Paschal Mooney (Fianna Fail)

If I were not involved in politics but active exclusively in the area of disability as the parent of a child with special needs, which I am, I would have great difficulty supporting this Bill in its current form. However, I understand the difficulty in which the Government has found itself in recent years. I record my appreciation, and that of others in a position similar to my own who may not belong to any lobby groups but are parents, of the sincerity with which the Government, from the Taoiseach down, has approached this very complex issue. In its original form, the Bill was withdrawn three years ago, and the fact that it has gone through several manifestations to arrive with us today is a firm indication of the Government's commitment to wrestle with this problem and put forward solutions.

I have the greatest sympathy with those who do not understand, or do not wish to understand, how the Government works and the manner in which finance is dispersed to various Departments. For them, it is a simple matter of black and white. They are involved in the disability area as disabled persons or as parents of disabled people. As citizens they look at the Constitution and, when the Government says it cannot do something, ask why it cannot provide enough resources to address the issue once and for all. Why can the Government, notwithstanding its own commitments, not decide that it will give a right to that section of the population who, in spite of their disability, are citizens in the fullest sense of the word? That has been the basis of much of the criticism of the Bill.

As a politician, I have tried to explain to people that I do not believe it possible for any Administration — and I say this about my distinguished colleague on the other side — to give a blank cheque to any sector of society. It has become something of a negative slogan used by the Minister and others in defending the Bill, that they will introduce and implement the measures in so far as resources allow. However, I suggest that behind that bland, somewhat clichéd term, which is used across the whole panoply of Government and not simply regarding this Bill, there lies a very deep commitment on the part of the Government, from the Taoiseach down. He has stated publicly that the issue is to be addressed in a fair, equitable and honest manner. Those are the broad strokes of my approach to this Bill.

I would be grateful for some clarification of section 11 when we discuss the Bill on Committee Stage. I understand that, even as we speak, the Government is engaged in consultations regarding possible amendments that will be tabled in this House which might help advance issues that continue to be raised by a group of people outside who, if I may be blunt, are very angry. The Minister needs no reminding of this fact. I hope those amendments and that ongoing consultative process will help alleviate the pain these people feel and address in as practical a manner as possible, within the context of the Bill, the issues that have been raised. One relates to the question of the timeframe within which any assessments will be carried out and the consequent recommendations implemented.

On the question of access, if I were in a wheelchair in this city, I would also be very angry. I remember a group of people representing the Independent Action Group campaigning outside the gates of this building for better access to taxis and public services. That was three or four years ago. I am pleased that at least some action came as a consequence. Politicians in this House were rightly angry at what they saw as further neglect of a very important group of people in our society. Efforts continue to be taken to introduce more user-friendly taxis, buses and trains, and I applaud the Government for having provided the resources to Iarnród Éireann and CIE as a corporate body. They are gradually increasing the number of wheelchair-friendly buses in this city and other towns and cities across the country.

The criticism has been that the process is too slow. When I asked the question, the Irish Wheelchair Association said that things were happening but it could be 2015 before services in this country were complete. This is 2005, and perhaps the Minister of State might comment in that regard. It is once again a matter of resources. Time and again, when it comes to the controversial issues of this Bill, it comes back to the question of resources. I am a committed Government supporter and know the Taoiseach well enough to be able to state that he is pained and deeply involved emotionally in this argument. I have no doubts regarding his credibility and commitment. However, ultimately it is about resources. We are unquestionably a wealthy country, but sometimes I get fed up hearing people tell us how wealthy we are when I see the disadvantage around us in certain parts of the country. This section of our people is crying out for more money and, in many cases, money would solve the problems.

Section 34(b), regarding the sectoral plan for the Minister for Transport, refers to "measures to be taken for the purpose of facilitating access by persons with disabilities to such services and the time within which such measures are to be taken". That time element arises time and again in this Bill. I hope it will be addressed as far as possible in the consultative process under way.

Part 4 refers to genetic testing. Fifteen years ago, when our daughter Siobhán was born across the road in Holles Street, she spent three weeks in a special baby care unit because they did not know what was wrong with her. All sorts of internal tests were carried out, and Members will appreciate the trauma that my wife in particular was going through at that time while we waited to find out exactly what was wrong. Along with staff in the hospital we knew that something was wrong. Eventually, they sent a blood sample to London on the basis that, having eliminated all other tests, the condition might be genetic. In London they carried out a genetic test and discovered that she had a condition known as Prader-Willi syndrome, named after two Swiss professors who identified in 1959 a deletion of chromosome 15 which in essence is an eating disorder. It is also a mild mental and physical handicap — estimated at approximately 5% to 10% — and it affects boys more than girls. This syndrome can lead to a variety of disabilities but, in our case, the eating disorder means that the chemical messages to our daughter's brain are scrambled to the point where unlike you and I, she does not have the capacity to know when she is full. Consequently, she must be watched and monitored on a regular basis. It usually falls to mothers to do this although fathers make a modest contribution. At 15 years of age, she currently weighs 22 stone. In the future she could develop life threatening conditions such as diabetes but she is perfectly healthy now. She goes to the gym, she swims, she rides horses and is in a special needs class. I am grateful to successive Ministers for Education and Science who, from the time it became apparent that there was a need in Drumshanbo for special provisions, have responded magnificently at primary and secondary level.

I put this on the record because it informs people of a rare condition, but also because our concern is with what will happen to Siobhán when she leaves school at 18. There are not sufficient respite care facilities in the north west. There is a desperate need for such teenage children to have some form of respite on a one-to-one basis. There is no point in putting her in with a group of similar minded special needs children or young adults because she has special dietary needs. That is a resource issue. I do not wish to attract an emotional response, but I want to give an insight into our particular experience. We are blessed. She is the most beautiful daughter and we are very proud of her.

I am pleased to learn that most genetic testing now takes place in Our Lady's Hospital for Sick Children in Crumlin, so one does not have to wait as long for results. There is a very experienced team in Tallaght, led by Professor Hoey, that has a very specific expertise on Prader-Willi sufferers. The support services are there and the State is doing a good job in that regard.

To return to another special interest of mine, section 53 refers to section 19 of the Broadcasting Act 2001. I welcome the commitments contained in this section. It states that the commission shall make rules requiring each broadcaster to take specified steps to promote the understanding and enjoyment, by persons who are deaf or have a hearing impairment, and persons who are blind or partially sighted, of programmes transmitted on any broadcasting services provided by him or her. I want to place my appreciation of RTE on the record, although I declare an interest as I receive part of my annual income from RTE. The station initiated subtitling on all of its programmes. At a recent presentation to an Oireachtas committee, it was claimed that it was the only national television broadcaster that was doing so. This Bill should legally oblige TV3 and other national and regional stations to do the same. It is important that local radio stations look at the content of the Bill to see how they could implement measures to help people who are impaired in some way. As a broadcaster, I learned how important radio was to the lives of disabled people, particularly the blind. Broadcasters have a responsibility in this area. Wherever it is possible, they should reach out to this section of the community.

Despite the fact that I have reservations, I welcome this Bill as a very significant advance in addressing an issue that has exercised the minds of this party over a number of years. This is not a culmination of that process, but a major step along the way. The people out there who are feeling angry, disenfranchised and disillusioned will soon feel this Bill will be of real practical help to them if the resources are provided.