Geraldine Feeney (Fianna Fail)

I am delighted at the opportunity to debate the Disability Bill 2004, which is unique in the sense that no Bill has ever been as talked about. I would go as far as to say that no Bill has been worked on to the same extent either, given the wide-ranging consultation before putting it together. I commend all the officials and Ministers involved in bringing it before us today.

Other speakers have talked about the level of representation made to each Member of this House and the other, from parents or sufferers of some type or another, or simply from people with an interest in disability. I have spoken to quite a few of them in my own area of Sligo, and in the north west in general. It saddened me — I am concerned enough to put it on the record of this House — that there is such great fear among the carers and parents of the disabled.

I will speak about children. Much of what I will say comes from the perspective of the parents of disabled children or young adults. I was saddened to see that there has been a breakdown of trust and communication between parents and service providers. When one is in a vacuum like the parent of a disabled person, one is in a very frightening place. I know as the parent of four very able children and young adults that there is nothing I would not do to get them what they want. I would go to any length to ensure that everything was right in their lives. That is easy to do, since we are all able-bodied, but those who feel themselves at the mercy of a service provider are in a very difficult and lonely position.

It came across very clearly from my conversation with them that they felt that to achieve anything they had to go to the courts. In 1993 there was the case of Paul O'Donoghue, and more recently the Jamie Sinnott case, with which we are all familiar. The parents are delighted that those cases went to court and that whatever came out was inserted into legislation. However, they also made the point that, by and large, the parents of children with disabilities would not look to the courts for anything, shying away from that route if possible. Only very serious cases go to court. There is concern that, under this Bill, which has a great deal of good in it, access to court would be blocked. The parents feel that, if that happens, it is a retrograde step, isolating them even more.

The area of community homes is covered in the Bill. Perhaps the Minister might answer the concern regarding whether such homes would be monitored. We have all known for the last few days, as a result of the "Prime Time" investigation into nursing homes, the great importance of monitoring both community and nursing homes. There is a great need, but I feel that there is an onus on us to monitor community homes for teenagers and adults with disabilities. It is also important to point out that disability is a way of life. It is not a problem for those who are living it, but they feel that consecutive Governments and politicians — I include myself — have looked on them as a threat. If that is the case, what kinds of vibes are we giving out to them?

There is also a school of thought that there is a need for a whole-life assessment. That should be done when the person comes for the assessment, whether that person be a young child, a teenager or an older person. I wonder again whether the Bill talks about an upgrade to or renewal of an assessment. I have read it, but it was several weeks ago, and I cannot remember that specific point regarding assessments. I feel that there should be such a thing, since circumstances change.

I would love to think that this will be a simple, fast and easy way to treat those unfortunate enough to have a disability. It would be great if all the resources could go into delivering a service to those who need it most. The resources have to be put in place, and the sooner that can happen, the better. It would be terrible if an assessment were made only for a cut-off to be applied. People's conditions vary in their intensity over time, and they need different supports. The assessment should be for the whole of life, so that, when a child is born with Down's syndrome, for example, in the terrible days after the mother and father have been told of its condition, there should be someone talking to them about what will happen in six months or a year. Twelve months later someone should be there talking to them about the child's pre-school and primary years. That is where a good assessment might come into play.

Pre-school provision for the disabled is on a very small scale. I know that in Sligo approximately ten places are available. They are so valuable they are like gold dust. There is a great need to examine the service. It is vital as we are always being told that the early years are the most important of all our lives. We had a debate in this House a year ago on the subject of autism. When I researched my speech for that debate, I was delighted to find that the North Western Health Board had allocated €1 million to pre-school facilities for children with autism. It was a pilot scheme that was developed in Donegal, but the results were fantastic. If the child receives assistance between the first and second year, the results can be outstanding. The board was to make the same scheme available for Sligo-Leitrim, but I am not sure if that ever happened. The whole area of pre-schools should be examined and resources should be invested.

There is also an issue surrounding local authority grants for families that had to adapt their homes to suit a member with a disability. The grants were only available for a certain length of time. Such a system should come under assessment and plans should be made at an earlier stage. When the assessment is carried out, the location of the person with the disability should be taken into account. There is little value in including in an assessment report the need for a physiotherapist or a speech therapist when neither is available due to lack of manpower or resources in the area.

When speaking to representatives from NAMHI, I discovered they were happy that the Bill is to be reviewed every three years. Initially, it was to be reviewed every seven years. People with a disability feel that the only arm of the State to vindicate the needs of the disabled is the court system. If we block that avenue to people with a disability, we are doing a great injustice to them and to ourselves.

I have already spoken about pre-school education, but primary and secondary level education are also important. Third level education is now being examined in the context of people with an intellectual disability. People have a right to education, but the type of education is very important. I am talking about teaching people how to eat, sit and communicate with other people.

The Iona project in Sligo was run by Cregg House for a group of ten people aged 18. Unfortunately, the Department of Education and Science could no longer fund the project and it had to be cancelled. Sligo Institute of Technology has a course in speech and drama for eight students. This brings out immense creativity in the disabled people on the course. The mother that told me about it asked me to imagine the faces of those that are engaging in it. They are delighted to be part of a third level system. They are mixing with their able-bodied peers and they feel part of the whole student process. It also equips them for later life.

I have spoken before about the value of a job to a person with a disability. As able-bodied people, we cannot imagine what a job means to a person with a disability. It is a reason to get up in the morning. Disabled people with jobs feel they have a commitment to their job. They owe it to their place of work to turn up every morning. They are no longer stuck at home with their families and the job opens new social avenues. They go out with their colleagues and the Christmas party is a big issue in their lives. No money can provide that environment for a person with a disability, especially someone with an intellectual disability. He or she suddenly feels like everyone else.

Older people must not be forgotten either. I am not sure if the setting of a nursing home caters for the older person with an intellectual disability. On "Prime Time Investigates" last Monday, we saw that an elderly man with Down's syndrome was struck down with Alzheimer's disease at the age of 56. He had to leave St. Michael's House which is a nice home catering for people with an intellectual disability. That was the home he had known all his life. As he had Alzheimer's disease, he was put into a nursing home. We now know that the poor man passed away two weeks later. It was sad to see the pain on the faces of his brother and sister as they were interviewed on that programme. His sister wondered what was going through her brother's mind. What was he thinking in this strange house? Did he think he had been abandoned by his family? I felt very sorry for her because she has to live the rest of her life wondering about that. Regardless of the ailment that afflicts someone with a disability, provisions should be made to keep them in the homes with which they are most familiar.

Much has been done. People involved with the disabled will be the first to recognise that fact. There are areas that must be improved, especially in a society that is constantly changing. We must look after everyone, but particularly those with a disability. We talk about lifelong learning for everyone. This must also include the disabled.

I welcome the Bill, as well as the large allocation for this sector of €2.8 billion out of a total budget of €38 billion last year. It is the first time such an amount has been given to services for the disabled. When this Bill is passed, I hope those at the coalface caring for people with disabilities will be happy with it. The carers may not have complete trust in the service provider, but they must realise that we, as public representatives, want the best for the disabled in Ireland.