The only people who really, genuinely, cared for Emily and her quality of life were her mother and her family, writes Fergus Finlay.
“Emily was my little bird with a broken wing whom I loved, cared for and protected. Our struggle is mirrored in the lives of so many people in similar situations in Ireland. Like me, very many parents and carers of children who are disabled, struggle on a daily basis to get access to services and support systems which are very often simply not there.”
That’s an extract from the statement read out on Bernadette Scully’s behalf, after she was unanimously acquitted of the manslaughter of her daughter. Most people reading it — especially if they have experience of disability in their lives — would have had three reactions.
First, an enormous sigh of relief that she had been acquitted. Any other result would have been a travesty of justice. Second, for many people, a strong sense of “there but for the Grace of God …”. And third, anger.
There are two simple rules that apply to people with a disability and their families in Ireland. The first is that disability brings second-class citizenship along with it. And the second is, the more serious the disability, the more likely you are to be on your own. The more support your child needs, the harder it is to get it.
And yet we spend billions. The HSE service plan for next year includes €1.6 billion for disability services. The Department of Social Protection plans to spend €2.3 billion on a range of supports in respect of illness, disability and carers. That’s €4 billion before you go anywhere.
By any stretch of the imagination, that’s an enormous sum of money. According to the last census, around 600,000 people in Ireland have a disability of some kind. Even if you were to divide that money evenly between all of them, it means that we are spending something like €6,500 per annum for everyone with a disability.
But in fact only about half that number of people are unable to work because of their disability. And a much smaller number — less than 60,000 people — have an intellectual disability. In other words, given the population that need services, and the amount of money we spend, it’s a complete mystery that the services aren’t to a Rolls Royce standard.
You could put it another way, the way an economist might. We get terrible value for money for the investment we make.
And it’s certainly not because people with disabilities abuse the services, or waste the allowances they get. They don’t even protest when their allowances are cut, as they were the moment austerity began.
No. The truth is that people with disabilities cope, and so do their families. Here’s another shocking quote from a report that emerged from the last census. “... a total of 187,112 persons or 4.1% of the total population were providing unpaid assistance to others in April 2011. Of these carers 114,113 (61%) were women and 72,999 (39%) men. It also showed that 4,228 children aged under 15 years were engaged in providing care to others, accounting for 2.3% of all carers.” While not everyone involved in those statistics was providing care to people with disabilities, just imagine where we’d be without that level of unpaid help. According to the census, it came to more than 6 million hours – two thirds of it provided by wives and mothers.
I was about to describe that care as voluntary. But that wouldn’t be true. Most of it is provided with love, but I have never met anyone who wanted to spend their entire working lives caring, without any support, for someone who couldn’t care for themselves. It’s not a choice anyone wants to make, because the thing you want most for anyone you love is their independence.
I know there are a lot of statistics here. It adds up to a huge amount of state investment and an equally large amount of unpaid investment. And the net result, in too many cases, is misery.
That misery is compounded by the absence of rights, and that’s where the feeling of second-class citizenship comes in. When Bernadette Scully talked about the struggle for access to services and supports that simply aren’t there, she was reflecting the position of far too many families.
And the word struggle is appropriate. When disability arrives in a family, nobody comes to you and says “how can we help?”. You’re on your own. Whether you’re talking about your child’s needs as a new born baby – or your own needs when you’re coming to terms with a diagnosis; or whether, at the other end, you’re talking about the support your aging child needs as you get older too, you’re on your own. At every stage, it’s a process of negotiation, with a system that always seems to be too overburdened to want to help.
There are laws, of course, but in many instances they’re a mockery. We can’t ratify the international conventions on the rights of people with a disability because some of our laws are utterly inadequate, and others have been passed but we can’t begin to implement them. I’ve written here before about the Disability Act, for instance – a piece of law that (at its very best) gives people an entitlement to a written statement about the services they need but can’t have. (Yes – that’s what the Disability Act says – you couldn’t make it up.) So what we’ve ended up with is a population of people who need our support, and who we pretend are entitled to our support. But that support expresses itself in very poor law, in financial support that is grudgingly given and hedged around by conditions, and in a mishmash of services that are often run with an institutional mindset, often badly and remotely managed, with limited accountability towards the people they’re supposed to serve.
In all of this, the only people who really, genuinely, cared for Emily and her quality of life were her mother and her family. They were the ones who cared most, and suffered most.
They’re not alone. But if they are to feel not alone, surely it’s time we made a fresh start where disability is concerned? We’re spending enough, in all probability, but we’re spending it badly.
The entire area needs to be put under new management. It needs a dedicated agency, and a Cabinet-level Minister, to bring the existing resources together, to impose higher standards, to ensure better management and accountability. It needs to put the person with a disability at the centre, and to surround the person with staff who can access proper careers, proper training and development, and good management on the ground.
Sooner or later, we’re going to have to recognise that we can do better. Sooner or later, we have to demand better value for the huge investment we make. Sooner or later, we have to insist that investment goes into a decent quality of life for people with disabilities, and better supports for their families. None of that is a lot to ask, and none of it would break the bank. But perhaps, if we finally got it right, little birds with broken wings might be able to fly again.
© Irish Examiner Ltd. All rights reserved