keep fighting I have to balance that with awareness-raising, fundraising, volunteering, trying to give back to others in as many ways as I can.
It’s draining, it’s demoralising, it’s exhausting. The financial costs of disability are enormous, but the cost is not just financial; disability (by which I mean social disability – being disabled by the world around us rather than by one’s own limitations) costs dear in terms of time, energy, sanity, stress and relationships. We are so fortunate that – at least until our savings run out – we can shoulder the financial burden and this gives us the breathing space to be resilient against the other pressures. Many are not so lucky.