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Normal View

Seanad Éireann debate -
Wednesday, 19 May 2004

Vol. 176 No. 15

Autism Services: Statements (Resumed).

I welcome the Minister and thank the Leader for facilitating this debate on autism. The issue of autism was discussed previously in the House. In the light of some of the decisions made by Government over the past five to seven years, it is important to carefully examine on an ongoing basis the decisions that have been made and how they have been implemented on the ground. There is no doubt that great strides have been made in recent years in the delivery of services to people with general disabilities, including the autistic spectrum disorders.

The philosophy of the Government, which is welcomed on all sides, is that people with a disability should be given the opportunity to live as full a life as possible and to live with their family and as part of the community.

The Government has made great efforts to promote mainstreaming, particularly in respect of younger people and children. The mainstreaming of children with disabilities in the standard education process has had a major impact not only on those with a disability, but also on children who do not have a disability. It allows such children to integrate with people with a disability at an early stage and helps them to understand and accept that people with a disability are still people — that they are very much real people with real ambitions and goals in life, notwithstanding their disability. One of the strongest elements of mainstreaming has been that it has ensured that young people learn to live with others from an early age, regardless of other people's physical or mental condition. It helps all people to live in a harmonious environment and to progress so that children have the opportunity to live to their fullest extent and to achieve the goals they set for themselves, regardless of the ultimate aim.

The Minister of State, Deputy O'Malley, might be familiar with the life story of Mr. Stephen Shore, an American advocate for persons with autism. I wish to give a little background detail about his life. He was born in the 1960s and diagnosed with strong autistic tendencies at the age of two and a half. The preferred means of dealing with people with disabilities, particularly children with autism, at the time was to progress towards institutionalisation. It was recommended that Mr. Shore be institutionalised at the age of four. His parents intervened, thankfully, to ensure that did not happen. They believed that early intervention plays an important role in determining the ultimate outcome of the person's life. Mr. Shore is now in his 40s, married and employed in the education sector in the US. His view is that autism involves perceiving and processing information from the environment in a way that is somewhat different from others. It is important that we recognise that such people operate in a way that is different, rather than being some aberration. We have to accept that people with autism focus on different things because their sensory receptors are set differently. The mainstreaming programme assists students and people progressing to adulthood to develop a level of understanding.

I am aware that huge strides have been made, particularly in the health boards. The Department of Health and Children and the Department of Education and Science are involved in dealing with children. It is obvious that the Department of Education and Science has a huge input. It recently announced the appointment of 350 extra teachers, who will make a huge difference when they come on board at the start of the next school term in September. Although there have been advances in the health boards at local and regional levels, there are difficulties. I suppose there are always difficulties in terms of the Government's delivery of services.

Certain facilities and professional services are not as readily available in some parts of the country as they are in more built-up areas. I have experience of a carers group in the Loop Head area of my home county of Clare. Senator Daly and I have met representatives of the group on two occasions in recent weeks. They outlined their grave concerns and difficulties. One does not become aware of the scale of the problem until it is brought directly to one's attention. There are 14 people under the age of 14 with intellectual disabilities, and disability generally, in the Loop Head area. Nine of the people in question suffer from autism. The causes of autism have been debated and research in the US has suggested that there may be a genetic link. Other American research has suggested that there may be a clustering effect as a result of environmental problems, such as pollution. Perhaps the Minister of State will clarify whether the Department of Health and Children has done any work in that regard.

Loop Head is a beautiful and remote region. It is a considerable distance from large centres of population such as Ennis and Limerick. People living in the area have limited access to services that are available in densely populated areas. Some parents are not in a position to take their children 30, 40 or 50 miles to the places where these services are located. People working on the land, mothers working in the home and people caring for elderly relatives cannot bring their children to centres some distance away. There is a huge drive and commitment by parents to ensure that their children are given the best level of care at an early stage. There is a need for early intervention in cases of autism. Delays in the delivery of such services are a cause of concern to those parents who feel their children will not get the same opportunities that are available to people living in more populated areas.

The problem is not a budgetary one because, while in many cases we argue for greater funding for particular areas, in this case the funding has been made available by the Government. The difficulty is in trying to get speech and language and occupational therapists to work in isolated rural areas. Many of them want to work in urban areas and in the private sector. I compliment the Minister of State and his Department on the progressive strides that have been made, particularly in commitments to funding. There is a necessity now, however, to look below the surface in implementing the delivery of autism services. We should make vacancies for speech and language and occupational therapists more attractive to candidates. The Department is funding a number of college students who will come on stream in the next two or three years, but there is gap at present.

A vacancy for a therapist in west Clare has been advertised for some time but has not been taken up. That is a matter of concern because while funding for the position is available, unfortunately, there is no candidate ready to take the job. The Department or the health board should make the post more attractive by way of offering a greater financial reward. The authorities could also consider recruiting therapists outside the State from places such as New Zealand, which has been to the fore in training speech and language therapists for autism.

