£119 billion: The contribution of carers and savings to the economy is woefully overlooked
I operate at about a six most days. Looking after my two girls is knackering. Let’s face it, looking after anyone 24 hours a day, seven days a week is exhausting, but with learning disabilities added this exhaustion is often combined with challenging behaviour and in my case, broken bones. I’m typing this piece with a broken finger which is annoying, but more annoying were the broken coccyx I got previously.
I say annoying because the violence which caused stems is not from cruelty, but rather from turmoil of mind over which my daughter has no control. She is quite simply one of the loveliest people I’ve ever met. But teenage years are tough enough without learning difficulties – the addition of them makes a tough time just that little bit worse.
No matter where anyone falls on the spectrum of teenage angst the accompanying parent ‘hatred’, is a necessary part of detachment. Neurotypical teens can indulge in a venomous comment, screamed or spoken coldly with a side order of a withering look and a little cathartic swearing chucked in. This release is a given, as families navigate through the caustic bio-chemical cocktail which is hormone fuelled adolescence. It’s necessary because at least on some level unless your children partly loathe you, they can’t leave you.
The difficulty we’re facing though, is that with a learning disability the need to leave is tempered by a lack of linguistic tools to wound. My daughter can feel the fury and feel the age-appropriate parental blame, but she has nothing to express it as effectively as a punch.
This is the route for non-disabled teens too of course, but gifted as they are with the choice of self control and an IQ within normal range those teens often wish to reconsider. I should make clear it isn’t the route for all disabled teens. Only those who experience it, who live it, can fully understand it and the choices you make as parents don’t begin and end with babies. In fact it could be argued that you only really understand your efficacy as a parent when the challenging years begin.
A resistant toddler can be picked up and carried to the place they do not wish to be. Not as simple with an adult child hell-bent on their own agenda. Irrespective of the facts, of the heartache and the bone break, there are still many whose opinions we have to endure. It seems judgemental attitudes are a luxury for those with too much time on their hands and a misconceived notion of their own flawless decision making.
It’s probably too simplistic for me to try and tell you now how much I love my children – the only way to describe loving someone with a learning disability autism and epilepsy is that is parenting plus. The plus being a fear of what will happen to them after we’ve gone. If the question is “who will love my children?” the answer that wakes me repeatedly is “who will harm them?”.
So in terms of challenging behaviour, that’s the way as I see it. I ask that question a lot. The trick is not to add a “me” to the end of it. The notion that any one of us should be so special, so ‘undeserving of disability’ to remain unaffected by its indiscriminate nature, is an odd form of arrogance I think. “Why not me?” is a much better question. Indeed why not any of us?
Carers UK is a charity which understands the “Why not me?” question well, for Carers week they published the findings of their In Sickness and in Health report.
The findings made for sad but familiar reading. Of the 3400 carers who were surveyed:
In 2010 the NHS Information centre statistics detailed that the numbers of carers providing over 50 hours care per week had doubled in the previous ten years. Carers UK working with the University of Leeds calculated that the numbers of carers in 2011 stood at 6.4 million and estimated that by 2037 the numbers of carers will reach 9 million. They also estimated that the savings made from these unpaid workers who love and look after family members with no meaningful pay, no holidays and very few substantive breaks, currently stands at £119 billion a year.
There is much talk of the cost of caring, the burden of disability and the much touted “horror of fraud”, yet strangely the value of people with disabilities and the contribution of carers to the economy and society is woefully overlooked. If you want to understand the value of carers in these days of austerity, the section in Carers UK report which details the failure of social care funding to keep pace with rising demand, and the fact that 26% of carers surveyed reported they had already experienced cuts to their services, tells you a great deal.
We’re lucky we’ve been listened to and offered emergency respite to get us through the crisis were facing. I’m holding out for my daughter to access an adult assisted living unit as soon as she’s old enough and hoping that the breaks we need to recharge our carer batteries will enable us to get through these difficult next few years without having to ‘burden the state’ with the cost of a residential school. A false economy that all councils would do well to recognize as they consider cutting respite services to save money.
The future is the thing I’ve thought about more than anything else since we received my daughter’s diagnosis when she was aged three.
I’m just hoping that we all get there in one piece.
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