Fergus Finlay: I read a letter from a public servant to a parent. I can't remember the last time I was so shocked

I’ve met many parents who struggled, for all sorts of reasons, to be the parent they wanted to be. But I've never met one who benefited from a lecture from a civil servant

Tony Murray, with his wife Susan and their 42-year-old daughter Aoife who has an intellectual disability. Tony has set up Before We Die, an organisation aimed at changing the system so a plan is in place for care to be provided for people whose parents are aging and may soon not be in a position to continue to care for them. Picture: Moya Nolan

I read a letter yesterday, from a public servant to a parent. I cannot remember the last time I was so shocked by a letter of that sort — and I’ve seen a lot of them in my time. 

The public servant is a manager in the provision of disability services in a certain part of Ireland. The parent is the mother of an adult daughter with an intellectual disability and a range of behavioural issues. The letter was the system’s way of saying no to the mother.

Actually, not just saying no. It was warning the mother, in a very heavy-handed way.

I haven’t met this mother, nor the public servant involved. I’ve just read the letter, and I’ll tell you later where I got it.

I found it so shocking I had to read it several times. I’m not going to go into too much background or identify the family, but this young adult cannot live at home — there is too much risk — and her parents desperately need help to find her somewhere to live where she will be supported. The letter basically says because that’s a housing issue, it has nothing to do with the HSE. Find her somewhere to live and we might help to find a way to support her.

But in the meantime, the letter tells the mum: “You should be aware that there is a legal obligation for parents to support their child financially if the child is dependent. This applies to all children to age 18 and to 23 if in education, but indefinitely if the child has a disability. 

"Accordingly, you are legally obliged to support your daughter and that includes the provision of accommodation.” 

That’s the shocking bit. This public servant has pulled down a 50-year-old piece of legislation off a shelf and used it to warn the mum they are writing to. And just to twist the knife a little further, they go on to write: “I am aware that yesterday's assessment of the City Council's Accommodation Placement service confirmed that [your daughter] is not considered homeless given your parental obligations”.

Perhaps I need to explain. There is a law that places an obligation on parents to provide for their children’s financial needs. It was passed at a time, in the mid 1970s, when people (men, usually) could desert their families and essentially evade their obligations to their children. 

When that law was being introduced in Dáil Éireann, the then minister for justice Patrick Cooney, in his opening sentence, said: “This is a bill to amend the law relating to maintenance and desertion, to introduce a system of attachment of the earnings of persons who default on payments under an order for maintenance … and to amend a number of other aspects of family law.” 

I’ve read the entire debate around the introduction of that law. Speaker after speaker acknowledged the problem the law was meant to address. It was a crisis facing mainly women at the time, whose husbands had simply abandoned them and their children. And although limited, it turned into a useful piece of legislation for many women because it enabled them to get court orders against delinquent husbands.

But guess what? Nobody in that debate, or to my knowledge ever since, said the other great thing about the legislation was that it could be used in the future to beat parents over the head about their financial obligations when they could no longer cope, or even to evade the moral and social obligations of the State.

In my years working in Barnardos, and throughout my life indeed, I’ve met dozens, maybe hundreds, of parents who struggled, for all sorts of reasons, to be the parent they wanted to be. It happens a lot to the parents of children with disabilities — it’s a curve ball thrown by life that can frequently be impossible to catch.

But I never once met a parent — especially a mother — who needed a lecture on their obligations to their children. I never once met a parent whose life was likely to be improved by an official letter telling them that they were on their own, and misusing the intent of old legislation to do so.

Before I go on, I should say that the letter was given to me by Tony Murray, whom I’ve known for years, and who had received it from the affected parent. Tony (like me and a lot of us) is the parent of a child with an intellectual disability. 

Tony (like me and a lot of us) is getting older and worries constantly about what will happen if he and his wife become too old to do all the heavy lifting associated with the fulltime care of a person who can’t safely live independently.

He and several other parents have founded an organisation called Before We Die, aimed at trying to persuade the Government to make decent provision now. They’ve been on the radio a few times and already they are inundated with stories from parents who dread what the future will bring.

All the key policy makers know this is a complex problem, and not one any parent can face alone. There has to be a massive expansion of decent and accessible respite care, to enable parents to get regular breaks. And there has to be a major increase in decent high-quality residential facilities, that people with a disability can see as home from home.

There is an additional complication facing the families of adults with Down syndrome. It wasn’t really known about until relatively recently, but adults with Down syndrome have a much higher chance of slipping into dementia in their 50s and 60s, with all the added complications that brings.

So everyone knows the problem is complex, and that solutions require plans. But guess what? The State has plans, all sort of plans and promises. There are housing strategies, disability strategies, housing and disability strategies, several Government departments all mixed up in it alongside local authorities and different agencies. 

Over the last few years there have been endless promises. And progress has ranged somewhere between zero and zero and a bit.

But if you’re seeking help, everyone on the internet says the best place to start is by contacting the person in overall charge of disability services in your area. “For specific, urgent needs,” it says in black and white, “it is recommended to contact your local HSE Disability Services Manager or a social worker.” 

Do that, by all means. And if they’re in the mood, they might try to show empathy. Even if they can’t offer a solution right away, you’ll know they’re there for you, willing to work alongside you until help can be found. That’s their job, after all.

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But if they’re not in the mood, or if they decide you’re a pain because you won’t take no for an answer, or they think you’re too demanding, empathy will go out the window. You’ll get a stiff letter instead telling you the legal obligation is yours and yours alone. There’ll be an implied threat, and a complete brush-off. 

The richest economy in the world has decided to wash its hands of you and your child.