The provision of such services is important for rural communities. I have used the Loop Head peninsula as an example but I am sure there are other isolated communities around the country to which Senators will refer. Such communities should have the necessary facilities to ensure that local children will receive the early intervention they need and deserve, in a manner that does not disrupt family and community life.

I compliment the Minister of State and his Department on the delivery of an autism unit in Ruane school, which is close by. That unit has become a benchmark for the people of the Loop Head peninsula who are trying to ensure the delivery of a similar service. The peninsula carers' group is working with the health board on such a plan and I hope there will be a successful outcome. While I realise the Minister of State has been helpful in the past in this regard, I ask him to assist us in any way he can now. We must try to make vacancies more attractive to the professionals we need to employ, either by way of better remuneration or through the delivery of a mix of services. People working in the private sector do not want to take on the onerous tasks associated with working specifically on autism. That has been one of the great difficulties in resolving the staffing problem.

I welcome the Minister of State. I wish to raise a number of issues with him which concern my area of Kilkenny. It has been brought to my attention that some schools are seeking funding for new buildings and development facilities for autistic children. One of them is the School of the Holy Spirit in Kilkenny City, which currently caters for 12 to 15 autistic children from the city and its environs. Last weekend, I was contacted by, the parent of a child in that school. Her son is 12 years of age. She was very upset because she knows that once he is 13 or 14 and leaves primary school, there is nowhere in Kilkenny where he can receive secondary education. I urge the Minister of State to contact his colleague in the Department of Education and Science with a view to expediting the building of the proposed new second-level School of the Holy Spirit for autistic children in Kilkenny city and its environs.

I have also been contacted by a group of parents who have set up an organisation with a view to establishing a school in Goresbridge in Kilkenny, in the former St. Enda's national school. This is an old building, which has not been used for a number of years but it is in good repair. There are some six to ten autistic children within that immediate catchment area. The group of parents is looking at this building with a view to establishing a new national school for the children of the south Carlow and east Kilkenny area, who are affected by autism.

I recently came across a surprising statistic, which I have not been able to verify. It suggest that one in every 100 children born in this State is affected by some form of autism, in a mild or more severe form. It is likely that everyone in this House and everyone in the country knows a family affected by autism, and we are familiar with the stresses it places on family life. This is an important issue, and I am glad we have the opportunity today for another discussion on it.

A number of surveys and reports on autism have been carried out over the past few years. There appears to be a large worldwide increase in the rate of those being diagnosed as autistic. In the US they are talking of an autism epidemic. According to figures released in the UK, approximately one child in every 100 features on the autistic spectrum. In this State there are significantly more autistic children coming into the system annually than in the past, and the demand for services to meet the needs of this special population will continue to grow. All Senators are familiar with the growing demands on national schools throughout the State to provide special needs assistants, and the problems involved. I urge the Minister of State to contact his colleagues in the Department of Education and Science with a view to providing extra funding for special needs assistants.

In 2002, 25,500 people were registered on the national intellectual disability database, representing a prevalence rate of 6.49 per 1,000 of population. The prevalence rate for mild intellectual disability is 2.4 per 1,000, and for moderate, severe and profound intellectual disability the figure is 3.7 per 1,000. From those figures we can see that the prevalence of autism in the State is significant in terms of numbers. Families affected by autism live under great pressures. In 2002 there were 23,000 people with intellectual disability in receipt of specialised services, representing 90% of all those registered on the national intellectual disability data base. Some 468 people, or 1.8% of those so registered, are currently without services and are identified as requiring appropriate services in the period 2003 to 2007. This number has reduced by 47, or 9%, from 2001. The remaining 1,930 people are not availing of services and have no identified requirement for services during the planning period of 2003 to 2007.

Most of this group are in the mild and not verified ranges of intellectual disability and their continued registration on the NIDD is being reviewed. However, the remaining 33% of this group have a moderate, severe or profound degree of intellectual disability. The need for continued monitoring of the circumstances of these people is highlighted. There are just over 8,000 people in receipt of full-time residential services, a net decrease of 194 since 2001. The number of people with intellectual disability accommodated in psychiatric hospitals continues to fall down by 162 since 2001 to 515. Approximately 22,500 people avail of day programmes, of this group 7,500 are in full-time residential placements and the remainder attend services on a day basis. Over 60% of all children and adults with intellectual disabilities live in a home setting with parents, siblings, relatives or foster parents. In 2002, just over 2,000 people were without services or without a major element of service. The provision of 1,633 full-time residential placements and 682 day programmes is required to meet the needs of this group in the period 2003-07.

