Taking up the baton

Frieda Finlay, Chairperson, Inclusion Ireland, Enterprise

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I feel very honoured and excited to be chairperson of Inclusion Ireland. I have great respect for the organisation, the staff and all the members. As an active member for more years than I am willing to admit, my admiration for Inclusion Ireland has grown as I have watched the organisation represent parents and people with intellectual disabilities through periods of change and difficulty—harsh economic times as well as better times. We support people who have problems with the law, when they have to go to court.

Inclusion Ireland is highly regarded and trusted by many groups, including the media. That is because of our CEO Deirdre Carroll and her team—their work ethic, dedication and knowledge go way above the call of duty. I believe Inclusion Ireland has led great campaigns for change over the years. We have pushed the issue of intellectual disability to the forefront. We have secured extra resources in budget after budget, and have fought to protect those resources when there is a threat they will be cut back.

We have pushed hard for more investment in residential services, more respite care, more training and education, more support for carers and families. We have taken to the streets because of unjust cuts, and will do so again. In today’s economic climate that threat is becoming more of a reality. Some of our most vulnerable citizens are being threatened with cuts that will deprive them of basic services, dignity and respect.

The next two years will be very difficult and challenging for us all. Unfortunately people with intellectual disabilities are seen as the easy target where cuts are concerned—already services are being affected in a very unjust way. People are being moved out of their homes and put living in chronic over-crowded housing and intolerable living conditions. For anyone who loses their home it is very frightening.

In many areas respite funding has been withdrawn, this is not a luxury but a lifeline for so many parents. We are all aware of the cuts in education and the mean mindedness of taking 8 euro a week from people on Disability Allowance.

People are still living in wards as their permanent homes, with little or no therapies or occupation to fill their day. This is their life and despite our protestation and the courageous and persistent fight by Annie Ryan and members of St Joseph’s Parents and Friends Association over decades, their poor conditions remain. We acknowledge the fact that 60 people are being moved out of St Ita’s Portrane into improved accommodation, but there are many more left behind. How long are they going to have to wait?

The Irish Human Rights Commission wrote a damning report of the denial of human rights to people in a service in Galway. That case was taken by parents. I find it very hard to believe that in this day and age, there are still no standards and no inspection of any of the residential services for people with intellectual disabilities in this country. And that’s despite the promises made after the Ryan Report.

Inclusion Ireland will not rest easy until the standards that we worked on with the Health Information Quality Authority (HIQA) are given the force of law and independent inspection is put in place. Do we have to wait for yet another scandal of abuse, to have these standards and inspection implemented?

In recent years we have concentrated on the rights of people with an intellectual disability. And we have fought for higher and better standards in the delivery of service that would, in turn, respect the rights of OUR people— Irish citizens entitled to full and equal citizenship.

In all of this, I have to tell you that the self-advocates we work with on the Board and on the staff of Inclusion Ireland, and throughout our membership, are among our best and proudest assets.
Through our advocacy programmes we are developing a strong platform that is making a major contribution to enabling people to speak for themselves. And they’re not just doing it at home—Inclusion Ireland advocates have represented us, and their cause, brilliantly in a number of conferences and settings throughout Europe.

But yet, despite all our work, despite all our progress, I meet young parents all the time who are still going through the same trauma I went through thirty years ago and more. I meet parents who still have to fight the same battles—battles for their children’s education, battles for their healthcare rights, battles to get access to basic services like speech and language therapy. Somehow, despite all the battles we’ve fought and won—and despite the fact that public policy now talks about rights and despite the priority they say they give—somehow, despite all that, the waiting lists stay the same. And the battle has to go on.

For me, the next phase of the battle is about enabling, empowering and equipping parents. Parents all over Ireland want to become champions and advocates for their children, and they want the skills and confidence to do it. They need better structures to be put in place, so they can develop the skills and confidence, and can support each other through our work, in building a better future for their children. If we help parents to do that, we will occupy a really strong leadership position among families, carers, professionals and friends all over Ireland.

Last Easter we were promised modern capacity legislation that would assist people to make decisions. At the moment once a person with an intellectual disability reaches 16, their parents can no longer make any decisions for them, nor can they make decisions for themselves. There are a lot of parents who are not aware of that!

People with intellectual disabilities are caught in a legal limbo, and often the only solution is that they are made a ward of court. This is a costly and cumbersome solution denying people their right to make any decisions. One of the results of being a ward of court is that the permission of a high court judge is required to make decisions for that person, even if the person just wants to go abroad on holidays. Inclusion Ireland has been working with the Law Reform Commission for many years to have the law changed. We will continue to highlight this injustice and continue to lobby at every opportunity possible.

These are some of the issues I feel very strongly about, every opportunity I get I will highlight these issues and make no apology for it. We are talking about people’s lives, and so many of those lives have been wasted.

On a more positive note, Inclusion Ireland (formally NAMHI) celebrates its 50th anniversary in 2011. It is our intention to celebrate by highlighting the talents, skills and achievements of people with intellectual disabilities. We intend showing the Irish nation the contribution people with an intellectual disability can and do make to their country when they are given the opportunity. We have some very exciting and ambitious plans for our celebrations. Inclusion Ireland will be looking for everyone’s support to make 2011 a year to remember.

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