Shane McEntee (Meath, Fine Gael)

I choose to make my maiden speech in Dáil Éireann on the Disability Bill 2004. It is one of the most important Bills to come before the House in recent years.

I want my first formal speech to be a positive one. I would like to be able to praise the legislation and welcome its provisions. A proper Bill should have the capacity to transform the lives of people with disabilities and their families. It would give hope of social inclusion to people who have experienced exclusion for too long. While I welcome the Bill's publication at last, its problems are all too obvious.

Let us be clear on what is needed in a disability Bill. It should give rights to people with disabilities. We need adequate responsive services to allow people with disabilities to participate as equal citizens in Ireland. These services should be there when people need them and all disabled people should have access to them. The barriers we place in front of people and the attitudes we have to their participation are more disabling than any impairment they may have. A Bill is needed that removes those barriers. We need a Bill that empowers, that is honest about what is possible. It must be practical. We need a Bill that allows for services to be provided on a temporary or ongoing basis, depending on the needs of the individual. It should be a Bill that assists people with mental health difficulties. It should expand employment opportunities and ensure access to transport and buildings for the disabled, on an equal basis.

It is a sad fact that this Bill does not fulfil these needs. Try as we might to be positive, the flaws in the Bill are all too obvious. The definition of disability is too narrow. It includes only those in need of continuous services. It traps people in the old medical model of disability while all progressive opinion suggests they should be part of the social model. The definition is good news, not for the people with disabilities, but for the Exchequer. The Exchequer will have to pay less if fewer people qualify and there is less demand. The definition saves the State money. Is that what was intended?

People with disabilities who are not in need of continuous access to services, have no protection and no right to services of any type. For example, blind persons in full time employment, living independently and not in need of continuous services, are not recognised as disabled in this Bill. How can the Bill protect the rights to any type of services at any time if such people are excluded by the definition? If one has a disability that is not included in the Bill, it is not much good.

Many people are prisoners in their own homes because of the special needs of their particular loved ones. I think of parents who are too old or too feeble to travel, carers of adult children with severe behavioural difficulties. Will the Bill help them or their children? The Taoiseach, I am told, said at the launch on 21 September 2004, that the national disability strategy showed clearly our intention to put a programme of action in place to support and reinforce equal participation in society by people with disabilities. The Tánaiste said she believed that those who had advocated change for quite some time, would see, in the legislation, an honest attempt to get it right. I would tell the Taoiseach and the Tánaiste that good attempts are not in themselves enough. We have got to get it right. There must be a massive shift in public service delivery all around. There has been an enormous change in attitude. I have just spent an intensive period during the by-election in County Meath knocking on doors. Families poured forth to me on doorsteps in every parish, village and street as to how they feel let down by the State in their attempts to cope with disability in their homes.

The experience of one neighbour's child was typical. This young man was born with cerebral palsy. His parents, through their tremendous efforts, with little or no State support, taught him to walk and to talk. He made such progress that he represented Ireland in the Special Olympics. This outstanding achievement has led his neighbours and some local papers to compare him to Pat 'Red' Collier, a legendary Meath footballer. This young man and his parents recently received a slap in the face from the State. His medical card was withdrawn because he obtained nine hours work as therapy. This decision was taken, despite the heroic efforts of his parents to allow their son to lead an independent life, with only minimal calls on the State for support. Is it any wonder we public representatives see such anger on the doorsteps of families trying to cope with disability?

Over Easter I was privileged to visit the home of the O'Hara family, outside Kells. It was an extraordinary and moving experience. The story of the O'Hara family is well known and I will not go into details today. However, I propose to highlight one aspect of the family's difficulties, which reflects poorly on the State's approach to disabilities in general. It is recognised that the children in the O'Hara family have special needs. Small things count for this family. The O'Haras travel everywhere by car, as a family. They are not eligible for a disability car sticker, despite their special needs. I question whether this is how families with very particular needs should be treated, at a time when we take such pride in our standing on the world's stage.

A mother of two children with disabilities told this story of her experience at a recent meeting of a disability group, seeking to have the Bill changed. I quote from her account:

My son is 16 years old, and has Down's syndrome, a moderate intellectual disability and many medical problems. He will leave school at 18. He will probably get a training course for three years, but then "into the Labour" starts. There is nothing in this Bill to indicate to me that he will get a service. It will be written down in its assessment of need, but if the Minister has not the money, then it is tough luck for my son. He will be stuck at home, and when that home is gone, he will fall into the emergency bracket of needing the service. This is the type of scenario that terrifies me. There are times when I cannot sleep at night, worrying about who will look after him when I am gone. Families can be given peace of mind by correcting this Bill.

That mother's account of her experience will be familiar to many thousands of families throughout the country. This does not come as a surprise to any public representative. We have all encountered such families and listened to such fears in the course of our work. Saying to them that we understand is not enough, we need to act. This Bill should have been an answer to their prayers and a solution to their problems. However, it is not and the Bill must be amended accordingly. There is no point in enacting legislation if it cannot do what it is supposed to do. If this Bill, as the Taoiseach and the Tánaiste have claimed, is an honest attempt to get it right, then the Government must be honest in admitting its shortcomings. The Government must make an honest attempt to amend the Bill to meet the needs of people with disabilities.

In the sunny days of the 2003 Special Olympics, people with disabilities delighted everyone with their abilities, commitment and enthusiasm. It was a showcase of inclusion of which everyone wanted to be part. The mother I spoke of asked her daughter, a wheelchair user, how she felt about the Special Olympics. She replied that it was the first time in her life that she felt part of Ireland. This young woman, a university student, had never felt part of Ireland until 2003. This Bill must reassure her that she will be treated like the rest of us, as being part of Ireland. Being part of Ireland means she must be provided with access to public transport, public services, accessible buildings, employment and opportunity. She must be given the challenges and opportunities we choose and expect for all our children.

Our thinking must also change. We must stop expecting people with disabilities to wait or put up with less than we expect. In this respect, the Bill is seriously flawed and requires amendment. The Minister for Justice, Equality and Law Reform must go back to the drawing board to get it right. It is my wish that, after a mature debate, an agreed way forward will be reached with the support of all sides of the House. Getting it right would be an acknowledgement of the enormous contribution made by, and the struggle faced by, those with disabilities and their families. The Government's challenge is to amend this Bill to reflect what the Tánaiste claimed was its intention: an honest attempt to get matters right. I urge the Minister to take on board the concerns of people with disabilities and their families. Listening alone is not enough, the Minister must amend the Bill. We now have a once-in-a-lifetime opportunity to ensure Government policy and public services include disabled people from the start, not as an afterthought. This opportunity must not be wasted.

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