In addition, 1,446 people will require residential support services during this period. Most service needs arise immediately. A group of 308 individuals living in psychiatric hospitals in 2002 has been identified as needing to transfer from these locations to more appropriate accommodation over a five year period. In spite of a significant investment in intellectual disability services in recent years and a corresponding growth in the level of service provision, the demographic factors outlined above are certainly contributing to a long waiting list for services, in particular for full-time residential places. In June 1997, Dóchas was established in response to the desperate need for an organisation to represent the needs of people diagnosed with autistic spectrum disorder, ASD. Dóchas works in collaboration with the Departments of Health and Children and Education and Science to highlight the individual needs of ASD people and also to secure appropriate services for their members. To date, Dóchas has acquired an office in O'Connell Street, Limerick which operates daily from 9 a.m. to 5 p.m. as a service and information centre. It operates a summer camp for children with autism for three weeks during the month of July. It holds monthly support group meetings for families with autistic members and it has been successful in highlighting the need for a respite centre for autism. The Red Hill respite unit opened in July 2000 and run by Rehab Care in association with the Mid-Western Health Board appears to be successful.

Dóchas is dedicated to creating hope and a practical future for people with ASD disorders within the embrace of family supervision. Dóchas is currently campaigning for respite services for adults in the Mid-Western Health Board area. However, such services are needed in all health board areas. Their main concern is that while respite care is available for children, families cannot avail of respite care once the child becomes an adult.

Children and adolescents with autism become adults with autism, but it is only in recent years that it has been recognised. Prior to 1943, the year Mr. Leo Canner identified the syndrome, people with autism tended to be labelled schizophrenic or mentally retarded. There are services available for children and adults who are either schizophrenic or mentally retarded but none specifically for those with autism. People with autism were placed in whatever services were available, even though those services were not designed to meet their needs and generally proved to be completely ineffective. This trend is gradually changing for children as advocates procure more services, designed specifically for people with autism. As the services available to adults with autism expand, the needs of adults are being discovered in more detail.

Adults with autism are emerging as people who very often require a continuation of the intensive training they received in childhood and adolescence during their educational years. Adults are able to retain skills they have acquired and are able to learn new skills when they partake in specialised services in adulthood. Without such a continuation of intensive services, however, many adults with autism will regress terribly. As children and adolescents with autism become adults, many of their needs remain the same, but many change. Adults require some skills that children and most adolescents do not yet need, for example adults need to be able to generalise their skills across a wider variety of environments because they live and work in the community. Adults also need to be prepared for the changes their body goes through as they mature. Adults need to be taught how to control their diet and related issues. Adults also need to be taught to engage in differing age appropriate activity, such as taking a walk or jogging instead of playing on a slide or a swing.

We have seen in the past number of years a significant increase in the amount of funding provided in this area. The figures have shown there is a significant increase in the number of people who will require these services in the course of the next few years. I urge the Departments of Health and Children and Education and Science to co-ordinate their approach to ensure that these people, many of whom were not diagnosed as autistic as a child, have appropriate services. I urge both Departments to continue to increase funding and to improve the services available.

I welcome the Minister to the House for this important debate on autism. The issue must be addressed. Additional funding amounting to €643 million has been addressed to health-funded support services for people with disabilities since 1997. This includes an additional €25 million in current expenditure, which the Minister for Finance made available in 2004 budget for services for people with disabilities. Of the €25 million, €18 million is being used in 2004 to provide additional emergency placements and extra day-services, especially for school leavers with autism and intellectual disability and to enhance the health related support service for children. Additional revenue and capital funding of €388 million has been provided since 1997 for services for those with an intellectual disability or autism. This has provided 1,700 additional residential places which are based in the main in the community and new residential respite places that were developed in 1997 and 1998. Between 1999 and 2002, approximately 465 additional dedicated respite place have been provided. In addition, 2,950 new day places were also developed. Alternative placements and enhanced level of services for the persons with an intellectual disability or autism have also been funded for those who were in psychiatric hospitals or other inappropriate placements. The number of persons with intellectual disability or autism accommodated in psychiatric hospitals in May 2003 was 438, which is a reduction from the number of 970 in 1996.

The new accommodation provided includes community-based homes and a number of residential and day complexes. Since 1998, approximately €16 million has been invested to enhance the early intervention, pre-school and multidisciplinary support services for children with autism or intellectual disabilities. Between 1999 and 2002, the Department provided additional funding of €11.43 million to enable health boards to put in place a range of support services for persons with an intellectual disability or autism who present with major behavioural problems and therefore require a more intensive level of support. One of the major difficulties facing the health services in delivering support services to children and adults with disabilities is the shortage of certain professionals, such as speech and language therapists, occupational therapists and psychotherapists.

