We need to avoid creating new prisons to protect disabled children

"IN the good old days when you couldn’t cope the nuns would take them in," said the middle-aged mother of an intellectually disabled teen. "Now if anyone says they can’t cope — good luck."

It was an exchange that got me wondering — have we exchanged our so-called “lunatic asylums” staffed by religious with private “lunatic asylums” staffed by parents?

Public opinion is firmly against residential care for psychiatric patients or the intellectually disabled. That’s nice for public opinion but it doesn’t have to lock the doors and windows for fear an adult child will break out and run across a busy road, or attack the neighbour with the butter knife. Public opinion doesn’t grow old and tired and frightened like the hundreds of parents who are over 70 and who are still waiting for residential care for their intellectually disabled adult children.

Last week Mind Freedom Ireland launched a campaign to have the judicial enquiry into mother and baby homes extended to include our mental hospitals in the early to mid-20th century. They cite research showing that 33,000 patients died in overcrowded, unhealthy psychiatric hospitals between the late 1920 and the early 1960s, and that mortality rates were significantly higher than they were in the general population.

I doubt the mother and baby enquiry is the right forum, but few would argue against a public reckoning about our level of admission to mental hospitals, which was higher than that recorded anywhere in the world. All of us have friends or family whose lives have been touched by this crude exclusion mechanism and its effects live on in many families: take, for instance, the struggle to be a good parent of a mother whose own mother was brought up in an orphanage because her mother was in a mental asylum.

Mind Freedom Ireland, established at a meeting in the house of Helena King in Cork in 2003, has raised deeply important issues about the rights of people with mental illnesses. However, when they say, “We believe that every person is a human being capable of making the best decisions for oneself”, I would have to argue back that there are times when a human being with mental illness is incapable of making the right decisions for him or herself. The fact that incapacity has been consistently exploited to hurt the mentally ill doesn’t mean that mentally ill people are always capable.

There is a danger in our current political correctness that we will start pretending that mental illness and intellectual disability don’t exist. That works against the mentally ill and the intellectually disabled and it certainly works against their carers, usually their parents, who are too often left picking up the pieces in the privacy of their own homes.

Senator Katherine Zappone has just launched her Criminal Law (Sexual Offences) Bill, which would amend the 1993 legislation which effectively criminalises sexual activity outside marriage for intellectually disabled people. Clearly the law has to change for the many intellectually disabled people who are well able to consent to sex.

But when Senator Ivana Bacik, seconding the bill, said that the issue of consent would under this legislation be “disability neutral”, I begin to worry how the Government will incorporate the bill as it amends the 1993 legislation because there are many profoundly intellectually disabled people who are simply not capable of giving informed consent.

I’m thinking of an autistic young adult I have met who has few words and no ability to relate to others. She has a fully developed body but the mental age of a toddler. Her mother told me that she had asked the family doctor to “whip out” her reproductive organs but, her request had been met with silence. The doctor had, however, agreed to prescribe contraception to stop the periods the autistic woman finds deeply distressing and to stop her getting pregnant.

But the woman herself has not given “informed consent” to that, has she? So where does that leave us, morally?

What would happen if that young woman, who might enjoy the physical sensation of sex — who might understand “the physical nature of the act”, as Zappone’s bill puts it — but is completely incapable of relationships, were to have frequent intercourse with a man who says he is in love with her? Is he abusing her very inability to form relationships, or not?

What would happen if her mother had not run the gauntlet of political correctness and had not put her daughter on birth control without her “informed consent” and she were to fall pregnant? How would the profoundly autistic woman cope with the “physical nature” of that experience? Who would look after her unfortunate child?

Her parents, of course. Political correctness would have no hand, act or part in it. The families of the profoundly intellectually disabled and the profoundly mentally ill are left scrambling around looking for help from over-stretched services. St Michael’s House lost over €12 million in its budget between 2008 and 2103 and last year warned it might have to close a residential and respite home and send service users home for nine hours one Sunday a month to cut down on the level of double pay to staff.

THERE will be no new residential places or long-term placement in respite services. A rent subsidy for children and adults in residential care has been stopped as well as a trainee allowance to service users who attend training centres. There have also been cuts to the day service for school-leavers and training centre users.

Every parent of a school-going youngster with a profound mental illness or intellectual disability fears the long summer holidays when many of them are virtual prisoners in their own homes. However, the fear is much more severe for the parents’ 18-year-olds with serious intellectual or mental health difficulties, because many of them do not know what their children are going to do now. Of the seven 18-year-olds leaving my son’s special school, five have absolutely no idea what they will be doing in September and the sixth only got his place yesterday.

Of what significance is an 18th birthday to a big child who will never live independently? None, of course. Educational services should continue right through life for that “child”. If he or she is to live at home respite services should be freely available. And no elderly, frail parent should have to cope with an intellectually disabled or mentally ill adult because there is nowhere else for that “child” to go.

In our rush to congratulate ourselves for leaving the prisons of the past behind we have constructed new prisons which are completely unregulated and are staffed by volunteers bound like slaves by the love they feel for their children.