FERGUS FINLAY: Still a champion of people with intellectual disabilities after 50 years

INCLUSION Ireland is 50 years old this year.

If its conference (which took place in Salthill this past weekend) is anything to go by, the organisation is more vibrant and determined than it has ever been.

Inclusion Ireland is an umbrella body, that represents people with intellectual disabilities, their families, and their service providers. In fact, they have grown together. When the organisation was founded, in 1961, there weren’t that many service providers. A couple of big institutional hospitals, and several religious orders.

In her speech to the conference, the Chair of Inclusion Ireland Frieda Finlay (yes, related to this column by marriage), pointed to the change that has taken place over the lifetime of the organisation.

“Fifty years ago,” she said, “we depended mainly on charity. Little by little, things began to change in Ireland. Services were better funded, and were no longer as dependent on collections outside church gates. The stigma associated with intellectual disability began to fade. Government policy began to be developed, at first grudgingly, and eventually in recognition that intellectual disability was an increasingly important social issue.”

It’s not that long ago, as Frieda pointed out, when intellectual disability — or mental handicap, or mental retardation before that — was largely hidden away in Ireland. In some families and communities, it was a source of shame. And there was a general assumption that nothing could be done to help them develop their capacities.

It was parents who began to change all that. Many of the major organisations that now provide services to people with an intellectual disability were started by parents. Parents who were determined that their children wouldn’t be locked away. Parents who saw potential in their children that others didn’t see. Parents who wanted things to be different.

Inclusion Ireland was founded — the National Association for the Mentally Handicapped of Ireland, or NAMHI, as it was called then — because enough people recognised that change was necessary. And little by little, change began to happen. I remember being a trade union official in the old mental handicap hospitals in the early 1970s, and although there were caring and busy staff, the outlook for people with an intellectual disability was really poor even then.

But it has changed, and Inclusion Ireland has more than played its part. As Frieda said in her speech, “resources started to be invested in developing services that were much more focussed on the needs of individuals. Public policy began to move away from segregation and institutionalisation. In all of those changes, the voice of NAMHI was heard. More insistently with each passing year, and more and more focussed on the dignity of people”.

“Fifty years ago,” she went on, “we were fighting for special schools. Now we want a range of choices. One of the major choices we demand is support for our children in mainstream schools. For young parents today that is still such a major battle. The supports and special needs assistants made available during the years of prosperity became one of the first casualties of the economic downturn. Families once again are at breaking point because their respite services are being stopped or cut, they are afraid they will no longer be able to cope, and what will happen then.”

It was those kinds of issues that were debated at the weekend. One of the most telling — and moving — events of the weekend was a DVD shown to the conference. It was made by people with an intellectual disability themselves, and it was about the long-stay residential charges imposed on them by Mary Harney.

Their story was a simple, though shocking, one. They live, independently although with some support, on an allowance of around €200 a week. In two successive budgets that allowance was cut, by a total of €16. Out of the balance their service provider was deducting the cost of ensuring there was a nursing service on the premises — even though none of the people involved needed nursing care. They weren’t sick, as one of them said, just disabled.

But the cost of the deduction was more than €140 a week, leaving them with almost nothing to feed and clothe themselves. It harks back to the days we thought we had left behind, when it was considered good enough to give people with an intellectual disability a few pence in pocket money. As one of the guys who helped to make the video said, the government gave with one hand — and took back with the other.

Incidentally, it is people with an intellectual disability themselves who are increasingly demanding the right to be heard and to contribute to how Inclusion Ireland is run. It was they who decided that the name should be changed — they felt patronised and labelled by the name NAMHI. And at each conference they demonstrate just how much potential we are ignoring.

Last Saturday, for instance, a young woman called Lisa McNab showed us photographs of her apartment, which she has occupied with the support of the KARE Foundation. She has two part-time care assistants, whom she pays weekly out of various allowances. She is living a full independent life, in a way that her parents dreamed of for her but never really thought was possible.

And I met Paul Alford, who works for Inclusion Ireland. Last year Paul, who used to live in an institution, booked his own flights to Australia, paid for them himself, and went off, alone, to see a country he had always wanted to see. Was it scary? Yes, it was. Was it worth it? You bet!

THESE and other self-advocates are making policy now. They sit on the board of Inclusion Ireland, along with ordinary people. They speak at, and host, conferences — at home and abroad. They’re involved in education, in training, in debate.

From all those perspectives, the people who founded NAMHI wouldn’t recognise the organisation now. But some things haven’t changed. The issue of resources hung over this conference, as it always does. But perhaps this time there was a difference — in two ways. First Kathleen Lynch, the new Minister for Disabilities, made a big impact on the Conference with her knowledge and commitment to the cause. She was backed up, as it happens, by a thoughtful and supportive presentation by Micheál Martin. The fact that the new leader of Fianna Fáil made it his business to be there was a message in itself.

And secondly, the economist Jim Power made a detailed presentation to the conference about the whole issue of money. His point was simple and effective. There’s a lot of money going into this area — €1.6 billion in services alone — and a lot of questions to be asked about how it’s being spent, and how well it’s accounted for.

There’s no doubt whatever that there are still huge battles to be fought for the rights of people with an intellectual disability — on issues like legal capacity, for example, and the scandalous absence of independently monitored standards. No doubt either that Inclusion Ireland is ready to fight those battles. They’ve come a long way in 50 years. In the next few, the government that ignores them will do so at its peril.

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