Significant progress has been achieved in boosting the number of therapy training places. Last year the Minister for Education and Science and the Minister for Health and Children announced 150 therapy training places in speech and language therapy and occupational therapy. There has also been a concerted overseas recruitment drive on behalf of all health boards, the introduction of a fast track working visa scheme for health and social care professionals and the streamlining of the procedures for the validation of overseas qualifications. The success of these measures is reflected in the increase in the number of speech and language therapists and occupational therapists employed by the public health services since 1997. There has been a 100% increase in the number of occupational therapists and a 71% increase in the number of speech and language therapists.

While the statistics and figures are good and the Government is doing the best it can in a difficult situation, there are great demands on the parents of autistic children, of whom I know a number, particularly if they have other children. I wish to mention One to One, a group of parents in Sligo. This group has made me aware of its existence, particularly over the past two to three months. There is no classroom in mainstream education in County Sligo for children with autism. That is hard to believe in this day and age. One parent travels to County Mayo, a 100 mile round trip, twice a day with a child so that he can have an education or a chance of education.

I am glad to say the Department of Education and Science has been working on this matter and has identified two schools which are prepared to provide a classroom for the teaching of children with autism. This project is at an advanced stage and the North Western Health Board has signed up to the proposal to provide speech and language therapists, psychologists and whatever back-up service is needed in the classroom. I ask the Minister of State to speed up this project to ensure there is a school to which these parents can send their children next September because that is their main concern.

As a member of the North Western Health Board, I attended a conference on autism at which I listened with interest to a speaker who was a successful businessman. I met him afterwards and we spoke about autism, the different problems and so on. I told him he had a great knowledge of the problems associated with autism and he told me he was autistic. I could not believe it. The Government should do everything it can to ensure every child with autism gets the best chance possible to improve and educate himself or herself and, I hope, to lead a normal life.

I welcome the Minister of State. I am not too sure when we had the initial debate on this subject but I believe it was over a year ago. However, I deeply regret that little has changed in my county of Carlow in that time. It looks as if the planned autism units will not be up and running in Carlow this September. That will be another September and another school year gone even though there is an active parents' association in Carlow and despite its best efforts. I acknowledge the Department of Education and Science has made efforts but it took the wrong track initially with one school which it tried to encourage to take one of the autism units. The school was not in a position to take it because it needed major refurbishment and building works. The infrastructure was not in place in the school and the staff made that clear to the Department which did not listen and pursued the issue with the school for a number of months thus, unfortunately, wasting many valuable months in the process. That is disgraceful.

The Department must have a strategy. The carrot and stick approach whereby the Department encourages schools by saying that if they take an autism unit, the Department will fast track any building works planned for the school unfortunately does not necessarily work. It is not just a question of getting an autism unit for a school; there are considerable implications subsequently. Bringing children with autism on to a building site, which invariably most schools in the middle of extensions are, is not recommended. The Minister might check that with his experts. Children with autism need specialised care and a stable, familiar surrounding. The last thing one should do is bring them on to a building site.

I am involved in the Oireachtas Joint Houses Friends of Science group to which Luke O'Neill from Trinity College gave a talk in which he highlighted the lack of take up of the MMR injection and the implications of that. Parents have a real concern about the link between the MMR injection and autism. The person who originally spoke about that link has since been discredited. A link between that person and a legal firm working for another agency has been proved. How many children have taken up that injection this year compared to previous years? I am aware that to avoid an epidemic, whether of measles, mumps or otherwise, a 90% vaccination rate is required. The danger is that if children do not get the injection, it might go below that threshold which could have severe implications.

It is important parents are given as much information as possible to help them make up their minds whether they want their children to have the injection when they reach 18 months or so. Parents were put off the idea initially but now that the person who spoke about that link has been discredited, there is an onus on the Department of Health and Children to relaunch that campaign and make parents aware of all the facts. It is a difficult decision for parents to make. If they vaccinate their child and he or she develops autism subsequently, they will always wonder whether it was because of the injection. If they do not vaccinate their child and he or she dies from measles, they will be in an awful predicament. As far as I am aware, autism only shows up around the same time as a child gets the injection, so it is unfair to assume a link between both. The Department of Health and Children has a considerable role in this area.

I am dismayed by reports lately that the Department of Education and Science has plans for specialised education with a one glove fits all mentality whereby every school with 150 children will get special needs assistance. The INTO is also unhappy with these plans because it means the larger schools might lose out on extra help. In fact, smaller schools, which might not necessarily need the help, will get additional assistance.

The Minister made an announcement at Easter about the appointment of 350 new special needs teachers for schools, which is good news. However, the problem is that he did not indicate from where they will come. Based on past experience, these teachers will be taken out of the existing pool of teachers. In other areas, when extra personnel are appointed, that is what happens but in teaching, it means in effect redeploying existing personnel.

