Charity mess covers up a plague of heartbreak
People who maintain their dignity and spirit against all odds deserve much more than Frankenstein system
Published 10/07/2016 | 02:30
'E' started coming when Mary was about six months old. They leave you alone initially. They send you home and give you a bit of time to get used to things. Someone will have spoken to you about "linking in with the services", because your child will now be a "service user". But generally they give you time to learn to breathe again. And then, if you are lucky, at some point, the services kick in. We were told we were lucky because we were in a good area for services, the best in the country, potentially. And gradually you come to realise that if this is the best area in the country for services, then you really have to pity people in other areas.
E was a home visitor. It was a huge luxury, really. Apparently future parents and future Marys may not get an E. So for about a year, E came every two or three weeks for an hour. It takes a special person to be able to help in a house that is undergoing the major adjustment of caring for a child with an intellectual disability, a family that is having to re-evaluate its future, its reality and its dreams.
I asked my wife Sarah what E did for her and Mary. This is what she said. "She would bring toys and strategies and assess where Mary was at, and tell me where she should be going next. She put things in perspective and, professionally, she was amazing.
"But it was the warmth that came with her that really helped. Mary wasn't a surprise to her, she was a baby with DS [Down syndrome] like the babies she saw all the time. DS wasn't a stranger to her, so she would just arrive - particularly the first few times - with unreserved joy and affection. That meant the world to me. It made Mary feel less like an interloper; a changeling.
"At the beginning, E's visits kept me sane. She always stayed too long, mainly because I needed to ask her so many things and needed her to tell me that the things that I was thinking about Mary and doing with Mary were OK. She was a lifeline. That is no exaggeration. All my friends say the same. You feel like you are floating above the world on a balloon with a short string and then this person could pull you down again and root you on the ground."
Sarah cried even thinking of E, and thinking of what she called "girls at home just wondering if they're mad and if their baby is bad and a dud and all of that."
So bear all that in mind when you think badly of St John of God. So many people, people like E, doing wonderful work with grace and love.
Because, yes, E came from John Of God. I seriously doubt that her pay breached any guidelines. She did not get ¤300,000, like her boss John Pepper, to discharge pension and employment liabilities.
My family are finished with the John Of God now. My child, despite having Down syndrome, despite the fact that she needs extra help to learn to walk and talk and feed herself and go to the toilet and cope with everyday situations, is now deemed to not deserve any services from John of God. Because there aren't enough services to go around. There isn't enough money to give all the little Marys what they need.
Even when Mary was deemed to deserve services, before she got the "mild" assessment that fills parents with pride and dread in equal measures, Mary didn't get much. Other people needed the services more. Other people would benefit more from them. Which is a great thing in a way. Because it meant that relatively speaking she was doing well. But put her next to a typical child and Mary certainly deserves services. But always, in different ways, it was hinted to us that there were much worse, and we shouldn't be greedy in wanting things. And you wouldn't begrudge the kids who needed it more. But I guess you would begrudge the money going to anyone else apart from them.
But that's how it goes. Only the worst deserve help. Because there isn't enough money. It's not actually about whether Mary deserves services. It is about pretending she doesn't because there isn't enough to go around.
You don't need to cry for us. We are in a position to access services elsewhere. Mary is in a fantastic school where they support her hugely and she has many wonderful people in her life who help her achieve her potential, some of them paid, and some of them unpaid.
If Mary was at the mercy of the weird combination of the HSE and John of God she wouldn't stand a chance in this life. Because John of Gods is an organisation in poverty. Like many other state-funded or charitable organisations, it does not have enough money to do what it needs to do. It threatened to pull its support of St Augustine's school recently, a school lauded far and wide as being a wonderful institution.
To this day, I do not understand how St John of God works and what its relationship with the HSE is and what Mary's rights were and who did what and how it all worked. Anytime I tried to find out, I was bamboozled. There was a whole load of jargon to answer any simple question you tried to ask. You would practically have to do a night course for a year to try to understand it all. One night I was brought to a parents' evening to explain about changes in the disability services and I came away from it none the wiser about Mary's situation but a whole lot wiser about all the problems and the difficulties of the staff.
You don't need to hear another angry parent wondering why there is fuck all for our children while there is ¤600k to top up John Pepper's pay packet. You don't need another angry parent to talk about the disillusionment. You've heard it all. I imagine you are sick of us by now. You all have your own problems, and I imagine lots of them are considerably worse than ours.
But still I find myself wondering:
Why do we continue to present the rights of the most vulnerable children in this country as charity? Why did my daughter refer one day to children like her sister as charity children?
Why should all those parents we have heard from over the last few weeks be out with begging bowls to their neighbours and friends to keep institutions like John of God going?
Why do we funnel the resources for people with disabilities through institutions that are potentially ineffective, bloated, maybe even, - not in the case of John of God, but in other cases - corrupt, where people cream off massive salaries? Why do these resources first have to make their way through the HSE and then through another slightly Frankenstein organisation that is a charity, a state agency, a religious order and a massive bureaucracy?
And why are there hundreds of these organisations everywhere putting sticking plasters on various needs? Is it any wonder that the Government can't keep up with things like the Console scandal? How many suicide charities are there in Ireland? Why doesn't our health service offer counselling on demand to people who are thinking of killing themselves? Why doesn't our health service offer help to those left behind? People who are suicidal are arguably people with a serious fatal illness. Why do we leave it to well-meaning or not so well-meaning people to try and fix them?
And why are we letting all these people down, all the people who need our help most, by not taking this problem seriously?
I know these questions are boring for many of you. And I know they seem naïve and obvious.
But there is a plague of heartbreak around this country among people and their families who have had their lives ruined by accidents and accidents of birth and accidents of fate. And those people work so hard to try and not let these things ruin them. They draw on reserves of love and the human spirit that most of us can't comprehend. But the State and the system ruins their lives all over again. And they are bamboozled at every turn by doors closing in their faces.
And everywhere you go you hear their questions: Why don't they have wheelchairs that are comfortable and fit their bodies and work? What will happen to their adult offspring when they die? Why isn't there speech therapy in schools so their children could learn to speak a bit without mum or dad having to take a half day off work and pay money and drive miles, if they're lucky? Why aren't Special Needs Assistants officially allowed to help children learn? Why isn't anyone helping them to lead any kind of fulfilling life? Why do they have to beg for everything?
The world deals some people a shitty blow and all too often the system then kicks them in the face all their lives. It's a massive, out-of-control broken system that wastes money at every turn. And the last few weeks just showed us this again. There are wonderful people doing amazing work within that system, but, in general, they do it despite the system. These so-called service users, who maintain their dignity and their spirit against all odds, deserve much, much more than what this Frankenstein system offers them, what this society offers them.
And if we judge ourselves on how we treat them, it's a pretty poor judgement on us.