Bernard Durkan (Kildare North, Fine Gael) | Oireachtas source

I am delighted to have an opportunity to contribute to the debate on this landmark legislative proposal. It is timely and useful that we have an opportunity to focus on this issue, which has been with many of us for many years. I compliment Members who have contributed, including the Minister and Deputy McCarthy. The quality of the contributions reflects a knowledge and recognition of the subject matter that has not been all that evident previously, particularly during the boom times. When the country was booming and money was available for every use one could think of, it would have been a fine time to recognise the difficulties of families and children with special needs of all kinds and to put in place services that would benefit future generations. Deputy Lyons is correct to refer to society's responsibility. Society did not care because it was gorging itself at another fiesta. From time to time, it takes somebody to intervene to focus attention on the important issues in life and to recognise everybody is not fortunate to be able bodied, physically and mentally, everybody is not the same and some people have difficulties to overcome.

There are variations of autism. One also has other disorders such as attention deficit disorder, ADD, attention deficit hyperactivity disorder, ADHD, and minor variations thereof, all of which create a problem for the children in question and their immediate families. I recall a mother who appeared with her child at one of my advice centres, neither of whom knew what was wrong. However, both of them knew there was a problem but could not put their finger on it. The child's school did not know what was wrong either and did not know how to deal with the problem.

I pay tribute to the parents of children of special needs who, over the years, have gone to the ends of the earth to identify the problem with their child as they tried to obtain a diagnosis and have fought for the right of their child to have an even chance to survive in the impersonal, competitive world in which we live. While a great deal of work has been done in this area, we are still far from where we need to be.

It will have been clear to anyone listening to this debate that all Deputies who spoke understand the enormity of this issue and recognise the need to do something about it, as opposed to complaining and doing nothing. I compliment Deputy Michael McCarthy on having the foresight and focus to identify this issue.

I will quickly address the fundamental elements of this issue. It is crucial to children and parents that a diagnosis is made available at the earliest possible stage. Backup services, which parents frequently bring to the attention of Deputies, are also crucial. The current economic circumstances have driven both parents in many families into the workplace to pay the mortgage. The opportunities available to parents are limited as they are up against it regardless of which option they take. Given the pressures on both parents to work to pay the mortgage, how are they expected to have the needs of children with special needs attended to? In such circumstances, one parent will have to stay at home, thus placing even greater pressure on their ability to repay their mortgage. The competing economic demands and pressures on parents and families of children with special needs must be recognised, especially in the current economic climate.

As we get older, we tend to believe that children are not sensitive to the needs of others. This is not the case as children recognise such issues straightaway. Children with special needs must be able to believe they have an opportunity to compete and be independent in the competitive world. Many support groups have developed over the years to support the independence of people with special needs, which is a critical development. Children with special needs must have access to education that is capable of meeting their requirements and ensuring they secure as good an educational grounding as everyone else. If this means we must introduce special measures, so be it. That is the price society must pay because if we do not do so, we will pay a higher price though neglect.

A number of speakers referred to the economics of the issue. Deputy Kevin Humphreys, for instance, noted that we do not have money and I accept that. This is, however, without a shadow of doubt, the appropriate time to prepare measures that will fall into place when money becomes available. If we do not do so now, other competing factors will take precedence. For this reason, immediate provision must be made.

Facilitating people who have special needs, whether adults or children, generates significant economic benefits. Once a person with special needs becomes capable of fending for himself or herself, even if not fully, society benefits economically as the individuals in question are no longer dependent on society and have the wherewithal to do something for themselves. Many have done this very well and some have done it better than able bodied people. This is not a reflection on anyone. The economic benefit comes in two forms. The person no longer depends on society and he or she derives self-satisfaction from being able to do a job competently. This is of great importance to able bodied people and persons with special needs alike.

To return to the issue of the sensitivities of children, one of the saddest things one encounters is the look on the face of a child who knows, prior to a diagnosis, that there is a little problem and perhaps feels bad because he or she does not want his or her parents to feel bad. On the other hand, one has parents who know there is a problem and will go to the ends of the earth to have something done about it. In many cases, they spend years trying to achieve something for their child but their efforts are repeatedly frustrated.

I agree with the comments made about data protection. Legislation providing for data protection was introduced to try to ensure that people did not, for mischievous reasons, access the personal information of others to use it either for their own benefit or to the detriment of others. Data protection has, however, been used as means of protecting some people and to prevent public representatives and others from making representations without first obtaining permission. The legislation was not intended to be used for this purpose. It is ridiculous that when one tries to help out a family or individual, one is flummoxed because a data protection barrier is used purportedly to benefit the person or family concerned when this is clearly not the case. Data protection provisions need to be set aside as a matter of urgency. I am sure colleagues are experiencing the same problem I face when writing to lending institutions or health service providers on behalf of constituents, only to be asked to provide evidence of the consent of the individual in question before a reply is provided. This is utterly crazy. Members of Parliament are elected to represent their constituents and must make representations in favour of or against constituents' interests in the common good. That is our job and the purpose for which we are elected and if we are impeded in doing this job, a problem arises.

I will briefly discuss another issue I have tried unsuccessfully to have addressed over the years. We must encourage more medical research into autism. The incidence of autism in Ireland is high by European and global standards. I note Deputy McCarthy's point that improved diagnosis is providing a better picture of the condition. We can put a man on the moon and mankind has recorded many major achievements as well as disasters. In light of this, it is difficult to understand the reason it is not possible to have greater medical research in an area as vital as autism. The same principle or criticism applies to illnesses such as cancer.

A careful analysis of the incidence and diagnosis of autism across Europe would be beneficial to all concerned. Evidence suggests there is a higher incidence of heart failure and respiratory illnesses in certain regions of Europe. Such comparisons are valid and beneficial. I am a great believer in having the greatest possible amount of research made available to the medical profession in order that it can inform the general public.

If we can do something to address the issues at an earlier stage, we should do so, but we do not have that information.

Backup for parents and support for the individual through his or her life are necessary. As has been stated, education is a crucial factor, as is recognition of the fact that the individual is able to survive in the competitive world and work at whatever he or she chooses. We must revise our thinking and legislation on this matter and examine what level of support a family needs during the childhood of the person with special needs. As that person enters young adulthood in particular, we must try to provide whatever support is necessary. If an intervention is required, it should be made in a helpful and meaningful way without imposing on the individual.

Parents in these circumstances have presented to us all. It is a great process. Some commentators are disparaging about the degree to which elected Members of Parliament meet their constituents to learn of their needs, but doing this is important. Be someone an elected public representative at national or local level, nothing brings a point home more than when a person presents with a problem eyeball to eyeball and face to face. The representative hears from the individual exactly what his or her problem is.

In my Dáil experience of many years, parents will go to the ends of the earth, spend money that they do not have and raise loans to do what is necessary to help their children. We should give them the backup they need.

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