I have little confidence in the Department of Education and Science planning ahead. One has four years' notice that a child will be going to school. If every Department or company had four years' advance notice, they would more than likely be able to cater for whatever turned up. The Department of Education and Science, however, has got it totally wrong. For example, in the late 1980s, too many teachers qualified and there were not enough jobs for them. By the time I qualified in 1995, however, too few were doing so. Afterwards, the authorities came along and appointed a great many resource teachers. While that was a welcome step, the problem was that they came out of the classrooms. Unfortunately, there were not enough qualified people to replace them there. That is why there are now 2,000 unqualified teachers in primary schools alone. That is surely unsatisfactory and certainly does not benefit any of the children involved.

The Department of Education and Science must rely on there being an equal and opposite reaction to every action. If it appoints extra teachers and removes them from the mainstream, it must ensure that there are teachers to replace them. That is common sense. If one were going to the doctor's surgery tomorrow and he was out sick and had been replaced by someone who was not a doctor and had not gone to college or trained, but was suddenly substituting, one would not have confidence in that person. Yet that is happening in primary schools every day of the week.

I am sure that there are excellent teachers who are not fully qualified, but there should be more conversion courses. There are a great many BA graduates with higher diplomas who would love to do the conversion course for primary teaching but are not allowed to do so. The numbers were cut back this year, as I highlighted in the House. The Department is full of contradictions in that area.

In the Carlow case, there has been no progress in a year and a half and I am not sure of the solution. We have heard all about the extra resources and funding, but the reality is that the dedicated autism units have not materialised on the ground, as Senator Scanlon admitted regarding Sligo. In Carlow, it was proposed at one stage that parents travel with their children every day to Goresbridge in Kilkenny. A round trip of 50 miles every day would be totally daft. The planning section of the Department of Education and Science responsible for both building and general planning must anticipate events.

It is regrettable that so little has happened as a result of the Jamie Sinnott case. We had thought that there would be great strides in that area. I plead with the Minister that the building unit in the Department of Education and Science in Tullamore not use the carrot and stick approach with schools. If they are entitled to an extension or building, they should be given it. The two things should not be coupled together because that amounts to a form of blackmail. I hear from teachers that it is going on around the country.

The sooner we get these centres up and running, the better for the children and parents involved. A child is only in primary school for eight years and one year out of eight is a long time. In the Carlow case, two years have been wasted — almost a quarter of the children's primary school education — during which time they will not have the proper resources. That is definitely a scandal in this day and age.

I too welcome the Minister and congratulate the Department on its efforts so far. I am not saying that matters are ideal by any means, but progress is being made. I have read the statistics on funding for residential placements and respite and day places over the past few years. From psychiatric hospitals, we have moved towards community-based houses, which is to be welcomed. Some measures are coming forward, but the subject is very difficult.

Nobody has the real answer to how we can make progress on early intervention. We must start at that level. Perhaps it goes back as far as the maternity hospitals, where the problem may be detected, although, equally, that may not happen for a year or two. However, within two years of a baby being born, early indicators and identifiers will show up. That is where we must start, since it is the core element. If we can have early identification of the problem and examine it to see what is available at the pre-school level, we may be able to put a proper plan in place, identifying what measures can be taken regarding support and backup services for parents. There is a huge gap and that is the core of the problem.

As a professional in the field dealing with assessments at post-primary level and very often having to deal with attention deficit disorder, an area similar to that of autism, I feel it is too late at that stage. Parents suddenly realise when their child is ten, 11 or 12 that he or she is not fitting in with the mainstream and that something is wrong. It is not picked up at that point. The human resources of special teachers and educational and clinical psychologists are not available. There is a huge gap.

When the new legislation is introduced, I ask the Minister to consider the pre-school level and see that we have the parents with us from the maternity hospital stage. The health boards must be taken on board at that stage so that we have the psychologists, the home-school links and the public health nurses. There is a whole area of professionals at that level. We need not go into the issue of resource teachers or talk about speech therapists or anything of that sort at that stage. We must plan very early and try to introduce integrated arrangements for children aged two or three. That would help parents greatly. We must facilitate that as the child gets older. It is a very important issue and if we picked the problem up at that point, it might help relieve many of the problems.

There is no doubt that we have skipped on proper assessments. We do not have the educational or clinical psychologists, the medicine or the health board professionals in place. We must also use our skills in bringing the parents along with us. That resource area has been lacking in recent years. There is a significant overlap between the Department of Education and Science, in its delivery of such a programme for children with special needs, and the Department of Health and Children, which must take up the work with clinical psychologists and the other professionals who must be brought on board. One is not aware of what the other is doing, as I know, having worked in the system. If one has a plan for an assessment by an educational psychologist, one must wait until one can refer the matter to the Department of Health and Children. One wastes six or nine months before one comes to a final report, which is a huge gap. All that should be brought together.

I am not sure if the National Council for Special Education will be part of the new Bill or whether it has already been set up. However, that national council should be given a role because its members are the people to bring matters together quickly. One should not forget that the parents are waiting, wondering what will happen with their sons and daughters. We must try to facilitate them instead of writing reports. I have been sitting on such reports.

