Seanad debates

Thursday, 17 December 2009

7:00 pm

Photo of Maria CorriganMaria Corrigan (Fianna Fail)
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I am grateful for the opportunity to raise this important matter.

There is currently a significant information deficit regarding the number of people who have been diagnosed with autism or as being on the autistic spectrum disorder. A group has proposed that the most cost-effective way of capturing the national statistics for autism and ASD within the country would be the inclusion of a question to this effect on the 2011 census. I ask if the Minister of State could indicate if this is a matter that could be considered and what would need to be done to bring this about.

There has been increasing awareness of autism as a disorder. It is only in recent times that the ability to diagnose it has become fine tuned. However, there are no national statistics on the disorder. Autism and autistic spectrum disorder has not been captured through the use of the intellectual disability database although this database is being amended to allow a capture of the national statistics in the area of physical and sensory disability. We need to keep in mind that the database will still only capture those people who are accessing services and have agreed to allow their details to be included in the database.

The lack of accurate statistics regarding the number of people with autism or who present on the autistic spectrum is a serious challenge in the area of service planning and provision and future demand for funding. I ask that the census of 2011 be used to capture the national statistics. This would present a very valuable tool for planning services and also provide an accurate picture of the profile of autism within Ireland in 2011.

8:00 pm

Photo of Pat CareyPat Carey (Minister of State (Government Chief Whip), Department of An Taoiseach; Minister of State, Department of Defence; Dublin North West, Fianna Fail)
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I thank Senator Corrigan for raising this matter. I am very familiar with this issue because in the preparation of the memorandum for the census I was closely involved with the Central Statistics Office which is within my area of responsibility. I will outline the current position. The Cabinet at its meeting last Tuesday agreed to the recommendation that the next census would be held on 10 April 2011. The Government decision of July 2008 agreed to the holding of a Census of Population in 2011 and that the CSO should immediately commence the necessary preparatory work associated with the holding of the census.

Part of the preparatory phase of all recent census in Ireland is to consult with users regarding the questions to be included on the census form. In this regard the CSO conducted a public consultation by inviting members of the public and various interest groups to make submissions on the topics to be covered and on the outputs to be produced. A notice to this effect was published in the national press in September 2008 seeking submissions, and all Departments were contacted for their input.

A census advisory group was set up in autumn 2008 to consider the submissions received and to advise on the questions to be tested in a pilot survey planned for April 2009. The census advisory group is representative of central and local government, the social partners, universities, research bodies and other users of census data along with the relevant CSO personnel.

Over 90 submissions covering 31 topics were received in total, among them submissions on the subject of disability and in particular on the subject of autism. In order to progress matters relating to disability the CSO convened a specific subgroup to consider the disability questions on the census form. This subgroup was composed of representatives from the National Disability Authority, the Equality Authority, the Disability Federation of Ireland and the National Federation of Voluntary Bodies.

The 2006 census contained questions on disability in two parts. The first part asked, "Do you have any of the following long-lasting conditions?". It then listed five different categories of disabilities for people. At the second meeting of the subgroup on disability the proposal to list specific, named disabilities within the disability question was discussed. Specifically, the proposal to make a special reference to autistic spectrum disorder or Down's syndrome, in the category of "A learning or intellectual disability" was considered. Having discussed and considered the matter, the group concluded it would not be appropriate, nor would there be enough room on the census form to list individual disabilities. There is simply not enough space on a census form to list individual categories of disability. However, in order to go some way towards accommodating the request regarding autism and Down's syndrome it was decided that the existing 2006 category of "A learning or intellectual disability", should be split into two separate categories namely, "An intellectual disability" and separately, "A difficulty with learning, remembering or concentrating". The group considered this approach narrowed the categories in the question and thus helped address the issue of autism while allowing the question to remain as inclusive as possible. It was decided that this new format of the question should be tested in the pilot survey.

The pilot survey was held on Sunday, 19 April 2009. It covered 32 enumeration areas spread throughout the country and the sample consisted of 11,400 households. The main purpose of the pilot survey was to test public reaction to the wording of a number of new questions, among them the new format of the disability question. The CSO, with the assistance of the census advisory group, has now finalised its analysis of the results of the census pilot. This analysis has indicated that the revised questions on disability tested in the pilot have been successful and accordingly these questions have been recommended for inclusion in the 2011 census questionnaire. The Government has now accepted this recommendation and agreed to the inclusion of these questions on the 2011 census form.

I know Senator Corrigan has a professional interest in this area. Much thought and consideration has gone into trying to find a way to accommodate the wishes of interested groups. She referred to the data deficit. The reply from the statisticians is that it is simply not possible to collect statistics on individual specific disabilities on a census form as there is simply insufficient space on the form. It is claimed this is not the appropriate tool for collecting this type of information and it is not realistic to collect information on individual specific disabilities on any household survey. The range and diverse nature of illness and disability is not suited to survey collection. It is more appropriate to gather such data from administrative records. I have a copy of the draft questions, which I will pass on to the Senator if she would like them.

The Senator asked why additional questions on autism cannot be included on the form at this stage, and I outlined the thinking behind that. I would like to think that in regard to this and other issues it will be possible to refine this information further down the road. The appropriate term escapes me but there will be more refinement information on households through the use of technology. Area postcodes, for example, will facilitate the collection of other data which has not been possible up to now. A geophysical technique, although perhaps that is not the right term, is being used to identify households and other issues. One of the matters raised was would it be possible to identify the composition of households - I am straying slightly from the subject of the Senator's matter - in terms of whether the members of them were same-sex couples, if they were legally married, separated and that kind of information. It is not yet possible to achieve that level refinement of data, but I suspect it will be possible to do so within a relatively short time.

Photo of Maria CorriganMaria Corrigan (Fianna Fail)
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I thank the Minister of State for his comprehensive response. He is the Minister who has been dealing with this issue and I thank him for coming to the Chamber to respond to this matter. I appreciate that. I thank him for his detailed response, especially the outline of the process that has been gone through.

I have some reservations about the wording the Minister of State has decided upon. It does not relate so much to this matter but, from my professional background, it occurs to me that to ask people to put a tick against either intellectual disability or a difficulty with learning, remembering or concentrating - the latter category will apply to people with dyslexic-type disability, people with acquired brain injury, attention deficit disorder and hyperactivity - will result in some refinement but it will collect all for such information. It may cause more confusion for the people completing the form than was intended.

If I understand the Minister of State correctly, he is saying that the form for the 2011 census is finalised and that it is not possible to proceed any further with changes in that respect. Is that correct? I take on board the comments he made off script that this possibly is not the most appropriate tool to try to capture this information, but because we have that deficit perhaps the appropriate course of action would be to pass this on to the Minister with responsibility for the disability sector and examine other more appropriate tools, as I appreciate what the Minister of State has said about the 2011 census. I thank the him again for his time.