I’mmarried to a woman who gave up a professional career a lifetime ago. She made the choice to devote herself fulltime to raising a child with an intellectual disability. He says she has paid a heavy price for it, because she herself has lived as a dependent ever since.
She is considerably more talented than I am, in every imaginable respect, but that has counted for little. When she reached retirement age, for instance, she was told that the only basis on which she could qualify for a pension was as my dependent. Not now, and not ever, in her own right.
And yet, there can be no denying that she has done the State a considerable service. She has had to fight to do it. She has had to be unrelenting and unforgiving in regard to the standards of service our daughter received, at every stage of her development.
Early assessment, early education, primary education, puberty, growing independence, young adulthood, independence (or semi-independence) as an adult, respite care, residential services — every one of these stages of our daughter’s life involved a battle.
I’ve written here before about how people with disabilities, and their families, experience second-class citizenship in their relationship with bureaucracy. It’s all too often the mother who carries that burden, and frequently alone.
When my daughter was young (under 16), my wife was paid a domiciliary care allowance in respect of her full-time care. Once she reached the age of 16, my daughter received an income of her own in the form of a disability allowance, and financial support for my wife stopped. We coped — back then, the domiciliary care allowance was about €10 a week. Nowadays, a mother who cares full-time for a child with a disability receives around €3,600 per annum (a small fraction of the minimum wage).
Is there payoff? If your daughter grows into a happy and fulfilled adult, capable of living among her peers and friends with a high degree of independence, that’s a lot of payoff. But, along the way, there are times of anger, frustration, despair, and burnout. And usually, the more you need somewhere to turn, the harder it is to find it.
That’s how you can come to the point described in the Ombudsman for Children’s Report on the story of Molly. It sounds almost contradictory, doesn’t it. Molly’s foster parents told the Ombudsman: “Molly has brought nothing but love and positivity into our lives. But we’re in despair. We love her and we want to care for her. But we’re emotionally, physically, and financially drained.”
If you’ve seen it at first hand, you get it immediately. Molly has Down Syndrome and autism. Throughout her life and now as a teenager, she has always utterly depended on her foster mother. To the point where the woman who has cared for Molly more than anyone else has been broken by it.
Isn’t that an amazing thing to say about a foster mum? We ask foster parents to take on this job. They do it for us. In Molly’s case they took on a little girl who had been abandoned by her biological parents, and they devoted themselves full-time to her care and development.
What if they hadn’t? Suppose there hadn’t been a mum willing to become Molly’s mum?
In that case, Molly would certainly have ended up in a high-dependency residential unit, surrounded by trained staff with a host of other responsibilities. For the last 14 years, she would never once have received a visitor from the outside world. She would never have had anyone who regarded themselves as her mum or her auntie or her brother or sister. She wouldn’t have lived in a house but a “unit”. She might or might not have had a room of her own. She’d have been on a regimented diet, worn hand-me-down clothes, and had access to whatever physical and educational stimulation the staff could manage (which might or might not have been appropriate to her needs — that would be serendipity).
Services such as speech or occupational therapy would have been seriously rationed and always in short supply. The chances of her ever becoming a happy fulfilled adult, with life choices appropriate to her abilities, would have been far less.
And the cost of that? A 2012 study commissioned by the Department of Health estimated the cost of high-support residential services for people with intellectual disabilities was about €140,000 per person. In Molly’s case, her care on that basis would have cost the State just under €2m over the 14 years of her life.
I’ve never met Molly’s foster mum. But I’ve met dozens of foster carers over the years. I’ve never met one who does it for the money. But I’ve also met very few who feel adequately supported in respect of the burdens they carry.
The extraordinary sacrifice of a foster mum — just one foster mum — saved the State the vast bulk of the €2m Molly’s care would otherwise have cost. Wouldn’t you imagine, in that situation, that the state would be falling over itself to ensure that foster mum had every single bit of support she needed? Between a variety of payments, including child benefit, Molly’s foster mum receives around €22,000 per annum (and of course non-foster parents don’t even get that). That’s some deal the state is getting.
When you multiply the savings by the total number of children with disabilities in foster care — who would otherwise be in a variety of institutional settings (although I know that’s not a term we use any more) — what’s happening is much more akin to exploitation than it is to value for money.
The Ombudsman for Children has calculated — and neither the HSE nor Tusla disagree — that there are nearly 500 children with disabilities in foster care in Ireland. If those children had to be placed in residential care provided by the State, even assuming that not all of them would be highly dependent, the extra cost to the State would be hundreds of millions every year.
Niall Muldoon, the Ombudsman for Children, has done a really good job in demonstrating how children like this — and the extraordinary people who care for them — fall between stools.
The HSE is responsible for disability services, but not foster care. TUSLA is responsible for foster care, but not disability services.
But there’s something much more fundamental at play here even than that.
There are dozens of brilliant reports — many of them written by parents, including my wife. Many of these gather dust. And still, these are children without rights or a voice. Rights and voice need the force of law. The Ombudsman for Children has moral authority, but no power in law to force change.
Of course, there are laws in Ireland which pretend that people with disabilities have rights. In fact, there are two laws — one dealing with services generally, the other with education. They’re both hollow, sham, and meaningless. Until we face that, and revisit some of the worst legislation ever passed in Ireland, Molly and her foster mum, and all the other Mollys who need our support, will never get the justice to which they are entitled.