So has the Minister.

One would have the parents, the home-school liaison officer, the guidance counsellor and the public health nurse around one. At the end of the process, I never got a report back or knew what was happening to the child in question. We never seemed to be able to get to the grand finale and say that the child would enter a certain arrangement with a specific plan and programme. I ask the Minister, in the new Bill coming forward, to streamline all that so the parents, who are very vulnerable, will be able to say that at long last they are getting guidance for their child, who can go into a special programme. That programme will look after his or her needs whether it is an attention deficit disorder or involves a special education programme or a resource teacher. They need residential and respite care and that is a core issue of the new Bill.

The great shortage of professionals has been mentioned in terms of speech and language, occupational therapists and psychologists. It used to make my blood boil that 550 out of the maximum 600 points in the CAO system were required to get to university to do this course and yet children are crying out for occupational therapists. We are stuck because of academic procedures and the fact that the colleges will not provide places. In addition, the Department is not helping to create places. I am glad the Minister of State has tackled that issue. I hope he will pursue further——

That is cloud cuckoo land.

It is not cloud cuckoo land. I know what I am talking about.

Senator Ormonde, without interruption.

Talk to the parents.

All I want is that people who enter college can get into occupational therapy through the backdoor system if they are good at their jobs, in terms of dealing with people. They should be——

Staff needs should be assessed at both primary and post-primary levels.

I know that when people apply for occupational therapy, they have to get so many points to do the course. That is wrong and the system should change. That is all I am saying. There is nothing wrong with making such a statement.

It is avoiding the issue.

It is not avoiding the issue. It is part of the issue. We need professionals to deal with these young people. Occupational therapists are needed as are speech and language therapists. How do we get them?

I am glad the Senator recognises that point.

We have to get them through training in our own colleges. If not, we must go on a recruitment drive outside the country to get them. I am glad the Department is taking that on board, but more needs to be done. I am not saying it is all rosy. I work in the system, as does Senator Burke, even though he is smiling to himself as if he knows it all.

We have heard it all from the Senator, now. Dream on.

Senator Ormonde, without interruption. She has one minute left.

Thank the Lord.

I am glad to see we are doing our best. I am asking the Minister of State to ensure, when this new Bill is enacted, that all these structures are put in place and to try to provide a service. Anyone looking at the programme on television the other night would have such sympathy for parents who are trying to handle these cases and are not able to get the backup they need from the Department. There is a gap between the Department of Education and Science and the Department of Health and Children in terms of the implementation of services. I hope the Minister of State will correct that in time. Much has been done, but, as the saying goes, more needs to be done.

Where did we hear that before, "a lot done, more to do"? Senator Ormonde seems to be describing a different country from the one we are dealing with on the ground. The reality is that autism is not being dealt with in any real way. There is an extraordinary shortage of people at all levels. I agree with Senator Ormonde as regards the shortage of professionals. It is not just at the therapy end. Where are they? There is a shortage of educational psychologists. Those we have are running around the country testing. They do not have the opportunity or the time to plan programmes in consultation with the groups mentioned by Senator Ormonde and then to implement them. One is constantly being told about the number of people waiting for assessment. The real difficulty is what happens next. I know educational psychologists from Ireland who are working in the North or in the UK. The reason they will not work here is because of the total frustration of not being able to sit down with children who have problems and plan programmes that can be implemented and assessed. Their whole working life here is spent testing and testing, eventually getting reports out but without any subsequent follow-up.

Autism above all issues is extraordinarily complex. I have always failed in explaining autism to people, even to teachers who had not dealt with it themselves. It is important to talk to ordinary people about it. The autistic spectrum covers such a wide range that we really need people to have some clear understanding. People thinking or talking about autism should recognise that some autistic people have very high IQs. They are often very bright people with extraordinary creative drives. It is a condition, for want of a politically correct word, that is rooted in problems of social, emotional and communication skills.

In terms of communication, autistic people tend to interpret the absolute meaning of words. Whereas the average person might say, "I will kill you if you do that", an autistic child might well believe he or she is going to be killed. They cannot get out of that. The position is the same in terms of their social skills. The tactile sense is foreign to them. They are not emotional. They are not clingy. They do not like touching or hugging, in general terms. There is an emotional difference in the way they relate to people and places. If one takes the three areas of difficulty, emotional, social and communication, that is where the problem starts.

That might not be a huge problem in many cases, but what happens next is crucial. It is because of their different interpretation of words, their social and emotional responses, that they appear different. They recognise themselves to be different. They are distressed about this and it is from that level of distress that they will suddenly ask: "What am I doing wrong here?" Their interpretation of what they are doing wrong is also wrong. This just leads us into a riddle. It is a good idea to see autism as a type of see-through rubric cube because one can move in all sorts of directions within a shape, but at the same time one can hardly explain it to people. It is extremely difficult to understand.

