Nicky McFadden (Fine Gael)

I welcome the Minister of State to the House. I have not met Deputy Devins before and it is a great honour. I am glad that he is in the House for this debate.

I want to hone in on just two issues because this is such a vast area. The first concerns people with intellectual disability and the other is concerned with the services for people with muscular dystrophy. We were all at the presentation today. I share with Senator Corrigan a very serious concern about people who have intellectual disabilities and totally respect their right to enjoy a good quality of life. I listened to her, intently, when she spoke about people being able to choose when they should shower or eat and drink.

John, a person I know, has moderate intellectual disability, with autism. He lived with his family until he was six, and then had to take up full-time residential placement in Dublin after his father died. This was a very traumatic event for the family, and so he ended up in residential care. In Dublin he had a series of placements in large residential settings and secure units. His life story contains vivid descriptions of years of severe challenging behaviour, which were John's only way to communicate the stress of being disconnected from his family and community. It was a community that he loved and valued and he now lived a life that was meaningless and unsatisfying, without any activity.

Very high levels of medication, seclusion, living in a noisy crowded challenging behavioural unit away from home are among John's memories of large residential settings. Despite massive allocations of resources this model is the daily reality for many people. The Minister of State, in his speech said there were 8,800 of these people in residential settings. I am reliably told that almost 50% of Irish people with intellectual disability still live in such large residential settings. In England, Wales and Scotland the equivalent figure is zero.

In a review of 118 UK research publications between 1980 and 1996, Hatton and Emerson found that large residential settings showed considerably poorer outcomes in user and parent satisfaction, the material and social environment, privacy, choice and personal possessions, use of community facilities and the development of skills. This led to the dissatisfaction we spoke about earlier and levels of challenging behaviour, use of medication, participation in domestic activities and the support staff. Yet the costs of community living is only 12% higher than the expenditure on people in large residential settings.

To return to John, he is an artist. He has a superb memory for dates, places and the names of plants. In the last ten years he has come into contact with a community based service, which believes in the contribution people with disabilities can make. He now works on an urban farm and is connected with a local community. He lives the life of his choosing. John is one of the lucky ones. Will the Minister of State say how long the Government is to mismanage resources by ploughing enormous amounts of money into human warehouses? That is very strong language, but I truly am convinced about that. When will the potential of the many people, such as John, who continue to live in these expensive human warehouses, be realised? Perhaps the Minister of State will please come back to me on that.

As regards muscular dystrophy, we heard heart-rending presentations from parents of children who suffer from this condition. They said, in effect, that they were watching their children die, which to me was a very dramatic statement. The Minister of State has quoted some very fine statistics. I dislike statistics, but——