Given its complexity, it ranges from what might be called mild to serious levels of autism. These are just my words; I am not sure precisely what they mean. Not all autistic children are the same. In fact, no two autistic children are the same. Then there are those with a high level of function with autism, normally referred as people with Asperger's syndrome. They need a different level of response.

One of the problems here is that a fully functional educational psychologist has to be a fully qualified teacher, with teaching experience over a number of years and must also be fully qualified as a psychologist, with experience in psychology for at least a couple of years. That entails a longer course than a surgeon's. I do not know whether people understand that is the calibre of person required. They should be able to go into schools and explain to pupils, teachers, parents or whatever what it is that is going on. To try to explain autism can be so difficult. The shortage of educational psychologists is a problem. Then there is a temptation to promote or allow people to become educational psychologists with a slightly lesser level of qualification than I have just outlined. They would be recognised, but they might not be fully trained teachers or psychologists. They might be fully trained teachers without a diploma in psychology or fully trained psychologists without teaching experience or qualifications. Any school will say that an educational psychologist must be someone who is a psychologist and a teacher who also specialises in education psychology. It is complex.

One looks at the autistic child and the level of response in social situations, the communication and emotional difficulties. One assesses how the child is interpreting "reality", the levels of distress and confusion and the behavioural difficulties as they arise and on that basis plans a programme. For that programme to be put in place, the teacher will need a high level of support at school level. When we talk in this House about more money for special education and psychology, forget about the broad vision: what we mean is a child with autism who needs support, very often one-to-one support involving one teacher and one pupil. If I said that on television or radio, people would say I was asking for the moon but there is no other way to do it. Along the Border there is considerable co-operation and a public representative from Northern Ireland told me that in Middleton in Armagh a full new autistic unit has been built but lies unused. That could cater for some of our problems as well as those of the South Eastern Education and Library Board in the North. We must encourage people to work together on both sides of the Border on that issue, particularly in the Border schools. Once an assessment is carried out, the psychologist should be anchored to remain in contact with the child instead of being sent off to do more assessments. The psychologist should meet the teacher, the principal teacher, maybe the parents and the support teachers in the school, to outline the programme for the child who has a particular difficulty in communication skills or in the emotional area. They can collaborate to help the child through the distress and confusion caused by the autism which is rooted in social, emotional and communication difficulties.

There is a shortage of all kinds of therapist, whether speech or occupational. We all know the work they do but until we must attend an occupational therapist ourselves or have a frozen shoulder and attend a physiotherapist, we do not understand how useful they are. Many people know someone who has had a serious stroke resulting in a loss of speech, or movement on one side of the body but who, with therapy over some months, can regain 90% of those powers. The same can be achieved for autism but because the problem is inside a child's head, it is not as obvious. That is why we must put these services in place.

I may stand up here and make a strong case for the national development plan, more roads and investment in railways, and the opening of the Sligo-Limerick line and so on but if I have to make a choice, I will. If someone tells us that the development of extra DART stations is being delayed in order to put the money into dealing with autism, I will support that and will give the Government fair dues for the decision. I can understand Senator Ulick Burke's point about the frustration at our level because we cannot see this happening. We must grasp this issue and do the business here because otherwise we are letting down the children and their families.

Several schools in east Clare, close to the Minister of State's Limerick constituency, have done good work to deal with autism in primary schools and have been quite successful. We all know the difficulties families who have a child with autism face in trying to find support and help; they will do anything for their child. In addition, they have another difficulty which sees their relatives, friends and neighbours involved in a constant series of fund-raising activities for some special school or unit which does not have money to provide the service. This is an extra tax on these people in the absence of Government resources and distribution of tax revenue. I urge the Minister of State to consider this.

I am pleased to have had the opportunity to address this issue. It is important that the Houses of the Oireachtas discuss such issues. The Minister of State needs to bang the table and ensure the Cabinet listens and makes money available for the services we want to achieve in this area.

I welcome the Minister of State to the House and the opportunity to contribute to this debate. I am optimistic that children with autism can go to their local schools. One of the greatest problems facing us in the west is that there has been a long battle for services for autism usually involving child care services for young children and school transport to schools where the health board or the Brothers of Charity provide services. It is hard for families to provide education for children with autism. I agree with my colleagues that there is a need for educational psychologists. It is a matter of trying to provide one-to-one attention in a local setting if possible, which should be the case. However, much of the battle seems to concentrate on appropriate school transport for a young person. This refers to perhaps a direct taxi service rather than minibuses or school buses travelling long distances to bring a child to a special educational centre. This is often raised in my constituency. In a town like Ballinasloe, young children with a disability might receive services from the Galway County Association, the Brothers of Charity take over until the children are 18 years old and then parents are left to wonder how to get further training or employment for people with autism.

The link between autism and creativity is an interesting one. Senator Scanlon referred to people who give lectures or talks and say they suffer from autism. I read a review recently of a book entitled Autism and Creativity by Professor Michael Fitzgerald, Professor of Child and Adolescent Psychiatry at Trinity College. He explores the link between autism in men, among whom it is more common, and exceptional ability, and looks at the reality of the situation rather than the Hollywood version in movies such as “Rain Man” and “Forrest Gump.” He claims that Asperger’s syndrome, the high functioning autism, is very common among well-known historical figures including high achievers, Newton, Einstein, Darwin and Warhol. Such people may behave inappropriately in social settings and may be egocentric and hypersensitive but they are very capable of original ideas. They may lack common sense but they have above average intelligence.

This is the double-edged sword of autism, revealed by a deficit in social situations for which the compensation might be exceptional mechanical ability and a capacity for detailed observation. Many prominent philosophers, politicians and writers display classical features of autism which demonstrates the importance of understanding this problem. Professor Fitzgerald emphasises the need for autistic and non-autistic people to understand the condition for the autistic person to be fully included in society where everyone has strengths and weaknesses. This is particularly true of attempts made to provide a suitable environment for people with autism. I was invited to a farm in Claregalway, County Galway, which provided courses for people with autism. I think there is a similar farm near Kinnegad. I was most impressed with the commitment of those who provide the service. I urge the Minister of State to consider the extension of such schemes, as the programme in Claregalway appeared to be most useful.

Local authorities provide schemes, such as the disabled person's housing grant. It was stated in a report of the Disability Federation of Ireland that, in addition to that scheme, there should also be a scheme for chronically ill young people, those with significant disabilities which affect their housing needs. It especially recommended a three year programme to provide appropriate accommodation in the community. This issue should be examined, as the needs of people with disabilities tend not to be addressed by existing housing grant schemes. Disabled people are easily overlooked, especially at a time when many people are seeking to have their housing needs addressed. Local government housing policy can play a pivotal role in addressing the needs of people with disabilities in their own communities. People with disabilities should not be trapped in unsuitable and potentially dangerous housing situations because their needs are not addressed by existing schemes.

It is important that the issues of education and housing for people with autism are addressed. The Minister for Health and Children and the Ministers of State at the Department should be congratulated on the extra funding and services available in the Western Health Board region. It is important that this funding be increased. For too long we have exported the problem to other health board areas, especially to Dublin and the eastern region. Appropriate services should be provided by the Western Health Board. It is important that children have access to services in their own schools and home area. I hope this will be the approach taken by the Department, health boards and local authorities. People should not have to leave their home regions to access services for autism.

I welcome the Minister of State, Deputy Tim O'Malley, and congratulate him on his efforts to tackle the serious difficulties experienced in the area of special needs education.

Everybody, especially the parents of those with special needs and autism, recognises the past neglect that has occurred in this area. On 17 October 2001, the Minister of State's predecessor stated in the House that in the past, the extent to which support services were provided was entirely dictated by resource availability in any given year and that all this changed in 1998 when the Government took the unprecedented step of deciding that all children with special needs in the primary system should have automatic entitlement to the supports they required, irrespective of their level of need or location. In effect, the Government introduced a demand-driven system where the needs of the child rather than the availability of resources became the deciding factor.

Almost three years' later the same situation pertains. In many instances, access to and the provision of services to people who have been identified as being in need, still remain inadequate and unavailable. That is the tragic reality. Many parents and siblings of autistic people throughout the country are grappling with this problem. The Minister's endeavours heretofore are totally inadequate to address the needs of young people with autism.

Educationalists agree on the need for early identification and attention. Until recently GPs were unable to identify autism. Parents usually brought the matter to the attention of medical professionals. We need to see change.

The Minister must respond to the disturbing situation that exists among certain groups dealing with autism. I refer the Minister of State to an article in Phoenix magazine of 9 April 2004 which raises concern about various autism facilities throughout the country. It drew attention to the egoistic behaviour of a certain family in pursuing the governance of societies dealing with autism. The article referred, in particular, to two centres, one in County Galway called Tigh Ronan and another at Dunfirth farm near Enfield, County Meath. I urge the Minister of State to allay the fears of the many people who worked hard to provide such centres to deal with local needs. The management and utilisation of funding of these centres must be thoroughly investigated. Parents were unaware of what was taking place. While other such centres exist, the article focused, in particular, on the two to which I referred.

The Western Health Board, of which I was a member, was asked to intervene in this matter on several occasions. Litigation was subsequently initiated and the Irish Society for Autism was challenged regarding its power to change the locks on certain properties thus denying people access to services.

Debate adjourned.
Sitting suspended at 12.30 p.m. and resumed at 1.30 p.m.
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